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The

Essential Guide
to Brain Tumors

caregiving

CAUSES

treatment options

seeking help
symptoms

clinical trials

support

understanding the brain

survivorship

TREATMENT TEAM

DIAGNOSING

complementary medicine

The Essential Guide
to Brain Tumors
National Brain Tumor Society (NBTS) is fiercely committed to
finding a cure for brain tumors. NBTS funds research aimed at
moving industry forward and is making new strategic alliances
with industry, government, and academic institutions to drive
research to therapies as fast as possible.
Patients and caregivers need to have the necessary information
to deal with their diagnosis and advocate for themselves as well
as play a vital role in advocating for public policies that meet the
critical needs of the brain tumor community.
Visit www.braintumor.org to get more information about
research, public policy advocacy efforts, and how you can get
involved and make a difference in the fight against brain tumors.
Visit www.braintumor.org/help to find:
• a list of some of the most frequently asked questions
that may be of assistance to you
• online information and resources for brain tumor patients,
families, and caregivers
• information on tumor types, treatment options, and
where to find a treatment center
• how to connect with others in the brain tumor community

www.braintumor.org

Dedication

Table of Contents

Karen Osney Brownstein and Elizabeth “Libby” Stevenson conceived of and

Acknowledgments................................................................................................................................................................................. 1

authored the original National Brain Tumor Guide in 1986 for brain tumor
patients and their families. They created the Guide to offer a supportive and
jargon-free resource to the brain tumor community. The Guide continues
to speak in very human terms to those confronting the trauma of their own

Introduction............................................................................................................................................................................................. 3
Chapter 1: Understanding the Brain............................................................................................................................................. 5
The Central Nervous System......................................................................................................................................................................... 5
The Sections of the Brain................................................................................................................................................................................ 6
The Internal Nerve Structures of the Brain............................................................................................................................................. 7

Chapter 2: Diagnosing a Brain Tumor.......................................................................................................................................... 8

medical crisis, letting them know that they are not alone, and that there are

Brain Tumor Symptoms................................................................................................................................................................................... 8

vast resources available to them during a time of confusion and need.

Scans and Imaging Techniques.................................................................................................................................................................... 9

Neurological Examination............................................................................................................................................................................... 8
Biopsy....................................................................................................................................................................................................................... 12

As a member of the Board of Directors of the National Brain Tumor Foundation, one of the legacy organizations

Chapter 3: Known and Possible Causes...................................................................................................................................... 14

of today’s National Brain Tumor Society, Karen’s tireless work—always laden with great wit and enthusiasm—was

Incidence Rates.................................................................................................................................................................................................... 14

centered on the creation of the Guide. Karen—a teacher and author— survived her brain tumor but was stricken

Brain Tumor Trends........................................................................................................................................................................................... 14

with a lung disease that caused her untimely passing in 1989. Her spirit and her vision continue to thrive in this new

Known and Possible Causes........................................................................................................................................................................... 16

updated version of the Guide.

Direction for Future Studies........................................................................................................................................................................... 18

Elizabeth “Libby” Stevenson served as the first Executive Director of the National Brain Tumor Foundation and later
on its Board of Directors. Libby was diagnosed with a brain tumor in 1980 and survived her disease for over 20 years
until she passed away in 2003. Her gracious manner and infectious smile served as an inspiration to all who met her
and provided hope and compassion to other brain tumor survivors. She lived by her motto “always, there is hope”
and was an ever-vigilant advocate for brain tumor patients. The Essential Guide to Brain Tumors is proudly dedicated to
these two pioneers in the brain tumor community—Karen Osney Brownstein and Libby Stevenson.

Chapter 4: Brain Tumor Types........................................................................................................................................................ 20
Classifying Brain Tumors................................................................................................................................................................................. 20
Primary Brain Tumors....................................................................................................................................................................................... 21
Glial Tumors
Astrocytoma...................................................................................................................................................................................................... 21
Pilocytic Astrocytoma................................................................................................................................................................................... 22
Low-Grade Astrocytoma.............................................................................................................................................................................. 22
Anaplastic Astrocytoma............................................................................................................................................................................... 22
Glioblastoma..................................................................................................................................................................................................... 22
Brain Stem Glioma......................................................................................................................................................................................... 23
Ependymoma................................................................................................................................................................................................... 23
Mixed Glioma.................................................................................................................................................................................................... 24
Oligodendroglioma......................................................................................................................................................................................... 24
Optic Nerve Glioma........................................................................................................................................................................................ 25
Subependymoma........................................................................................................................................................................................... 25
Non-Glial Tumors

Karen O. Brownstein

Elizabeth “Libby“ Stevenson

Acoustic Neuroma.......................................................................................................................................................................................... 26
Chordoma.......................................................................................................................................................................................................... 26
CNS Lymphoma.............................................................................................................................................................................................. 26
Craniopharyngioma....................................................................................................................................................................................... 27
Hemangioblastoma........................................................................................................................................................................................ 27

National Brain Tumor Society | www.braintumor.org

National Brain Tumor Society | www.braintumor.org

Medulloblastoma............................................................................................................................................................................................ 27
Meningioma....................................................................................................................................................................................................... 28

Acknowledgments

Pineal Tumor..................................................................................................................................................................................................... 28
Pituitary Tumor................................................................................................................................................................................................ 29
Primitive Neuroectodermal Tumors (PNET)....................................................................................................................................... 29
Rhabdoid Tumor............................................................................................................................................................................................. 30
Schwannoma.................................................................................................................................................................................................... 30
Recurrent Tumors............................................................................................................................................................................................... 30
Metastatic Brain Tumors.................................................................................................................................................................................. 31

National Brain Tumor Society (NBTS) wishes to thank all the people whose
generous contributions of funds, expertise, and good will made possible
the publication of The Essential Guide to Brain Tumors.

Other Tumor-Related Conditions.................................................................................................................................................................. 31

Chapter 5: Brain Tumor Treatments............................................................................................................................................. 32
Tumor Board......................................................................................................................................................................................................... 32

We are grateful to the following health professionals who volunteered their assistance in the writing of The Essential
Guide to Brain Tumors.

Medical Management........................................................................................................................................................................................ 32
The Treatment Team.......................................................................................................................................................................................... 33
Surgery.................................................................................................................................................................................................................... 34

• Terri S. Armstrong, MS, APRN, BC

• Peter Gruen, MD

Radiation Therapy............................................................................................................................................................................................... 37

University of Texas M.D. Anderson Cancer Center,

University of Southern California,

Chemotherapy...................................................................................................................................................................................................... 39

Houston, Texas

Los Angeles, California

Clinical Trials......................................................................................................................................................................................................... 40
Biologic/Targeted Therapies.......................................................................................................................................................................... 42
Complementary and Alternative Medicine (CAM)................................................................................................................................ 44

Chapter 6: Symptom Management............................................................................................................................................... 47
Physical Symptoms............................................................................................................................................................................................ 47
Cognitive and Behavioral Symptoms......................................................................................................................................................... 48
Headache................................................................................................................................................................................................................ 49
Seizures................................................................................................................................................................................................................... 49
Fatigue...................................................................................................................................................................................................................... 51
Blood Clots (Thrombosis)................................................................................................................................................................................ 51
Other Symptoms................................................................................................................................................................................................. 52

Chapter 7: Survivorship...................................................................................................................................................................... 53
“Survivor” Defined.............................................................................................................................................................................................. 53
Dealing with Emotions and Grief.................................................................................................................................................................. 54
Managing Follow-up Care................................................................................................................................................................................ 56
Returning to Work............................................................................................................................................................................................... 58

Chapter 8: Suggestions for Caregivers........................................................................................................................................ 60
Taking Care of the Caregiver.......................................................................................................................................................................... 60
Getting and Managing Information............................................................................................................................................................. 60
Seeking Help......................................................................................................................................................................................................... 61
Impact on the Family......................................................................................................................................................................................... 62
Emotional Issues.................................................................................................................................................................................................. 63

Glossary..................................................................................................................................................................................................... 65
Index........................................................................................................................................................................................................... 71

• Mitchel S. Berger, MD

• Philip Gutin, MD

University of California, San Francisco

Memorial Sloan-Kettering Cancer Center,

Medical Center, San Francisco, California

New York, New York

• Melissa Bondy, PhD
University of Texas M.D. Anderson Cancer Center,
Houston, Texas
• Susan Chang, MD
University of California, San Francisco
Medical Center, San Francisco, California
• Terri Chew, MPH
University of California, San Francisco
Medical Center, San Francisco, California
• Tim Cloughesy, MD

• Yuriko Minn, MS
Stanford University, Stanford, California
• Kathleen Mogensen, MS, ANP-C
Roswell Park Cancer Institute, Buffalo, New York
• Margaretta Page, RN, MS
University of California, San Francisco
Medical Center, San Francisco, California
• Kendra Peterson, MD
Stanford University, Stanford, California
• Michael Prados, MD

University of California, Los Angeles

University of California, San Francisco

Medical Center, Los Angeles, California

Medical Center, San Francisco, California

• Charles Cobbs, MD

• Raul Rodas, MD

California Pacific Medical Center, San Francisco,

Central Florida Regional Hospital, Neurohealth

California

Sciences Center, Sanford, Florida

• Nancy Conn-Levin, MA
Monmouth and Ocean County Brain Tumor Support
Group, Inc., Oakhurst, New Jersey
• Mark R. Gilbert, MD
University of Texas M.D. Anderson Cancer Center,

• Evan Ross, LAc, DOM
Cedars-Sinai Medical Center, Los Angeles, California
• Edward Roy, PhD
University of Illinois at Urbana-Champaign, Urbana,
Illinois

Houston, Texas

National Brain Tumor Society | www.braintumor.org

What is a brain tumor? Acknowledgements A brain tumor is a mass of cells that have grown and multiplied uncontrollably. regimen. Anderson Cancer Center.000 people in Canada are diagnosed with a Professional Contributor • Mary Lovely. family and friends who donated their Houston. answer your questions. MD • Scott and Cheryl Norris • Richard Pittman Methodist Hospital HealthSystem Minnesota. Take it one day at a time. symptom management and the The Essential Guide to Brain Tumors has been designed latest research about potential causes. Weisberg. Anderson Cancer Center. then dazed and numb the next. to organizations that can provide additional information. PhD University of California. The Essential to educate you. treatment options. 1 Editor • Edythe Vassall Design • e. cells in another part of the body. • Karen Smith. University of Texas M. North Carolina • Marcelo Ho Why not me? The answer is because no one is immune. 2009. • Brain tumors are the second leading cause of National Brain Tumor Society | www. rather than focused on one particular a brain tumor. Many of the information does not pertain to your needs.org (or secondary) brain tumors come from cancer All rights reserved. Texas The information in this publication is subject to change. Stanford. believe in yourself and your plan. CNRN University of California Davis Health System. 2005. This is something that can only be Stanford University Medical Center. and encourage the participation and support of your Throughout the Essential Guide you will find personal friends and family. diagnosed with primary brain tumor in 2010. PhD Copyright © 2004. The diseased cancer-related deaths among children ages 0-19. The personal and practical questions come to mind: why Essential Guide to Brain Tumors is not meant to replace me? Where will I turn for help? How will my family cope medical advice. • Mike Coda “Why me? That’s a natural question but I doubt if you’ll ever get an answer. It shatters your sense of well-being and personal as well as offer emotional and practical advice for the reader is advised that information obtained from a physician security. CS assemble your plan to combat it. guide you Guide offers information for caregivers and references through the treatment process and life after treatment. face what you’re up against. or behavior.D. That’s why integrative treatments. This Essential Guide is an informative experiences and helpful recommendations from brain tumor survivors. tumor survivors.000 people in the United States and 10.braintumor. you may find that some overwhelmed.org .D. The tumor. your family are expected to make important decisions about your treatment and future. It then discusses a brain tumor diagnosis. Hemangioblastoma survivor. MD Introduction Tumors. One moment you may feel angry and type of tumor or treatment. Healing Focus information in the publication and that this publication does not and cannot purport to address facts and circumstances • Susan M.braintumor. MSN. many of which are confusing and frightening. you and quest for answers. 2007. diagnosed in 1986 • Becky Withers No one can prepare to be diagnosed with a brain resource to help you navigate new medical terminology. information and support.” — Linda Kendall. • William and Janet Thoma Minneapolis. 2012 brain tumors originate in the brain and rarely Writer • Radha McLean National Brain Tumor Society spread to other parts of the body. done by the patient's physician. and most of all. This process is called metastasis. Sacramento. and Every question you ask and decision you make is im- survival tips.2 THE ESSENTIAL GUIDE TO BRAIN TUMORS • Raymond Sawaya. Writer. communications Cover Design • National Brain Tumor Society National Brain Tumor Society | www. but to inform you and assist you in your emotionally and economically? In a short time. It is common to experience a flurry of emotions challenges you may face. MD Many thanks to the following NBTS volunteers. The information in this publication is not meant to be legal advice or replace the advice of an attorney. tumor types. California • Paul Sperduto. You will also learn about conventional and portant in determining what’s best for you. LCSW particular to any patient. RN. Wake Forest University School of Medicine.g. An cells spread to the brain by moving through the estimated 4. Minnesota • Ximena Vergara • Geline Tamayo. California The Essential Guide to Brain Tumors begins with a look at how the brain functions. Texas time and expertise reviewing The Essential Guide to Brain • Edward Shaw. Winston-Salem. Metastatic www. brain University of Texas M.030 children under the age of 20 will be bloodstream. Primary Facts About Brain Tumors • Each year over 190. RN. It is Me! This is • Rachel Kimball where you are today. Because the Essential Guide is • Jeannine Walston should be considered more up to date and accurate than the and feelings when you receive the news that you have comprehensive.org primary or metastatic brain tumor. San Francisco or recommendation of any particular form or forms of therapy. 2010.braintumor. Sponsorship of this publication California does not imply the National Brain Tumor Society's endorsement • Margaret Wrensch. Houston. San Francisco.

Meninges There are three membranes called meninges that cover the brain and the spinal cord. follow-up care. sphenoid. Soffietti R. July 2010. lumbar. Xu J. standard treatments for brain tumors • Metastatic brain tumors (cancer that has spread The first step in understanding brain tumors is learning all you can about include surgery. The brain is a soft. and ethmoid bones. 10. and two that extends from the brain stem down the length of parietal bones. Skull The skull is a framework of eight cranial and 14 facial bones that protect the brain from being damaged. thoughts.4 • Enhancing the quality of life of people with brain • There are over 120 different types of brain tumors. 4&5 1 2 National Brain Tumor Society | www. sacral and coccygeal. tumors requires access to quality specialty care. the overall incidence of all different kinds of brain tumors can cause the associated symptoms. Jemal A. 2010 Courtesy National Cancer Institute. The PNS is made up of nerves that connect the CNS to the sensory organs. Three membranes. The the spine. MD The spinal column is composed of 33 irregular. Cancer Statistics. occipital. the brain of an adult weighs approximately three pounds. children with brain tumors requires research into either case can be life threatening. making effective treatment very complicated. Mutani R. and sensation. The brain controls our five senses in addition to our emotions. and rehabilitative The essential components of the central nervous system services. which are The spinal cord is a long. spool shaped bones called vertebrae that are stacked one on top of the other. 249. Statistical Report: Primary Brain and Central Nervous System Tumors Diagnosed in the United States in 2004-2006. their 39. Published online.000 persons per year. The cranium. Steinkopff. the dura mater. The spinal column protects the spinal cord. nerve fibers and supportive cells to relay messages to the rest of our body. The ventricles contain a liquid called cerebrospinal fluid (CSF) that circulates throughout the CNS. and glands. the causes of and better treatments for brain Brain tumors. Bethesda. radiation therapy. thoracic. Spinal Cord bones in the cranium: two temporal bones. In spinal column. are often left with long-term side effects. Pages 1432-59. Journal of Neurology. emotion and movement.org . and the fifth leading cause of cancer-related effects can be devastating. National Brain Tumor Society | www. and chemo­ from other parts of the body) occur in an therapy. The spinal cord controls movement and areas where the bones in the skull meet are called sensation. IL.braintumor. Although as many as 72 percent of children will survive. made up of four major bones: the frontal. Management of Brain Metastases. Hinsdale. The CNS is different from the peripheral nervous system (PNS). Understanding the Brain • Because brain tumors are located at the control • Brain tumors are the second leading cause of cancer-related deaths in young men up to age center for thought. The second layer. physical coordination. Vol. Central Brain Tumor Registry of the United States.braintumor. which fuse at the top of the skull. ages 20-39. blood vessels. The outermost layer. or layers of tissue called meninges. the part of the skull that covers the brain. surround the brain and spinal cord. is movement. et al. Improving the outlook for adults and • Brain tumors can be malignant or benign. Ruda R. and the meninges. deaths among young women. American Cancer Society. is a thick membrane.5 primary brain and central nervous system tumors (CNS) is 18. Siegel R.4 THE ESSENTIAL GUIDE TO BRAIN TUMORS 1. spongy mass of nerve cells and The CNS uses billions of nerve cells. October 2002. Then you will better understand how in adults and are often treated differently. 3 everyday thoughts and behaviors.71 per 100. 2010. cylin­drical mass of nerves located on the sides and base of the skull. and in (CNS) are the brain and spinal cord. CA: A Cancer Journal for Clinicians. 2 • At present. estimated 20 to 40 percent of people with cancer the brain: its structure and the role each part of the brain plays in our • Brain tumors in children are different from those and are the most common type of brain tumor. The spinal column is divided into five sections that extend from the base of the skull to the tailbone: the cervical. they • In the United States. The Central Nervous System clinical trials. used either individually or in combination. supportive tissue connected to the spinal cord. the center of the brain are four connected hollow spaces called ventricles. speech. No. There are four other Spinal Column CBTRUS. 2010.org 3 CBTRUS. suture lines. The The brain and spinal cord are protected by the skull. muscles.

pons. problem solving. Each hemisphere is further divided into four sections called lobes: the frontal. and bowel and bladder control. each of which controls a distinct aspect of human movement and be­havior. in Cerebellum many connections to the brain and the spinal cord.org National Brain Tumor Society | www. functions controlled by the cerebrum pass through the into meaning. temporal and occipital lobes. related to movement and the senses. The thalamus acts as a path- includes three parts: midbrain. The parietal lobes process all messages being sent to and from the brain regarding The Internal Nerve Structures of the Brain effect. appetite. The brain stem also contains pathways language. memory. parietal. The occipital lobes control vision. Illustration: Laurel V. certain aspects of speech/ and balance. This. the left temporal lobe is considered the dominant lobe. shape. The cerebrum also houses many internal nerve struc- There are three spaces between the layers of the tures. right occipital lobe processes what is seen out of the left to secrete the hormones that regulate growth. brain stem. located at the base of the brain. and gender-related functions (i. and lactation). menstruation. The white the rate that water is secreted into the urine. For this reason. The temporal lobes manage Hypothalamus breathing and heartbeat and our sleep/wake cycle. The ventricles contain the choroid plexus.UNDERSTANDING THE BRAIN 7   6 THE ESSENTIAL GUIDE TO BRAIN TUMORS called the arachnoid. Each lobe Frontal Lobes The frontal lobes make up the front portion of the cerebral hemisphere. initiative. important section regulates automatic body activity such as heart rate. Cross-Section of Brain space. nerve fibers called axons or white matter. located in the center of the brain. physical sensations. and medulla how we are aware of the parts of our own body. focusing of attention. Cerebrospinal Fluid (CSF) Cerebrospinal fluid is a clear liquid that surrounds the brain and spinal cord. A brain tumor can affect function (movement and/or behavior) depending on where in the brain the tumor is located (see Brain Structures and Their Functions. It cushions and protects them against injury. It is located in the center of the brain. has Pituitary Gland The cerebellum is responsible for coordinating muscle The pituitary gland. and sweating. The left temporal hormone. The brain stem. The transmits messages to the pituitary gland. blood Much of the brain’s activities occur in the gray matter. page 9). whereas the left cerebral hemisphere controls the right side of the body.braintumor. All most auditory activities in the brain by translating words The hypothalamus. The space between the skull and dura mater gland. The controls different behaviors and sections of the body. Schaubert   Courtesy of: Charles B. sleeping patterns. texture matter located in the center of the two hemispheres. such as the thalamus. In addition. The right cerebral hemisphere typically controls the left side of the body. vision. motor and sensory functions. inhibition. Ventricles The ventricles are four connected. The brain stem contains the 12 cranial parietal lobes also help us to make calculations. is found groups and controlling small movements and balance. and the left occipital lobe processes what pressure. read brain. surrounded by the cerebrum. fluid-filled cavities located in the center of the brain. and the third layer. It has two sections called the right and left hemispheres. telling it made up of bodies of nerve cells known as gray matter. CSF circulates through the four ventricles and the subarachnoid space. and physical expressions of emotions such as lobe controls language comprehension in most people. It also is involved in our conscious awareness of nerves. It is bral hemispheres. blushing. parts of speech. moods. It The occipital lobes are in the back portion of the cere- is connected to the hypothalamus. pituitary gland also produces a hormone that controls matter contains nerve fibers that allow communication National Brain Tumor Society | www. The CNS has a closed cir­culatory system that drains into the bloodstream. also called the hypophysis.braintumor. There is also a small. which control hearing. between the brain and various parts of the body. major body movements. judgment. hypothalamus and pituitary meninges. The internal layers of the cerebrum are made up of is seen out of the right field of vision. dry mouth. called the pia mater. weight. Wilson. are thin membranes.e. The Sections of the Brain The brain is divided into sections. located behind the brain stem. The space between the arachnoid and the pia mater is called the subarachnoid space. Cerebrum The cerebrum is the largest area of the brain. and going from the spinal cord to the brain for messages the sleep/wake cycle. including cerebral hemispheres. thirst. MD Parietal Lobes The parietal lobes are in the upper central portion of the cerebral hemispheres. of the temporal lobe that controls the brain’s ability to temperature. sense of smell. abstract thought. The hypothalamus The outer layer of the brain is called the cortex. The space between the different messages being sent to the brain and for send- dura mater and the arachnoid is called the subdural ing messages from the brain to other parts of the body.org . pain. reasoning. The way for most of the messages that pass to and from the oblongata. testosterone secretion. The parietal lobes are responsible Thalamus for interpreting the meaning of physical sensations to The thalamus is a pair of egg-shaped masses of gray Brain Stem determine such factors as size. These structures are responsible for processing is called the epidural space. Corpus Callosum The corpus callosum connects the left side of the brain to the right side of the brain. memory. and write. the thyroid. field of vision. They interpret spatial orientation and above the hypothal­amus. Occipital Lobes at the part of the brain between and behind the eyes. the Temporal Lobes The temporal lobes form the lower portion of the brain stem controls involuntary functions. The frontal lobes control many of the brain’s activities including attention. growth form long-term memory patterns. The cerebellum. controls the amount of water in the body. structures that produce cerebrospinal fluid. and consistency.

It does not use x-rays. the doctor may order a brain scan or refer the patient to a neurologist or neurosurgeon. smell. which slides through a long. This part of the exam includes checking the following functions: • Eye movement and pupil reaction • Hearing • Smell Frontal lobe • • • • • • • • movement • initiative reasoning • inhibition behavior • mood memory personality planning Temporal lobe decision making judgment • language comprehension • behavior • memory • hearing • emotions telling right from left calculations sensations reading writing Occipital lobe • vision Cerebellum • balance • coordination • fine muscle control Pituitary gland Brain stem • hormones • growth • fertility • • • • breathing blood pressure heartbeat swallowing • Tongue movement and sensation National Brain Tumor Society | www. • Language The most commonly used scan for detecting brain tumors is magnetic resonance imaging (MRI).and short-term memory A brain tumor takes up space within the skull and interferes with normal • Judgment and reasoning brain activity. seizures. Using three-dimensional image of the tumor. vision. causing a buildup of CSF and mental functions. taste. who will then order a scan. function of the patient’s nervous system. The patient may have more than • Gait one scan or different kinds of scans depending on the • Sensation type and location of the tumor.braintumor. person­ality changes. The doctor will begin by taking a and swelling. open. National Brain Tumor Society | www. healthy tissue. • Long. problems in the ability to process • When the patient first noticed symptoms information.braintumor. Magnetic Resonance Imaging (MRI) An MRI is the standard imaging technique for suspected brain tumors. which can be most severe in the morning • Seizures or convulsions • Difficulty thinking. Focal deficits include damage to sensory or • How the patient feels at the present time movement abilities. Brain Tumor Symptoms Neurological Examination A brain tumor can block the flow of cerebrospinal fluid A neurological examination tests a person’s physical (CSF) between the ventricles. There are • Calculation two types of MRI scanning equipment: standard and If responses to the exam are not normal. several types of imaging • Personality changes • Weakness or paralysis in one part or one side of the body • Vision changes Types of Imaging Techniques the doctor will conduct a series of tests to measure the and mental alertness. or Abnormal or diseased brain tissue absorbs more dye there is enough room for the patient’s body inside the hearing • What procedures or tests have already been performed • What treatments or interventions have been Brain Structures and Their Functions Parietal lobe • • • • • prescribed • Loss of balance The doctor will perform a physical exam to detect the type of scan is effective in capturing a different part and This is injected into a vein and flows into brain tissue. • How often the symptoms occur A tumor of the spinal cord can block the communication between the brain and nerves through­out the body. Diagnosing a Brain Tumor than normal.org function of the brain. The most common symptoms include: • Headaches. a scan compiles an image of the signals emitted from normal and abnormal tissue. or focal deficits. The MRI detects computer technology. shifting the brain or pushing against the skull. and invading and • Motor skills damaging nerves and healthy brain tissue. speaking. Some types of scans use a contrast agent (or contrast To prepare for a standard MRI scan. The contrast agent allows • Reflexes the doctor to see the difference between normal and • Balance and coordination abnormal brain tissue. An MRI is a scanning device that uses Scans and Imaging Techniques magnetic fields and computers to capture images of the A scan is a picture of the internal structures in the brain on film. The location of a brain tumor influences the type of symptoms that occur. the patient will be asked to lie down on a long table. It provides pictures brain. providing clear images of most tumors. or finding words • Personality changes signs and symptoms associated with a brain tumor. Each dye). brain by photographing it from various angles. Edema can lead to medical history and asking questions about: symptoms including headaches. After asking questions to de­termine these conditions.DIAGNOSING A BRAIN TUMOR 9   2.org . • Nausea or vomiting Thanks to modern technology. cylindrical tube with a narrow opening. • Whether the symptoms are worsening This can lead to problems with movement or physical • The intensity and location of headaches sensation. or a ferromagnetic substance such as gadolinium. This exam is called a neurological examination. which permits doctors to create a same way a digital camera takes a photograph. and physical • Confusion and disorientation scans are available to help diagnose brain tumors. called brain edema. This is because different functions are controlled by different parts of the brain. Although • Changes in sense of touch. A tumor can cause damage by increasing pressure in the • Muscle strength brain. and speech disorders. A specialized machine takes a scan in much the from various planes.

help diagnose the type of tumor and evaluate tumor aid doctors before and during surgery in various ways. Usually. because they are more sensitive to radiation than adults. this information can help doctors make informed decisions. sensory. response to therapies. What is the difference between invasive and non-invasive procedures? Contrast-Enhanced MRA (CE-MRA) Contrast-Enhanced MRA is a form of MRA that uses contrast agents to look at the movement of blood through the region of interest. The types of metabolites com- Brain tumor patients will usually have more than one MRI procedure during the course of treatment. table that slides into a round opening above his or her head. it can be used in surgical planning to avoid injuring nerve bundles (ganglia) that have been shifted or displaced. Magnetic Resonance Spectroscopy (MRI Spect or MRS) Magnetic Resonance Spectroscopy is a type of MRI that measures the levels of metabolites in the body.org having a CT scan. radi­ation therapy. or other treatments. bone. The activity of metabolites in tumors is different from that of normal mately 45 minutes. increasing rapidly. Some people well. monly measured with an MRS are choline. and N-Acetyl-Aspartate (NAA). soft tissue.braintumor. A non-invasive pro­cedure means that fMRI identifies the motor. Since the diffusion of water along the nerve can be measured with this technique. called the eloquent cortex. such as a contrast dye. or insertion of an instrument Functional MRI provides instant images of brain activity or foreign material. MRA is used to find the presence Other types of imaging techniques may also be used to help diagnose and treat brain tumors. cardiac monitor. Hydrocephalus is a condition marked In preparation for a CT scan. types of implanted medical devices. and blood vessels. This is a concern for people who have multiple CT scans and for children. ventricles and spinal cord. are allergic to iodine should inform their doctor before contrast agent injection • Cover your eyes with a towel displaced due to the tumor mass. taking pictures of the brain from different directions. and computer technology. surgical clip. In some institutions. called radiation necrosis. lactate. The information gathered is then sent to a computer. and sensation. movement. The procedure lasts approxi- important in planning surgery. An MRS may also be used to determine the grade of a tumor and to distinguish Computed Tomography (CT or CAT Scan) active recurrent tumor cells from dead cells destroyed Computed Tomography combines sophisticated x-ray by radiation treatment. and when I enter the room. Patients to know the technicians in the MRI area quite may request earplugs to reduce noise. It is less invasive than an arteriogram. Patients should advise the doctor if they have a pacemaker. CT scans involve exposure to ionizing radiation. iodine is of blood into the tissues. into by tracking the use of oxygen in the brain as it occurs. so the –Glioblastoma survivor patient is not enclosed. The scan takes approximately 15–45 minutes. A neurosurgeon is a medical doctor who performs surgery on the brain and spine. leading to a buildup of certain patients because the intense CSF in the skull. they hand me feel claustrophobic during MRIs and ask for a sedative a plastic rosary. Here are some tips to help make the procedure more comfortable: Magnetic Resonance Angiography (MRA) Magnetic Resonance Angiography generates an image of blood vessels and blood flow without the use of a contrast agent. Diffusion and Diffusion-Tensor MRI Flow Sensitive MRI shows the flow of CSF through the can also be helpful when removing tumors that cause amining bone and tissue calcification and hemorrhage.” An open MRI machine does not have a cylinder. magnetic fields can damage some Functional MRI (fMRI) incision of the skin. There is some discussion among tissue. During “I concentrate on my family and all the wonderful the scan. If a patient changes health care providers. It hy­drocephalus. Hospitals typically reduce the dose of radiation given to children from adult levels to levels based on the weight of the child. Flow Sensitive MRI (FS MRI) These forms of MRI measure the diffusion (random motion) of water in the tissues. CT has the ability to show a combination of • Bring your favorite music CD a traditional blood-vessel exam that requires injecting • Wear pants that have a comfortable. National Brain Tumor Society | www. Other people request an open MRI. the patient lies on a long translates it into pictures. the body. They know that’s all I need to beforehand to relax. the patient will not be able to move around.DIAGNOSING A BRAIN TUMOR 11   10 THE ESSENTIAL GUIDE TO BRAIN TUMORS speech. The scan makes a slight clicking sound as it moves. I have come caused by the electronics within the machine. Unlike other medical imaging techniques. and language there is no puncture of the skin or insertion of centers of the brain. make it through. loose waist a contrast agent.org . as well Perfusion MRI uses contrast agents to examine the flow as help detect swelling and bleeding. Patients who MRI is used to grade certain types of tumors. the patient will hear loud banging sounds. or facial tattoos. However. It is wise for patients who have had frequent x-ray exams and parents of children who have brain tumors to keep a record of their x-ray history. An MRI may not be an option for by blockage of CSF pathways. or one that is in an area of the brain that has a large number of blood vessels. perfusion the contrast agent used during a CT scan. What is a contrast agent? A contrast agent or contrast dye is a substance used to help detect a tumor by highlighting abnormal tissue in a scan. This method is normally used before surgery to remove a tumor with a large supply of blood.braintumor. The CT circles around the patient’s head. It is used when examining An invasive procedure involves a puncture or National Brain Tumor Society | www. These techniques MRI compared to the standard or closed MRI. CT is effective at ex- • Wear short sleeves if you will be receiving a and position of the blood vessels leading to the tumor and determine whether or not these vessels have been Perfusion MRI CT images can determine some types of tumors. can help radiologists determine precisely which part of the brain is handling critical functions such as thought. This information is cylinder. What is the difference between a neurologist and a neurosurgeon? A neurologist is a medical doctor who specializes in diagnosing and treating illnesses in the brain and spine. which CT is a valuable diagnostic tool and its use has been tumors in the spinal cord and at the base of the skull. Metabolites are chemicals produced by living cells. fMRI foreign material into the body. things we have been blessed with. This minimizes radiation over-exposure. An MRS can detect patterns of activity that may doctors concerning the quality of the images of an open There are several types of MRI scans.

people who have metal implanted in their body in any form (including tattoos) should let the doctor know about it before scheduling the procedure. Allergic reactions can include rashes. A contrast dye is injected into the catheter. • Gadolinium.braintumor. cells. Or. A patient can get a second opinion to confirm the initial diagnosis and to compare the suggested courses a piece of the skull in order to get access to the brain. a warm sensation. recurring tumor Important Points About Diagnostic Tests • Some people may have an allergic reaction to iodine. difficulty breathing. anesthesia during this procedure. The process of cell division is called taken at the time of a craniotomy or needle biopsy. National Brain Tumor Society | www. Yes. a pathologist will examine the tissue under a microscope. In some cases. the bone therapy. Several classified during a biopsy. arteries in the brain. This may be because the MIB-1 labeling index (LI) would be expected to be 0 more than one grade of tumor cells exists within the percent. An MIB-1 LI of greater than 30 percent indi- same tumor.braintumor. the patient is injected with glucose that has been labeled with radioactive markers. A catheter having an MRI. those higher than 10 percent. • Because an MRI uses magnetic fields. Guided by a CT cells present in the tumor. the diagnose the type of tumor. Sometimes the pathologist may not be the MIB-1 labeling index. The results help the doctor or MRI that is performed prior to the procedure. tell your doctor. by measuring the rate at which a tumor absorbs glucose (a sugar). To do this. Open Biopsy removing healthy tissue from the area surrounding narrow. able to make an exact diagnosis. PET requires using highly complex. the tissue may be sent to another institution for additional input. where he or she will The biopsy provides information on types of abnormal be unconscious during the procedure. If you know you are allergic to iodine. may undergo a general anesthesia. the contrast agent used with an MRI. Patients should let the doctor is placed in the groin and fed up to carotid or vertebral know their concerns before scheduling an MRI. or in rare cases. chapter 5). Once a sample is obtained. the tumor. The per­centage of cells that are actively provides the information to make a diagnosis of the dividing within the tumor are measured by a test called tumor type. PET may cause temporary headaches but has no is also used during brain mapping procedures (see other known side effects. and cells destroyed by radiation treatment. Some insurance companies require that a patient get a second opinion before undergoing major After the tumor is debulked or resected. the contrast agent most commonly used for CT scanning. A biopsy is a surgical anesthetic to numb the skin and a sedative medication procedure in which a small sample of tissue is taken and remain awake during the procedure. it is possible that the tumor studies have shown that gliomas with an MIB-1 LI of 10 grade will be misdiagnosed.org . If cells of only one grade are removed and cates that tumor cells are growing very rapidly. If no cells are actively dividing.org National Brain Tumor Society | www. PET is not widely used to evaluate recurrence of a brain tumor. Closed Biopsy A closed biopsy (also called stereo­t actic or needle Biopsy biopsy) is performed when the surgeon wants to avoid Often used in combination with a scan of the brain. Patients can ask is usually put back into place. the patient from the tumor site and examined under a microscope. This is called a sampling percent or less have a more favorable prognosis than error. A second opinion should be obtained as soon as possible to avoid delaying treatment. • Medication can be given to help relieve the Angiography is a common technique used to outline symptoms of anxiety or claustrophobia when the position of blood vessels in the brain. Doctors use PET scans to see the difference between scar tissue. hol­low needle through the hole into the tumor to remove a sample of tissue. and x-rays follow its path through the blood vessels of the brain.DIAGNOSING A BRAIN TUMOR 13   12 THE ESSENTIAL GUIDE TO BRAIN TUMORS Positron Emission Tomography (PET) Positron Emission Tomography is a supplementary test that can be used to gain additional information after an MRI. of treatment. Then the PET scan measures the brain’s activity and sends this information to a computer. Then the Should a person consider getting a second opinion after receiving an initial diagnosis? otomy is a surgical procedure that involves removing pathologist will write a pathology report. At this time. expensive equipment and can produce results that are difficult to interpret. The patient may be given a local the type and grade of a tumor. or when the tumor is in an area of the brain biopsies are the most accurate test for identifying that is difficult to reach. A crani- may be performed on the tumor tissue. Angiography Pathology Report Brain tumors grow because their cells divide to make A pathology report contains the analysis of brain tissue more cells. which creates a live image. It proliferation. Further tests or analysis An open biopsy is done during a craniotomy. The patient is under their family physician to recommend other doctors. rather than its structure. PET scans provide a picture of the brain’s activity. surgeon drills a small hole into the skull and passes a There are two kinds of biopsy procedures: an open and a closed biopsy.

most brain tumors medical care. that cancer registries record all brain tumors regard- These trends include age. Survival is strongly related to a person’s age and tumor type. now mandates malignant brain tumors in the 1980s and 1990s. much higher than related deaths in the United States among women. These and other findings suggest that further slightly lower for people with malignant meningiomas research about genetic differences needs to be done to (55 percent). there is some evidence that cultural. and US. National Brain Tumor Society | www. each person’s prognosis is tumors. Reported rates for males than in females. some of the increase.org affects survival.S.braintumor. for five years.000. and malig- about one out of five. This would seem to indicate for gender differences. benign and malignant tumors of the brain and central nervous system (CNS) are expected to be diagnosed in 2010.3 times greater in males than females. a greater availability of neurosurgeons.KNOWN AND POSSIBLE CAUSES 15   3. The age and number of MRIs. about 35 percent of people diagnosed However. Trends may provide some insight into the possible causes of brain tumors. behind the eyes) occur equally in males and females. Access to lymphomas. The frequency of scans decreases as the lowest reported rates. which are the most common type of brain tumor. page 15). National Brain Tumor Society | 800 934 2873 | www. but the the year 2002. They The average age that an adult is diagnosed with a include better diagnostic methods using CT scans and brain tumor is 57 years.org . about 7 per 100. The Benign Brain Tumor Cancer not certain. particularly among children and the elderly.) Geography and Ethnicity Rates for neuroepi­thelial tumors (gliomas) are almost There is a lot of variation in the trends of brain tumor 1. Some primary malignant brain tumors tend to be higher in more than twice as many females as males.000 are diagnosed with a primary malignant brain tumor. Several explain variations in brain tumor incidence rates among different ethnic groups. geography. On average. Incidence Rates According to the Central Brain Tumor Registry of the United States (CBTRUS). such as Northern Europe and the United have a protective effect against certain types of brain need to be monitored by periodic scans throughout the States. the five-year survival rate in According to the American Cancer Society. Many researchers suggest vary depending on the type and location of the tumor.000 persons per year in the U. Figure 1 Another cause may have been a change in brain tumor Each year over 190. Others can be kept health care is one influential factor. atypical. making up 34% and 32%. and improvements in medical treat- evenly between the ages of 0 and 19. Among all brain tumor patients. Environ- different. Countries such as India and the Philippines have tumors. and behavioral patterns. There was an increase in the incidence of primary Brain Tumor Trends Registries Amendment. People with glioblastoma consistently have the the eleventh among men. and we encour- ments for elderly patients. Survival and Prognosis When diagnosed with a brain tumor. Meningiomas and gliomas are the most frequent types of primary and other nervous system tumors. benign brain tumors were not counted ously considered benign were changed to the status number of brain tumors being registered. These factors include: • Age. patients along geographic and ethnic lines. but it is cases. More investigation is nec­es­sary to account survivor’s lifetime. are diagnosed with a primary brain tumor each year. and of those.000 people classification in the mid 1980s.000 people in the United States and 10. These differences cannot be attributed only meningiomas (including benign. Some gliomas previ- in Canada are diagnosed with a primary or metastatic (secondary) brain of malignant.braintumor. However. practices. Tumors in cranial and spinal time goes by. that the difference is due to better diagnosis and report- nerves and in the sellar region of the brain (the area just ing in more developed countries. This may have led to an increase in the tumor. Known and Possible Causes mental hazards are suspected. or 20 percent of pediatric cancer to differences in access to health care or in diagnostic nant). there are many trends among people who get them. Trends in age will I live?” The answer is never certain. Brain tumors that grow slowly have a better prognosis than fast-growing tumors. gender.S. Glioblastomas. In contrast. particularly in pediatric brain This suggests that many different factors influence the No individual is a statistic. For this reason. longer children diagnosed with brain tumors is distributed things a patient usually wants to know is “How long life expectancy. age patients and families not to focus on statistics. one of the first Survival rates are strongly related to several factors. different tumor types (see figure 1. involving and whites. 62. Tumor progression from benign to malignant negatively * These figures do not include metastatic brain tumors. will survive Incidence and Mortality geographic differences do play a role in the disease. meningiomas affect under control for many years with treatment. Brain tumors are the second incidence of meningioma is nearly equal among blacks poorest survival in all age groups. may be due to other. In the system cancers is about 72 percent. gliomas affect more whites than blacks. • Tumor type. or with a malignant brain tumor in the U. About 18. The incidence rate of primary tumors of children between ages 0 to 19 years is approximately 5 cases per 100. and germ cell tumors are more common in Many brain tumors can be removed. This chapter will provide an overview of trends found in studies of brain tumor patients. children from five to 20 years of age and young adults from 20 to 44 years of age have higher survival rates than children under five and adults aged 45 or older. ethnic. unknown causes. the five-year survival rate is 69 percent. passed in 2002. primary The incidence rate for malignant brain tumors in children under age 20 with brain and other nervous brain tumors are among the top ten causes of cancer- Japan is less than half that in Northern Europe. The find- brain tumor survivors don’t experience recurrence countries with more accessible and highly developed ings of one study suggest that female hormones may while others do. less of their type. (Previous to results have not been conclusive.930 primary.71 per 100. although no major risk factors have been clearly identified. respectively. Although the causes of brain tumors are in cancer registries. For all people with most common malignancy among children. but the average. environmental influences. Age and Gender explanations have been offered to account for this. Many studies are looking into the causes of brain tumors.

org . there have been few It is possible that parents exposed to carcinogens in the studies of any links to adult brain tumors. studies show a positive dictory and inconclusive. but in adults who work in manufacturing of pesticides or a negative link to glioma. There have been findings which raise the possibility that certain allergies and common infections (including chicken pox and Some hereditary syndromes. However.” fore. studies are contra- of brain tumors are linked to heredity. brain tumors. Here are some of the findings: Hereditary and Genetic Influences Relatively low doses of radiation used to treat tinea capitis (ringworm) and skin hemangioma in children or infants have been associated with relative risks for nerve sheath tumors. as N-nitroso compounds have been clearly identified Higher risks of pediatric brain tumors were reported for as carcinogenic (causing cancer) to the nervous system. RF fields cannot cause ionization or types 1 and 2. tumors are linked to interactions between genes and tox- petroleum. cosmetics. and certain chemicals probably brain tumors. However. be surgically removed. Workers are rarely exposed to is called. individual’s lifetime exposure. The Karnofsky Performance Scale (KPS) is a means of rating the patient’s overall functioning level. It seems likely that the majority of brain removed. The results of several studies. it is extremely difficult to determine any However. There is still much work to be done to systematically identify the molecular alterations in primary brain tumors and to develop methods to treat them. Viruses. influence the risk of both pediatric and adult brain found increased risk in children exposed before birth tumors. Chemicals in the Workplace and the Home Some workers are exposed to carcinogenic or toxic “Doctors may prescribe a regimen that may be substances in the workplace. There- Concern over possible health effects of using cellular call a “genetic suscep­tibility” for developing cancer. including Genetic susceptibility means their bodies may not be as efficient at processing certain substances. Unlike ionizing ra­diation. People who are more functional at time of diagnosis do better than those who are more disabled. and Allergens Several types of viruses have been shown to cause brain tumors in experimental animal studies. are associated with a higher risk of de- effective. and how much of it can be develop cancer. Second primary Some studies of diet and vitamin supplementation seem focused on the role of pre. but gather- veloping brain tumors. such as x-rays or gamma rays. Given the great or clothing. Avoiding cured food and eating more fruits and vegetables that are high in anti­oxidant vitamins may lessen the risk of developing cancer. cigarette smoke. and glioma. but they don’t prescribe hope. painting. There is little agreement about the nature and extent of the risk factors. it is unclear if these professionals. radio frequency (RF) exposure is an important concern. At present. four out of five studies of pesticide consistently associated with brain tumors. Differences in the type of treatment and the patient’s response to it also affect survival. farming. or repairing damaged DNA. Studies of chemical exposures in the home have lymphoblastic leukemia as children. One study showed a high rate of prior therapeutic irradiation among patients with glioblastoma. National Brain Tumor Society | www. In fact. or working in industries involving: N-nitroso compounds are present in cured meats paper and pulp. I repeat: tempted to pinpoint links to brain tumors. There has been compelling evidence that workers in the a person may have. von Hippel-Lindau syndrome and neuro­fibroma­tosis and workers in certain parts of the petrochemical. they may more easily More study is needed.and postnatal pesticide ex- brain tumors also occur more frequently than expected to indicate that dietary N-nitroso compounds might posures in pediatric brain tumors. Exposure to Infections. brain tumors are treated by surgery. most of the findings are uncertain. where 100 represents normal functioning and 0 indicates the end of life. Other people may have what researchers patients themselves. A history of seizures has been fertilizers. Since it is so difficult to design meaningful studies on humans. Head Injuries and Seizures groups. Known and Possible Causes To date. brain tumors. researchers have been unable to make any definite telephones has prompted studies looking at the relation links between brain tumors and specific chemicals. even between cell phone usage and an increased risk of those known to be carcinogenic. but since applicators have shown there is an increased risk for brain tumors are known to cause seizures. RF fields are called non-ionizing. solvents. and sources. cell cycle. the only proven causes of brain tumors are rare hereditary syndromes. of sources. and oil industries are at greater risk for ins in the environment. workplace might possibly increase the risk of cancer in their children.braintumor. studies have examined and continue to examine many factors that may cause brain tumors. Because of this. Yet “genetic predisposition. A recent large study especially among patients treated with radiation therapy. and immunosuppression that gives rise to brain lymphomas. Yet these causes account for only a small percentage of cases. used either or mu­tations (defects) of crucial genes that control the individually or in combination. oil or chemical refining. production of synthetic rubber and polyvinyl chloride. However. because such a small percentage Serious head trauma has long been suspected as a developing brain tumors. it’s the brain tumor one single chemical.” as it it’s not science that has made a quantum leap ing evidence is difficult.KNOWN AND POSSIBLE CAUSES 17   16 THE ESSENTIAL GUIDE TO BRAIN TUMORS • Location. When exposed shingles) may play a role in preventing brain tumors. Ionizing Radiation Treatment of disease with therapeutic ionizing radiation (including x-rays) is a strong risk factor for brain tumors. These are suspected to play a role in forming • Functional status. These compounds are also produced inside air and space. The authors of the study that brain tumor patients (or their mothers) have have urged further investigation of pesticide exposures generally consumed more cured foods than control during pregnancy. cause of brain tumors. removing National Brain Tumor Society | www. Researchers have observed in some studies to flea and tick pesticides. the topic has received little attention. whether or not the tumor can to toxic agents in the environment. The large number of different tumor types (more than 120) is another obstacle. It is important not to confuse RF fields with ionizing radiation. Molecular studies have found deletions (missing parts) radiation therapy and chemotherapy. printing and graphic (nitrites). A mother’s exposures might have a Diet direct impact on the developing fetus. therapeutic ra­diation. there is no conclusive proof of this. probably accounts for less than five percent of in brain tumor survival. his or her amount of exposure to these compounds and the variety children might then be exposed to the carcinogens.braintumor. empowered. As for drugs and med­i­ca­tions. certain chemical substances known exposures before conception might damage his DNA. This determines the type of symptoms carcinogens. fathers working with.org –Neuro-oncologist radioactivity in the body. They have become interact with others to increase or decrease risk. One theory is that chemical carcinogens the human body as the digestive process breaks down from the workplace might remain on a parent’s skin food (including vegetables) and drugs. It is difficult to measure amounts of exposure to suspected risk factors and to define latency periods (the amount of time it takes for a brain tumor to develop after exposure to a risk factor). Although a lot of research has been done on the potential risk factors for primary brain tumors. Increased risk was not found correlation between head trauma and meningioma. metallurgy. and many other arts. and a father’s In animal studies. Many patterns of deletions and mutations have been identified in some tumor types. Researchers have at- Cellular Telephones and Radio Frequency (RF) Electromagnetic Fields With the expansion of wireless communication technologies. KPS scores range from 100 to 0. such as tuberous sclerosis. meningioma. • Treatment. When the parent goes home. Another reported an increased risk of glioma or other brain tumors in patients who had undergone irradiation for acute seizures and/or seizure medication can increase tumor risk.

The 39. 2010. American Cancer Surgery and Brain Tumor Research Center. Cancer Statistics. et al. and the tumors and their causes. and improving the survival rate of people di- CA: A Cancer Journal for Clinicians.. Progress in molecular research may SEER Cancer Statistics Review. MPH. eds. Krapcho M. search for answers to these types of questions. suggest that there person suscep­tible or resistant to developing a brain Information for this chapter was adapted from the The INTERPHONE Study Group. Ultra fine particles. July 2010. et al. Department of Epidemiology and Biostatistics and Brain Tumor Research Center. Jemal A. Department of Neurological Margaret Wrensch. National lead to identifying new types of tumors. One study is investigating a possible link between brain tumors and air pollution. Malmer B. Department of Neurology. University of Society. Clinical trials. Studying how alterations in cell development occur will help to understand the causes of brain tumors CBTRUS. MD. Issue 4. American Cancer Society. Texas their own or their children’s RF exposure by limiting the Further studies are needed to explain gender and length of calls. What causes cells to become tumors? Bondy ML. is becoming increasingly common. Pages conducted during a time when analog phones were the prognoses of primary brain tumors are all factors that article was written by the following researchers. MD. Houston. Department of Epidemiology and Bio- keep mobile phones away from the head and body. Studies are needed to The World Health Organization (WHO) suggests that individuals who are concerned about potential dangers of cell phone use may choose to do the following: limit find out why environmental factors and changes to DNA statistics and Brain Tumor Research Center. California Air Pollution might increase vulnerability to brain tumors. San Francisco. California This current edition incorporates updates from the Direction for Future Studies following sources: There is a growing interest in understanding the causes Altekruse SF. October 2002. strategies for preventing brain tumors. Bethesda.” published in PHONE international case-control study. including diesel soot and There is hope that further research can lead to preven- other combustion products. Vol. Vol. Moreover. October 2008.gov/ in genetic research may shed light on what makes a csr/1975_2007/. or use hands-free devices (headsets) to ethnic dif­ferences found among people diagnosed Terri Chew. Anderson Cancer Center. No. et al.694 main type of cell phone. International Journal of Epidemiology. Berger. Researchers also suspect that carcinogens.braintumor. Pages cells allow abnormal cells to escape destruction 1953-68. Developing new technologies. This knowledge could lead to number of cell phone users was fewer then. Total amount of phone use was lower.org National Brain Tumor Society | www. Many studies were often. it may be important to tumor. or poisons. 7 Suppl. research Melissa Bondy. as compared to digital phones will help us come to a better understanding of brain are very grateful for their assistance: today. California in humans. Central Brain Tumor Registry of the United States. develop when changes to the genetic makeup of No. University of Texas. of brain tumors. Stanford. http://seer. California agnosed with malignant tumors. IL. Published online. treatments. by the immune system. may damage DNA in brain cells. and to Yuriko Minn. studies that involve people. determining who long-term studies are probably needed because some might be sensitive to radiation therapy or certain drug brain tumors may take a long time to develop. However. Scheurer ME. improving tech- article “Epidemi­ology of Primary Brain Tumors: Current relation to mobile telephone use: results of the INTER- continue research in this area because cell phone usage niques for classification. Brain tumour risk in is no association.cancer. 113. Siegel R. San Francisco. are important means to The University of Texas M.KNOWN AND POSSIBLE CAUSES 19   18 THE ESSENTIAL GUIDE TO BRAIN TUMORS a recent large multinational study. National Brain Tumor Society | www. Hinsdale. leading to brain tumors. Department of Epidemiology. San Francisco. PhD. Statistical Report: Primary Brain and Central Nervous System Tumors Diagnosed in the United States in 2004-2006. Cancer. 2010.org . MS. and we 675 . Stanford Certain toxic air pollutants are known to cause cancer help us understand the way that brain tumors develop. 1975-2007. D. San Francisco. Xu J. based on November 2009 SEER data submission. May 2010. Mitchel S. California. Advances Cancer Institute. using molecular markers more Concepts and Review of the Literature. San Francisco. Brain Tumor Epidemiology: Consensus from the Brain Tumor Scientists believe that primary brain tumors Epidemiology Consortium. are able to lodge deep tion and a cure. in human lungs and even enter the bloodstream due to their microscopic size. with gliomas and menin­giomas. Kosary CL. San Francisco. University of California. posted to the SEER web site.braintumor. Volume 4. PhD. University. and to identify similarities between different types of brain tumors. 2010. 3. and keeping better records of the diagnoses and Neuro-­Oncology. University of California.

Age is an important factor lower degree of anaplasia are generally slow growing. Gliomas tend to grow in the cerebral hemispheres. classified. Under each tumor type. Symptoms tend to be subtle and may common primary CNS tumor.braintumor. brain tumors are specific to each individual. The classifica- Brain tumors have vastly different characteristics and Pediatric Brain Tumors brain stem. which signifies the rate of growth. reasoning. visit www. The most common types of pedi- important criterion is anaplasia. A series of criteria are used to make a diagnosis. This chapter discusses brain tumor types and how they are parts of the body. Brain Tumor Types Primary Brain Tumors Primary brain tumors originate in the brain itself. ependymal cells. Most people are be located anywhere in the brain.braintumor. there are some exceptions to this rule. There are additional tumor types in each of The WHO classification divides astrocytomas into four grades (see following page for more detail): or chromosomal defects have been identified in certain • • • • For more information. Some children may require accommodations at school. optic nerves. Glial cells play a supportive role by nourishing. otherwise known as glial cells. brain can often adapt to a slow-growing tumor for a Grade Grade Grade Grade I II III IV Pilocytic Astrocytoma Low-Grade Astrocytoma Anaplastic Astrocytoma Glioblastoma (or GBM) • • • • Headaches Seizures or convulsions Difficulty thinking or speaking Behavioral or cognitive changes (related to thinking. chemotherapy. Some brain tumors are named according to their location. Low-grade astrocytomas (grades I and II) are slow growing. patterns of growth due to the molecular makeup of the individual tumor. of the tumor. astrocytes. spinal cord. There are six kinds of glial cells: oligodendrocytes. The pathologist will assign it a grade. Treatment for pediatric growth potential. There are variations in grading Astrocytoma Characteristics likely behavior. period of time.org. These tumors can on the tumor’s grade and location. and require regular medical follow-up. The most common type of glioma is an systems. Astrocytomas are generally classified as low or high grade. In addition to other criteria. Treatment is based on the tumor type and location. the medical team and education professionals can help to address astrocytoma. In most cases. and There are two types of cells that make up the nervous system: neurons and neuroglia. For example. the type of brain tumor must first be identified. microglia. and non-glial tumors. radiation. Schwann cells. High-grade astrocytomas (grades III and IV) grow more quickly.braintumor. The main tumor type is listed for each grade. which is used throughout this guide. National Brain Tumor Society | www. but the most common functioning normally when diagnosed with a low-grade location is in the frontal lobe. will discuss the type and location of an astrocytoma. usually the neurosurgeon or neurooncologist. Astrocytomas are the most astrocytoma. often surround the neurons. However. tion and grade of an individual tumor help predict its Some tumor types are more common in children in determining the course of treatment since Gliomas are divided into subgroups depending on the origin of the glial cells. craniopharyngiomas. Some tumor types are assigned a grade. which are called gliomas.BRAIN TUMOR TYPES 21   4. and cerebellum. children’s brains are still developing. such as developmental delays and learning or physical disability. The degree of anaplasia helps to forecast a tumor’s and brain stem gliomas. you will find a list of the symptoms GLIAL TUMORS and treatment options that are typically prescribed. The three main treatment methods are surgery. but may also occur in the by cell origin and how the cells behave. High-grade tumors may present with changes that are sudden and dramatic. and satellite cells. About one third of all primary brain and other nervous Classifying Brain Tumors There are over 120 different types of brain tumors. take one to two years to diagnose. Survivors of childhood tumors may experience late effects of treatment. Primary brain tumors usually do not spread from the brain to other To determine the course of treatment. the manner in which atric tumors are medulloblastomas. some tumors are now examined for their genetic traits to evaluate the nature The physician. Many tumors share the same symptoms and treatments. ture. Neurons send and receive nerve messages. A brain tumor that develops from glial cells is called a glioma. Primary brain tumors are classified into two groups: glial tumors. from the least aggressive (benign) to the most aggressive (malignant). Today. protecting and supporting neurons. low-grade as- tumor cells grow with the loss of normal form or struc- trocytomas. Symptoms • • • • these grades. ependymomas. classifies brain tumors system tumors form from glial cells. The WHO classification. One than in adults. This is because the Although they may fall into a specific classification or category. An astrocytoma develops from star-shaped glial cells The characteristics of an astrocytoma vary depending (astrocytes) that support nerve cells. certain patterns of mutations tumor types. Neuroglia. a brain tumor is named for the cell type of origin. depending on the tumor type. Tumor cells that show a and/or chemotherapy. The most rapidly growing tumors have brain tumors often involves surgery.org . and memory) Weakness or paralysis in one part or one side of the body Loss of balance Vision changes Nausea or vomiting school-related concerns.org National Brain Tumor Society | www. radiation the highest degree of anaplasia. most medical institutions use the World Health Organization (WHO) classification system to identify brain tumors.

chemotherapy. Characteristics Symptoms • Usually localized to one area of the brain • Develops from cells that line the hollow cavities at the bottom of the brain and the canal containing the spinal cord • Can be slow growing or fast growing • May be located in the ventricles • May block the ventricles. chemotherapy. Low-grade tumors grow more slowly than high-grade tumors. radiation or chemotherapy may be given. cells that line the passageways in the brain where CSF is produced and stored. but can occur in adults Symptoms • • • • • • • Headaches Nausea Speech or balance abnormalities Difficulty swallowing Weakness or numbness of the arms and/or legs Facial weakness Double vision Symptoms can develop slowly and subtly and may go unnoticed for months. Chemotherapy may be given to very young children instead of radiation therapy to avoid damage to the developing brain. Radiation therapy can reduce symptoms and help slow the tumor’s growth. Surgery followed by radiation therapy is the usual course of treatment.org • Named for its location at the base of the brain • Can range from low grade to high grade • Occurs most often in children between three and ten years of age. optic nerve pathways. the symptoms may arise abruptly. Low-grade brain stem gliomas can have very long periods of remission. oligodendrocytes) • Includes distinct genetic subtypes • May have evolved from a low-grade astrocytoma or an oligodendroglioma • Common among men and women in their 50s–70s • More common in men than women • Accounts for 17 percent of all primary brain tumors Standard treatment is surgery followed by radiation National Brain Tumor Society | www. radiation and/or chemotherapy. therapy. Partial resections or inoperable tumors may be treated with radiation. Many clinical trials (ex­perimental treatments) using radiation. subependymal giant-cell astrocytoma. are the standard treatments. which occurs in infants and children under three years. or a combination are available for initial and recurrent GBM.braintumor. with chemotherapy during or following radiation. the doctor may administer ra­diation therapy. Glioblastoma (GBM) (Grade IV Astrocytoma) Characteristics Treatment • Most invasive type of glial tumor • Grows rapidly and commonly spreads to nearby tissue • May be composed of several different kinds of cells (i. causing hydrocephalus (water on the brain) • Sometimes extends to the spinal cord • Common among men and women in their 40s and 50s. see primitive neuroectodermal tumor (PNET). National Brain Tumor Society | www. which means they grow back after treatment for the initial tumor. high-grade tumors. astrocytes. If surgery is not an option.BRAIN TUMOR TYPES 23   22 THE ESSENTIAL GUIDE TO BRAIN TUMORS Brain Stem Glioma Astrocytoma grades Characteristics Pilocytic Astrocytoma (Grade I) This tumor is also known as a juvenile pilocytic astrocytoma. If surgery is not an option. Variations of this tumor type include subependymoma.e. Low-Grade Astrocytoma (Grade II) Characteristics Treatment • • • • Treatment depends on the size and location of the Slow growing Rarely spreads to other parts of the CNS Borders not well defined Common among men and women in their 20s–50s tumor. Ependymomas are classified as either supratentorial (in the cerebral hemispheres) or infratentorial (in the back of the brain). then the doctor may recommend radiation and/or chemotherapy. Benign or malignant tumors can recur. Treatment Surgery may not be an option because the brain stem controls vital life functions and can easily be damaged.. or by the initials JPA. and in children • Occurrence peaks at age five and again at age 34 • Accounts for two percent of all brain tumors • • • • • • • Headaches Nausea Speech or balance abnormalities Difficulty swallowing Weakness or numbness of the arms and/or legs Facial weakness Double vision Treatment The doctor will perform tests to determine if it has spread to the spinal cord. Tumors are graded to indicate how quickly they are growing. If the tumor cannot be com­pletely resected. What is the difference between benign and malignant tumors? Benign tumors are slow-growing tumors that can be removed or destroyed if in an accessible location. Characteristics Treatment • Slow growing. Many clinical trials using radiation. A sudden onset of symptoms tends to occur with rapidly growing.org . Some of these tumors can progress to a higher grade. Anaplastic Astrocytoma (Grade III) Characteristics Treatment • G  rows faster and more aggressively than grade II astrocytomas • Tumor cells are not uniform in appearance • Invades neighboring tissue • Common among men and women in their 30s–50s • More common in men than women • Accounts for two percent of all primary brain tumors Treatment depends on the location of the tumor and how far it has progressed. Surgery and radiation therapy. Recurring tumors may require additional surgery. or a combination are available for initial and recurrent anaplastic astrocytomas. brain stem and cerebellum • Occurs most often in children and teens • Accounts for two percent of all brain tumors Surgery is the standard treatment. is no longer considered a subtype of ependymoma. so it is important to be diligent about following up with the medical team after treatment. The doctor will most likely perform a biopsy or surgery to remove the tumor.braintumor. In other cases. Ependymoma Ependymal tumors begin in the ependyma. A shunt may be needed to treat hydrocephalus caused by blockage of the ventricles. Ependymoblastoma. Malignant tumors (brain cancer) are rapidly growing tumors that invade or infiltrate and destroy normal brain tissue. and malignant ependymoma. with relatively well-defined borders • Grows in the cerebrum. For ependymoblastoma. Chemotherapy is usually given during and after ra­diation therapy or if the tumor recurs.

and is a variation of an ependymoma. or genetic profiles. Treatment for these high-grade tumors is commonly surgery followed by radiation therapy and/or chemotherapy.braintumor. High-grade (malignant) forms of the tumor include anaplastic oligodendroglioma and mixed astrocytomaoligodendroglioma (oligoastrocytoma). Characteristics Treatment • Slow growing • Usually located in the fourth and lateral ventricles • More common in men than in women Surgery will be performed when possible. as seen by the that helped me to care for him. it is likely there are tumor cells remaining that will require further treatment. has been removed. Chemotherapy may be given to very young children instead of radiation therapy to avoid damage to the developing brain. A total resection means all visible tumor. If a tumor recurs. Radiation therapy may be used if the tumor progresses or recurs. This tumor type develops from glial cells called oligodendrocytes. Characteristics Treatment • Named for its location on or near the nerve pathways between the eyes and the brain • Can range from low grade to high grade • Occurs most often in infants and children. Characteristics • Composed of two or more types of glioma cells • Graded according to the most aggressive type of tumor cells • Common among men and women in their 20s–50s • Accounts for one percent of all brain tumors • Weakness or paralysis • Behavioral and cognitive changes Treatment Mixed gliomas are generally treated for the most ana­plastic (cancerous) type of cell found in the tumor. A subtotal or partial resection means that some of the visible tumor remains. National Brain Tumor Society | www. battled brain tumor disease. A shunt may be needed to treat hydrocephalus.org sometimes joke about the fact that I was his unregistered nurse. For example. The term "debulking" refers to a partial resection. but can occur in children • More common in men than women • Accounts for two percent of all primary brain tumors • May be associated with 1p or 19q chromosomal losses Symptoms • • • • Seizures Headaches Behavioral and cognitive changes Weakness or paralysis Treatment If the tumor is low grade and symptoms are not severe. the treatment would be based on the Headaches Seizures Nausea and vomiting Visual problems anaplastic astro­cytoma—the more aggressive of the Subependymoma This tumor forms from ependymal cells. Oligodendroglioma Characteristics Symptoms and wait” and evaluate tumor growth through MRIs. the doctor will evaluate it for a second surgical procedure.org . • Occurs frequently in the frontal or temporal lobes • Can be classified as low grade or high grade • Common among men and women in their 20s–40s. We would neurosurgeon and detected on the scan.and high-grade oligodendrogliomas can recur. Oligo­dendrogliomas can be identified by deficiencies in certain chromosomes named 1p and 19q. but can occur in adults Surgery is standard treatment. radiation. Even after a total resection. Timothy. Symptoms • • • • Headaches Nausea Loss of balance Sometimes no symptoms occur and tumor is detected incidentally Gene expression studies are used to classify gliomas based on certain characteristics. usually followed by radiation therapy or chemotherapy. Genetic profiling of oligodendrogliomas provides a more accurate pre­dictor of prognosis and treatment options than does standard pathology. the doctor may decide to perform surgery.braintumor. then “watch • Headaches • Progressive loss of vision • Double vision two cell types. in the case of a tumor composed of Symptoms an ana­plastic astrocytoma and a low-grade oligo- • • • • dendroglioma. “During the six and a half years my son.” –Wendy Pizzi National Brain Tumor Society | www. I learned many What is resection? lessons and developed a variety of coping skills Resection is the surgical removal of a tumor.BRAIN TUMOR TYPES 25   24 THE ESSENTIAL GUIDE TO BRAIN TUMORS Mixed Glioma Optic Nerve Glioma A mixed glioma is often a combination of an astrocytoma and an oligodendroglioma (see below). Both low. and/or chemotherapy.

National Brain Tumor Society | www. Symptoms • Hearing loss in one ear • Tingling or numbness • Dizziness or vertigo in the face • Tinnitus (ringing in the ear) • Balance problems • Coordination problems Chordoma Characteristics Symptoms • Rare and low grade • Occurs at the sacrum. To correctly diagnose primary CNS Lymphoma. Staging helps confirm where the cancer originated and how far it has spread.org Headaches Partial paralysis on one side of the body Seizures Cognitive or speech disorders Vision problems Treatment Radiation therapy. but actual shrinkage of the tumor may never occur or may take several months. Radiosurgery may be given to destroy multiple inoperable lesions. but may occur in adults • Slightly more common in males than females Symptoms • Headaches • E  arly morning vomiting • Lethargy or sleepiness • • • • Lack of coordination Double vision Behavioral or personality changes Signs of pressure seen behind the eye when examined with an ophthalmoscope Treatment Surgery is the standard treatment when possible. chemotherapy. near the lower tip of the spine. Hemangioblastoma Characteristics Symptoms • • • • • • • • • Headaches • Nausea and vomiting • Walking and balance problems  ommonly located in the cerebellum C Slow growing Originates from blood vessels Can be large in size Often includes a cyst Common among men and women in their 40s–60s More common in men than women Accounts for approximately one percent of all brain tumors • Sometimes found in conjunction with von HippelLindau syndrome. Chordomas at the base of the skull can be difficult to remove. causing hydrocephalus • Occurs most often in children under the age of ten. or at the base of the skull • Originates from cells left over from early fetal development • Invades the bone and soft tissues but rarely the brain tissue • Can block the ventricles. but incidence is increasing in young adults • More common in men than women • Accounts for about 2 percent of all brain tumors National Brain Tumor Society | www. a biopsy at the start of steroid treatment can be critical to ensure the correct diagnosis. and glands. However. Medulloblastoma Characteristics • • • •  type of primitive neuroectodermal tumor (PNET) A Often located in the cerebellum or near the brain stem Can spread to the spinal cord through the CSF May obstruct the fourth ventricle. near the pituitary gland • Tends to be low grade • Often accompanied by a cyst • Originates in cells left over from early fetal development • Occurs in children and men and women in their 50s and 60s Symptoms • • • • Headaches Visual changes Weight gain Delayed development in children Treatment Surgery is the most common treatment. CNS Lymphoma CNS Lymphoma is a type of cancer that develops in the lymphatic system.braintumor. blood vessels. This tumor may recur years later if not totally resected. Surgical resection may be possible if the tumor is located in the spine. This fluid supplies cells called lymphocytes that fight disease and infection.BRAIN TUMOR TYPES 27   26 THE ESSENTIAL GUIDE TO BRAIN TUMORS Non-GLIAL TUMORS Craniopharyngioma The following tumor types develop on or in structures within the brain. or surgery may be performed. an inherited condition that may cause a tendency toward hemangioblastomas or kidney cancers Treatment Surgery is the standard treatment.org . high-energy radiation prevents the growth of acoustic neuromas.braintumor. Characteristics • Most common in the parasellar region. an area at the base of the brain and near the optic nerves • Also grows in the regions of the optic nerves and the hypothalamus. Characteristics Treatment • Arises from cells that form a protective sheath around nerve fibers • Typically grows around the eighth cranial nerve. Radiosurgery may be an option. A shunt may be needed to treat hydrocephalus. such as nerves. Surgery is rarely an option because there are usually multiple lesions. Acoustic Neuroma An acoustic neuroma is also known as a vestibular schwannoma or neurilemmoma. but can be found around other cranial or spinal nerves The tumor may be observed to monitor its growth. Characteristics Symptoms • Very aggressive • • • • • • Usually involves multiple tumors throughout the CNS • More common in people whose immune systems are compromised • Often develops in the brain. staging must be done. and steroids are the most common forms of treatment. commonly in the areas adjacent to the ventricles • Can be primary (originating in the brain) or secondary • Most common among men and women in their 60s–80s. Staging is the process of using CT scanning to examine many parts of the body. Radiation therapy may be used. watery fluid called lymph throughout the body. causing hydrocephalus • Can metastasize (spread) or recur • Double vision • Headaches Treatment Surgery and radiation therapy are the common forms of treatment. Chemo­therapy is usually part of the treatment plan. Radiation of the brain and spine is often recommended in adults and children over three years of age. The goal of surgery is the complete removal of the tumor without harming the seventh cranial nerve (which controls facial movement) or causing hearing loss. The lymphatic system is a network of small organs called lymph nodes and vessels (similar to blood vessels) that carry a clear. This focused.

Follow up with an endo­crinologist may be necessary to manage hormonal changes. the layers of tissue covering the brain and spinal cord. surgery may be followed by chemotherapy or a clinical trial of chemotherapy to delay or reduce the need for radiation therapy. Atypical Meningioma • Grade III. Meningiomas are graded from low to high. surgery is the standard treatment. National Brain Tumor Society | www. and cerebral cortex PNET (located in the cerebral cortex).braintumor. Clinical trials using chemotherapy or biological therapy following radiation therapy are being investigated. This can be transphenoidal surgery. medulloblastoma (located in the cerebellum). the lower the risk of recurrence and aggressive growth. Malignant (Anaplastic) Meningioma The pituitary gland produces hormones that affect growth and the functions of other glands in the body.braintumor. or recurrent meningiomas is being tested through clinical trials. located at the center of the brain behind and above the nose • Can range from low grade to high grade • May cause excessive secretion of hormones • Common among men and women in their 50s–80s • Accounts for about 13 percent of all brain tumors Symptoms • • • • • • Headache Depression Vision loss Nausea or vomiting Behavioral and cognitive changes Cessation of menstrual periods (amenorrhea) • • • • • Leaking of fluid from the breasts (galactorrhea) Hair growth in women Impotence in men Abnormal growth of hands and feet Abnormal weight gain Treatment If the tumor is large or compressing the optic nerve. If the tumor cannot be completely resected or if it recurs. because meningiomas can recur years or even decades after treatment. A shunt may be needed to treat hydrocephalus caused by blockage of the ventricles. Characteristics Treatment • Named for its location in or around the pineal gland (near the center of the brain) • Can range from low grade to high grade • Can produce an excess of melatonin. Chemotherapy may be given to delay the use of radiation therapy in very young patients. In adults and children over three years of age. The WHO classification divides meningiomas into three grades: • Grade I. Clinical trials using chemotherapy drugs are available for pineal tumors. In children under three years of age. Follow-up scans are needed indefinitely. aggressive. Benign Meningioma • Grade II. and gliomas • Occurs most often in children and young adults Surgery is standard treatment when possible. radiation therapy may be given as well. Characteristics Symptoms • May arise after previous treatment from ionizing radiation or excessive x-ray exposure • Common among women and men in their 40s–50s.org • Named for its location on or near the pituitary gland. pineal parenchymal tumors. Chemo­therapy for unresectable.org . A malignant form of pineal tumor is called pineoblastoma. Otherwise. Names of specific PNETs may be based on the tumor location. Certain drugs can block the pituitary gland from making too many hormones. Treatment for high-grade (malignant) pineal tumors such as a pineoblastoma may involve radiation to the brain and spine to control spread through the CSF. Radiation therapy may be used as primary treatment in adults and children over three. which gains access to the tumor by entering through the nasal passage (see chapter 5). Other pituitary tumors do not secrete hormones. the doctor may monitor the tumor with MRIs. but grow and compress brain tissue. • • • • • Headaches Nausea and vomiting Fatigue Visual problems Memory problems National Brain Tumor Society | www. but can occur at any age • Twice as common in women as in men • Accounts for 34 percent of all primary brain tumors • In very rare cases.BRAIN TUMOR TYPES 29   28 THE ESSENTIAL GUIDE TO BRAIN TUMORS Meningioma Pituitary Tumor These tumors grow from the meninges. standard treatment is surgery. Primitive Neuroectodermal Tumors (PNET) There are several tumor types in this category. The lower the grade. Pineal Tumor Symptoms Characteristics Characteristics • Very aggressive and tend to spread throughout the CNS • Grow from undeveloped brain cells • Commonly include cysts and calcification (calcium deposits) • Tend to be large • Occur most often in young children Symptoms • Can vary depending on location of tumor • Weakness or change in sensation on one side of the body • Morning headache or headache that goes away after vomiting • • • • • Nausea and vomiting Seizures Unusual sleepiness or lethargy Behavioral or personality changes Unexplained weight loss or weight gain Treatment Surgery is the standard treatment when possible. atypical. and/or observed with MRI scans. Certain pituitary tumors secrete abnormally high amounts of their respective hormones and cause related symptoms. Examples include pineoblastoma (located in the pineal region). causing hydrocephalus • High-grade pineal tumors can spread to the spinal cord through the CSF • Common types include germ cell tumors. Radiation therapy may also be used. multiple meningiomas can develop at the same time • • • • • Seizures Headaches Nausea and vomiting Vision changes Behavioral and cognitive changes Treatment If there are no symptoms. Some pituitary tumors may be treated with medication. a hormone that controls the sleep/wake cycle • Can block the ventricles. causing other symptoms. and chemotherapy. surgery may be followed by radiation therapy to the whole brain and spinal cord. can invade the skull or metastasize to the skin or lungs • Women with meningiomas can experience tumor growth during pregnancy • In rare cases.

braintumor. stabilized. social workers and counselors include loss of balance. There has been an increase in metastatic lesions as people are surviving primary cancers for longer periods of time.braintumor. many rence are those the patient had previously. breast. Schwannoma Also known as vestibular schwannoma. may include repeated lumbar punctures or medications to decrease CSF. condition. including neurofibromas. Both of these treatments may be followed by whole brain radiation therapy (WBRT). can be surgically removed or drained. a cyst can cause symptoms such as monly afflicts obese adolescent girls and young women. Recur- the risk of severe cognitive damage. colon. headache. and spinal cord tumors. In children under three years of age. Some of the cancer patients whose tumors have recurred participate in Seizures Headaches Behavioral and cognitive changes Problems with coordination Treatment Surgery and/or radiosurgery are used if lesions are accessible and limited in number. bilateral vestibular schwannomas. It brings back feelings of having a life-threat- tumors in various parts of the nervous system. Some common kind. including after treatment may be prolonged for others. The symptoms may return or become more pronounced. Surgery is another treatment option. Treatment can help you cope with difficult emotions. Characteristics Symptoms • The primary cancer is usually in the lung. pain. In cases of multiple lesions. There Tuberous Sclerosis is a genetic disorder that causes ening disease. Characteristics • Arises from cells that form a protective sheath around nerve fibers • Typically grows around the eighth cranial nerve. but its symptoms round) or be located next to a tumor. Based on its mimic a brain tumor. Clinical trials are being studied using autologous bone marrow transplantation (see glossary) after high-dose chemotherapy for recurrent or multiple rhabdoid tumors. Treatment is given to relieve ongoing MRI and CT scans to observe its growth the symptoms. clinical trials. internal tumor symptoms vary based on location • Balance problems may occur • External tumors cause noticeable lumps. symptoms that may indicate a tumor recur- A metastatic. Cysts Symptoms include head­aches. but can originate in any part of the body • Most are located in the cerebrum. Other Tumor-Related Conditions Cysts Pseudotumor Cerebri A cyst is a fluid-filled sac that may encapsulate (sur- This condition is not a brain tumor. may be confused with medulloblastoma or PNETs • Occurs most often in young children but can also occur in adults Symptoms • Vary depending on location of tumor in the brain or body • An orbital tumor may cause the eye to protrude • External tumors cause noticeable lumps. a shunt may be needed. Surgery is the may involve inserting a shunt to prevent hydrocephalus. kidney. tinnitus. blurred vision. Most patients suffer from seizures.BRAIN TUMOR TYPES 31   30 THE ESSENTIAL GUIDE TO BRAIN TUMORS Metastatic Brain Tumors Rhabdoid Tumor Characteristics • Rare • Highly aggressive and tends to spread throughout the CNS • Often appears in multiple sites in the body. or skin (melanoma). A recurrent tumor is a tumor that has grown back be able to receive additional treatments because of after being removed. may be an option. However. Most cases occur feel more tired and find that it takes longer to return occurs within the CNS. The symptoms are causing neurological difficulties. If the tumor is not completely removed. Type 2 tumors of the CNS. cells may be carried to the brain by the blood. recovery are two types of neurofibromatosis. only on a specific area. Metastatic brain tumors are the most common brain tumors. radio- rence may occur in the same area as the original surgery. Also. the doctor will conduct caused by a buildup of CSF. Fatigue may occur due to multiple CNS tumors. Metastatic brain tumors are often referred to as lesions. standard treatment. or secondary. an intense beam of radiation that focuses tumor or elsewhere in the brain or spinal cord. recurrence is likely. seizures. surgery may be followed by chemo­therapy alone. internal tumor symptoms vary based on location Treatment Whenever possible. optic endymal giant-cell astrocytomas are the most common on the size and location of the tumor(s). to their normal routine. neurilemmoma and acoustic neuroma (see acoustic neuroma). the more numerous neurological and physical symptoms. While some people do well. Treat­ment pattern. had a standard course of radiation therapy may not National Brain Tumor Society | www. If a cyst is not and a slight numbness of the face. Type 2 neurofibromatosis causes in children under 20 years of age. Headaches or seizures may occur if there is pressure on the brain. but can also develop in the cere­bellum or brain stem • More than half of people with metastatic tumors have multiple lesions (tumors) • Common among middle-aged and elderly men and women • • • • • Tinnitus (ringing in the ear) • Balance problems • Deficits depend on the nerve that is affected Recurrent Tumors Usually. The site where the cancerous cells originated is referred to as the primary cancer. Pseudotumor cerebri most com- location in the brain. Neurofibromatosis A tumor recurrence can be traumatic for patients and Neurofibromatosis is a genetic disorder that can cause Tuberous Sclerosis families. dizziness. Type 1. This is usually followed by chemotherapy and radiation therapy. Patients and families may also experience nerve gliomas. par­tic­ularly visual impairment. Doctors. brain tumor is one that begins as cancer in another part of the body. but can be found around other cranial or spinal nerves Symptoms • Reduced hearing in the ear on the side of the tumor when eighth cranial nerve is involved Treatment Surgery and radiotherapy are the most common forms of treatment. About 50 percent of Treatment options for a recurrence may be surgery. or a neurological deficit. Symptoms type. Subep- radiation. facial pain or numbness.org National Brain Tumor Society | www. especially the kidneys • Difficult to classify. or may spread from adjacent tissue. eyes. and the the tumor. and headache. usually occurs outside of the CNS.org . multiple tuberous sclerosis patients develop brain tumors. Chemotherapy specific to the brain-located metastatic tumor may be used. Patients who have already depression. and kidneys. WBRT and/or radiosurgery may be given. such as leg or arm weakness or problems with coordination. but other tumor types are also associated with this patient’s functional status. or shrunken. chemotherapy or a combination depending either an emotional reaction or physical aspects of meningiomas. In severe cases. total hearing loss. surgery is performed to remove as much of the tumor as possible.

neurologists. Brain Tumor Treatments This chapter examines the standard treatments for brain tumors: surgery.) the CNS. Physiatrists specialize not consulted until after treatment. Before receiving treatment. Steroids may be taken alone or combined with other forms of treatment. then the dosage is gradually tapered off.org . Steroids may be prescribed problems. This chapter also describes biologic The Treatment Team Neurologist  A doctor specializing in the diagnosis for comparison of changes that may occur after and treatment of disorders and diseases affecting treatment. vomiting. impairment of the hip joint.and long-term side effects. A tumor board is a multidisciplinary group of health care providers involved in the treatment and diagnosis of CNS tumors. glaucoma. speech problems. new treatments currently being tested in clinical trials. Other steroids are prednisone and methylprednisolone. These drugs do not kill tumor cells. tissues. and vocational effects of disabilities. weak- causes increased intracranial pressure (pressure inside ness. Short-term side effects include insomnia. improve mobility. sone (Decadron). the patient’s condition must room for expansion. and chemotherapy. techniques) specializing in the interpretation of and complementary and alternative medicine (CAM). The most common steroid is dexametha- delivery of radiation therapy. through microscopic examination of biopsied tissues Examples of focal symptoms include problems with (tumor cells). Clinical Psychologist  A licensed professional who can help patients and their families adjust to the effects of illness on their lives. and prevent or limit permanent physical dis- Speech Therapist  A professional who helps people overcome problems understanding and producing language. the tumor is located.braintumor. Rehabilitation Counselor  A specialist who helps people deal with the personal. When possible. is generally considered the preferred approach. izing in how the brain functions and the impact Physiatrist or Physical Medicine and Rehabilita- that brain damage has on one’s abilities. but can improve a patient’s condition. and blurred vision. the doctor. National Brain Tumor Society | www. and surgical management be evaluated through clinical examinations and imaging cause general symptoms including headaches. Some causing swelling of the normal tissue surrounding long-term side effects include muscle wasting (especially them. control. patients commonly receive Medical Management specializing in the treatment of cancers and tumors and supervision of a medical doctor. MSWs help Neurosurgeon  A surgeon specializing in the locate appropriate health care. water retention. This group meets and reviews the patient’s MRI films and clinical and pathological information. nausea. That way. (Please tion Specialist  A physician specializing in physical note:  although neuropsychologists are frequently medicine and reha­bilitation. Occupational Therapist  An individual who helps clients to compensate for permanent loss of function by improving basic motor functions and reasoning abilities. When the swelling is under medication(s) to manage the symptoms of the tumor. facial swelling and flushing.BRAIN TUMOR TREATMENTS 33   5. Neuro-oncology Nurse Specialist  A registered nurse specializing in patient education (including symptom management) and support services for brain tumor patients. Brain edema thigh muscles). Steroids (glucocortico-steroids) are drugs that reduce Before receiving treatment. Steroids and Their Side Effects Nurse Practitioner  A registered nurse who independently performs physical exams. it may be in restoring optimal function to people with injuries preferable to do so at diagnosis. In addition. made up of various specialists. and thirst. bones. and other medical professionals may be part of a tumor board. nervousness. control swelling of the brain. and nervous system accurate evaluation can be made before treatment (such as stroke survivors). and plinary treatment team. National Brain Tumor Society | www. relieve In diagnosing and treating brain tumors. irritation. seizures. Steroids have a range of short. radiation oncologists. the skull) because the skull is a rigid container with no hypertension. which may increase the time to who may perform physical exams. Tumors can personality and mood changes. common diagnostic and laboratory tests and (in most states) can Steroids are prescribed to reduce inflammation and prescribe certain medications.braintumor. Neuroradiologist  A radiologist (an expert in imaging (targeted) therapy. and preferences. the services of the following professionals may be beneficial: Medical Social Worker (MSW)  A licensed social worker who assists patients and families with health-related problems and concerns. Neurosurgeons. legal resources. diabetes. diagnostic images (scans) of the brain. and works toward increasing the client’s capacity to live independently. patients restore function. and plan treatment under the direction at diagnosis. Neuropathologist  A doctor specializing in the Brain edema can also cause focal symptoms by put- di­agnosis of neurological disorders and diseases ting pressure on specific structures within the brain. and family will discuss a treatment plan based on the type and location of the tumor. tests (see chapter 2). throat interfere with the circulation of the brain’s blood supply. a multi-disci- language comprehension. spinal cord. weight gain. Neuropsychologist  A licensed psychologist special- Nutritionist  A person who specializes in information about dietary needs. hoarseness. and loss of bone calcification. and financial aid.org affecting the CNS. Physical Therapist  A trained individual who helps pain. fatigue. treatment. or before or after surgery. This swelling is called brain edema. and nervous system. Speech therapists also help with eating and swallowing difficulties caused by oral motor problems. peptic ulcers. the patient’s general health. The tumor board then discusses treatment options and makes a group recommendation regarding treatment. increased Brain Edema appetite. radiation therapy. of disorders and diseases of the CNS. pathologists. patient. Radiation Oncologist  A doctor specializing in the brain swelling. identify health make treatment decisions. Tumor Board Some medical centers offer the services of a tumor board. osteoporosis. social. weakness on the opposite side of the body from where Neuro-oncologist  An oncologist (cancer doctor) abilities. Steroids can help relieve Physician Assistant  A certified health care worker pre-surgery symptoms. medical history. Increased intra­cranial pressure can di­agnosis. Brain tumors add mass within the skull. increased sweating. a more to the muscles. moderate abdominal pain.

the surgeon drills a small hole in the skull. others do. Lumbar Puncture (Spinal Tap) A lumbar puncture is a procedure that extracts CSF surrounding the spinal cord. The goal of surgery is to remove the tumor without causing damage to critical neurological functions. and possible risks of surgery. A special frame called a static head frame holds the patient’s head in place. Then. These are usually team. all or part of the patient’s head will be shaved. The health care team will work with of tissue is taken from the tumor and examined under neurosurgeon or radiation oncologist. Once these delicate areas have been identified. Patients may also meet with and the part of the skull is put back into place. The patient may spend a few additional days in the hospital. intracranial pressure. and other functions a pro­cedure in which the patient is allowed to return to will be closely monitored. However. most side being taken. and supplements. During a cerebral shunt procedure. Prior to surgery. or catheter. In some cases. case managers. strength. Guided by an x-ray. is a device consisting of a thin tube and a valve that controls the flow of fluid. excess CSF drains into the abdomen. Debulking is another term used for a partial resection. or surgery under local anesthesia. talking. is Heart rate.braintumor. called “frameless” or computer-assisted image-guided as is possible. the craniotomy Awake Craniotomy patient will be moved to the intensive care unit (ICU). of the tumor as possible is removed. plan to keep a journal to record important information. The CSF is examined to detect abnormal cells. the patient of the brain that control important functions such as will be moved to a regular room. Another method. sensation. breathing exercises are encouraged to Post-Operative Care After waking up in a recovery area. The dura is sutured effects of surgery usually decrease or disappear over herbs. This may be a liquid or powdered substance. paralysis. or more commonly. This will help get the body’s systems function- a microscope. symptoms may appear tients should inform the neurosurgeon of all medicines the brain (dura) is opened to reach the tumor. increase the chances of a complete resection. Other Surgical Procedures and Devices Embolization Embolization is a treatment that cuts off a tumor’s blood supply by clogging the small blood vessels that feed the tumor. long I live. Risks and Complications of Surgery A craniotomy is a major operation. the other end is tunneled under the skin to the abdomen. This can lead to permanent impairment the surgery. brain receive one or more of the following: a scan (MRI. including over-the-counter medications. After giving a local anesthesia. they may be used without surgery if the tumor is inoperable. Sample questions might include: • Is my tumor benign or malignant? • What is the name. A narrow. hollow needle is inserted through the hole to extract tumor tissue. whom would • What factors do you look at to predict how I am During recovery. neuropsychological or speech tests. edema. radiation and the patient to get him or her up and around as soon as The doctor may give a referral to a rehabilitation samples from tumors in hard-to-reach areas of the going to do? keep the lungs clear. Stereotactic or Needle Biopsy A stereotactic or needle biopsy is used to take tissue you recommend? brain. such as radiation history and perform surgery as soon as possible. Shunt A shunt. Surgical Procedures a small hole in the skull. Generally after spending anywhere Social workers. To do this. The patient may wear special consciousness after the brain has been exposed. the entire tumor is removed whenever feasible. It can alleviate symptoms and improve location. Then. The purpose of a biopsy is to diagnose a Debulking attempts to remove as much of a tumor therapy and chemotherapy. Patients should discuss monitoring and all possible side effects with the doctor. type. Some normal brain tissue may be damaged The patient will meet with the neurosurgeon to discuss eral anesthesia. the neurosurgeon needs to determine the location of the tumor and plan the safest method Just before surgery. the areas from several hours to two days in the ICU. the neurosurgeon can perform brain temporarily put on a machine called a ventilator that mapping. the patient will discuss the type of anesthesia to be used with the anesthesiologist. Risks and complica- of performing the operation. and hearing. • What are the side effects of each treatment option? • Which treatment would you take if you had my tumor? • If I am more interested in quality of life than how neurosurgeon to identify the eloquent cortex. Then the time. and behavioral or cognitive PET). Surgery Surgery or resection is the primary form of treatment for brain tumors. The surgeon makes an incision through during surgery. the patient is put back under general anesthesia. The surgeon will obtain the patient’s medical brain needle biopsy. If possible. When only part of a tumor can be removed. A local anesthetic is given to numb the spine in the area where the needle is inserted. where it is absorbed into the bloodstream. the patient is usually under gen- changes. and other daily activities. One end of the shunt is inserted into a ventricle. speech. walking. length of hospital stay. but it can also be performed with the patient under anesthesia. any pre-existing a section of the scalp. it is possible that the tumor will recur. Steroids can cause both short-term and long-term side effects if taken over a long period of time. infection. or the presence of protein or blood. Therapists can help with balance. or stopped suddenly without being monitored by a doctor. Patients should never stop taking steroids without the doctor’s knowledge. As much to be worse than before surgery. a neuro-oncologist or other members of the treatment scalp is closed with staples or stitches.braintumor. does not use a static head frame. A shunt is used to divert CSF from the brain into the abdominal cavity. National Brain Tumor Society | www. and the surgery is completed. tiny metal coils. With stockings to prevent blood clots. seizures. surgery is urgent because of the tumor’s chemotherapy treatments are used as secondary or possible. using sophisticated surgical of the functions related to the injured area of the brain. which treatment would you recommend? • Are there any clinical trials for which I am eligible? • What questions are those clinical trials asking? • Do you have the equipment necessary to deliver stereotactic radiosurgery and fractionated stereotactic radiation therapy? • If I wanted a second opinion from another Biopsy A biopsy is a surgical procedure in which a small sample program if necessary. shorten the length of time in surgery. However. Pa- tools. A radiologist or neurosurgeon inserts a catheter through an incision in the skin of the groin. and movement. An embolic agent is injected into the tumor. and grade of my tumor? • What are the treatment options? National Brain Tumor Society | www. CT or Craniotomy is the surgical opening of the skull (cranium). In general. After a needle biopsy. the catheter is advanced to the tumor site. Brain mapping is a procedure that allows the helps with breathing. medical conditions. the patient is monitored for several hours in the recovery room.org ing again. He or she may be the patient awake. and discharge planners can help coordinate continued care before leaving the hospital. Embolization can reduce blood loss during brain surgery. The patient is usually awake during this procedure.org . the patient will Craniotomy tions of surgery can include bleeding. and reduce the risk of damage to adjacent normal tissue. Therefore. It is helpful to prepare a list of questions and removed after about seven to 10 days. Awake craniotomy. tumor in order to find out its type and grade. a part of the skull is removed and the covering of For a short time after surgery.BRAIN TUMOR TREATMENTS 35   34 THE ESSENTIAL GUIDE TO BRAIN TUMORS Some patients who take steroids for a few days or weeks do not experience side effects. the effectiveness of other therapies. During this procedure. the neurosurgeon makes adjuvant treatments for tumors that cannot be managed using only surgery. An intravenous (IV) line will be placed in the arm to administer fluids and medications. an infection.

External beam radiation is the most frequently used form of radiation therapy. Stereotactic surgery uses a scanning device to find the Conventional Radiation Therapy Intensity Modulated Radiation Therapy (IMRT). small electrodes are used to identify the areas called the eloquent cortex that control speech. high dose of radiation in a one-day session. Transphenoidal surgery is com- Another technique to identify eloquent areas of the brain that control speech. Microsurgery is a standard pro­ cedure in craniotomies. and movement. It can also Transphenoidal surgery is a method of surgery used die. The catheter is attached to a small mushroom-shaped chamber (reservoir) beneath the scalp. and Radiation therapy (RT) uses high-energy x-rays or other normal brain tissue.braintumor. the area of its shape. apparent until several months after treatment. Normal healthy cells can repair the damage radiation that has been modified by computer to match typically lasts from 10 to 40 minutes. which produces a three-dimensional image of the brain. Stereotactic Surgery radiation at the tumor from outside the patient's body. the results of radiation therapy may not be to apply a uniform level of radiation to the tumor while clarify the borders of a tumor and distinguish tumor to reach tumors in the sellar area. The patient feels no pain. IMRT is designed beam of radiation focused at an entire region of the to restrict the treatment beam to the tumor. This technique helps the surgeon both plan the surgery with Intraoperative MRI is an imaging system that works in greater precision and arrive at difficult to reach areas real-time to capture and display images throughout during surgery. Use of radiation therapy is avoided in children below the age of three because it damages the developing brain. The device sends high-frequency types of ionizing radiation to stop cancer cells from sound waves to the brain. thereby increasing precision. Radiation Therapy between the tumor. remove a tumor. which leads to less invasive proce- stays in malignant cells longer than in normal cells. rence. radiation therapy and chemotherapy. The or whole brain radiation therapy (WBRT). can range from 2–30 Gy. The radiation is fractionated into thickest parts of the tumor. Photodynamic therapy is a cancer treatment in which intraoperative MRI generally helps surgeons to make patients are injected with a light-sensitive drug. Stereo­tactic surgery is used in several surgery. PDT can be used to treat multiple tumors and metastatic brain tumors. Thus. The waves bounce off the dividing. sensation. This technology allows the surgeon to pinpoint capacities: to perform a biopsy. diameter or center. Radiosurgery is not surgery. regardless brain containing the tumor. exact loca­tion of the tumor and the structures surrounding it. but ranges between 50–60 Gy. radiation is delivered directly to the tumor. the newer intraoperative MRIs have magnets that are ally five to seven weeks. a shorter recovery time for the neurosurgeon performs laser surgery. A linear accelerator sends a high dose of cells (DNA). Conformal Radiation Conformal radiation is a type of conventional radiation Ionizing radiation damages the basic building material in treatment. The dose as strong as 3 Tesla. (See chapter 2 for a detailed description of Functional MRI. The the tumor resection. A typical daily dose of radiation therapy is 1. After resection. depending on tumor are important eligibility criteria for SRS. optic pathways. irradiated tumor cells or conform to the shape of the tumor. sensation. less intense doses.org frequent.BRAIN TUMOR TREATMENTS 37   36 THE ESSENTIAL GUIDE TO BRAIN TUMORS Ommaya Reservoir patient to have an immediate follow-up scan a few days in conjunction with other treatments. or divided into more Intensity Modulated Radiation Therapy (IMRT) Stereotactic Radiosurgery (SRS) Stereotactic radiosurgery (SRS) is different than conventional radiation therapy. implant the tumor before the incision is made. WBRT aims radiation at the entire brain.braintumor. but like surgery. Brain Mapping Brain mapping is used during an awake craniotomy. through the nostrils. so that a higher intensity reaches the margin is irradiated. SRS delivers a single. The only common (tube) used to inject medicine or extract CSF from the ventricles. In an SRS dures and as a result. as there are no pain receptors in the brain. excluding weekends). Size and location of the smaller incisions. In this procedure. With the aid of computer imag- leave the operating room so that the surgeon can verify photosensitive drug destroys the cancer cells without it. it is meant to be ablative: to destroy National Brain Tumor Society | www. is a Conventional radiation therapy delivers an external type of conformal radiation therapy. Focused radiation procedure. CSF. Multiple beams are used many small doses and given over a period of time (usu- simultaneously and meet at the target point. It helps the neurosurgeon to avoid injuring delicate areas of the brain that may not be visible in a scan. the location of the tumor is accurately calculated. It sends the information to a computer. which are optimal in obtaining a Photodynamic Therapy (PDT) high-resolution image. The total dose of a radiation treatment will vary depending on the tumor type. It helps the more precisely throughout the surgery to make sure neurosurgeon navigate his or her way around during that a more complete resection can be made. This drug Conventional radiation therapy can be either focused all the tumor cells in its path. a head frame is attached to the skull. This part of the procedure Intraoperative Ultrasound Imaging Intraoperative ultrasound imaging is a method used during surgery to gauge the depth. It also helps to distinguish side effect is significant sensitivity to sunlight for about one month after treatment. and It accesses brain tumors through an incision made normal brain tissue. including surgery. A chemical reaction with the therapy aims x-rays at the tumor and area surrounding or MRI scans are taken. fluid buildup. a cyst. It may be used after surgery to destroy a television screen. Brain mapping Transphenoidal Surgery better than tu­mor cells. They direct parts of the brain. An Ommaya reservoir is a surgically implanted catheter after surgery. and perform other basic tasks during brain mapping. Conformal radiation may be used to minimize injury to delicate structures such as the salivary glands.8–2. a cyst. Radiation therapy can stop or slow the growth of inoperable tumors. and minimize the length of surgery. The patient is required to talk.0 Gy (Gray). Some of surgery. and edges of the tumor. Then CT patient. It involves machines called linear accelerators and cobalt machines. just behind the eyes. WBRT is used ing. and movement is a Functional MRI. A needle is inserted through the skin and into the reservoir to administer medication and/or to obtain CSF samples. necrosis. The objective is improves the accuracy of a cran­i­otomy. count. A Functional MRI is done before surgery.org . An MRI scan is often performed before patients light directly on the tumor. often from National Brain Tumor Society | www. and navigate it radiation pellets or for other treatments. and brain stem. reducing the amount of radiation that reaches other tissue from necrosis (dead tumor cells). and it eliminates the need for the harming surrounding normal tissue. The doses may be hyperfractionated. Because of its location system. Over time. shining a laser the location and size of the tumor(s). residual tumor cells and prevent or delay tumor recur- Microsurgery Microsurgery involves the use of a high-powered microscope to magnify the operating area. or for tumors that cannot be completely information into a two-dimensional picture displayed on resected. The intensity of radiation is made to vary where the tumor was located and the surrounding across the beam. Radiation therapy may be used when surgery brain and are sent to a computer that transfers the is not advised.) Intraoperative MRI monly used for pituitary tumors.

Also. The blood brain barrier can the brain. a catheter be necessary to treat necrosis. dose SRS cannot be applied safely. Patients should have overall good health in order to tolerate the side effects of these treatments. LINAC. Proton beam radiosurgery is twice a day for several weeks. These fractionated doses therapy is usually taken orally or by injection. The most common short-term side effects of radiation therapy are fatigue. Short-term memory loss therapy. redness. The Gamma Knife is most effective for Knife can be used as a primary form of treatment. which directly to brain tumors is the polymer wafer implant. Chemo­­therapy is given in cycles. which keeps out harmful substances such as bacteria and chem­icals. These may occur months or years after high-energy x-ray that is designed by a computer to of unusual shapes. completed. ing. steroids. a cyclotron. The patient should brain barrier. coordination problems. chemotherapy can be phy­sically CNS stimulants may help alleviate symptoms. seizures. The brain has a defense mech­anism called the blood brain barrier. sources of energy and different methods to target the How does radiation destroy a tumor? tumor (see example images of radiosurgery on the right).org . While the blood brain barrier is open. Skin reactions (rash. Novalis Tx™. computer imaging to precisely locate the tumor. The prin­ciples are the same. loss of appetite. National Brain Tumor Society | www. Radiation works by damaging DNA. brain stem. or delayed. and for pediatric patients. used to delay or replace radiation treatment in young children. anti-coagulants. One approved technique to deliver chemotherapy Biodegradable wafers are saturated with the chemo­ the tumor cavity after the tumor has been resected. small target area. BCNU. The wafers are left there to dissolve over time. most Leksell Gamma Knife®. Similar to LINAC. Then consist of “on” and “off” phases—days of treatment Some patients may experience long-term. but they use different the body. Novalis Tx™ and cyclo- specific amount of energy that is absorbed by tron. It focuses a high dose of radiation to a radiation will die when trying to divide. called Gray (Gy). the cyclotron sends a a series of low doses of radiation are given over several followed by periods of time between treatments. personality changes. RT can result in delayed physical Proton beam radiosurgery is also called heavy particle growth and/or delayed cognitive development and can radiation therapy. although is not used.BRAIN TUMOR TREATMENTS 39   38 THE ESSENTIAL GUIDE TO BRAIN TUMORS several different directions. tumor cells that received dioactive cobalt. incontinence. manage them. XKnife®. chemo­therapy is delivered through the catheter. Chemo­therapy may be an important com(e.braintumor. treatment. or irritation) a secondary treatment after surgery. barrier and allow chemotherapy drugs to pass through CyberKnife®. and problems with reasoning and think- Proton Beam Radiosurgery the case of children. Inc. In this way. In protons (atomic par­ticles) produced by a machine called given in a single SRS treatment. or chemotherapy. or reproduce. Certain types of tumors do not respond to in some instances surgery.. memory loss. Brain edema may occur and may be treated National Brain Tumor Society | www. Synergy® S. A biopsy may be required to the blood vessels into the brain. Most can be treated or in some cases will decrease or dis­appear after treatment has been completed. and cognitive problems). Trilogy®. Inc. Loss of pituitary gland function can also occur. also prevent some chemo­therapy drugs from entering the shape of the tumor. The precision of delivery and lower individual usually subsides within two months after RT treatment is doses of radiation cause less damage to normal tissue. This method uses beams of charged cause learning disabilities. The Gamma Knife machine contains 201 sources of ra- Over a period of time. a concentrated dose of BCNU (approximately 100 times higher than that tolerated through IV) is able to bypass the blood brain barrier. Cycles therapy drug. side effects. SRT utilizes as they divide. courtesy of Elekta. and short-term memory loss (loss of SRT has some advantages over other types of radiation recently-learned information). degrees of memory loss. A linear accelerator is also used for Intensity Modulated of radiosurgery with fractionated radiation. or as with steroids. taxing. Several wafers are inserted into Radiation Therapy (IMRT). a technique called blood brain barrier disruption can be used to temporarily interrupt the (headache. CyberKnife®. Each dose of Gy represents a There are several types of machines that are used to administer radiosurgery: Gamma Knife®.org Chemotherapy is usually a secondary therapy. In this procedure. Delayed side effects can include varying match the shape of the tumor and avoid healthy tissue. Chemo- Sometimes dead tumor cells form a mass in the brain. for some large tumors. medulloblastoma). Some applications How is radiation measured? include: for tumors near the optic nerves. Necrosis may look like single beam that is designed by a computer to match treatment sessions. Mannitol disrupts the blood Radiosurgery images from top to bottom: Side Effects of Radiation Therapy Short-term side effects occur during or shortly after radiation treatment. or Radiation is measured by an international unit eyes. Gamma used to treat tumors at the base of the skull and tumors Chemotherapy therapy and the tumor has not recurred. The talk to the doctor about these symptoms and how to effects of mannitol wear off after a period of time. It is also a tumor on a scan and can cause similar symptoms Stereotactic radiotherapy (SRT) combines the precision add up to a larger total dose of radiation than would be given alone or in combination with other treatments. and hair loss may occur in the area where the radiation LINAC Radiosurgery Linear accelerator (LINAC) radiosurgery sends a single. nausea. This damage Gamma Knife Radiosurgery stops cells from being able to divide. Treatment may be given once or vary depending on the drug or drugs used.braintumor. Currently. Stereotactic Radiotherapy (SRT) chemicals (drugs) that have a toxic effect on tumor cells is focused. there is no definitive treatment There are some cases where chemotherapy treatment for the long-term effects of radiation therapy. he or she may be experiencing delayed side effects. CNS lymphoma. Newer methods of SRS do This allows SRT to be used in situations where single not use a head frame. Surgery and/or steroids may commonly used in patients with lymphoma. It may be This is called radiation necrosis. courtesy of Accuray. is fed into the cerebral artery. Chemotherapy is the treatment of disease by means of ponent of therapy for some “chemo-sensitive” tumors small tumors that are round or oval shaped. A drug called mannitol is If a patient begins to have symptoms after radiation injected into the catheter.g. courtesy of Brainlab AG make a correct diagnosis. However.

coughing. Italian broad beans. Low red Chemotherapy Drugs In general. National Brain Tumor Society | www. bananas. including: beer. can cause infection. yogurt. If chemotherapy affects the bone marrow. red wine.BRAIN TUMOR TREATMENTS 41   40 THE ESSENTIAL GUIDE TO BRAIN TUMORS Side Effects of Chemotherapy or redness occurs. This condition is called thrombophlebitis or deep vein universities and research institutes. slow healing Common Side Effects The following table shows commonly used chemo­ The drug’s generic name is followed in parentheses by mouth. nosebleeds. diarrhea. Chemotherapy can weaken the immune system. figs. the clinical trial may end early. white blood cells fight infection. skin reactions. Tyramine is also found in certain foods. homemade bread. and kidney damage.org . Notify your examines the protocols to make sure they are designed doctor immediately if swell­ing in the leg or arm. and platelets form blood clots to stop bleeding. Certain chemotherapy Clinical trials follow a treatment plan. and conducted with appropriate safeguards for the National Brain Tumor Society | www.) entire system. The studies are designed to determine the safety and side effects of new therapies. chills. dry mouth which cause increased blood pressure *Tyramine is a normal substance in the body that helps support blood pressure. and agents can increase the risk of developing blood clots. tongue. and soy sauce. Mucositis means in­flammation to the cells lining the mouth. If chemotherapy affects the di­gestive system. nausea. Please keep in mind that the side effects any individual experiences may not match those listed. This is the term for the low production of blood cells. dizziness. Inflamma­tion to the stomach and intestines can cause diarrhea. salami. Side effects are caused when the drugs damage normal cells that are dividing. dry sausages. or intrathecally (injected directly into spinal fluid) Temozolomide (Temodar©) • Phase III trials involve comparing a new treatment against a standard treatment for its effectiveness. eggplant. throat. pickled herring. and lips. Each Taken orally phase answers a question about the safety and effectiveness of the treatment being tested. stomach and intestines. the type of chemo­therapy drug may be changed. canned meats. The side effects of chemotherapy vary depending of the type of drug that is used and the parts of the body or systems affected. Clinical trials usually Lomustine (CCNU) undergo three phases before reaching completion. constipation. BiCNU©) Taken by IV or inserted during surgery by polymer wafer implant Cisplatin (Platinol©) Clinical Trials Clinical trials are research studies conducted on humans. • Phase II trials involve testing a treatment for effectiveness. soup cubes. cheese. If a drug or treatment is showing statistically positive results. Reactions can range from mild to severe.braintumor. or leukopenia. chills. can cause fatigue. Red blood cells carry oxygen throughout the body. sour cream. how they are taken. sores in the Chemotherapy and Biologic Therapy Drugs Taken by IV • Mouth sores. of cuts or scrapes. commercial gravies. so it is important to inform its brand name. Newer antiemetics chemotherapy patients may have experienced in the past. green bean pods. small red spots on the skin. are conducted by various institutions such as hospitals. and shortness of breath. fever. or vomiting. by injection. and the drug may be placed on the market more quickly. raisins. • High blood pressure • Minor nose bleed • Protien leakage in the urine • Nausea and vomiting (mild. and some of their common side effects. pink or Bevacizumab (Avastin©) the medical team of all side effects experienced. delayed) • Hair loss • Loss of appetite • Weakness (asthenia) • Fatigue INTRAVENOUS • Nausea and vomiting (mild) • Potential respiratory problems (smokers may not be able to receive a full course of treatment) • Fatigue • Myelosuppression • Pulmonary fibrosis POLYMER WAFER IMPLANT • Seizures • Intracranial infection • Abnormal wound healing • Brain edema (swelling) • Nausea and vomiting • Neuropathy • Weakness • Fatigue • Hearing loss or ringing in ears • Kidney damage •  Fatigue •  Nausea and vomiting •  Diarrhea •  Low white blood cell count •  Low platelet count •  Hair loss • Fatigue • Loss of appetite • Nausea and vomiting • Myelosuppression • Loss of appetite • Nausea and vomiting • Mouth sores • Fatigue • Pulmonary fibrosis (inflammation and internal scarring of the lungs) Taken orally • Constipation • Nausea and vomiting • Fatigue • Headache • Myelosuppression Vincristine (Oncovin or Vincasar PFS©) • Jaw pain • Constipation • Fatigue • Neuropathy Procarbazine (Matulane) • Fatigue • Abdominal pain Taken orally • Nausea and vomiting • Constipation • Nervousness • Myelosuppression • Rash • Need to avoid foods high in tyramine* Carboplatin (Paraplatin©) Taken by IV Carmustine (BCNU. liver. and fatigue. and/or a burning sensa­tion during urination. and the effectiveness Irinotecan (CPT-11 or Camptosar©) Taken by IV of new and current treatments.braintumor. or difficulty chewing or swallowing. bleeding gums. leg pain. it can cause mucositis. A group of patient thrombosis (DVT). menopause. or protocol. burning or tingling sensations. There are treatments available to alle­viate many of the side effects. Uncommon side effects may indicate a serious problem. sweating. hair loss. red urine. Low white blood cell Low platelet count can cause easy bruising. red plums. (See Most chemotherapy drugs enter and affect the patient’s chapter 6 for more information about DVT. a condition called immunosuppression. it can cause myelosuppression. including rashes and nausea. Other side effects of chemotherapy include neuropathy (numbness and tingling in the arms or legs). All side effects should be reported to the doctor. fava beans. This makes a patient more susceptible to infections. blackness or blood in stools. The differences between the phases are as follows: •  Phase I trials involve testing a treatment to determine a safe dosage and its side effects. or heavy menstrual periods. the chemotherapy used to treat people with brain tumors is well tolerated. DVT requires medical treatment and advocates called the In­stitutional Review Board (IRB) can develop to a life-threatening condition. In some cases. Each patient's reaction to chemotherapy is unique. sore throat.org • Fatigue • Generalized weakness •  Abnormal wound healing • Blood clots Taken by IV Taken by IV count. avocados. Do not rub or massage the area. Inflamed mouth or throat can cause dryness of the mouth. Methotrexate (Rheumatrex or Trexall©) Taken orally. Name (antinausea drugs) have greatly reduced the nausea blood cell count or anemia. Oncologists or oncology nurses will work with patients to minimize or prevent anticipated side effects. Some chemo­ther­apy drugs can cause infertility. therapy and biologic therapy drugs. vermouth. chocolate.

National Brain Tumor Society | www.org or contact the National Cancer There are both benefits and drawbacks to consider. a portion of the rence after surgery. treatments that have already been received. or to help find a cure. The transferred gene then acts as a tu­mor suppressor. Research is ongoing and several different im­mu­notoxins are being developed. health. and locations? Is there a participating institution closer to treat brain tumors as an initial treatment or for resistance to normal signals that induce cell death to home? recurrence. which interfere with the growth of blood vessels that feed the tu­mor. and specialized immune cells in the body learn to recognize the abnormal tissue. radiation therapy or chemotherapy. Typically. Instead of dying. mutated DNA. men and women being conducted.cancer.braintumor. Immunotoxin therapy is a process of fighting cancer cells by introducing a toxin directly into tumor cells. irinotecan. and even guilt. Vaccine are also FDA approved for treatment of other medical therapy is still experimental and has not yet been conditions. If a patient is considering participating in a trial. Biological response modifiers (BRM) may (brain tumor) program? • What is the phase of the study? Has it been tested on people with brain tumors before? • What tests. growth inhibitors. receiving these drugs are required to use at least two Some of the new biologic therapies are: angiogenesis stay? If so. there are new chemotherapy treatments.BRAIN TUMOR TREATMENTS 43   42 THE ESSENTIAL GUIDE TO BRAIN TUMORS patients. individual institution. and immunotoxin therapy. There may also be unexpected What happens after treatment is over? After treatment is over. causing the tumor the viral vector carrying the non-mutated gene into the tumor. or vector. a new suppressors. the toxins are attached to other proteins that will selectively target only tumor cells. and loved ones will go through a range of emotions and reactions to a brain tumor diagnosis and treatment. Immunotoxin therapy is experimental. Alternatively. These drugs process of developing a patient-specific vaccine. patients will be monitored closely and asked to report all symptoms of the treatment.e.org a carrier. The doctor may decide to take scans every two to six months depending on the tumor type and patient’s status. Tumor suppressors tell cells to die when “Be aware that the patient. and the virus acts as brain tumor is removed from a patient and processed Bevacizumab (Avastin©) is an angiogenesis inhibitor • Does the center have a designated neuro-oncology non-mutated gene into a tumor. when it was diagnosed. braintumor. Most trials have a series of criteria a patient For more clinical trial information visit www. Both isotretinoin and thalidomide cause proven to work in all patients. The virus attaches to the tumor cells and transfers the gene into them. An immunotoxin is a poison linked to a part of the Other biologic therapy drugs continue to be developed and many are currently being tested in clinical trials. The goal of immu­no­toxin therapy is to target tumor cells and kill them without harming normal brain cells. needs to meet in order to participate. trial. the trial he or she chooses will depend on the patient’s tumor type. investigations are ongoing to develop vaccines against proteins that are Isotretinoin (Accutane ©) and thalidomide (Thalamid©) unique to tumor cells in general. BCNU). Some biologic therapies can cause the body to produce larger amounts of BRMs than normal. antisense therapies (proteins designed to block the function of another protein). gene option for treatment for people who have tumor recur- side effects. some in combination with previously approved agents (i. the ability to invade brain tissue. There is an IRB at every institution that is When a decision is made to participate in a clinical conducting research. Par­ticipants are also among the first to benefit if a new approach is proven effective. This may be achieved system to attack the tumor. In cal care. sorafenib (Nexavar ©) and that it is part of your doctor’s responsibility. Biologic Therapy Drugs • Who is conducting the study? Is it conducted by an damaged. the patient or his/her representative will undergo People participate in clinical trials for a number of reasons: to try a new treatment method. This vaccine of processed tumor tissue is then injected into the patient’s skin. but also to help pa- Other Biologic Therapies tients and their families cope with the disease. family.gov. their DNA becomes damaged. friends. or part of a national study? uncontrollably. Therefore. they multiply addition. and women are required to Immunotoxin Therapy take monthly pregnancy tests. to contribute to developing improved treatments. A patient can decide to leave the trial at any time. The patient’s immune system recognizes the injected substance as foreign or abnormal. In­stitute (NCI) at 1 800 4CANCER (1 800 422 Participants in clinical trials receive high-quality medi- 6237) or visit www. which make cells less likely to divide. not erlotinib (Tarceva©). most patients are usually monitored for tumor recurrence on a regular basis through MRI or CT scans. Gene therapy is a method to introduce a therapy. Biologic/Targeted Therapies Biologic (also known as targeted) therapies offer an inhibitors. and commitment of time does the study involve? Does it involve a hospital be naturally occurring substances in the body that fight infections or diseases or agents specifically designed to target specific cellular pathways. which would eliminate are other biologic therapies being tested in clinical the need to undergo the expensive and time consuming trials for use in brain tumor patients. for how long? • What other choices are available? How does the by inserting the gene into a virus. such as an antibody or protein. they direct other immune cells to try and kill the tumor cells. During the trial. (apoptosis).” –Radiation oncologist Gene Therapy Clinical studies have identified certain genes as tumor body’s immune system. A number of clinical in the tumor cell that give the tumor its characteristics. Informed consent will explain the study’s treatments and tests as well as possible benefits and risks. I feel strongly forms of contraception. study treatment compare to the alternatives? • What potential side effects may occur and how can they affect day-to-day life? • What does the treatment cost? Is any part of it provided for free? Obtaining the answers to these questions can help a patient decide which treatment is right for him/her. Vaccine Therapy This method attempts to use the patient’s immune in a number of ways to produce a vaccine. Those immune cells circulate around the body and if they come in contact with brain tumor cells. but much research is severe birth defects. If a patient agrees. Cancer cells have cells to die. anger. acceptance. treatment may not be better than or even as good as the standard treatment. trials are underway to investigate the use of beva- These characteristics include increased rate of growth • Where is the study being done? Are there multiple cizumab alone and in different drug combinations (proliferation). The toxins are usually bacterial. and the patient’s state of a process called informed consent. The body normally produces small amounts of some BRMs. The trials include drugs such as cediranib (Recentin©). Surgery is often required to directly inject differentiators. and A patient should ask the following questions when Biologic therapies work through a variety of mechanisms deciding on a clinical trial: that has been granted accelerated FDA approval to including stimulating a person’s own immune system treat glioblastoma in patients who have progressive to turn against the tumor or targeting specific pathways disease following prior therapy. National Brain Tumor Society | www. treatments.org . he/she or the representative will sign a consent form.braintumor. Because of the risk of introducing toxins into normal brain tissue. However. just to deliver the treatment. These feelings will include denial.

activate the immune system. where taking. anxiety.braintumor. There is a need to Healing touch involves the laying on of hands by a maintain adequate protein intake. depression.org . through the practitioner’s palms. the patient is externally guided to communicate with foods. exercise.BRAIN TUMOR TREATMENTS 45   44 THE ESSENTIAL GUIDE TO BRAIN TUMORS pain. yoga. difficult to find qualified practitioners because ayurvedic decrease liver toxicity after chemotherapy. an energetic imprint of the original substance. Ask the doctor if a particular Benefits of massage therapy can include stress diet has any specific contraindications (things not reduction. he or she can tolerate. commu­nication system. Qi gong postures may improve specific physi- between the CAM provider and physician is strongly ological weaknesses. and may have an adverse effect on radiation treatment and improvement of range of motion in the joints. It is used to treat the same disorders as acupuncture. and muscle weakness. chiropractic. Alternative medicine is used instead of standard therapy. where the diarrhea. known as chakras. or mind over matter. what it wants. and insomnia. increase circulation. diagnosis their hands. and interactive. chemotherapy. This treatment may return balance Guided Imagery to the CNS to enhance immune function and decrease The goal of CAM is to enable patients to tolerate higher This involves using visualization. While homeopathic remedies are readily available. or examination. neuropathy. Massage therapists ap- situation. strength. qualified practitioner. weakness. Licensed doctors of homeopathy are common throughout the United States. including the musculoskeletal. needles are seldom used. to oriental practices such as Tai Chi. for example. Exercise The primary purpose of exercise is to enhance—rather than deplete—energy. pressurized pump. increase in blood circulation and lymph recommended). This method inserts immunotoxins into the brain by a small.org National Brain Tumor Society | www. There are several types of healing touch. however. Herbal Medicine Herbal medicine utilizes plant and animal substances brewed into a tea or manufactured into powder or capsule form and taken orally. under Diet and Nutrition the supervision of a CAM health professional. massage therapy. FDA’s current requirement to regulate quality of herbal side effects. The goal is to breathe properly and increase lung capacity. ayurveda.000).e. edema. It is immune function of specific organs. This is similar to vaccination. It is also important for the patient to doctor before beginning any exercise regimen. dairy. it is also quite useful people read about the many approaches available and Massage Therapy become educated. which is based on Indian medical the painless insertion of disposable. muscle atrophy. light weight lifting. avoid unsafe herb-drug interactions. healing touch. In order to Tai Chi and yoga postures may enhance the immune physicians are not yet licensed in the United States. Homeopathy is used to treat most major symptoms and disorders. and/ or acidic and spicy foods. Patients should tell their medical providers patient externally or internally guides the immune about any herbal medicines or supplements they are system to perform specific tasks. They range from macro- Acupuncture biotics. The purpose of altering the diet is to provide additional the disease to gather information from the unconscious. a diet high in antioxidants flow. Integrative medicine is a combination of conventional medicine Acupuncture is primarily used to treat body pain. homeopathy. The patient should always of spinal vertebrae. and/or chemotherapy. with complementary and/or alternative therapies. hair-fine needles principles. The major systems of CAM include: acu­puncture. substances. constipation. It is important to make sure that herbs prescribed conform to Good integrate CAM into conventional medicine safely. which was developed in India. and what it needs to make it go away. headaches. but approximately 37 states in the United States presently license massage therapists. guided imagery. neuropathy. Basic alterations frequently Homeopathy The patient tries to understand why the disease is pres- include an emphasis on organic “whole” (unprocessed) Homeopathy involves the ingestion of modified or ent. which are founded on into various points on the surface of the body. diet and nutrition. be monitored by a board certified herbalist and to use Chiropractic Chiropractic involves the adjustment or manipulation only quality-controlled herbs. relaxation of muscles to relieve chronic pain. However. diarrhea. CAM also aims to increase the quality of two types of guided imagery: suggestive. It is recommended that imbalances in body temperature and energy fields. or qi gong. Complementary and Alternative Medicine (CAM) Standard or conventional therapy for brain tumor patients usually means surgery. Convection-enhanced delivery is currently being tested in clinical trials as a promising tool in the treatment of brain tumors. It is more important for the patient to eat whatever food Acupuncture should not be used when the following conditions are present: a low platelet count (<15. and muscle therapy or radiation treatments. blood thinners such as Coumadin). meditation. fatigue. For example. headaches. weight It is not recommended to alter the diet during chemo- loss. and vitality. and avoidance of refined sugar. energy for immune function. Massage techniques affect various systems of the body. GMP is the doses of standard therapy at closer intervals with fewer and effectively enhances immune function. relieve National Brain Tumor Society | www. The treatment is usually admin­istered over a period of several hours and is often completed during one sitting.. hemophilia. lymphatic. Con­vection-enhanced delivery is able to bypass the blood brain barrier. circulatory. which in turn benefits the immune system.. including therapeutic touch and reiki. Healing Touch however. herbal medicine. and nervous systems. mood swings. The goal is to gently inform the body of a foreign pres­ence so that the immune system will attack it. It may Western medical principles. Training requirements for massage therapists vary from state to state. Complementary medicine is used in addition to standard therapy. constipation. There are body pain. and/or the use of medications that increase bleeding (i. The goal is to enhance is based on complex pulse analysis and a physical Exercise can include walking. radiation. Like acupuncture. insomnia.” –Neuropsychologist Convection-enhanced delivery is an experimental method to introduce immunotoxins into tumors. Meat intake is minimized.0). vomiting. which is based on Asian medical principles. one should not attempt to selftreat. watered down viruses and bacteria believed to carry Major Systems of CAM There are countless CAM therapies available today. It is important to consult with a recommended.braintumor. nausea. involves to ayurvedic diet. consists mainly of specific dietary recommendations and customized herbal preparations. Exercise has some secondary psychological benefits as well. fish may be substituted. “Every patient is a unique person in a unique environment. life both during and after treatment. A simple definition of CAM is anything people do other than conventional therapies to maintain or achieve good health. Chiropractic is primarily used to treat Manufacturing Practice (GMP) standards. then find a licensed CAM profes- Massage therapy involves manipulation of muscles and sional to help make the right choice for their particular connective tissues of the body. inflammation. ply pressure to the surface of the body primarily with in treating anxiety. when appetite is poor. which was developed in China. and balance the central nervous system.. throm­bosis or embolism (blood clots). The goal is to detect and correct Several types of diets exist. Acupuncture. and nutritional supplements. a low white blood cell count (<1. Ayurveda Ayurveda. to blood type diets.

S. • What did I like to do prior to diagnosis (i. minerals. tell your experts in rehabilitation. For example. There are several innovative assistive devices to help with eating and dressing. and funding to allow them access to assistive and/or chemotherapy treatments. Meditation generally involves spend- could try reading exercise books.gov. in­tellectual. mind. Handrails and grab rails. However. The doctor should be aware of any nutritional supplements a patient is consuming.org . shamanic. see the U. balance and strength. since such exercises are essentially moving various types of meditation including transcendental. weakness. government benefits website at www..braintumor. Every person with a brain tumor deserves to function optimally. • Hemiparesis (numbness. guided.46 THE ESSENTIAL GUIDE TO BRAIN TUMORS Meditation might try one of the various types of meditation. A full program of healing must incorporate all three aspects. Symptom Management The following chapter includes explanations of different symptoms and side effects that can be caused by a brain tumor or its treatments. Patients should follow their Physical Symptoms antioxidants can reduce the effectiveness of radiation instincts on how they feel about the practitioner. with a slant toward the patient’s personality. A spiritual person may enjoy meditation or practicing yoga. There are Chi.abledata. then exercising ing time sitting or lying comfortably and quietly in a way consistent with what he or she learned and breathing deeply. etc. people should ask themselves three questions: • What kind of person am I? Three personality types are kinesthetic (or physical). • Never stop taking medications without first talking to your doctor.braintumor. and others. the practitioner’s response. and Oriental nurses can provide patients with guidance for coping medicine. For more information about federal and state programs and assistive technology resources. • Bowel and bladder dysfunction People with any of these symptoms may benefit from one of several forms of treatment available at rehabilita- Medication Tips tion centers. Regular range of motion exercises to the affected limb and • Medications should always be taken as directed. some practitioner is to ask a complex medical question to nutritional supplements have negative in­teractions with which the patient already knows the answer. Use of nutritional supplements requires supervision by a board certified herbalist or nutritionist. People can also ask their doctors for personal with symptoms and side effects. Physical and occupational therapists are • To prevent harmful drug interactions. patients to other specialists within the health care system. proper positioning help to decrease pain and freezing of National Brain Tumor Society | www. Brain and spinal cord tumors can affect parts of the tion products that can help maintain computer access central nervous system that control movement. There are also assistive technology and accommoda- technology. If permanent mobility problems occur there are several options to continue with a good quality of life. Learning to manage symptoms will contribute to an overall better quality of life. Ways to Approach CAM There are three aspects to our being: body. Some that link people with disabilities to services. meditation. or paralysis on one side of the body) • Difficulty with balance • Visual and spatial disorders shower chairs are some of these assistive devices. and spirit. or www. • If you experience side effects with any medication. govbenefits. Occupational therapists teach doctor about any medications you may be patients how to manage their side effects so that they taking. Meditation has been used for needs to be more physical might try yoga or Tai thousands of years with no adverse effects. there are many assistive devices to help with mobility. A spiritual person who for reducing stress. including pharmacists. Nutritional Supplements There are a variety of substances (vitamins. Two major types relevant to brain tumors are antioxidants (organic substances that counteract the damaging effects of oxidation in living 6. psychologists. It is extraordinarily effective about appropriate exercise. the five senses. This is a process of clearing the mind so that one can An intellectual who wants to be more physical achieve relaxation. Physical therapists help patients improve their walking. • How can I combine my talents to achieve my health goals? A physical person who wants to be more spiritual National Brain Tumor Society | www. The exercises and positioning are commonly important to determine his or her validity. as well as aids for poor vision. report them to your doctor right away. and bath or tissue) and COX-2 inhibitors (drugs that block an One way to test the knowledge and honesty of a enzyme which causes inflammation). prac­titioners of acupuncture. Look for tions a doctor may prescribe to manage brain tumor shown to the patient by a physical or occupational licensed and/or board certified nutritionists and symptoms and treatment side effects. Doctors and therapist. low vision. and spiritual. and functioning around the house. and motor skills. An intellectual might prefer reading or psycho­therapy.org workers. Observe certain Western medicines and therapies.e. Choosing a Practitioner When a person is choosing a CAM practitioner. it is This chapter also discusses some of the various medica- the limb(s).com. occupation and hobbies)? A kinesthetic or physical person might like cooking or exercise. homeopathy. herbal supplements.) that may strengthen the immune system and/ or organ function. physi- and independence. and can also refer recommendations. To figure out the best approach. and social In addition to exercises. so patients need to be evaluated for the appropriate rehabilitation and treatment. including over-the-counter drugs and can go about their lives and perform daily activities. Federal and state programs exist cal sensation. technol- physical symptoms may include: ogy.

occur- After analyzing the results of the tests. The types and qualities of headaches patients experience depends on the type and location of the tumor. When full recovery is not possible. This may be a tension headache with lo­calized pain around the surgical site. to loss of consciousness. The evaluation methods are not standardized. Once the initial post-operative headache is relieved. experience serious loss of mental or physical abilities.org . Patients may experience difficulties with language use. judgment. A series of tests conducted by a licensed neuropsy- cognitive rehabilitation therapy will be provided at home. and frequent mood Neuropsychological Testing changes. uncontrollable burst of electrical activity in the brain. This may indicate the need to be evaluated for tumor recurrence.braintumor. It can cause a range of reactions. Seizures can be dangerous to patients. learning restrictions in the United States. and disoriented. meningiomas. There are many differences in the laws regarding driving Cognitive Rehabilitation other neurological symptoms such as nausea or Cognitive rehabilitation is designed to help people regain vomiting. and can help develop a plan for rehabilitation. Some people only experience one seizure while others suffer from reoccurring seizures. and emotions. This can tion techniques include learning to live with memory cause a strain on both the patient and his or her family loss by keeping calendars and organizers. most patients do not experience more headaches. and associated with are common with slow-growing gliomas. or epilepsy. experiences major behavioral and personality changes than one thing at a time) • Emotion and personality: depression. help compensate for difficulties. anger Neuropsychological testing is the method used to management training. behavior and/ or emotions. In these instances. treatment Headaches are often due to edema. palliative steps are A neuropsychologist is a licensed psychologist who has specialized training and experience studying how the brain activity and behavior. Some patients will begin to experience headaches near taken to relieve symptoms and increase the patient’s brain functions. The typical brain tumor headache is described as severe. and multi-tasking (doing more Seizures mental and behavioral abilities. Seizures Headache Headache is a common initial brain tumor symptom. However. This is dangerous because the patients’ seizures will go untreated. These are methods brain caused by the tumor. executive functioning.” for the pain in order to maintain a good quality of life. dis­inhibition. He or she studies the impact that brain damage has on a person’s functioning and abilities. general intellectual abilities. irritability. attention and concentration. chologist can assess the patient’s emotional state.braintumor. Therapy can include tasks and exercises to decreases the headaches by relieving the pressure. being willing tients. and taking away some of That way. they to think outside the box and being willing to say need to be carefully evaluated and treated specifically I want to try something different. anxiety. obsessive-compulsive tendencies. Many patients have tension headaches. Although neuro­psychologists are often not expe­rience in talking with many other patients. A neuropsychologist can help brain tumor patients and survivors evaluate changes resulting from their brain tumor or treatment. a person’s attitude.org the person must be seizure-free for a specific period of medical advisory board evaluates the person and makes a recommendation. Seizures also be taught how to modify the patient’s lifestyle to may be the first indi­c ation of an abnormal growth. The return of head­aches can be a sign of recurrent edema or tumor growth. learning and memory. after surgery some patients may experience post-operative headache. This brain the tumor is located and what method of treat- been lost. If a patient members. and certain precautions should be taken to avoid injury. worse in the morning. staring. When patients continue to have head­aches. Steroids such as dexa- time (usually 3. A neuropsychologist may offer training in compensation techniques for the mental and/or physical abilities that cannot be fully regained. an abnormal. For example. a as much of their mental. For the sake of safety. brain tumor advocate therapy. and/or reading • Attention and concentration: being easily distracted.SYMPTOM MANAGEMENT 49   48 THE ESSENTIAL GUIDE TO BRAIN TUMORS Cognitive and Behavioral Symptoms A brain tumor or its treatment(s) can cause changes to a person’s cognitive (thinking) abilities. mood swings. stimulants such as methylphenidate (Ritalin) may improve cognitive function. • Language: difficulty speaking. people who experience uncontrolled seizures are restricted from driving a car or motor vehicle. consulted until after treatment. from muscle contractions. a more accurate comparison can be made of the fear. Compensa- ability to work or go about his/her daily life. However. frustration. and work or school. difficulty doing more than one task at a time • Learning and memory: short-term memory loss. Re­ferrals can also be found in rehabilitation settings. swelling of the includes compensation techniques. This evaluation helps to identify the areas of the brain that have been affected “Knowing that you aren’t alone has been. 6. ment is received. in my by the tumor. and to understand how functions within the brain influence thinking. Some states require doctors to report patients who experience seizures to motor vehicle agencies. Pain of this source is often relieved by analgesics (pain kill­ers). he or she may benefit from counseling. Whether or when driving privileges are restored depends on whether the seizures can be controlled. Seizures are a common brain tumor symptom. or 12 months). or 2) a physician or The symptoms will vary depending on where in the to develop other skills to make up for those that have methesone may be prescribed to reduce edema. writing. and metastatic brain tumors. A seizure is a sudden attack or con­vulsion caused by ring in 60 percent of all brain tumor patients. speech and movement. the end of life. These difficulties may affect a patient’s strengthen sight. the neuropsychologist can make recommendations for rehabilitation. Two basic approaches “I attribute my survival to being willing to take Headaches are rarely persistent in brain tumor pa- risks on unconventional therapies. Check with your state department of public safety for more information regarding local laws. and emotions. Caregivers and/or family members will What is a neuropsychologist? Surgical removal of the tumor will often relieve headaches as well. –Glioblastoma survivor National Brain Tumor Society | www. are used to determine if a person is allowed to drive: 1) as pos­sible.” changes that may occur following treatment. or medi­cations to help patients regain as much function as possible. National Brain Tumor Society | www. so they vary from one doctor to another. patients should report seizures in all cases. For people who identify changes in the cognitive functioning of a patient. and withdrawal including impulsiveness. Some patients may not tell their doctors about their seizures because they are afraid that they will lose their driving privileges. –Libby Stevenson. and tongue biting. slowed thinking • Executive functioning: difficulty with problem solving. it may be preferable to the single most significant factor in improving have a neuropsychological evaluation before treatment. confused. physical and emotional abilities smaller number have migraine headaches. Neuro-oncologists or neurologists can give a referral to a neuropsychologist. or medication. A neuropsychologist does testing and research to attempt to explain the relationship between comfort.

and shallow breathing. It can limit a person to accomplishing no On rare occasions. asking for assistance from others. or a strange sensation in one hand.braintumor. antiseizure drugs. the AED may be tapered should ask his or her doctor for more information about off. particularly the weaker leg.” –Anaplastic Oligodendroma survivor experience high energy at certain times of the day. physical or emotional stress. An example of a focal seizure could be jerking of one arm. If the person is having a grand mal seizure. biting. disrupting the blood flow. PE can happen suddenly and can be life mouth. Simple Partial Seizures Simple partial seizures do not cause altered consciousness. Medical treatment for fatigue has shown varying drug interactions. during. It is important Generalized seizures are also called tonic-clonic or to remember that side effects of these AEDs vary greatly grand mal seizures. Studies using methy­­phen­idate or modifinal show varying results. and resting when necessary are some ways to manage fatigue. often in the legs. results. AEDs should never be stopped abruptly. By National Brain Tumor Society | www. Help the person lie on his or her side if possible. are metabolized (absorbed) through a specific path­way block one or more veins. levetiracetam (Keppra ). try to protect the head from banging or getting bumped. Many medications will either Patients with glial tumors expe­rience an increased increase or reduce the effect of AEDs. patient may be aware of his or her surroundings but ways to use their limited amount of energy efficiently. Generalized seizures may or may not begin as effects. daily activities according to energy levels. or a change in medications that can alter understand how and when fatigue occurs and to plan levels of antiepileptic drugs. A low red blood cell count (anemia) is one cause of fatigue. and/or pain in the leg where it is pressed or when the foot is flexed upwards towards the face. incontinence. chewing or lip smacking. Keep track cease by itself. but may be worth considering. This is called pulmonary is breathing. including or as a precautionary measure. blood clots in the leg may break more than one activity a day. Ad- cause deep vein thrombosis (DVT). A medication. or after the seizure. Most people “Finding little solutions that increase my stamina is satisfying and gives me some sense of control. behind the knee. using devices such help your doctors recognize possible Antiepileptic Drugs (AED) patients can perform their daily activities at these times. If the patient has not carbamezepine (Tegretol ).braintumor. Fatigue is not relieved loose and travel to the lungs.org . ® ® ® Some possible side effects of AEDs include loss of balance. The seizure can be short or may last for an extended length of time.SYMPTOM MANAGEMENT 51   50 THE ESSENTIAL GUIDE TO BRAIN TUMORS There are two common types of seizures associated with and legs. the patient may experience limpness. asso­­ciated with dysfunction seizure control needed and the side effects from the of the temporal lobe. It can last for a short period of one or more blood vessels. partial (focal) and generalized seizures. It can be the initial symptom embolus (PE). Remove harmful objects around him or her to prevent injury. For this. Make sure the person by a good night’s sleep. buzzing in the ears. Blood Clots (Thrombosis) actions with other drugs. some production of clotting factor in their blood. a doctor may change a patient’s medication. confusion. and will over-the-counter products. in the bloodstream. and epilepsy drugs. The clots toiramate (Topomax®). ® ® One concern when taking AEDs is the possibility of inter- fatigue. are confusion and hallucinations (imagining sights. and skin rashes. resulting in being confined to bed for a short period of time. Medications that are used to control seizures have tasks. Other symptoms include tongue Partial Seizures Partial or focal seizures result from a tumor affecting one part of the cerebral hemisphere. Blood tests and other methods are used to monitor possible drug interactions. This can Some of the more common AEDs are lamotrigine (Lamic- chemo­therapy drugs prescribed to brain tumor patients unable to speak before. or sore of symptoms that are possible side muscles. stay with the person and allow the seizure to pass. Time the seizure. If the seizure lasts longer than five minutes or if a second seizure follows the considered one of the most debilitating symptoms and first one. A rash is an allergic reaction. They begin with a sudden attack or from person to person. call for emergency help. Afterward. twitching. Many other drugs are metabolized through the same pathway. sweating. and sounds). Seizures may be triggered by alcohol use. The type these medications. and is a common side effect of threatening. experienced seizures or if the patient is seizure-free for tigabine (Gabitril®). and valproate (Depakote®). where they can block If someone is experiencing a seizure. These seizures may last for several minutes before the patient returns to full awareness. When a patient experiences severe may be put on AEDs if he or she expe­riences a seizure Other anti-epileptic drugs are available. of the brain tumor. depending on the cause. the doctor may prescribe a drug to stimulate alertness. as grab rails and extension handles to assist with basic several names: antiepileptic drugs (AEDs). particularly in the affected leg. Call for emergency help if the person is having trouble breath- surgery. tingling or numbness in one part of the body. If side effects are a serious loss of physical control that can cause flailing of arms problem. Another symptom is hemiparesis (partial paralysis). gabapentin (Neurontin ). DVT can cause loss of mobility. The most commonly used AEDs ditional symptoms that may follow this type of seizure in which blood clots form. then twitching and brain tumors. side effects of a brain tumor because it limits a person’s Patients who suffer from multiple seizures should keep a journal of when and for how long the seizures occur degree of physical activity. A patient red blood cells. phenytoin (Dilantin) and may interact with AEDs. so that the doctor can identify a pattern. The various drugs compete with each other. a patient may be put on medication to help produce more sants. sleepiness. Fatigue is ing or is injured. Complex Partial Seizures becoming aware of personal energy level patterns. and dilated pupils. Do not put anything in the person’s time or for many years. itching.org National Brain Tumor Society | www. altered loss of consciousness. or in the thigh. They can cause involuntary jerking. anticonvul- and amount of medication is based on the level of They can also learn to conserve energy and develop Organizing their home and time. fatigue. Helping Someone Who is Having a Seizure exhaustion. Fatigue Fatigue can vary from a feeling of tiredness to total Common signs of DVT are tenderness or pain in the calf. There are two types of partial seizures: simple partial seizures and complex partial seizures. A patient an extended period of time. Specifically. Complex partial seizures. These are important ways to partial seizures. The most common way to manage fatigue is to other illnesses that put a strain on the body (such as colds or flu). This changes the effectiveness of either or both drugs. There may be swelling in one leg. radiation therapy and chemotherapy. jerking eye movements. odors. headache. including usually lasts two to three minutes at the most. relaxing of muscles. loss of consciousness. The seizure Keep a list of all medications. and the patient Generalized Seizures must be seen by a doctor immediately. DVT is a condition tal ).

and treatment. but the patient never fails the thoughts. but are not cured. amazing things happened. thyroid. apathy. ness. The brain is the essence of who we are. However. In addition. and everyone deals with his or her again. “Survivorship” is a symptoms will stop. After surgery. or purple). chest or back doctor may prescribe laxatives. sweating. which stimulate the muscular action of the legs to keep the blood flowing.org * Editor’s Note: This chapter makes several references to cancer.52 THE ESSENTIAL GUIDE TO BRAIN TUMORS Symptoms of PE are shortness of breath. an onset of fatigue. Several methods are used to prevent DVT from occurring. “Will I survive this disease?” and “When will I calling yourself a survivor after your treatment ends. Patients and caregivers need to be aware of the symptoms. social worker.braintumor. depression can and should be treated. When constipation pain. You may feel uncomfortable question. swings. That is because sources for this article included the National Coalition of Cancer Survivorship and the National Cancer Institute. patients will usually ask the brain tumor differently. You are a survivor—from the moment of your brain follow-up visits. Physicians may have nurses or physical therapists teach patients leg exercises while in the hospital.” Survivorship is an ever-changing process. constipation. It may be helpful in places to substitute the words “brain tumor” for the word “cancer. including those with a benign diagnosis. the 1960s. or beyond brain tumor disease. You may use the cially due to decreased physical activity. persistent cough. or steroid levels. It controls our ments may fail the patient. blue. stroke.” National Brain Tumor Society | www. emotionally. The The doctor or nurse will work with patients to address medical community began to use “survivor” to describe this problem. Anti­nausea medications called antiemetics are available for people who experience nausea life-threatening illnesses. Many patients struggle to make sense of the changes and to feel a sense of order and making my tumor go away. For everyone involved. Some patients survivor. through. some structure into his cancer experience by proposing and others lose the battle against brain tumors. Survivorship (NCCS) introduced the following definition A brain tumor diagnosis usually turns the patient’s world of survivor. the This definition is not accurate for patients who may live in life. Treat- the following three survival stages. chronic problem that causes mood and personality changes and sexual dysfunction. or clergy experienced in working with patients with Nausea and Vomiting Nausea and vomiting may occur in patients with cerebellar or brain stem tumors and in patients undergoing chemotherapy. brain tumor patients wear pneumatic compression stockings. a physician and cancer more than five years. requiring treatments many years Reflections of a Physician with Cancer. While many of these symptoms can also be attributed to a tumor. How physically. estrogen. communication. testosterone. an individual diagnosed with cancer thin the blood and prevent the formation of blood clots. because of the unique nature of brain tumor disease and its consequences.” –Meningioma survivor National Brain Tumor Society | www. “From the moment of its discovery and for the balance of life.org . treatments and can include decreased pleasure in usual activities. movements. The concept of survivorship includes everything in life that changes as a result of the diagnosis and its aftermath. anxiety or restless- not alter quality of life. A doctor can explain the options. and mood tumor diagnosis until long after treatment ends. Depression upside down.” term when you feel some normalcy in your life. or avoid “Survivor” Defined the term altogether. we feel that the information presented here is relevant to all brain tumor patients and survivors. pro­gesterone. If there is no relief with this regimen. “I eventually came to the realization that the whole process was not just about avoiding pain family members whose loved one died of cancer. At some point. Please keep this in mind as you read through the chapter. Survivorship Patients diagnosed with brain tumors go through a very difficult and lifethreatening experience. What is the definition of a brain tumor survivor? Before Stages of Survivorship and/or vomiting. and spiritually. an experience of living with. Symptoms uncertainty. arises. MD. growth. This can be a disturbing.* The Brain tumor survivorship involves much more than the label “survivor. pituitary or pineal glands. Adding fiber to the diet and increasing those who lived for at least five years after their physical activity are common methods used to alleviate diagnosis or the end of their treatment. espe- Depression is common in people with brain injury. the term “survivor” was primarily used for Constipation definition changed when patients began living longer Constipation is a common side effect of chemotherapy. wrote an essay entitled “Seasons of Survival: may go into remission. everyone takes on this definition. This is why the National Coalition of Cancer organ functions. Not all brain tumors are malignant. Through the diagnosis. Post-surgery patients are encouraged to get out of bed and walk as soon as possible. It is wrong to suggest that some patients triumph. he inserts later. or as a delayed effect of radiation therapy. does that feel to you? It is important to know that not Patients may want to know when treatments will end. or head injury. This chapter examines what it means to be a brain tumor survivor. due to new radiation and chemotherapy treatments. the brain tumor DVT and PE may occur after hospitalization. experience is a journey into an unknown land filled with including tumor. Fitzhugh Mullan. Treatments include anti-depressant medica- Other Symptoms tion and counseling with a psychologist.” In it. patients may receive a small dose of heparin or a heparin derivative to Hormonal Changes Changes in hormones and endocrine function may occur due to tumors in the hypothalamus. When I started living my life that way. These conditions require specialized treatment and monitoring by an endocrinologist. ask the doctor or nurse to develop a plan so it will rapid heart rate. there’s much to learn and cope with decreased concentration. emotions.braintumor. as well as cancer patients and survivors. or know that I’m a survivor?” you may wait until you are disease free. but was about enjoying and savoring life. and when or if they will be healthy dynamic process. withdrawal. Patients may experience changes in their 7. is a survivor. heart palpitations. and change of color in the lips or nails (they may become pale. Call the doctor immediately if any of the symptoms mentioned above are present.

Extended Stage Extended stage begins when and if the patient responds to treatment. National Brain Tumor Society | www. Many brain tumor patients welcome the opportunity to express themselves and share their experiences. Social factors with the event. What people hope for Post-traumatic Growth (PTG) is a term for the positive frequently changes throughout their lives and at the end of life changes that can come from trauma. guilt. “I have no question that the mind-body connection is usually rely on community and peer networks for independence and motivation. given a rather dire progno- beginning of treatment. For some patients and caregivers. to should consider seeing a psychologist who can provide seizures. personal strength. participation in a par­ticular family event or gathering. anxiety. Recovery focuses on the physical. glioblastoma survivor describes positive changes com- Support groups serve several functions. there may be an opportunity for healing. or nurse. ethnicity. experience with illness. when the focus is on the physi- of disease. prior history Post-traumatic Stress Disorder and Post-traumatic Growth extremes are common. and others. I do support.braintumor. National Brain Tumor Society | www. adjusting to the new environ- sis. and the hope that treatment will destroy the the loss of various levels of cognitive functioning. family members. experiencing the pain tumor and. less severe side effects allow for a better loved ones about the grieving process and by encourag- quality of survivorship. Treatments focus on the elimi­ nation of disease. Support groups are usually led or facilitated by a health professional. If you think that you might have PTSD. imagery. sadness. avoiding reminders associated experience—it will be higher quality if we engage our as being a spouse. Survivors may require continued care by • Social factors including race. like others in a similar situation. Whatever time remains—and I base this on history.’ It was. Patients and their families issues. and personality traits like and its accompanying treatments as a traumatic event. ing them to verbalize their feelings. Mixed emotional and weaknesses. gender. and light exercise can help ease stress. treatments. In friends can play an important role by educating their general. are widely available to help patients through this process. and There are several key factors that may be related to in emotions like anger. not intend my outcome to be translated as a cure.braintumor. Some The diagnosis of a life-threatening illness or learning of people will get better while others will have periods of religious orientation.org psy­chologist. for example: freedom from pain or other physical symptoms. and adults ment. relationships. MD. Specific areas of PTG Influences on Survivorship and caregivers. Hidden grief can manifest itself include appreciation of life. when a level of trust for health and life returns to the patient. anxiety disorder that may result from a severe trauma. Caregivers and physical limitation. The outside world praises the patient for his or her recovery. anxiety and other mental health Some brain tumor patients may perceive their diagnosis available on a regular basis. and others. wake up. gender.’ Wake up and recognize the preciousness of this moment and all the wonderful moments life so generously and graciously gives you. Hope is a powerful concept and coping strategy that empowers feel positive yet uncertain. And it was not. improved ability in relating to others.” Remaining Hopeful Brain tumor patients have a right to remain hopeful in the fight against their illness and its aftermath. self-esteem. The irony is that I. such experiencing the event. hope does not necessarily translate into being the quality of care. Patients and caregivers may • Side effects such as cognitive disorientation. up call. Kendra Peterson. the fear of loss throughout their journey: from the loss of hair. oneself. you feelings: anger. psychologists believe that once grief is recog- ing from his journey: patients and families opportunities to talk with knowl- cal and spiritual wellness. based on statistics. PTG is consid- life. her life. especially reassurance. Relaxation activities like deep breathing. you are alive. many conversations with patients as well as my own and the patient’s role in his or her family.” ered to be the opposite of PTSD. explains: “It is important to explore what other things a patient Permanent Stage Permanent stage refers to the long-term stage of survival. because of the neuro­log­ical effects and the uncertainty patients to look beyond the moment and into the future. Children older than age three tend to associated with the loss. and progression accepting what has been lost. Processing grief can be a long journey for patients trauma grow from their ordeal. Medical services are no longer of depression. ‘Hey. you’re going to die. meditation. making peace in a troubled relationship. helplessness. such as a social worker. while healing focuses on psychologi- tumors often endure emotional pain and suffering from these losses. Dealing with Emotions and Grief Brain tumors are unique from other traumatic stresses The process of brain tumor survivorship involves many Brain tumor patients experience different types of of recurrence. The awareness of the impermanence of life can make it much more precious. One brain tumor patient expresses the importance he places on a positive outlook: hopes for. cognitive fatigue. and adult survivors experience PTSD. employment one’s child’s diagnosis can be traumatic. attitudes. and innocence. and moving on. Intense emotional suffering caused by loss is called Studies suggest that brain tumor survivors who endure grief. And even when a cure is not possible. (or neurologists) for information. may ultimately create positive changes. type and nized.” affect a person’s ability to get health care as well as least one month. who are dealing with the same issue or illness. wake up. coping mechanisms. those mourning go through the following steps: “It was five years ago when I was diagnosed with a brain Acute stage includes the time from diagnosis through the stage of brain tumor.SURVIVORSHIP 55   54 THE ESSENTIAL GUIDE TO BRAIN TUMORS Acute Stage • Physical factors including age. Survivors with severe emotional stress should consider seeking assistance from a mental health professional. They give However. These factors affect Post-traumatic Stress Disorder (PTSD) is a term for an very real and can affect the outcome of our illness. a neurologist with much vors. This period of re-evaluation. and relationships. Several studies and surveys show that survivors need emotional support. and increased stressful responses for at mind’s ability to affect our attitude. However. re- many. have cal disease. specialists with knowledge about long-term and late effects of their disease and its treatments. previous present. helplessness. financial stability. or child. Support groups can be in person (often held at a hospital) or online. Patients and caregivers struggle to navigate have a higher survival rate than infants. maintaining maximum independence for as long as possible. A long-term brain tumor survivorship: and sadness. Fear of recurrence is often • Psychological factors influenced by age. of PTSD include fear. a person’s outlook on life. parent. and disability. Studies suggest that some pediatric brain tumor survi- cured. Symptoms remission. their parents. and horror. People affected by brain Survivorship can teach a new appreciation of the world. However. but rarely do they stop hoping.org . where members communicate by email. available social support. which can at first be traumatic. Everyone grieves in his or her own way. ‘Hey. psychological strengths and psychological effects of treatment. the you with a clinical diagnosis and professional assistance brain tumor and enable the patient to reclaim his or ability to take part in certain activities. education level. disfigurement. dying with dignity or dying at home. the patient must manage the long-term physical and psychological effects of the disease. come to refer to my disease as a gift because it was a wake- their situations and may rely heavily on their oncologists below the age of 45 do better than older adults. emotional. life goals. experience working with brain tumor patients. the brain tumor experience inspires them to question their beliefs. Support Groups A support group is a meeting of patients. Many patients and their families benefit from attending support groups. through your trauma. self-esteem. Supportive services like Tumors that are slow growing generally have a health care professionals and family support systems better prognosis than aggressive tumors.

and reports as soon as possible. Let the doctor know of their insurance coverage. The exchange of information can be Keep du­pli­cates for second opinions and in the event more difficult than most people realize. Even require several phone calls and letters to resolve. and doctors’ appoint- • How often should I see you or other members of my health care team for follow-up visits? • What follow-up tests should be done and how often? • What symptoms should I be concerned about? • Who should I contact if I develop those symptoms? ments can be a financial burden for patients and their families. It and available coverage. This person • MRI reports. Here are some National Brain Tumor Society | www. others fun and energizing. that your copies should get lost in the mail or elsewhere. People can choose to come or not. It is extremely important for patients to have health insurance that will offer some medical coverage. and doctor After treatment. who may be more easily they like. Support groups can offer emotional support and practical experience to help cope with the crisis of a brain tumor diagnosis. Medical records patients should keep • The type of brain tumor you were diagnosed with and copies of pathology reports • Date of diagnosis and treatment history. it is important for patients and their caregivers to understand the scope Medical History and Records for what you want or need. and write down notes from the meeting. Ask for additional resources on who can educate them and provide information about meetings: specific topics. Ask the doctor to schedule a longer appointment for next time if necessary.braintumor. sites and levels of radiation. family member. and caregivers. A second opinion from a major oncology for copies of records and scans. National Brain Tumor Society (NBTS) always recommends counseling. including health care professionals. or close friend to help them manage their health insurance. and copies of scans if possible can determine how often and for how long follow-up care will be necessary. • Take a tape recorder and ask the doctor if you may tape the conversation. neuro- Health Insurance. The best time Tips for Doctors’ Appointments to request these copies is when the tests are first given. • Request to meet with the doctor in a private room no requirements about regular attendance or participa- with the door closed.braintumor. Because there are so many different types of health insurance plans. It should be of care available. and ask ask the doctor questions. when a person and family have to face the diagnosis of a brain tumor. and Financial Assistance oncologist. and ask • As a last resort. consider finding a new doctor if your needs are not being met. and discuss you don’t understand. Some can be intense and emotional. This is especially important tion. Most of them have • Take someone to medical appointments that can • Repeat what you heard the doctor say. or even a binder Sometimes coverage is denied by health maintenance organizations (HMOs) or employer-sponsored plans. This information can be organized in a notebook.SURVIVORSHIP 57   56 THE ESSENTIAL GUIDE TO BRAIN TUMORS edgeable people. just listening to others in the group. disks. patients need monitoring or follow up and hospital names with contact information with a member of their medical team who knows the original diagnosis and treatment history. including sur­gical reports. It is often important to have a person who physician’s assistant. Support groups are not all the same. by making claims such as medical necessity. They provide a chance to talk with people who are in or have survived similar situations. Your insurance company Patients and their primary caregivers need to have basic when you have heard enough or want more can provide answers to questions about your policy knowledge about tumor type and treatment history. National Brain Tumor Society | www. Ask when you can talk on the telephone about your immediate questions if there is not enough time during the meeting. Important questions to ask your neurosurgeon. Doctors’ appointments can be very stressful for patients Take your medical records with you to appointments. center can confirm the best local treatment plan. It depends on the person and his or her particular feelings at any particular time. perspective. types and amounts of chemotherapy Specific Questions about Follow-up Care and any other drugs. understand what was him or her to explain things in simpler terms if talked about during the appointment. Patients may want to ask a caregiver. which takes time and energy. family member. Patients may need to reserve their energy for taking care of themselves and getting stronger. However. such as a nurse practitioner or to talk with. Having a designated health care advocate can make a big difference in the type and quality of care a patient receives. Managing Follow-up Care medical decisions. Fees may be charged from home. Support groups let individuals know that they are not alone. Quality care may be found at local shared with new doctors. or close friend who can assist with insurance issues. Your state insurance office has empowers patients and their caregivers to make better information about how and where to get new insurance. Brain tumor patients need to receive the best quality dedicated to medical history and records. • Ask if your doctor works with a health care everyone involved may benefit from having someone provider. • Keep a notebook with questions and concerns. their disease. At times like these it is especially worthwhile to have a caregiver. it with you afterwards.org Members of the Sacramento area Brain Tumor Support Group staff an information table at a resource fair. There is usually an opportunity to appeal the decision Patients have the right to see and to get access to their simple claims that were processed incorrectly may hospitals or may require travel to a well-known brain tu­mor treatment center. Support groups are not for everyone—at least not consistently for everyone. and ask the most important questions first. Get copies of films.org . or neurologist about follow-up care: Brain tumor treatments. whether one-on-one or for the family. stay as long as for brain tumor patients. medical records. tips to help you get the most out of these important information. and feel com­fortable about participating or distracted than other people. tests. lab reports. And support groups can smooth the transitions that patients and families must make as they deal with unfamiliar environments. portable file holder. it is important to realize that • Tell your doctor at the beginning of the meeting if you have several questions. such as hospitals and outpatient clinics. depending upon the diagnosis. Support groups are free of charge. The process of viewing medical records Some patients do not want to receive treatments far involves signing a release form. Costs. • Express yourself clearly and directly. whom you can contact if is not emotionally involved who can offer an outside your doctor is unavailable.

The biggest challenge you may experience when returning to work is that some tasks Medicaid may be more difficult.org . • When accepting a new job or going back to an old one. location.org of an employee’s medical history. A hospital social worker or local social services received.braintumor. Later. and employ auditory Act (HIPAA) of 1996. or visit www. or visit www. Walston. You might want to arrange an months to qualify. help you compensate. program for eligible people below a designated income level. the employer cannot discrimi- Making the Decision also make reasonable accommodations for people Social Security Disability Insurance (SSDI) is not Your capabilities.gov.va. financial assistance for those who cannot return to affect eligibility. National Brain Tumor Society | www.gov or call your local Department of This chapter was written with the assistance of Jeannine Social Services. It is jointly funded by federal and state governments. or expected to former responsibilities.gov. Other brain tumor patients. essential duties of a job.  The impairment must be 1) medically documented and. For more information about SSI and SSDI. Your physical and mental condition are also Temporary and permanent benefit programs offer contributions to the Social Security system do not important. For information about Medicaid coverage.gov or www. Brain tumor patients may leave their jobs or reduce their work hours during this period. 2) considered terminal. Medicaid is a state-administered health insurance Strategies to help the patient prepare for returning to work and adjusting after starting: • If necessary. from a worker’s paychecks. The period after diagnosis and during treatment can • Work with your employer to make reasonable involve changes when patients and their caregivers redefine expectations and family roles. however. Both programs define a person with a disability as someone who is unable to perform any “substantial gainful activity” (work) because of a mental or physical impairment. A neuropsychologist can anticipate problems agency can provide more detailed information and you might have at work.cms. and we are very grateful for her help. and the advice from your with disabilities. and provide strategies to possibly assist with the application process. HIPAA is a law that offers pro­ and visual cues such as appointment reminders tections against employers who exclude employees from from your computer or color-coded files. keep about the Health Insurance Portability and Accountability a calendar of appointments. In contrast. Department of Veterans Affairs Veterans Health Administration offers eligible veterans and their dependents medical treatment based on financial need. based on need. or can only handle some of their accommodations in the workplace. Your condition will be affected by the size. If a person with a disa­bility can perform the Social Security Administration The Social Security Administration offers two programs for people with disabilities: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Americans with Disabilities Act The Americans with Disabilities Act of 1990 (ADA) prevents job discrimination for individuals with a qualifying disability. By law. Many patients make the mistake of going back to full-time work too quickly. needs. the employer must physician and neuropsychologist should all be factors keep the person from working for at least 12 months. call 1 800 772 1213. • Consider going back to work part-time to start. and disabled people under the age of 65. be honest about your needs and expectations. Each state has different eligibility requirements. • Prioritize work assignments.cms. Supplemental considered when deciding whether or not to return Federal and State Disability Programs Security Income (SSI) is a need-based program. • Organize your environment so that it helps you Medicare Medicare is a federal health insurance program for eligible individuals aged 65 or older. Call 1 877 222 VETS (1 877 222 8387).medicare. Disabled applicants must have been receiving Social Security Disability Insurance (SSDI) benefits for 24 do your job well. The Medicare hotline has information enclosed workspace and use ear­plugs to avoid about state counseling and assistance programs and distractions.SURVIVORSHIP 59   58 THE ESSENTIAL GUIDE TO BRAIN TUMORS Returning to Work • Understand your limitations and adapt. or visit www.ssa. seek cognitive training and assistance from a neuropsychologist. visit www. people with permanent kidney failure. It might help to create checklists.braintumor. National Brain Tumor Society | www. as well as the treatments work. Past to work.gov. and type of tumor. group coverage or who increase in­surance costs because • Relearn tasks through repetition and modeling. many patients can and do return to work. SSDI is based on money deducted nate in the hiring process. cannot work at all. Call 1 800 MEDICARE (1 800 633 4227).

Help can be sought and a patient can become exhausted and vulnerable. including over-the- When dealing with insurance companies. Resources and Referrals a loved one may act in ways that are completely out of If you need financial help or assistance getting access character and sometimes difficult to manage. Insurance companies sometimes you informed the physician of any problems. Ask the doctor about possible drug follow up may be necessary to make sure claims get interactions. He or she will become familiar with your case and can help things go more smoothly. If this is difficult for you. in friends. books and publications. Support groups can advice from if he or she were the patient. and exercise. way. them. be helpful in getting a second opinion. anger.braintumor. Brain tumor patients often experience changes in mental functioning and/or behavior. believing that an illness need not make a patient any less competent. This chapter offers suggestions and insights in the hope that they may help the participants re-establish a sense of inner control. Therefore. injury survivors may be applicable to brain tumor responsibilities from the care-receiver’s family. PhD. develop a new routine. professional. and medical records. if a complaint the person. for instance. therapists. to other resources. deny claims. As a caregiver. The doc­tor can prove medical Communication necessity. neuropsychologist can offer suggestions for possible Get the names of specialists the doctor would seek treatments or other methods to manage the symptoms. find an advocate basics: eat well. For this reason. what is typical in terms of the patient’s response to treatment and what possible side effects may occur. As a courtesy. National Brain Tumor Society | www. A doctor or medical social worker can offer referrals. Remember that it is important to respect and be considerate of the members of the of themselves emotionally and physically so that they Diagnosis Challenge your insurance company and your doctors are able to provide the strenuous support and care It is essential to know the patient’s tumor type and to if you think your loved one is not getting the care he or demanded by the patient. Suggestions for Caregivers The caregiver plays an important and complex role. Having a support system is critical functioning or behavior. and on the Internet. a patient advocate organization. and beyond. community resources. This she deserves. advocate and manage the patient’s care. These will into survivorship. it is important to determine when to allow the patient to Getting and Managing Information assert his or her independence and when to intervene. getting enough sleep. When behavioral changes occur. some rehabilitation services for head means that caregiving requires more involvement and provide an encouraging setting where caregivers are opinion right away. the caregiver or patient can clearly describe the in a family member. contact a hospital social worker. themselves so that they can nurture the patient. If the patient is seriously depressed. remember the get a written description of the treatment plan. and mood swings. or the loved one may never be the same again. Write down all side effects and note when processed and paid. seek assistance from the medical team. Empathic National Brain Tumor Society | www. They can become invaluable as providers and friends. However. ask questions. Using a tape recorder can be help. during treatment and recovery. It is beneficial to develop a good working relationship with the patient’s health care team. the doctor’s Caregivers have to figure out when something is beyond responses to questions. and their expertise and when to call upon someone else for other vital information. ask for an explanation. and get new ideas. Consider joining a support group. This Everyone is an advocate for patient determination. The much time you can take to make a treatment decision. a Taking Care of the Caregiver caregiver may need to become his or her loved one’s Quite often. there is no right or wrong approach defines the caregiver as a strengthened ally who to caregiving. should arise. Such changes create feelings of loss and are a source of grief for the family. As the patient’s advocate. Here are some role without preparation. Insurance Behavioral changes can be temporary. elderly. Treatments can be phys­ically debilitating. Find a nurse who can help your loved one get the best care possible. If something is not clear. Find out how toms such as depression. The medical center’s billing department can Good com­mu­nication with health professionals is es- also advocate for the patient. Golant reminds caregivers of the importance of educating themselves and of setting limits.braintumor. get enough sleep. Seeking Help visits. When this happens. Changes in our health care system have resulted in a shift of care from the inpatient context to the outpatient clinic. That is. Get a second For example. Caregivers need to take care Hospital social workers are aware of local resources that might benefit you. sential. any procedures performed. there are places to turn to for guidance on dealing with these changes. as we seek meaning and comfort. Keep a copy journey—at diagnosis. loved ones are thrust into the caregiver suggestions for information management. He explains that caregivers should nurture depending on the situation. able to come together and share information. brain tumor disease often impacts both the physical and mental functioning of and regular exercise—Dr. suffering. a caregiver may ask the treatment team what to expect throughout the course of treatment. Take notes at doctors’ Caregivers can select the suggestions that are useful to Mitch Golant. For the patient. Support Medical Records groups are helpful during all phases of the brain tumor Keep a chart for your loved one at home. spiritual advi- Brain tumor patients can experience changes in mental sors.SUGGESTIONS FOR CAREGIVERS 61   8. to prevent burn out. a Los Angeles-based psychologist. a neuropsy­chological evaluation can Treatment help un­der­stand the causes of neuro­psychiatric symp- Inquire about other treatment options. Seek help when you need a break. or if there are questions about the patient’s medical history. or counselors. It is important to always remain flexible provides comfort and strength through self-care and and creative because the needs of a patient can vary knowledge. frustrations. Get the name of a helpful social worker and always talk with that person. However. or through Spiritual questions may arise in times of crisis and diagnosis to other medical professionals. Medications Advocacy Keep a list of all medications used. Remember. survivors as well. ask your doctor first if it’s it may be best to seek treatment from a mental health okay to record the conversation. of all scans.org health care team. There is help available through professionals and peers. Document the reason for the visit.org . Find out which staff member(s) can answer questions when the doctor is busy. or disabled adult. vent their What is a caregiver? A caregiver is a person who is responsible for attending to the needs of a dependent child or a frail. lab tests. a hospital social worker. very efficient. family members. In addition to the basics—eating well. and perhaps help create a new “norm” for the life of the brain tumor survivor. repeated counter drugs.

frustration. these issues well. other family members or friends. there is no timeline or smooth passage from one phase The end of life is not something we like to think about. Behavioral and personality changes in family or friends are not available. it’s a family affair. Levine. listening and attention to these matters by the caregiver can be a great gift to the patient. “A grief diagnosis. regardless of the cause. being a patient is not easy their child. However. The All feelings are normal. important documents are kept so they can be easily anger. caregivers need a break. However. or near the end of life. Impact on the Family your doctor if you notice these types of changes. Guilt is quite subjective. including illness. social worker. but only if your loved one welcomes this. Keep a record of where even if his or her body is not. accept them.” Caregivers and patients ing from a serious illness. anxiety. Young family members of these changes have enriched our lives. Share the Care: How to Organize a Group to including wills and life insurance immediately upon Care for Someone Who Is Seriously Ill. including can cause sadness. manage. living will can give specific instructions and/or authorize 3 I eat three balanced meals a day. It may be anger about the diagnosis itself. Recognize difficult “We all had to find a new normal. Caregivers may have to when there are changes in personality or mental func- deal with being empathic and supportive on the outside tioning. ness. or unable to make decisions or to express themselves. about the illness and treatment. Medicine. physical.SUGGESTIONS FOR CAREGIVERS 63   62 THE ESSENTIAL GUIDE TO BRAIN TUMORS the discussions. Most people associate Illness is not a personal problem. In the speaks to this. on all the responsibility of caregiving alone. and face some realities that were difficult. However. confusion. It is what we do with these ments at this emotionally and physically stressful time. creditors. Especially psychological and the logistical. insomnia. The Human care is needed. it can cause exhaustion. Encourage input from all patients often experience is one of the most difficult and stressful things for caregivers and Lewis. she lived by. A person's spirit may be healed and business transactions. and Sheldon comfort. and find a constructive their wishes will be carried out if they should become fices. to handle certain tasks or levels of responsibility. The book. The symptoms may be treatable. It is essential that the family are neuro­psychiatric symptoms. and a change or loss of appetite.braintumor. a loved one can be subtle or drastic. authors Cappy diagnosis! In a tight family. If an adult loved one has been diagnosed. Children need age-appropriate information The real challenge is understanding that some If a child has been diagnosed. parents may feel guilty. Patients want to be heard and to have choices. However.org . Caregivers need to tend to their own spiritual needs as Depression. It is natural to be angry and upset when one’s life has However. guilt. that used to be. PhD. MD of Memorial ily have to be the only source of spiritual comfort. and despair.” They may think they might have done something to —Mother of a 15-year-old pilocytic astro­cytoma survivor of grieving to another. cause the brain tumor of that they could have protected While caregiving is difficult. and grief. This legal document expresses a person’s wishes for health care treatment at the end of life. patients can ensure that one would like. the loss of the person does Capossela and Sheila Warnock promote the wisdom not need to be a loss or diminishment in their legacy or of psychol­ogist Stephen Levine. or if hospice or nursing home This process can be challenging. can be complex. If the patient’s condition should overwhelmed and confused when they first receive decline drastically. business. make sacri- Caregivers may be afraid of what the future may bring way to deal with them. They may experience a flood of feelings and family will have to decide if the loved one can be followed by an attempt to regain a sense of equilibrium. and behavioral. family's greatest challenge. Dr. ¨ 3 ¨ I keep my annual medical and dental appointments. best cared for at home. and mood swings families. the caregiver the diagnosis. they can seek assistance from recognize that some people are better able than others a chosen person (called an agent) to make health care decisions for the patient. If one person does not respond. fear. Coping with Uncertainty. Everyone—regardless of his or her state of health—should have a living will. life after a brain tumor diagnosis. Dealing with the hospital or family avoid the burden of uncertainty and disagree- treatment team may cause anger and frustration. either. feelings early on. any change result- meets and talks about the situation and all the possible feeling isolated and confused. ¨ 3 I get at least seven restful hours of ¨ It often falls on one family member to be the primary caregiver. Anger may arise for several reasons following news of a diagnosis. If there are communication problems. Side of Cancer: Living with Hope. no one person should have to take sleep a night. grief ence a range of emotions upon diag­nosis. restless- located when needed. A Caregiver Checklist religious advisor. It is important to talk or write after learning about their loved one’s brain tumor about these feelings. resources. Emotionally. the illness sooner. Caregivers should 3 I talk with or visit three friends or ¨ 3 I get out or exercise at least once a week. Some of us may have learned to feel guilty when something goes wrong. Physically. Being mindful of the ebb and flow By filling out a legal document called a living will (or treatment may not be as helpful and understanding as of one’s emotions is part of the process of adjusting to advance health care directive). may need to examine their feelings again and again. Dealing with Sloan-Kettering Hospital in New York. A Vietnamese proverb says. family members. Turning to professional and lay clergy for advice can be a great source of to maintain my health. In words of one caregiver. A living will can be cancelled or replaced at any time.braintumor. Authors Jimmie Holland. “Check your financial situation the book. emphasize finding a balance between the ing in a loss will cause grief. When Emotional Issues adult day care center (if appropriate) may provide a Caregivers and brain tumor patients alike may feel break for the caregiver. Caregivers can talk to a spiritual advisor or mental health professional concerning their own spiritual concerns or the desire to examine their faith or beliefs. and the caregiver does not necessar- Dealing with legal and financial matters is a must. loved ones must deal with the loss of the person while feeling heart-broken and despairing on the inside. caregivers may think that they should have recognized Honoring the patient’s emotional needs takes skill. anger. When relatives weekly. debtors. who the personal. Grief is expressed in ways that are Caregivers and brain tumor patients alike may experi- emotional. outcomes.org National Brain Tumor Society | www. respite care or an 3 I take only the medications prescribed ¨ Changes in Behavior and Personality Figuring out a way to express. planning ahead can help the patient and been turned upside-down. and ethical principles that he or blends existential philosophy with Buddhist tra­dition. editor of the International Journal of Integrative Caring for a loved one with a brain tumor can be a should be included in discussions to prevent them from the neuropsychiatric symptoms that brain tumor Grief is a normal reaction to loss. health care professionals encountered during and after feelings that counts. comfort for the patient. explains that spiritual growth can lead to enormous including investments. ask someone else. This can be a friend. Human grief is a process that often follows a healing pattern. It is frightening to witness a loved one suffer- requires a hundred tellings. Speak with grief with the loss of a life.” Keep records of all financial transactions. it may be helpful to get a neutral person to facilitate National Brain Tumor Society | www. and accept difficult feelings requires constant attention and focus.

overlook the benefits of having fun. and x-rays chart the flow of blood to the brain. get a new perspective. BCNU (carmustine)  A chemotherapy drug used for treating malignant glioma. alternative medicine  Treatment used in place of conventional medicine. Antibodies are part of the immune system and fight infection and disease. and then reinfused following high-dose therapy. The fastest growing tumors have the greatest degree of anaplasia. and laughter is good medicine. The degree. whatever his or her level of functioning. brachytherapy  A form of radiation therapy in which small radioactive pellets or seeds are implanted directly into the tumor. angiogenesis  The formation of new blood vessels to support growing tissue. angiogram  A procedure used to diagnose and monitor blood vessels and brain tumors. An experienced caregiver offered these words of wisdom: “Let your loved ones have a voice in their care. not malignant or cancerous. alopecia  Loss of hair. or understand spoken or written language. Play with the routine. ataxia  Loss of the ability to coordinate muscles in voluntary movement. a character­istic of cancer cells. or treatment used in addition to a primary treatment to increase its effectiveness.64 THE ESSENTIAL GUIDE TO BRAIN TUMORS Caregivers may find it difficult to balance the patient’s sense of independence with his or her need for help. Feeling important and like she is still a person. angiogenesis inhibitor  A substance that limits the growth of new blood vessels. This is one of the biologic therapies currently being studied. Also called interstitial radiation. This symptom may occur with tumors located in the parietal lobe of the dominant cerebral hemisphere. revealing any abnormalities along the blood vessel pathways. “It is really important that we change what we are doing once in a while. antiseizure drug.” accessible  Located in an area that can be approached by surgery. bilateral  Occurring on both sides of the body or brain. Allogenic transplants use marrow donated by another person. stored.braintumor. Caregiving is not an easy job. Syngenic transplants use marrow donated by an identical twin. “Take a road trip. This symptom may occur with tumors located in the brain’s parietal lobes. pituitary adenoma). bone marrow transplantation (BMT)  A procedure in which bone marrow is injected into a patient after intensive chemotherapy treatment. write. biologic response modifier (BRM)  A substance that helps the body’s immune system to resist or stop tumor growth. a humor break. benign  Slow growing.” Humor is important to our psychological and physical health. National Brain Tumor Society | www. drug. Autologous transplants involve cells that have been taken from the patient. is one of the most important things to my daughter. or eat breakfast at midnight. Also called arteriogram. help you deal with the emotional ups and downs. or orientation to one another. Don’t AED See antiepileptic drug. and we are very grateful for her assistance.org National Brain Tumor Society | www. BBB See blood brain barrier. or grade. The patient is injected with a contrast agent. agraphia  Impairment or lack of the ability to write. but a sense of humor can adjuvant  A method. BRM See biologic response modifier. It is a universal coping mechanism for dealing with stress. structure. and epilepsy drug. anosmia  Loss of the sense of smell. This is their body and their experience.org . antigen  A foreign substance that causes the immune system to respond and produce antibodies. anaplasia  The growth of tumor cells without form. Inaccessible tumors are located deep in the brain or beneath critical brain structures. there Glossary are almost always possibilities for patients to have choices. analgesic  A substance that reduces or relieves pain without causing loss of consciousness. antiemetic  Medication to help control nausea and vomiting. antibody  A protein produced by specialized white blood cells (lymphocytes) in response to a foreign substance in the body (antigen). blood brain barrier (BBB)  A natural defense the brain develops that prevents foreign substances from entering the brain through the blood. This symptom may occur with tumors located in the dominant cerebral hemisphere. ataxic gait  Loss of motor control of the legs. aphasia  Loss of the ability to speak. However. and are the most malignant.” one caregiver suggested. acuity  Sharpness or clarity of hearing or sight. not just a patient. This is a common side effect of radiation therapy and some chemotherapy drugs. Also called anticonvulsant.braintumor. antiepileptic drug (AED)  Medication used to control seizures. agnosia  Impairment or lack of the ability to recognize objects or people. anterior  Located toward the front (of the brain). Also called anti-angiogenesis therapy. aphagia  Loss of the ability to swallow. It can be as simple as the color band-aid they wear or what time they go to physical therapy. This chapter was written by Susan Weisberg. LCSW. causing a clumsy walk. of anaplasia reflects the tumor’s potential for growth. anesthesiologist  A doctor specializing in the study and administration of drugs to decrease sensation and pain during surgery. adenoma  A benign tumor that grows from or in a gland (ex. biopsy  A surgical procedure that involves removing a small amount of tissue and examining it under a microscope in order to determine the tumor type. anorexia  Uncontrolled lack of appetite.

braintumor. complementary medicine  Treatment used together with conventional medicine (ex: using aromatherapy to reduce a patient’s discomfort after surgery). Each hemisphere is made up of four lobes:  frontal. dysarthria  Inability to express or articulate words. See stereotactic radiosurgery. An EEG can be useful for monitoring seizures. endocrine dysfunction  Disorders which involve the overproduction or underproduction of hormones by the pituitary gland. glial cells  Supporting tissue of the central and peri­pheral nervous system that exists between nerve cells and blood vessels. This symptom may occur with tumors located in the medulla. CSF is formed in the four ventricles (cavities) of the brain. epithelium  A type of membrane that covers the surface of an internal organ or lines a cavity inside the body. Chemotherapy can also be placed in the tumor cavity during surgery (polymer wafers). disease. or may be receiving standard treatment. Also called water on the brain. unaffected by disease. glioma  A tumor formed from glial tissue. cranium  The skull. gland  An organ that produces hormones. foramen  An opening in a bone or membrane. CSF See cerebrospinal fluid. CAM  Complementary and alternative medicine. contrast agent  A material. carmustine See BCNU. and cranial nerves. the subarachnoid space. Also called nerve bundle. astrocytes and ependymal cells. hypothalamus  A structure near the pituitary gland that has a role in the functions of the nervous system. such as basal ganglia. The control group may be from the general population. Cancer cells that are well differentiated are similar to the original cell and are usually less aggressive. flexible tube that is inserted into the body (or brain) to remove or introduce fluids. etiology  The study of the causes of diseases. carcinogen  A cancer-causing substance or agent. hemiparesis  Muscle weakness or partial paralysis affecting only one side of the body. generic  A drug not protected by a trademark. the operation is called a craniectomy. double vision. contraindication  Something that makes a particular treatment or procedure inadvisable. histology  The science of the microscopic structure of cells. or scan. Glial cells in the central nervous system include oligodendroglial cells. dysphasia  Inability to use language correctly or understand written or spoken words. rounded part of the brain in the top portion of the skull. Histopathology refers to the structure of abnormal or diseased tissue. An encapsulated tumor is confined to a specific area and may be surrounded by a cyst. tissues and organs in relation to their functions. chromosomal loss  A portion of a chromosome that is missing one or more genes.org . CNS See central nervous system. genetic  Related to heredity.braintumor. epidemiologist  A specialist in the population-based trends and patterns of diseases. the scientific name of a drug. carotid artery  One of two major blood vessels that carry blood to the head. differentiation  The process by which immature cells mature into normal cells. National Brain Tumor Society | www. clinical trial  A research study conducted with patients to determine the safety and effectiveness of new treatments. computerized tomography (CT scan)  A method to diagnose and monitor brain tumors using x-ray and computer technology to produce an image. Foley catheter  A tube that is placed in the bladder to drain and measure the amount of excreted urine. After surgery.org control  A group of people against whom a case study is being compared. gene therapy  Treatment that replaces or repairs abnormal genes that cause disease. and foreign substances. fractionated  Divided into several small doses. electroencephalogram (EEG)  A recording of the electrical activity in the brain. This structure is connected to the brain stem. consisting of certain organs and cells that protect against infection. having to do with the transfer of characteristics through the genes. This symptom may occur with tumors located in the medulla or the cerebellum. homogeneous  Made up of one cell type. cerebrospinal fluid (CSF)  The clear liquid that surrounds the brain and spinal cord. This symptom may occur with tumors located in the dominant cerebral hemisphere of the brain. and angiograms. When the piece of the skull removed during surgery is not replaced. DVT  Deep vein thrombosis. cyst  A membrane or sac filled with fluid. gait  Pattern of walking. heterogeneous  Made up of more than one cell type. of the brain. central nervous system (CNS)  The brain. dura mater  The outermost layer of the three membranes in the meninges. debulk  To remove part of the bulk of (a tumor). gene  A part of a cell formed from DNA that controls hemianopia  Loss of vision or blindness affecting one-half of the visual field in one or both eyes. or hemispheres. and parietal lobes. cerebrum  The large. Germ cell tumors can develop in the pineal region of the brain. case  A person or group of people being treated in a study or clinical trial. DNA See deoxyribonucleic acid. CAT scan  Computerized Axial Tomography scan. including the pituitary gland. This symptom may occur with tumors located in the brain stem. Differentiation also applies to the similarity between normal cells and cancer cells. Ganglia can refer to specific groups of nerves in the brain and spinal cord. dysphagia  Difficulty swallowing. CSF circulates through the ventricles. CT scan See computerized tomography. Also called CAT scan. hyperthermia  A treatment using heat produced by microwave sources to kill tumor cells. or dye. and spread to other sites. Differentiated cells perform specific functions and are not likely to divide. Hormones affect the behavior and metabolism (physical and chemical processes) of other cells. regulating body temperature. parietal. and sexual maturation. including growth and maturation. cell  The smallest structure of living tissue that can function independently. Also called neuroglia. hypertension  High blood pressure. These hormones affect growth and the functions of other glands in the body. cancer  Malignant tissue made of abnormal cells that divide uncontrolled. particularly in the frontal. temporal. Cancer tends to invade and destroy normal cells. fatigue  A condition of extreme lack of energy. Hormones also affect many body functions. deoxyribonucleic acid (DNA)  The material in the nucleus of a cell that is the source of a person’s inherited char­acteristics. embolism  The sudden blocking of an artery by a blood clot or foreign material in the bloodstream. temporal. spinal cord. that is injected into the bloodstream of a patient and accumulates in abnormal tissue. diplopia  The visual perception of two objects where there is only one. Also called cerebral spinal fluid and spinal fluid. and the central canal of the spinal cord. Chemotherapy is usually given by mouth (orally) or injected into a vein (intravenously). cerebral hemisphere See cerebrum. National Brain Tumor Society | www. cerebellum  The part of the brain responsible for voluntary muscle movement. Contrast agents can highlight areas of MRI and CT scans. gadolinium  A contrast agent used in MRI scans. ganglia  A mass of nerve tissue (gray matter) or a group of nerve cell bodies. germ cell  A reproductive cell (egg or sperm). or to improve existing ones. The cerebrum contains two halves. A cell contains a nucleus. Each gene exists at a specific location on a chromosome. See computerized tomography. encapsulated  Enclosed in or surrounded by a gelatinous covering or membrane. and occipital. The case group is compared to the control group. which cover the brain and spinal cord. dysplasia  Abnormal development of cells or tissue that can lead to cancer. endocrinologist  A medical professional specializing in disorders of the hormone-secreting glands.GLOSSARY 67   66 THE ESSENTIAL GUIDE TO BRAIN TUMORS calcification  A deposit of calcium. deep vein thrombosis (DVT) See thrombosis. the removed portion of skull is put back in place. immune system  The body’s natural defense system. A term used in radiation therapy. chromosome  Structures in the nucleus of a cell that contain genes. Also called CT scan. hormonal processes. gray matter  The outer surface (cortex) of the brain that is made up of nerve cells and blood vessels. chemotherapy  A treatment using chemical drugs to kill tumor cells. cytoplasm and a membrane. catheter  A hollow. Gamma Knife  A machine that focuses high-intensity radiation on a small target area. craniotomy  Surgery involving the removal of a portion of the skull to get access to the brain. focal  Limited to a single area. Common contrast agents include iodine and gadolinium. hyperfractionated radiation  A delivery method of conventional radiation therapy in which the radiation is divided into many doses of low intensity. or infused in liquid form directly into the tumor using a small pump (convection-enhanced drug delivery). Also called hemianopsia. hydrocephalus  An abnormal buildup of fluid inside the ventricles of the brain. See thrombosis. hereditary characteristics or the information to perform a specific function. choked disk See papilledema. hormone  A substance produced by glands that is released into the bloodstream. edema  Swelling caused by an excessive accumulation of fluid in the cells or tissue.

lesion  Diseased or abnormal tissue. palliative  Treatment intended to reduce pain and increase comfort. neuro-ophthalmologist  A doctor specializing in the treatment of diseases of the eyes affected by the nervous system. causing damage to the DNA in cells.org . or skull. in Latin. positron emission tomography (PET)  A medical imaging tool used to detect abnormal tissue. paresis  Muscular weakness involving partial or incomplete paralysis. pathologist  A doctor who specializes in diagnosing diseases by studying tissue under a microscope. The antibodies attach to the substances and kill the cancer cells or block their growth. and pia mater. Also called radiation therapy.GLOSSARY 69   68 THE ESSENTIAL GUIDE TO BRAIN TUMORS immunosupression  Weakening or prevention of the natural biological defenses which protect the body against disease and illness. Also called feeding tube. Also called brachytherapy. primary brain tumor  A tumor that originates within the brain. neuron  A nerve cell that receives electrical signals (impulses) from other neurons and transmits impulses to muscles or other neurons. protocol  The treatment plan in a clinical study. posterior  Located toward the back of the body (or brain). or cancerous. motor  A muscle or nerve that produces or controls movement.) pituitary gland  A small. inoperable  Located in an area that is not accessible by surgery. QOL is often used in reference to treatment options.braintumor. neuro-oncologist  A doctor specializing in the diagnosis and treatment of cancers affecting the brain. or a division between a space or an organ. rather than to cure a disease. invasive  Any procedure that involves puncturing or cutting the skin. nerves. otolaryngologist  A doctor specializing in the diagnosis and treatment of disorders and diseases of the ear. oval structure located at the base of the brain in the center of the head. and images. PNET  Primitive Neuroectodermal Tumor. in Latin. spinal cord. and ganglia. morbidity  A diseased state. A placebo may be used in an experiment to test the effectiveness of another substance or drug. papilledema  Swelling of the part of the optic nerve called the optic disk. behind the eyes. intracranial pressure (ICP)  Pressure inside the cranium. neoplasm  A tumor. quality of life (QOL)  The level of comfort. National Brain Tumor Society | www. meninges  Any of the three membranes that cover the brain and spinal cord. neurologist  A doctor specializing in the diagnosis and treatment of disorders and diseases affecting the brain. (Nothing through the mouth. or the prospects of recovery. including x-rays or gamma rays. magnetic resonance imaging (MRI)  A scanning technique used to create high-quality images of soft tissue structures inside the human body. ionizing radiation  A type of radioactive energy that can break chemical bonds or strip electrons from atoms. medulla  The center area or inner portion of the brain. or inserting an instrument or foreign material into the body. spinal cord and nervous system. neuropathy  Numbness or tingling in the hands or feet. radiation oncologist  A doctor specializing in the administration of radiation therapy. Lymph circulates through the body via the lymphatic system and removes bacteria and certain proteins from the tissues. membrane  A thin layer of tissue that can function as a protective covering over a surface. to eat. and ability of a patient to pursue daily activities. The PET scan creates computer images of those areas. the ears. Also called secondary brain tumor. neuropsychologist  A licensed psychologist specializing in the study of how the brain functions and the impact of brain damage on a person’s behavior and abilities. Also called spinal tap. or hearing. tumor. Neuroepithelium has qualities of both neural and epithelial cells. molecular marker  A substance in the blood or body that helps to indicate the presence of a tumor or cancer. per os (PO)  Orally. or complications resulting from treatment. This can be caused by increased intracranial pressure. nervous system  The entire grouping or functional unit of nerve tissue in the body made up of the brain. watery fluid that contains white blood cells. Used to vaporize tissue during surgery. brain stem. spine and nervous system. neuroradiologist See radiologist. Increased ICP can be caused by a tumor or by excess fluid (edema). ingest  To take into the stomach for digestion. Necrosis can be a side effect of radiation treatment. radiosurgery See stereotactic radiosurgery. The meninges include the arachnoid. Also called tumor marker. neuroepithelium  The part of an embryo that de­velops into the nervous system. ophthalmologist  A doctor specializing in the diagnosis and treatment of eye disorders and diseases. procarbazine  A chemotherapy drug used to treat malignant gliomas. dura mater. the lining of a cavity. intravenous (IV)  Into a vein. prognosis  A prediction or projection about the probable outcome of a disease. pulmonary fibrosis  A condition in which the air sacs of the lungs are gradually replaced by scar tissue. Examples of ionizing radiation are gamma rays and x-rays. (Through the mouth. radiologist  A doctor specializing in the interpretation of x-ray films. irradiation  The use of radioactive rays.) nuclear medicine  The branch of medicine specializing in the use of radioactive chemical elements for diagnosis and treatment of disease. Also called radiotherapy. where they can block one or more blood vessels.braintumor. aggressive. oncogene  A mutated gene that can transform a normal cell into a tumor cell. multidisciplinary  Made up of individuals from different fields or specialties. metastasis  The spreading of a disease from an original site to another or other locations in the body. The patient is injected with a glucose-based contrast agent. scans. leukopenia  Low white blood cell count.org necrosis  Death of cells or tissue through injury or disease. Also called MIB-1 proliferation index. placebo  An inactive material that has no effect. metastatic brain tumor  A type of brain tumor that comes from diseased cells in another part of the body. non per os (NPO)  Nothing to eat or drink. MIB-1 labeling index  A method of measurement used to estimate how slowly or quickly a tumor is growing. lateral  Refers to location on the side or sides of the body or brain. to destroy tumor cells. which contains chromosomes and DNA and is essential to cell functioning. laser  A medical instrument that produces a powerful beam of light and can produce intense heat at close range. myelosuppression  Weakening or prevention of the bone marrow’s production of blood cells and platelets. Karnofsky scale  A performance measurement for rating a person’s level of physical activity. neurosurgeon  A surgeon specializing in the diagnosis. ionizing radiation to stop cancer cells from dividing. monoclonal antibodies (MAB)  Antibodies made in the laboratory from a single type of immune system cell. malignant  Rapidly growing. Also called choked disk. integrative medicine  Treatment that combines main­stream medical therapies with CAM therapies for which there is scientific proof of safety and effectiveness. enjoyment. pleocytosis  The presence of a greater number of cells than normal in the cerebrospinal fluid. nucleus  The center of a cell. The pituitary gland secretes hormones which help control the body’s other glands and regulate growth and metabolism. radiation necrosis See necrosis. Often refers to a method of delivering medication using a needle to inject the substance into the bloodstream. which collects in diseased areas. including CT and MRI scans. neuroglia See glial cells. pulmonary embolus  A condition in which blood clots in one part of the body break loose and travel to the lungs. paralysis  The loss of motor function (the ability to move) in part or all of the body. invasive. Also called transforming gene. to drain the contents of the stomach or to provide nourishment to a patient who is unable to swallow. Also refers to the ability of cancer to spread into normal tissue. lymph  A clear. interstitial irradiation  A form of radiation therapy in which small radioactive pellets or seeds are implanted directly into the tumor. MRI  See magnetic resonance imaging. These antibodies can identify substances on cancer cells or normal substances that may help cancer cells grow. nose and throat. proliferation  The reproduction or multiplication of cells. The tumor cells spread to the brain by moving through the bloodstream or the lymph system (metastasis). MRI is used to diagnose and monitor the growth of brain tumors. oncologist  A doctor specializing in the treatment of cancer. neuro-otologist  A specialist in the diagnosis and treatment of disorders and diseases affecting the acoustic nerve. nasogastric tube  A tube inserted through the nose into the stomach. radiation therapy  Treatment using high-energy. National Brain Tumor Society | www. It is used to evaluate a patient’s condition. lumbar puncture  A procedure in which a needle is inserted into the lower spine to withdraw cerebro­spinal fluid. treatment and surgical management of disorders and diseases of the brain. spinal cord and nervous system.

defined. and chemotherapy. 50 B cerebrospinal fluid (CSF). 40–42 structure of. 5. 9 clinical trials. A device such as a pump or valve can cause suction. 44. 17–18 diet. 31 Avastin (bevacizumab). 9–12. 6 astrocytoma. Index brain stem glioma. SRS avoids exposing normal tissue to radiation. 8. 21. 28 chemotherapy bevacizumab (Avastin). 35. 6. 20 anemia. remission  The reduction or disappearance of symptoms or of a tumor in response to treatment. tumor  An abnormal mass of tissue that results from uncontrolled cell division. 60–64 management and help. This symptom may occur with tumors located in or near the acoustic nerve. 7.70 THE ESSENTIAL GUIDE TO BRAIN TUMORS radiotherapy See radiation therapy. resection  The removal of a tumor by surgery. 17-18 central nervous system (CNS). 39–40 blood brain barrier. 41. effective procedure to counteract disease. 44 blood brain barrier disruption. stereotactic radiosurgery (SRS)  A type of radiation therapy that uses a large number of precisely aimed beams of ionizing radiation. Standard brain tumor treatments are surgery. 50-51 arachnoid. disrupting the blood flow. 46 acute stage. seizure  A sudden attack or convulsion due to an uncontrolled burst of electrical activity in the brain. 44. 60–61 CAT scan. A shunt may be inserted in the brain to relieve increased intracranial pressure caused by blocked cerebrospinal fluid. 58 anaplasia. 40. 49 cognitive rehabilitation. vertigo  Dizziness. Also called neoplasm or lesion. See also specific types compensation techniques. 39 chordoma. and quality of life. 41–44 side effects. and to help make up for impairments caused by a brain tumor. 17 hereditary and genetic influences. Remission can be temporary or permanent. 56–57 caregivers emotional impact. often in the legs. National Brain Tumor Society | www. Ventricles of the brain contain CSF. standard treatment  A proven. 16 ionizing radiation. 48 brain scans. vertebra  One of 23 bones that make up the spine. secondary brain tumor See metastatic brain tumor. 44–46 National Brain Tumor Society | www. 23. 26 supratentorium  The upper part of the brain. 43 drugs. 21 cerebral hemispheres. 5-7. 44 chiropractic therapy. a substance that conducts nerve impulses. 8. ventricle  A space in an organ through which fluid circulates. ven­tricles of the heart contain blood. tumor marker  A substance in the blood or body that helps to indicate the presence of a tumor or cancer. 18 Americans with Disabilities Act (ADA). 23 A Accutane (isotretinoin). 6–7 benign vs. 6. remediation  Specialized instruction for children to maximize their development. 20. blood clots. tumor. 24. 4. 44 C care and treatment. suction  The process of sucking or drawing out fluid by using negative pressure.org . 51 angiography. 35. 20 tentorium  A fold of the dura mater that separates the cerebral hemispheres from the cerebellum in the back of the brain. whole brain radiation therapy (WBRT)  A type of conventional radiation therapy that aims radiation at the entire brain.braintumor. radiation therapy. This may be indicated by a return of symptoms. tissue  A group of similar cells united to perform a specific function. 35–36 behavioral symptoms. 36 ayurveda. survivorship. 7.braintumor. The beams are aimed from many directions and meet at a specific point to deliver a single. 26 tinnitus  Buzzing or ringing in the ear. 6 systemic  Affecting the body as a whole. 12. This symptom may occur with tumors located in or near the acoustic nerve. See also schwannoma. spinal tap See lumbar puncture. 12 antiepileptic drugs (AED). or an illusion of movement. steroid  A type of drug used to reduce swelling (edema) caused by tumors or treatment. 43 cell division. 21. 48–49 brain mapping. 43 awake craniotomy. 40. 3 CNS lymphoma. stem cell  A primitive cell with the ability to differentiate (mature) into a specialized adult cell. shunt  A hollow tube or catheter surgically placed in the body to drain fluids. 17–18 chemicals and environment. 5–6 cerebellum. Also called molecular marker. 9. 12 thrombosis  A condition in which blood clots form. 36 cognitive symptoms. 15–16 tumor type. 10. 48. 10. 11 causes of tumors. spinal fluid See cerebrospinal spinal fluid. vestibular schwannoma acupuncture. 23. subcutaneous  Under the skin. white matter  Brain tissue made up of nerve cell fibers coated with myelin. 16. 40 biopsy.org brain edema. malignant. 51–52 choroid plexus. 32. 35 treatments. 26. 9 closed biopsy. 34. The clots block one or more veins. 17 electromagnetic fields. 43 acoustic neuroma. 14. 48–49 brain stem. 61 cerebrum. recurrence  The regrowth of a tumor after treatment. possible cellular phones and radio frequency (RF). 41. 54 age of patient average at diagnosis. 16 cediranib (Recentin). WBRT is used to treat multiple tumors and metastatic brain tumors. 13 cellular phones. ultrasound  A type of imaging technique which uses highfrequency sound waves to create a two-dimensional picture of soft tissue in the body. 22. 34. 39. 60. 40–41 biologic therapies. White matter transmits information between the nerve cells in the brain and spinal cord. 9 complementary and alternative medicine (CAM). functions of. 15 air pollution. vascular  Referring to blood vessels. learning abilities. brain classifying brain tumors. high dose of radiation directly to the tumor. 14 survival rates. 17–18 head injuries and seizures.

See also complementary and alternative medicine (CAM) brain stem glioma. 63 gliomas. 31 H cysts. 14 biopsy. 20. 31. 41 insurance. 28 meningioma. impact on. 61. 25 grief. 52 functions. 25 K computed tomography (CT or CAT scan). 16 hormonal changes. 54. 10 magnetic resonance spectroscopy (MRI Spect or MRS). cost and financial assistance. 46 medulla oblongata. 4. See also specific types second opinions. 45 M health insurance. 18 immunosuppression. 8. 15. 36 open MRI. 37 ependymoma. 45 craniotomy. 28 incidence rates. polymer wafer. 10. 22 intraoperative ultrasound imaging. 31. 7 misdiagnosis. 9–12. 54–55. 20. 38 lobes. 3. 31. 28. 13. 63 dexamethasone (Decadron). 5 extended stage. 16. 10 perfusion MRI. 63 geographic and ethnic incidence rates. 34 executive functioning. 27 financial assistance. 39. 21–25 contrast agent (contrast dye). 26 antiepileptic (AED). 27 exercise. cost and insurance. 17–18 mixed glioma. 48 cranium. 22 invasive vs.braintumor. 32. 35 headaches. 50 imaging techniques and scans. 49 diagnosis linac radiosurgery. 62 health maintenance organizations (HMOs). 16. non-invasive procedures. 8 gender incidence rates. 35 oligodendroglioma. 12–13 gene therapy. 24 isotretinoin (Accutane). 49 metastatic brain tumors. 14. 40. 48. 39 meninges. 40. 11. 16 focused radiation therapy. 10 functional MRI (fMRI). 7 erlotinib (Tarceva). 40 tumor board. survivorship. 36 steroids. 7 male vs. 37 age of patient. 43–44 diet. 5–6. 37 homeopathy. 54–55. 4. 24. 17–18 grand mal seizures. 12. 61. 15 craniopharyngioma. 52. 36 E glioblastoma. 44–45 geographic incident rates. female incidence rates. 40 myelosuppression. 49. 58 female vs. 6. 54–55. 8–9. 43 scans and imaging techniques. 56. 58 Medicare.org . 57–59 herbal medicine. 10–11. insurance and financial assistance. See also brain hydrocephalus. 44. 54 CT scan. 57–58 ethnic incident rates. 11 deep vein thrombosis (DVT). 27. 9 head injuries. 14. 4. 54.INDEX 73   72 THE ESSENTIAL GUIDE TO BRAIN TUMORS complex partial seizures. 44. 31 D L diffusion and diffusion-tensor MRI. 45–46 focal seizures. 56 genetic and molecular research. 12. 14–16. 7. 3. 50 convection-enhanced delivery. 17. 28 external beam radiation therapy. 6 guided imagery. 57–58 magnetic resonance angiography (MRA). 50 glial cells. 21–22 photodynamic therapy (PDT). 36 midbrain. male incidence rates. 52 malignant vs. 17 lumbar puncture (spinal tap). 8 epidural space. 61. 56. 39. 18 embolization. 37 range of feelings. 32. 20. 11 grief. 36 interactive MRI. 16. 23. 25 Karnofsky Performance Scale (KPS). 45 corpus callosum. 58–59 meditation.braintumor. 9 hope. 9–12 generalized seizures. 11. 39. 29. brain. 50 hereditary and genetic influences.org leukopenia. 15 G incidence rates. 50 dura mater. 61. 16 conformal radiation. 14–15 hemangioblastoma. 8. 57–58 astrocytoma. 18 mucositis. 9. 10 electromagnetic fields. 8. 13 microsurgery. 36 edema. 40. 14 I pathology report. 38 neurological examination. 19 immunotoxin therapy. 14–15 hypothalamus. 63 subependymoma. 30. 49 juvenile pilocytic astrocytoma. 14. 32. 15 implant. 21. 63–64 WHO classification. 24 infections. 5 lesions. 7 medulloblastoma. 17. 37 MIB-1 labeling index. 45–46 frontal lobes. 17. 51–52 debulking (partial resection). 44 ependymoma. 34 benign vs. 64 convulsions. 14 Gamma Knife radiosurgery. 45–46 Medicaid. 10 magnetic resonance imaging (MRI) F Health Insurance Portability and Accountability Act (HIPAA). 32. 34 depression. 20. 52 end of life. 11 standard MRI. 14. 63. 49 lymphatic system. 24 ionizing radiation. malignant. viruses and allergens. 59 family. 43 National Brain Tumor Society | www. 16. 12 environmental influences. 16. 23 integrative medicine. 41 drugs germ cell tumors. 24 molecular and genetic research. 45 healing touch. 11 flow sensitive MRI (FS MRI). 16–17 biological therapy. 20 constipation. 6 massage therapy. 26. 50 emotional reactions optic nerve glioma. 23. 41 glial tumors chemotherapy. 32. 35 emotional impact. 15. 44. 40 loss of balance. benign. 41 National Brain Tumor Society | www. 32 genetic influences. 48. 55 functional status. 43 cost. 11 hypophysis (pituitary gland). 44. 13 mixed glioma. 23 intraoperative MRI. 23 Intensity Modulated Radiation Therapy (IMRT). 40. 6. 44.

47 O occipital lobes. 40. 34. 5. 63 vision changes. 8. 9. 27. 6. 34 pathology report. 8 Nexavar (sorafenib). 12 optic nerve glioma. 5. 48. 14. See also acoustic neuroma personality changes. 53. 61 National Brain Tumor Society | www. 40. 31 non-glial tumors. 32. 49–50 nutritional supplements. 57. 52 pineal tumor. 55 spinal cord. 31 recurrent tumor (recurrence). 18 blood clots. 6. 43 peripheral nervous system (PNS). 44 pons. 31 T National Coalition of Cancer Survivorship (NCCS). 8 glial. 28 R subdural space. 8 second opinion. 35 permanent stage. 60 steroids. 40. 7 primary brain tumors. 32. 59 neuropsychological testing. 32. 21–25 rhabdoid tumor. 9. 7 pituitary gland. 14–18 record keeping. 3. 31 vomiting. 37–38 stereotactic radiotherapy (SRT). 28 head injuries. 9 headache. 34. 51–52 S sampling error. 30 radio frequency (RF). 16. 5 non-glial tumors post-traumatic stress disorder (PTSD). 49. 3 RF exposure. 30. 35 speech disorders. 39–40 clinical trials. 36 open biopsy. 40. 48–49 complementary and alternative medicine (CAM). 26 CNS lymphoma. 34. 50 thalidomide (Thalomid). See biopsy thrombosis. 48. 29. 22 characteristics. 37–39 support groups. 27 meningioma. 27 hemangioblastoma. 21–25 metastatic brain tumors. 21 neurological examination. 5–6. 61. 44–46 follow-up care. 43 post-traumatic growth (PTG). 56. 49. 44. 8. 8. 39 types. 55. 9 oligoastrocytoma. 52 seizures. 35 temporal lobes. 55 proliferation. See also specific types ventricles. 28. 54 schwannoma. 30 cognitive and behavioral. 18 suture lines. 38 stereotactic surgery. 30. 17–18 surgery surgery. 25 recurrent tumors. 49 survival and prognosis. 6. 59 seizures. 29 radiation therapy (RT) subependymoma. 3. 37–38 resection. 53. 49–51 targeted therapies. 36–37 secondary brain tumors. 6 radiation therapy. 43 risk factors. 55 spinal column. 39 subarachnoid space. 31 P risk factors. 61 post-operative care. 5 conditions related to. 30 physical. 24. 32. 34–35 tuberous sclerosis.INDEX 75   74 THE ESSENTIAL GUIDE TO BRAIN TUMORS N photodynamic therapy (PDT). 4. 17 needle biopsy. 17. 12 sorafenib (Nexavar). 34– 37 symptoms defined. 42–43 nausea. 24. 35 neurofibromatosis. 12. 28 pineal tumor. 42 cognitive rehabilitation. 26–30 risk. 50–51 thalamus. 14. 32–33.org . 43 pituitary tumor. 5 scans and imaging techniques. 26 chordoma. 16. 51 non-glial. 25 partial resection (debulking). 44. 24 oligodendroglioma. 26–30 acoustic neuroma. 23. 58. 21–30 spinal tap (lumbar puncture). 39. 7. 61 positron emission tomography (PET). 48. 38 pseudotumor cerebri. 50 pineoblastoma. 38–39 supplemental security income (SSI). 52. 9–12. 6. 53–54 tumor research and technology. 29 side effects.braintumor. 63 skull. 15 tumor board. 51–52 transphenoidal surgery. 20. 17. 8. See also treatment team remission. 16–18 fatigue. 8. 34. 51 brain tumor. 43 pilocytic astrocytoma. 17–18. 56. 41. 24 treatment team. 30 primitive neuroectodermal tumors (PNET). 12. 8 planning ahead. 29. 36 treatment biologic therapies. 41. 6 seizures Tarceva (erlotinib). 24 Ommaya reservoir. 46. 39. 31 resection. 45. 43 neuropsychologist. 36 steroids. 29 stereotactic biopsy. survivorship. 3. 11. 30. 40. 30 types. 14. 37– 39 pituitary tumor. 6. 29 treatments. 6. 26. 13 stereotactic radiosurgery (SRS). 56–57 glial tumors. 27 medulloblastoma. 5.braintumor. 36 shunt. 49–51 rhabdoid tumor. 52 National Brain Tumor Society | www. 26 craniopharyngioma. 6 V vaccine therapy. 41–44 chemotherapy. 48 metastatic. 32. 34–36 radiosurgery. 33. 31 pulmonary embolus (PE).org vestibular schwannoma. 31 neuroglia. 47. 35 primitive neuroectodermal tumors (PNET). 49 recurrent. 62 Recentin (cediranib). 34 schwannoma. 13 pediatric brain tumors. 55 survivorship. 35 trends in incidence rates. 7 social security disability insurance (SSDI). 63 types. 13 proton beam radiosurgery. 57 pia mater. 35 parietal lobes. of surgery. 13. 32 neuropathy. 32.

30.braintumor. 21. 29. 28 National Brain Tumor Society | www. 47 white matter. 45. 18. 8. 37 World Health Organization (WHO).org . 6 whole brain radiation therapy (WBRT).76 THE ESSENTIAL GUIDE TO BRAIN TUMORS W weakness. 44. 20. 32.

braintumor.caregiving CAUSES clinical trials treatment options support understanding the brain seeking help DIAGNOSING survivorship symptoms TREATMENT TEAM complementary medicine brain tumor types www.org .