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Life After Cancer Harvard Health
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LIFE AFTER CANCER
SPECI A L HE A LT H REPORT
Medical Editor
Contents
Ann Partridge, MD, MPH What does it mean to be a cancer survivor? . . . . . . . . . . . . 2
Director, Adult Survivorship Program,
Dana-Farber Cancer Institute Long-term and late effects of treatment. . . . . . . . . . . . . . . . 5
Professor of Medicine, Harvard Medical School Cardiovascular disease . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
Executive Editor Lung disease . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7
Anne Underwood Infertility, early menopause, and sexual issues . . . . . . . . . . . . . . 7
Writer Fatigue . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
Stephanie Watson Sleep problems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
Copy Editor Brain fog . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
Robin Netherton Diabetes and other endocrine issues . . . . . . . . . . . . . . . . . . . . 12
Creative Director Nerve damage (neuropathy) . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
Judi Crouse Hearing loss . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
Production/Design Manager Bladder and urinary issues . . . . . . . . . . . . . . . . . . . . . . . . . . . 14
Susan Dellenbaugh Pain . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14
Scars and body image issues. . . . . . . . . . . . . . . . . . . . . . . . . . 15
Published by Harvard Medical School
Gregory D. Curfman, MD, Editor in Chief Creating a survivorship care plan. . . . . . . . . . . . . . . . . . . . 16
Urmila R. Parlikar, Senior Content Editor
Keeping track of your medical records. . . . . . . . . . . . . . . . . . . . 16
IN ASSOCIATION WITH Your survivorship care plan. . . . . . . . . . . . . . . . . . . . . . . . . . . . 17
Belvoir Media Group, LLC, 535 Connecticut Avenue,
Norwalk, CT 06854-1713. Robert Englander, Chairman Cancer’s aftermath—emotions, work, finances. . . . . . . . . . 19
and CEO; Timothy H. Cole, Executive Vice President, Anxiety and depression. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19
Editorial Director; Philip L. Penny, Chief Operating
Officer; Greg King, Executive Vice President, Marketing Director; How to deal with your emotions. . . . . . . . . . . . . . . . . . . . . . . . . 20
Ron Goldberg, Chief Financial Officer; Tom Canfield, Vice Financial and work issues. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21
President, Circulation. Health insurance concerns. . . . . . . . . . . . . . . . . . . . . . . . . . . . 22
Copyright © 2017 by Harvard University. Permission is Effects on your family and relationships. . . . . . . . . . . . . . . . . . . 24
required to reproduce, in any manner, in whole, or in part, Will the cancer come back? Living with uncertainty. . . . . . . . . . . 25
the material contained herein. Submit reprint requests to:
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Fax: 617-432-1506 Spirituality and religion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27
Website Support groups . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27
For the latest information and most up-to-date publication
list, visit us online at www.health.harvard.edu. SPECIAL SECTION:
Customer Service Guidelines for a healthy lifestyle after cancer. . . . . . . . . . . 28
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Ordering Special Health Reports What happens if your cancer returns . . . . . . . . . . . . . . . . . 41
Harvard Medical School publishes Special Health Reports
on a wide range of topics. To order copies of this or other
Factors that increase your risk for a secondary cancer . . . . . . . . 41
reports, please see the instructions at the back of this Warning signs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42
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For Licensing, Bulk Rates, or Corporate Sales: Follow-up recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . 44
email HHP_licensing@hms.harvard.edu, Treatment for a recurrence . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45
or visit www.content.health.harvard.edu.
ISBN 978-1-61401-152-1
Resources. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 46
The goal of materials provided by Harvard Health Publications Glossary. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49
is to interpret medical information for the general reader.
This report is not intended as a substitute for personal medical
advice, which should be obtained directly from a physician. Cover Image: © Ridofranz | Thinkstock
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Dear Reader,
If you are reading this report, chances are you are among the 15.5 million people in the United
States who currently consider themselves cancer survivors. Or you are the spouse, child, parent,
or concerned friend of someone who is a cancer survivor.
“Survivor” is a powerful word. As defined by some medical groups, it refers to anyone who has
ever been diagnosed with cancer, from the earliest stages of treatment through the final days of
hospice care—and applies to their loved ones and caregivers as well. Others define it more nar-
rowly, as we do in this report. It means that you have survived the first active phase of treatment
and have been able to resume your life. Perhaps treatment has slowed or stopped your cancer
growth, and you need only monitoring for the time being. Or perhaps you’ve reached a plateau
that you can maintain with long-term treatment. Or maybe you have conquered your disease and
received a clean bill of health from your doctor. All of these meet the definition.
No matter where you are in your cancer journey, you have undoubtedly faced some of the most
difficult challenges you’ve ever experienced. You’ve had to come to terms with the frightening
reality of your own mortality. You’ve undergone treatments that took a great toll on your emo-
tional and physical well-being. And you likely had to step away—at least temporarily—from
your day-to-day life to deal with this imminent threat.
Now that you are a survivor, your challenges have shifted, but they have not disappeared. As
you enter this next phase of your journey, you will encounter more obstacles ahead. The same
treatments that likely saved your life might have left residual effects that could threaten your
health again one day. Your cancer may have left physical—and emotional—scars that have yet
to heal. And your experience as a cancer patient may have put strain on your relationships that
will require time and effort to fix.
This Special Health Report was designed to guide you through the next stage of your cancer
journey. It will walk you through many of the issues you’ll face in the upcoming months and
years—the long-term and late effects of your cancer and treatment; the potential for a recurrence
or new cancer; the emotional, occupational, and financial issues you’ll potentially face; and the im-
plications for your family and friends. You’ll learn how to readjust to the life you may have put on
hold during your treatment, transitioning back to your full work and home life. And you’ll learn
ways to maintain your health to prevent new problems, including cancer, from taking hold again.
Sincerely,
Harvard Health Publications | Harvard Medical School | 4 Blackfan Circle, 4th Floor | Boston, MA 02115
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What does it mean to be a cancer survivor?
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changed the description of the cancer patient from your treatment to ensure that you have the best pos-
“victim” to “survivor.” In the category of survivor, it sible outcome.
also included the people who surround and support Once your primary treatment ends, the map—
the person with cancer. The NCCS’s definition has now and your guides—can suddenly vanish. You may be
been incorporated into the National Cancer Institute’s left without a clear medical coordinator to help you
website: “An individual is considered a cancer survi- navigate the vital follow-up care you’ll need in the
vor from the time of diagnosis, through the balance of months and years ahead. “Lost in transition” is how
his or her life. Family members, friends, and caregiv- the Institute of Medicine of the National Academies
ers are also impacted by the survivorship experience of Science, Engineering, and Medicine describes the
and are therefore included in this definition.” way people often feel as they encounter the convoluted
Many other institutions use the term “survivor” passage from cancer patient to survivor.
more narrowly. At Harvard-affiliated Dana-Farber Historically, this transition has been so often
Cancer Institute, it is used to describe people who undirected because doctors themselves had few guide-
have completed the first phase of treatment, which has posts to help them chart their patients’ paths forward.
slowed or stopped the growth of their cancer or effec- While medical students learned the latest cancer treat-
tively removed all traces of the disease. This report ment breakthroughs, they didn’t get any training on
also uses the more narrow definition of survivor. how to steer patients through follow-up care. Cancer
Either way, the new concept of survivorship has organizations similarly didn’t offer any guidelines on
served an important function. As the idea took root, the transition process. As a result, many people were
cancer organizations began to devote more time and thrust back into the hands of a primary care physician
resources to addressing survivors’ needs and helping who was only tangentially aware of their treatment
them address the issues that loom after treatment, as and its potential consequences. Many were forced to
they transition beyond the realm
of full-time cancer patient. In
1996, the National Cancer Insti- Figure 1: Cancer survivors—yesterday and today
tute launched its Office of Cancer 30
2040
Survivorship. Many cancer cen- Projections 26.1 million
ters around the country, includ- 25
ing Dana-Farber, have started
their own survivorship programs. 20
2016
15.5 million
Millions
patient to survivor 10
Cancer treatment is an all-con- 1975
3.6 million
suming journey that follows a
5
very specific and detailed road
map. Your doctor charts your
treatment protocol, and then 0
1975 1980 1985 1990 1995 2000 2005 2010 2015 2020 2025 2030 2035 2040
a team of oncologists, nurses,
surgeons, radiation therapists, Advances in screening and treatment have dramatically improved the outlook for cancer
psychologists, social workers, patients and the likelihood of surviving cancer. In the 1970s, fewer than four million people
in the United States were considered survivors. Today that number exceeds 15 million. By
and other specialists guide you
the year 2040, it is projected to reach more than 26 million.
every step of the way. They plan, Adapted from Bluethmann SM, et al. “Anticipating the ‘Silver Tsunami,’” Cancer Epidemiology, Biomarkers &
administer, and then monitor Prevention (July 2016), Vol. 25, No. 7, pp. 1029–36.
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Long-term and late effects of treatment
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lasting damage to your heart (see Table 1, page 5). ent, your doctor might suggest that you undergo one
And if you already had heart disease before your can- or more of these tests:
cer diagnosis, cancer treatments could make certain • an echocardiogram, which uses sound waves to cre-
drugs you use to treat it, like clopidogrel (Plavix) or ate pictures of your heart
warfarin (Coumadin), less effective. • an electrocardiogram (ECG), which checks the
Types of heart disease that have been linked to electrical activity of your heart
cancer treatment include the following: • a multigated acquisition (MUGA) scan of the
Coronary artery disease is a narrowing and heart’s lower chambers to make sure they’re pump-
hardening of the arteries that supply blood to your ing properly
heart. Narrowed arteries don’t allow as much blood • blood tests to measure levels of substances like
through, which means your heart can’t get the oxygen brain natriuretic peptide (BNP) or troponin, which
it needs to keep pumping soundly. Untreated coronary can show how well your heart is working.
artery disease can lead to a heart attack, which causes
permanent damage to the heart muscle.
Irregular heartbeat (arrhythmia) is an uncoordi- Lung disease
nated heart rhythm. Normally, the heart pumps in a Chemotherapy and radiation to the chest can also
familiar lub-dub pattern. Electrical signals cause the damage the lungs (a problem called pulmonary toxic-
upper chambers (atria) to contract, followed by the ity), particularly if you received both treatments or if
bottom chambers (ventricles). An irregular heartbeat you already had lung disease before your cancer diag-
occurs when these signals happen too quickly, too nosis. Cancer treatment can cause the lungs to swell
slowly, or at an abnormal pace. An arrhythmia can and thicken, making it harder for them to take in oxy-
prevent your heart from pumping enough blood out gen—and harder for you to breathe. The cancer drugs
to your body. most likely to cause lung damage are
Heart failure means your heart is too weak to • arsenic trioxide (Trisenox)
pump out enough blood to meet your body’s needs, • bleomycin (Blenoxane)
making you feel dizzy and short of breath. Some che- • carmustine (BiCNU)
motherapy drugs can cause heart failure soon after • idarubicin (Idamycin)
you start on them. • methotrexate (Trexall).
High blood pressure is an increase in the force If you have symptoms like shortness of breath,
of your blood pushing against your artery walls as it cough, fatigue, or discomfort when you exercise or
pumps through your body. Cancer drugs called angio- lie on your back, tell your doctor. A chest x-ray, lung
genesis inhibitors, which prevent the formation of function tests, and tests to measure the oxygen levels
blood vessels that feed a tumor, can cause dramatic in your blood can reveal a lung problem. Lung toxicity
increases in blood pressure. is treated with steroids to bring down swelling; oxygen
You’re more likely to have heart problems after therapy; and pulmonary rehabilitation, a program that
cancer treatment if incorporates breathing techniques, exercise, diet, edu-
• you’re age 65 or older cation, and support.
• you received high doses of chemotherapy
• you received radiation to the chest
• you took one of these cancer drugs: cyclophospha- Infertility, early menopause, and
mide (Neosar), daunorubicin (Cerubidine), doxo- sexual issues
rubicin (Adriamycin, Doxil), epirubicin (Ellence), If you’re treated for cancer before or during your
pertuzumab (Perjeta), or trastuzumab (Herceptin). reproductive years, one important consideration is
If you have symptoms of a heart problem, or to what effect those treatments will have on your ability
check for problems before symptoms become appar- to have children in the future.
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are coming between you and your partner—including see “A survivor’s story: William J. Trainer,” below.)
erectile dysfunction, menopause, fatigue, pain, and Cancer fatigue can reflect several factors, includ-
body changes. Women who experience pain during ing the treatments you received as well as stress, sleep
sex might try vaginal estrogens, nonhormonal lubri- problems, medications, pain, poor nutrition, and other
cants and moisturizers, or dilation therapies to widen factors related to your disease. The fatigue that accom-
the vaginal opening. Men with erectile dysfunction panies cancer isn’t your average, everyday tiredness. It
can try medications like tadalafil (Cialis) or sildenafil drains you of energy, makes your arms and legs feel
(Viagra) or a pump device to help them achieve erec- like lead, and doesn’t relent, no matter how many hours
tions. You might also try couples therapy with a thera- you sleep. Cancer fatigue can disrupt your daily life,
pist who specializes in treating sex and relationship making it impossible for you to work or spend time
issues in people who’ve had cancer. with friends and family. What’s worse, the fatigue can
Also remember that you can stay close to your continue many years after your treatment has ended.
partner though other forms of intimacy, like cud- Try these strategies to manage fatigue:
dling and kissing. Be open and honest with each • Take short naps or rest breaks during the day.
other about your desire to be intimate. • Prioritize the things you need to do, and take care
of the most important ones first.
• Conserve energy by breaking big tasks (such as
Fatigue cleaning your house) into smaller ones (dust one day,
Fatigue is one of the most common and debilitating sweep the floors the next). Ask friends and family for
aftereffects of cancer and its treatment. (For example, help getting through your daily responsibilities.
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You might have heard the term “chemo brain” fatigue, insomnia, anxiety, depression, and stress can
to describe the fog that descends after cancer also contribute to mental fogginess.
treatment. Chemotherapy can contribute to these Your doctor can do a number of tests to evaluate
symptoms, but so can radiation, hormone therapy, your cognitive function and look for any declines in
surgery to the brain, anesthesia (in older people), your memory or thinking abilities. One way to treat
and some of the medications you took to relieve can- these issues is with a program called cognitive reha-
cer side effects. Cancer treatments disrupt the activi- bilitation. This consists of a series of mental exercises,
ties of nerve cells in your brain that are responsible which you might do on a computer to improve your
for tasks like memory, attention, processing, and memory, attention, and concentration skills.
executive functions such as planning and organiz- Another technique used to treat chemo brain is
ing. Vitamin and nutrient deficiencies and the stress called electroencephalography biofeedback, or neu-
of living with cancer can also take their toll on your rofeedback. A device called an electroencephalogram
ability to think clearly. And cancer side effects like lets you see a readout of your brain activity. Over time,
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Metabolic syndrome Nerve damage (neuropathy)
Metabolic syndrome isn’t one disease, but a cluster of Chemotherapy drugs, in their haste to destroy quickly
disorders—high blood pressure, abdominal obesity, dividing cells, can damage the nerves that carry sen-
high triglycerides, high cholesterol, and high blood sory messages from your brain and spinal cord to your
sugar—that together put you at increased risk for heart body. Radiation and surgery can also leave behind
disease and diabetes. Having metabolic syndrome also nerve damage. Symptoms include numbness or tin-
increases your risk for cancer, but the inverse is true as gling in your hands, feet, or both. You may also expe-
well. After cancer treatment, you’re more likely to get rience burning or shooting pains, muscle weakness,
metabolic syndrome. This rise in risk stems from sev- and loss of balance.
eral factors, including weight gain, hormonal changes, Whether you develop neuropathy during or after
increased inflammation, and changes in lipid (fat) chemotherapy depends on the drug you took and the
metabolism that can be caused by cancer and its treat- dose you received. Chemotherapy drugs that are most
ments. To reduce your odds of developing metabolic likely to cause neuropathy include
syndrome, keep your weight in check, get more active, • epothilones—ixabepilone (Ixempra)
eat a well-balanced diet, and manage blood sugar, • immunomodulatory drugs—lenalidomide (Rev-
blood pressure, and cholesterol levels with lifestyle limid), pomalidomide (Pomalyst), thalidomide
changes and medication. (Thalomid)
• microtubule dynamics inhibitors—eribulin
Osteoporosis (Halaven)
Your bones naturally weaken with age, as the pro- • plant alkaloids—etoposide (Toposar, VePesid; also
cess of bone breakdown begins to outpace the pro- known as VP-16), vinblastine (Velban), vincristine
cess of rebuilding. The bones become more porous (Vincasar), vinorelbine (Navelbine)
and weaker. Some cancers (such as breast, prostate, • platinum drugs—carboplatin (Paraplatin), cisplatin
and lung cancers and multiple myeloma), as well as (Platinol), oxaliplatin (Eloxatin)
treatments like chemotherapy, hormone therapy, • proteasome inhibitors—bortezomib (Velcade),
and steroids, can accelerate this process of bone loss. carfilzomib (Kyprolis)
Weakened bones make you more susceptible to frac- • taxanes—cabazitaxel (Jevtana), docetaxel (Tax-
tures if you fall. otere), paclitaxel (Taxol).
Often, bone loss comes without any symptoms. If If you notice symptoms of nerve damage, report
you’ve had a treatment that might affect your bones, them to your doctor right away. Your doctor will do
your doctor will recommend a dual energy x-ray tests like electromyography and nerve conduction stud-
absorptiometry (DEXA) scan to measure your bone ies to check your nerve function. Medicines like anti-
density. Osteoporosis treatment involves drugs like depressants, antiseizure drugs, and steroids can relieve
bisphosphonates—such as alendronate (Fosamax), the pain of nerve damage. Physical and occupational
ibandronate (Boniva), and risedronate (Actonel)— therapy, along with an exercise program, can help you
which prevent further bone loss. Other ways to shore up regain movement, balance, and fine motor skills.
your bones are to get enough calcium (1,000 mg daily, or
1,200 mg for women 51 and older, from a combination
of food and supplements) and vitamin D (800 IU daily). Hearing loss
Weight-bearing exercises also help. A well-rounded Chemotherapy, radiation, and surgery can all damage
strength training program that works all your muscles the structures inside your ear that help you hear clearly.
is best, but other forms of exercise where you’re simply In some people, this damage manifests as trouble hear-
supporting your own body weight (such as running or ing conversations in situations, such as at a party, where
walking) also help reinforce bone—though only those there is a lot of background noise. In other people, it
bones that are attached to the muscles you’re exercising. takes the form of ringing in the ear (tinnitus).
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tos showed Marianne DuQuette
Figure 2: Pain rating scale Cuozzo, with her arms uplifted
in victory—and dark purple
scars running across her chest
where her breasts used to be.
0 2 44 66 8 10
10 “This is what we now look like
NO HURT
NO HURT HURTS A
HURTS HURTS A
HURTS HURTS
HURTS HURTSA
HURTS HURTS
HURTS
LITTLE BIT LITTLE MORE EVEN MORE WHOLE LOT WORST
from cancer,” she said. “I loved
LITTLE BIT LITTLE MORE EVEN MORE WHOLE LOT WORST
my breasts. Now I’m finding new
Use this visual guide to help explain your level of pain to your doctor. Rate the pain on a scale parts of my body to love. I want
of 0 to 10, where 0 is no pain and 10 is the most unbearable pain you’ve ever felt. to feel beautiful and sexy again,
but it will take time.”
where the pain is in your body, what it feels like In fact, Cuozzo had tried breast reconstruction,
(sharp, stabbing, throbbing, dull), what seems to trig- but after four infections in five months, she decided to
ger it, and how it affects your daily life. “go flat.” The other women in the article cited a vari-
Treatments for pain can take many forms, ety of issues with implants, ranging from their weight
including to the unnatural feel of their reconstructed breasts.
• non-narcotic pain relievers, such as ibuprofen “The nerves are cut, so they’re not receptive to feel
(Advil, Motrin), acetaminophen (Tylenol), and or touch,” said Rebecca Pine, another of the women.
naproxen (Aleve) Research suggests that women who opt against breast
• opioids, such as morphine, codeine, and oxycodone reconstruction are no worse off than women who
(OxyContin) choose it. A review of 28 studies in the Journal of the
• antidepressants such as tricyclics and duloxetine American College of Surgeons found that some women
(Cymbalta) who declined breast reconstruction even did better in
• antiseizure drugs such as gabapentin (Neurontin) terms of body image, quality of life, and sexual out-
or pregabalin (Lyrica) to treat nerve pain comes. In some cases, these women choose tattoos
• nerve blocks (procedures to permanently numb to cover the remaining scars and help define a new
nerves) self-image.
• physical therapy No matter what type of cancer surgery you’ve
• complementary and alternative therapies like acu- had, if scars from your treatment are affecting your
puncture, meditation, or yoga self-image, talk to your doctor about ways to mini-
• relaxation techniques such as deep breathing or mize their appearance. One of the simplest and
meditation. lowest-cost solutions is to conceal your scars with
makeup. Another solution is steroid injections,
which flatten, soften, and smooth scars. For espe-
Scars and body image issues cially stubborn or disfiguring scars, your doctor
Any surgery can leave behind scars—flat or raised might recommend surgery. Though the procedure
marks that form indelible reminders of a cancer long might not fully erase the scar, it should minimize its
after the disease has been eradicated. Scars are signs of appearance.
healing, but they can be unsightly, painful, and itchy. Scars are more than just physical. They can lay
In October 2016, The New York Times ran pho- waste to your confidence and undermine your rela-
tographs of five breast cancer survivors for an arti- tionships. If you’re struggling with the emotional
cle called “‘Going Flat’ After Breast Cancer,” about effects of cancer-related scars, see a counselor or
women who had either chosen not to reconstruct therapist who specializes in treating body image
their breasts after mastectomy or else had repeat sur- issues in cancer survivors. Ask your oncologist for a
gery to have the implants removed. One of the pho- recommendation.
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it so you can share it with any new doctors you see. • a record of all the treatments you received, includ-
You can ask for a copy of your medical record each ing surgery, chemotherapy, radiation, hormone
time you visit a doctor. You can store your own ver- therapy, and gene therapies, with a description of
sion of the EMR, called your personal health record the drugs you took, the dosage, your response, and
(PHR), on your home computer. View and update any side effects you experienced
an electronic PHR using an e-health tool like Blue • dietary advice, psychological counseling, and other
Button, or use a manual system like a filing cabinet support you received during the course of your
or three-ring binder for paper copies. You can also treatment
include records of your benefits—including your • contact information for every doctor involved in
company benefits package, health plan, life insur- your cancer treatment, including your oncologist,
ance, and disability. Back up your files, and give a surgeon, radiation therapist, and primary care phy-
copy to a family member or friend in case you lose sician, as well as the laboratories and imaging facili-
yours or have an emergency. ties where your tests (such as x-rays, CT scans, and
MRI scans) were performed.
In addition to a summary of your medical record,
Your survivorship care plan the document should also include a follow-up care
In 2005, the Institute of Medicine (IOM) released a plan that details
report offering guidance to anyone making the tran- • the type of maintenance therapy you’ll need
sition from cancer patient to survivor. “Too many • how you will likely recover from treatment side
survivors are lost in transition once they finish treat- effects
ment,” the report read. “They move from an orderly • cancer screenings and other tests you’ll need, along
system of care to a ‘non-system’ in which there are with the dates when they should be performed
few guidelines to assist them through the next stage • possible late and long-term effects of your treat-
of their life or help them overcome the medical and ment, and their symptoms
psychosocial problems that may arise.” To ease the • signs of a recurrence or new cancer
transition, the IOM recommended that each cancer • possible effects of cancer on your relationships, sex-
survivor be given a comprehensive care summary ual functioning, work, and parenting ability
and follow-up plan containing everything he or she • information on insurance, employment, and finan-
will need to know moving forward. The Commis- cial consequences of cancer, and referrals to coun-
sion on Cancer (CoC), a program of the American seling, legal aid, and financial assistance
College of Surgeons, has requested that its accredited • recommendations for a healthy lifestyle, including
cancer programs provide survivorship care plans to diet, exercise, weight control, sunscreen use, virus
50% of eligible patients by 2017, and to 75% of eli- prevention, smoking cessation, and osteoporosis
gible patients by 2018. However, not all hospitals are prevention
CoC-accredited, and not all accredited hospitals will • recommendations on genetic counseling and test-
achieve this goal. ing for yourself and your relatives
A survivorship care plan is a comprehensive doc- • referrals to follow-up care providers, support
ument that should contain a full record of informa- groups, and your primary care provider
tion related to your cancer treatment, including the • cancer-related organizations and other resources
following: you might turn to for support.
• your tumor type, location, stage and grade, hor- The health care team at your cancer center might
monal status, and marker information give you a survivorship care plan when you’re dis-
• copies of your diagnostic test results and pathology charged. If they don’t offer this plan, you can print one
reports out from the Internet and fill it out with the help of
• treatment start and end dates your doctors and nurses. Several organizations have
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Cancer’s aftermath—emotions, work, finances
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and may even play a supporting role in treating able to answer your needs, reach out for support
severe depression. When you exercise, your body (see “Support groups,” page 27). Today, many can-
releases feel-good chemicals called endorphins cer support groups are available online, which is
that boost your mood and reduce your stress lev- especially helpful if you live in a rural area, if you’re
els. Simply being in nature has a calming effect, so unable to travel, or if you have a rare kind of cancer.
if you can walk in a place with grass and trees, so • Get creative. Give your emotions a creative outlet
much the better. by writing in a journal, painting, photographing, or
• Try mindfulness. Mindfulness is a heightened state creating a short video. Expressing yourself in this
of awareness. It involves focusing your mind on the way can be a cathartic experience that allows you
present. When worries and concerns enter your to work out feelings like sadness or anger. Creative
mind, you acknowledge them and then let them go. expression can also be soothing, if you choose an
There are formal and informal approaches to mind- art form you truly enjoy.
fulness, but one essential feature is living “in the • Start a support network. Prepare a list of phone
moment.” You have survived the initial bout of can- numbers you can call when you feel down. Your
cer. No one knows what the future will bring. But network might include friends, family, your treat-
you now have an opportunity to live each moment ment team, other cancer survivors, or members of
to the fullest. Appreciate the small pleasures. your religious organization.
Engage your senses fully, so that you savor every Not everyone experiences a rash of negative emo-
joyful sensation. People with cancer often find that tions after a cancer diagnosis. Some cancer survivors
the heightened awareness of mortality makes them emerge with a profound new appreciation for life.
appreciate life more. Joann Totten, who was diagnosed in 2015 with stage
• Relax. Try a relaxation technique like deep breath- 4 lung cancer, vowed to stay positive and make the
ing or meditation to calm and refocus your mind. most of the time she had with her family. “There is
If you’re not good at sitting still, try walking medi- still happiness in our lives—taking a family trip to my
tation, yoga, or qigong. A technique called mind- girls’ birthplace in China, watching them play vol-
fulness-based cognitive therapy—which combines leyball and skate, walking our dogs, and sharing a
mindfulness techniques with cognitive behavioral laugh—and these memories can never be taken away,”
therapy—seems particularly useful for helping to she wrote in a blog post on the website of Dana-Farber
prevent recurrences of depres- Cancer Institute. “Despite my ill-
sion. Like any meditation ness, I know that I am blessed,
practice, it takes time to yield and I remain positive and hope-
results—and is more effective ful that there is a treatment that
the longer you do it. will work effectively to fight my
• Join a support group. Shar- cancer and provide me with time,
ing stories with other can- time, and more time.”
cer survivors can give you a
sense of fellowship and help
you overcome some of the Financial and work
loneliness and isolation your issues
© Mike Watson Images | Thinkstock
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sponsored health plans have risen by 191%. In 2016, for a family (as of 2017). The ACA also guarantees
the average premium was $6,435 for an individual and health insurance coverage for people with pre-exist-
$18,142 for family coverage, according to the Kaiser ing conditions, and abolishes lifetime health care
Family Foundation. On top of premiums, more than limits. Yet a potential repeal and replacement of the
80% of covered workers must pay a deductible, which ACA, which been approved by the House of Repre-
averages nearly $1,500 for each individual covered sentatives and is under discussion in the Senate as
(in high-deductible plans, individuals can pay nearly of this writing, could overturn guaranteed coverage
$2,300 and families about $4,300 before their insur- and spending caps, putting even more of a financial
ance starts to pay). burden on cancer patients. If the ACA is ultimately
The Affordable Care Act (ACA), also known as overturned, insurers might be able to refuse coverage
Obamacare, has offered some financial protection to cancer patients or charge them significantly more
to cancer patients and others with significant health for coverage.
care costs. The ACA capped out-of-pocket spend- Even if you are covered by an ACA or employer
ing at $7,150 annually per individual and $13,700 plan today, your insurance company can refuse to
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moment. You might also forge new alliances with can- cancer will eventually return. Fear of recurrence is
cer survivors you meet during your treatments or at common in cancer survivors, and it can continue for
support groups. These new friends will identify with many years after treatment ends, giving people a sense
your experience in a way no one else can. of constantly waiting for the other shoe to drop.
How you and your loved ones cope with these Though you can’t entirely eliminate your fear of a
challenges can help determine the future course of recurrence, you can learn to manage and live with it.
your relationships. Holding in anger and other feelings The first step in coping with fear is to acknowledge it
will only make tensions grow. That’s why it’s important and be open about it. Express your worries in the safe
to be open and honest with your partner, your chil- space of a therapist’s office. Then you can discuss strat-
dren, and everyone else who is close to you. Let them egies for addressing them. For instance:
know what you’re experiencing, what you need from • Join a support group for cancer survivors.
them, and what you are able to give back. • Engage in activities that distract you from your con-
If you can’t discuss these and other issues on your cerns. Exercise, read a book, or talk with friends.
own, enlist the help of a psychologist or family coun- • Work with your oncologist to develop a survivor-
selor. Take special care with young children, who may ship plan, to include follow-up visits and tests (see
be especially frightened and need reassurance during “Screening tests,” page 43) and steps for reducing
this uncertain time. And be conscious of your loved your risk of recurrence. If possible, participate in
ones’ needs, too. Remember that the people in your a clinical trial testing approaches to further reduce
life who’ve been caring for you also deserve time and risk of recurrence.
space to care for themselves. • Learn to spot the signs that your cancer has
returned, so you can report them to your doctor
quickly (see “Warning signs,” page 42). Also learn
Will the cancer come back? Living which signs aren’t likely cancer, so you don’t live in
with uncertainty a state of perpetual panic. Most symptoms in sur-
Survivors feel a sense of relief when their treatment vivors are not related to a cancer recurrence, so it’s
works. Yet that relief can be short-lived, as they have important to know the difference. Knowledge can
to endure the constant worry and anxiety that their be a powerful tool.
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you’re exhausted and ill from • seminars and workshops on
the stress of your cancer and its topics relevant to survivors,
treatment, it might seem easi- such as insurance, employ-
est to retreat into your shell and ment, legal rights, and care-
Some survivorship programs include integrative
hide from everyone who wants to therapies like tai chi, yoga, meditation, massage, giver issues.
help. Don’t let this happen. While and acupuncture that can help to nurture both Some cancer centers in
some family and friends will your body and your soul. major metropolitan areas offer
distance themselves, others will outpatient treatment centers in
want to be part of your journey. Reach out to them for the suburbs as well as in the city. Cancer survivor-
support. ship resources are also available online; for example,
You can also turn to professional resources to help from the National Cancer Institute’s Office of Cancer
you cope with the repercussions of your cancer. Survivorship (https://cancercontrol.cancer.gov/ocs),
the National Cancer Survivorship Resource Center
(https://smhs.gwu.edu/gwci/survivorship/ncsrc), and
Survivorship programs OncoLink (https://oncolife.oncolink.org).
Many of the major cancer centers—including Dana-
Farber Cancer Institute in Boston, Stanford Cancer
Center in Palo Alto, Memorial Sloan Kettering Can- Counseling
cer Center in New York, Hospital of the University If stress and sadness have become inescapable parts of
of Pennsylvania in Philadelphia, and MD Anderson your daily life and you just can’t shake them, it’s time
Cancer Center in Houston—have cancer survivor- to see a therapist, psychologist, psychiatrist, social
ship programs that address survivors’ ongoing care worker, counselor, or other mental health professional
needs. (see “Screening for psychological issues,” page 19).
These programs are staffed by a team of doctors, Asking for help doesn’t mean you’ve failed. It simply
nurse practitioners, integrative medical specialists, provides a place for you to deal with the issues you
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face and get any persistent worries off your chest. tion and support at times when you feel most alone.
A counselor or other mental health professional You don’t need to attend a church, synagogue,
can help you come to terms with the implications of mosque, or temple to feel a spiritual connection.
your diagnosis and help you gain more control over a Many people find spirituality in nature, or in a gen-
condition that often seems out of your control (see “A eral sense that there is a world beyond our own.
survivor’s story: Katherine Walsh,” page 23). Together, Spirituality is different for each person. If you don’t
you can address issues with relationships and work need it in your life, you can find other sources of
and explore the ways in which cancer has left its mark comfort. If you do need it, you can try one of these
on your life. You can also learn practical techniques to practices:
manage fatigue, loss of sexual interest, and other treat- • prayer—alone, or with members of your religious
ment side effects. And you can discuss ways to com- organization
municate more effectively with your treatment team. • meditation
You might even bring in members of your family to • reading the Bible, Koran, or other religious works
help them understand how to adjust to your new real- • listening to spiritual music
ity as a cancer survivor. • talking with a priest, rabbi, imam, chaplain, or
Counseling can be done in several ways—one-on- other religious leader.
one, with your partner or other family members, or If religion is an integral part of your life, discuss it
as part of a group of other cancer survivors. To find with your treatment team as well. Your hospital might
a counselor, start by asking at your cancer treatment have a pastoral care department that can help inte-
center. Often, these hospitals provide counseling ser- grate spirituality into your care.
vices to their patients. You can also check with your
health insurance company to see which providers are
covered under your plan. Ideally, you want to seek Support groups
out a counselor who has experience treating cancer Your loved ones might have been entirely empathetic
patients. Before you make an appointment, ask about and kind throughout your treatment, but no one truly
his or her approach, and make sure it fits with your understands what you’ve gone through like another
expectations and goals. survivor. A cancer support group is a place where you
can feel free to express your feelings in a safe, sup-
portive environment.
Spirituality and religion Many cancer hospitals and centers offer their own
If you consider yourself to be a spiritual or religious support groups. Or you might find a group (local, tele-
person, then prayer might have played a significant phone, or online) through one of these organizations:
part in your treatment. According to the CDC, 69% • American Cancer Society (go to www.cancer.org;
of cancer patients say they’ve prayed for their health. click on “Treatment & Support,” then “Support in
And a 2015 study of more than 32,000 cancer patients Your Area”)
found that those who described themselves as spiritual • CancerCare (www.cancercare.org, under “Our
reported better physical health. In other studies, spiri- Services”)
tuality has been linked to reduced anxiety, depression, • Cancer Support Community (call 202-659-9709 or
and loneliness and better control of treatment side go to www.cancersupportcommunity.org)
effects like pain and nausea. • Susan G. Komen foundation (for breast cancer; call
Depending on your beliefs, spirituality can mean 877-GO-KOMEN or go to https://ww5.komen.org).
many things. You might look to a higher being for com- Before joining a support group, call its leader and
fort and guidance. You might look to your faith to help ask who attends the groups and what they discuss.
you find a deeper meaning in your cancer journey. Or Also consider whether you’re comfortable discussing
you might lean on your religious institution for connec- personal issues among people you may not know.
specific diet has been identified bread, quinoa, and oatmeal. such as hot dogs and bacon
as protective, but certain eating • Eat healthy fats, such as vegeta- • high-fat dairy products like
patterns have been linked to a ble oil (canola, olive, safflower) whole milk and ice cream
reduced risk of dying after a can- and the omega-3 fatty acids • fried foods
cer diagnosis. found in fish and walnuts. • alcohol.
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Guidelines for a healthy lifestyle after cancer | SPECIAL SECTION
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Guidelines for a healthy lifestyle after cancer | SPECIAL SECTION
Losing just 5% to 10% of your the cancer once it starts. After linked to smoking. A 2016 study
body weight can make a big dif- you’ve been diagnosed with cancer, in the Journal of Clinical Oncol-
ference to your health. Have your smoking can interfere with your ogy found that breast cancer sur-
oncologist and dietitian oversee treatment and worsen side effects vivors who smoke are more likely
your weight-loss plan to make from chemotherapy, radiation, and to die from breast cancer, as well
sure it’s safe for you. If you’re sig- surgery. as from lung cancer, respiratory
nificantly overweight, your doctor Despite volumes of evidence disease, or cardiovascular disease,
might recommend weight-loss sur- highlighting the cancer-tobacco compared with those who don’t
gery to get you back into a healthy connection, nearly 10% of survi- smoke. Your survivor status puts
range. vors continue to smoke years after you at even higher risk of getting
On the other hand, if cancer their diagnosis. In many cases, a smoking-related cancer than
caused you to lose weight, you may their strong physical and men- people who’ve never been diag-
want to increase your daily calo- tal dependence on this addictive nosed with cancer.
rie count once you feel up to eat- substance prevents them from Quitting smoking isn’t easy, but
ing again. High-calorie foods and quitting. it is possible. And you’ll not only
nutritional shakes can help you If you don’t stop smoking, lower your risk of a future cancer,
regain some of the weight you’ve you increase the chance that your but also protect yourself against
lost (see “When you just can’t eat,” original cancer will return or a heart disease, chronic obstructive
page 29). new cancer will begin. You might pulmonary disease (COPD), dia-
also develop another disease betes, cataracts, gum disease, and
Quit smoking many other chronic conditions.
No habit is more deeply connected As a first step, try making an
to cancer than smoking. Doctors appointment with your doctor to
have long known that tobacco discuss smoking cessation strate-
smoking contributes to most cases gies. Or call the American Cancer
of lung cancer, but research shows Society’s Quitline at 800-ACS-2345
that it’s also responsible for nearly (toll-free) to find a program in
half of the deaths from 12 differ- your area. Then, set a date to quit.
ent types of cancer, including liver, A number of tools are available to
colorectal, oral, esophageal, stom- help you, including
ach, bladder, kidney, and pancre- • counseling, in person or by
atic cancers. phone
Every time you take a puff • nicotine replacement products,
© Creatas Images | Thinkstock
kick the habit, but with the right • Practice safe sex. A few sexually When you do have to go out-
support you can be successful. transmitted infections, includ- doors, cover all exposed areas
ing hepatitis B, HIV, and human with sunscreen that has an SPF
Change other papillomavirus (HPV), can of 15 or higher and protects
cancer-prone behaviors increase your risk for cancer. against both UVA and UVB
Diet, exercise, weight control, and If you’re not in a monogamous rays. Also wear sun-protective
smoking cessation are the founda- relationship, use a condom clothing, a wide-brimmed hat,
tions of a cancer prevention strat- every time you have sex. and wraparound sunglasses.
egy. Here are some other lifestyle • Shield yourself from the sun. Avoid tanning beds.
changes that will help reduce your Stay indoors when the sun’s • Don’t share needles, which can
risk of progression, recurrence, or ultraviolet (UV) rays are stron- increase the risk of hepatitis B
secondary cancer: gest—from 10 a.m. to 4 p.m. and hepatitis C.
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Survivors of childhood cancer
cancer survivors.
For a child, overcoming cancer is only the first
hurdle. The effects of powerful radiation and chemo-
therapy drugs are even more profound on growing
bodies than they are on adults. Children who survive Fifty years ago, only 10% of children with cancer survived. Today the
their cancer potentially face decades of long-term and rate exceeds 80%. But the effects of radiation and chemotherapy
late effects (see “A survivor’s story: Meredith Dona- are even tougher on developing bodies than on adult bodies.
hue,” page 34). Sometimes even when the cancer is
survivable, the side effects of treatment are not. A Impact on growth and development
2010 study by researchers from Dana-Farber Cancer Cancer treatments can affect the hormone-produc-
Institute found that childhood survivors live an aver- ing endocrine glands that control a child’s growth
age of four to 17 fewer years than their peers. Their and physical development. Radiation therapy to the
premature deaths are due to recurrences of their origi- head can damage the pituitary gland, stunting growth
nal cancer, new cancers caused by radiation and che- and delaying puberty. Chemotherapy can interrupt
motherapy, and long-term complications like heart puberty, too. Many children catch up on growth once
and lung damage from cancer treatment. their treatment ends, but some chemotherapy drugs,
Today, doctors are aware of the long-term effects especially when given in very high doses, have per-
childhood cancer survivors face, and they take steps manent effects. The bones and muscles are particu-
during treatment and afterward to reduce those risks. larly vulnerable to cancer treatments, because they go
through a period of very rapid growth during child-
hood and adolescence.
Long-term effects of cancer Cancer drugs—including corticosteroids and
Cancer treatment can affect every part of a child’s body. methotrexate—can also weaken bones, increasing the
These effects can develop weeks, months, or even years risk for osteoporosis and fractures. Steroids can lead
after treatment is finished. And because children are to osteonecrosis, reduced blood flow to bones that
still growing, long-term cancer treatment effects are causes part of the bone to die.
magnified and therefore potentially more life-altering
than they are in adults. The emotional issues, too, can Effects on fertility and reproduction
be amplified—not only because a person has more Children aren’t generally concerned about the impact
years to cope with the aftermath, but because the ill- of cancer treatment on their fertility, but once they
ness strikes before mature coping skills are developed. reach reproductive age, they might find that they
At her pediatrician’s office for tests, it became clear to her Doctors warned her that cancer might not be through with
that something was very wrong. “I remember seeing the look her yet, so when the third diagnosis came in 2014, she was
of panic on his face,” she says. When tests confirmed she had almost expecting it. Still, the news was hard to take. “I found
Hodgkin’s lymphoma, she says, “I was worried I might die.” out I had breast cancer right after I got engaged. I was like,
‘Oh my God, now I have to deal with this, too.’” This time the
Donahue didn’t die. She had surgery to treatment was a mastectomy, followed by breast reconstruc-
Cancer remove her spleen (a procedure that’s some- tion and hormonal therapy.
survivor times used to diagnose or treat Hodgkin’s
lymphoma), followed by radiation to her neck Each of Donahue’s three cancers requires its own separate set
and chest. The treatment worked—but it also of follow-up appointments with different specialists, who moni-
left its mark on her body. “The radiation burns your skin,” she tor her for long-term effects and recurrence. “I spend a lot of
says. “I was going to school in February with a sunburned time at Dana-Farber,” she says. Cancer has forced her to make
neck. It affected my taste buds and my throat. Some of my many accommodations and concessions in her life—including
hair fell out. That was all very hard on me because I was a abandoning her hope of having children, because of the tamox-
freshman in high school.” ifen she takes to prevent her breast cancer from returning.
She recovered from her cancer and its side effects and Despite having to manage side effects from her treatment
resumed her life, finishing school and embarking on a career. and deal with the ever-present worry of another cancer on the
More than two decades passed. Then in 2012, Donahue was horizon, Donahue says she lives “a pretty normal life.” Now
hit with another devastating diagnosis. She had tonsil cancer, 42, she’s married and working full-time as a practice manager
which may have been caused by the radiation treatment that for a health care company. “It’s hard, but I just do the best I
previously saved her life. This time she had surgery to remove can,” she says. “I’ve never let anything stop me, but I do have
her tonsils and several lymph nodes surrounding them. The my difficult days.”
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vision problems. Radiation can also cause cataracts— development. Accommodations might include one-
a clouding of the lens. Chemotherapy drugs can con- on-one assistance from a classroom aide, modified
tribute to eye problems like double vision, blurred deadlines, help with reading and other subjects, and
vision, and glaucoma—a sight-threatening increase in extra time for tests.
eye pressure. Radioiodine treatment for thyroid can-
cer can increase tear production, while a bone marrow Emotional issues
stem cell transplant can have the opposite effect, caus- At any age, a cancer diagnosis and treatment are
ing dry eyes. frightening propositions. Children are especially vul-
Ears. Radiation to the head or chemotherapy nerable to feelings of fear and anxiety, because they
drugs like cisplatin (Platinol) can damage hearing, may not understand what is happening to them or
especially in younger children who undergo these know what to expect. As they get older, fear from the
treatments. Symptoms include difficulty hearing con- original cancer subsides, but it can be replaced by fear
versations in noisy environments, ringing in the ears, of a recurrence or new cancer. Childhood cancer sur-
and dizziness if treatment affects parts of the inner ear vivors are at greater risk than their peers for depres-
that control balance. Hearing loss that starts early in sion and other mood disorders, as well as for PTSD.
life can affect a child’s speech development. They’re also vulnerable to body image issues as a result
Mouth and teeth. Radiation therapy to the head, of weight loss or gain, hair loss, or unsightly scars.
neck, and mouth can lead to long-term dental prob-
lems, including missing or small teeth, gum disease, Life issues
cavities, and dry mouth. Chemotherapy can slow Cancer’s effects extend far beyond physical health.
tooth development in children whose first teeth have This disease can intrude on virtually every aspect of
not yet emerged. life, leaving a survivor of childhood cancer vulnerable
to all of these issues:
Learning and memory problems • difficulty completing school
Radiation to the brain or high doses of cancer drugs • trouble finding and holding down a job
like methotrexate can lead to long-term cognitive • reduced access to health care because of the pre-
impairments, including lower I.Q. scores, poorer existing condition
academic performance, and problems with mem- • disrupted relationships with family and friends
ory and attention. A 2013 study in the Journal of • loneliness and isolation
the National Cancer Institute looked at survivors of • relationship and intimacy issues
acute lymphoblastic leukemia in their mid-30s who • cancer-related stigma.
had been treated with radiation during childhood.
Those who had received high doses of radiation had
memory loss similar to that of people in their late Reducing long-term effects of
60s. Very young children are especially vulnerable to childhood cancers
cognitive issues following cancer treatment, because Increasingly mindful of the lifelong effects cancer
brain cells develop most rapidly in the first few years treatments can have, pediatric oncologists today take
of life. great care to minimize long-term damage from treat-
To identify possible learning delays, children ment, while still eliminating the cancer as efficiently
who’ve been treated for cancer can undergo an evalu- as possible. In children, radiation therapy is now
ation by a pediatric psychologist. Once the prob- delivered much more precisely than it was in the past.
lem has been identified, parents can request special Doctors try to avoid or limit the use of radiation in
accommodations from the school—possibly in children younger than 3 years old. In older children,
the form of an Individualized Education Program they prescribe radiation in smaller or more focused
(IEP)—to accommodate problems with thinking and doses to destroy the cancer while sparing healthy
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• a pediatrician, to coordinate care and communi- undergone treatment should receive a treatment sum-
cation between specialists, monitor growth, and mary and survivorship care plan to inform their pedia-
discuss health and disease prevention strategies trician and other specialists during the care transition.
(eventually transitioning to a primary care physi- Childhood cancer survivors can also protect their
cian in adulthood) future health by taking good care of themselves as they
• a pediatric oncologist (and later, survivorship pro- age. A study in the Journal of Clinical Oncology found
vider) to check for late effects of cancer treatment, that Hodgkin’s lymphoma survivors who did regu-
recurrence, or secondary cancer lar high-intensity exercise were less likely to develop
• an endocrinologist or a urologist or gynecologist heart problems than those who were less active. Fol-
to identify and treat hormonal issues, including low the diet, exercise, and other lifestyle tips outlined
delayed puberty, problems with sexual function, in “Guidelines for a healthy lifestyle after cancer” (see
and infertility, as well as bone loss. page 28) to minimize long-term side effects and help
Just as with adult survivors, children who have you remain healthy in the years to come.
J ust as family members often have certain features • An acquired mutation is one you’ve picked up
in common—like dark hair or blue eyes—they may
also share a susceptibility to diseases like cancer. You
during your lifetime—for example, because you
smoked or were exposed to UV radiation. Most
might have noticed that several of your relatives devel- cancers are caused by acquired mutations.
oped the same or related types of cancer. These family Mutations can alter the orderly cell reproduction
cancer syndromes stem from a combination of inher- process, potentially leading to cancer. Three types of
ited genes and shared environmental exposures (see genes are often involved in cancer development:
Table 3, below right). • Tumor suppressor genes regulate the process of cell
Genes—the segments of code packed inside each division. They control how quickly cells multiply
of our 37 trillion or so cells—provide the instructions and ensure that cells die when they’re supposed to,
that make each one of us who we are. If you have your so cells don’t overproliferate. If tumor suppressor
mother’s blue eyes or your father’s curly hair, those genes are mutated, cells can multiply unfettered
traits are manifestations of the genes you’ve inherited. and form tumors. P53 is an example of a tumor
Genes are made up of segments of DNA—
sequences of varying patterns of four
Table 3: Family cancer syndromes
chemical bases: adenine (A), guanine (G),
Here are examples of a few inherited cancer types and the genes that increase
cytosine (C), and thymine (T). Strands of your risk. Genetic tests are available for these mutations.
DNA are wound up into threadlike struc- GENE(S) TYPES OF CANCER IT CAUSES
tures called chromosomes. You have two
APC Colorectal, brain, stomach, bone, skin
sets of chromosomes—23 from each of
your parents. BRCA1, BRCA2 Breast (male and female), ovarian, prostate, pancreatic,
melanoma
Each gene codes for the production of
a protein, and each protein is responsible CDKN2A Melanoma
for a different function in your body. Any CHEK2 Breast, ovarian, prostate, lung, colon, kidney, thyroid
alteration to the genetic code—no matter
MEN1 Pancreatic, parathyroid, pituitary gland
how small—may change how your body
functions, and often not for the better. MLH1, MSH2, MSH6, Colorectal, ovarian, endometrial, uterine, pancreatic,
PMS2, EPCAM liver, stomach, brain, breast
Changes in your DNA sequence are called
mutations, and they can give rise to can- MYH Colorectal
cers. You can get mutations in one of two PTEN Breast, endometrial, thyroid
ways: RB1 Eye, pineal gland, bones, melanoma, soft tissue sarcoma
• An inherited mutation is passed down
RET Thyroid
from your parents. It can be autosomal
dominant (meaning that you need to STK11 Colorectal
inherit only one copy of the mutated gene TP53 Bone and soft tissue sarcoma, leukemia, brain, breast,
to have an increased cancer risk) or auto- adrenal, colon, adenocarcinoma
somal recessive (meaning that you need TSC1, TSC2 Kidney
two copies of the mutated gene—one
VHL Kidney
from each parent—to have a higher risk).
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suppressor gene. Mutations in this gene are fortu- makes you more susceptible to colorectal cancer, a
nately very rare, but they can lead to a number of high-fat, meat-heavy diet and lack of exercise could
cancers, including sarcoma, leukemia, brain can- tip the balance toward developing cancer rather than
cer, and breast cancer. remaining cancer-free. In other words, you inherit a
• DNA repair genes fix mistakes in the DNA code. predisposition or susceptibility to a particular cancer,
When they are mutated, mistakes don’t get cor- but whether you actually get the cancer is not prede-
rected, which could lead to cancer. BRCA1 and termined. Many people live with gene mutations and
BRCA2 are examples of DNA repair genes. Muta- never show any harmful effects from them.
tions in these genes lead to hereditary breast, ovar-
ian, prostate, and pancreatic cancers, as well as
melanoma. Should you and your family get
• Oncogenes are genes that turn healthy cells can- tested?
cerous. An example is MYC, which contributes to During cancer treatment, a pathologist may do
B-cell leukemia, Burkitt’s lymphoma, and some genomic testing on a sample of your tumor to get a
types of lung cancer. better sense of what treatments may help you most—
If a certain type of cancer—say, breast or pros- for example, if you have a particular subtype of a
tate cancer—runs in your family, genes you’ve inher- given cancer. This is different from the genetic muta-
ited may be to blame, but usually only partly so. Only tion testing to determine why you might have got-
about 5% to 10% of these family cancer syndromes ten cancer and whether you may have an inherited
are the direct result of an inherited gene mutation. predisposition.
The rest are due to a complex interplay of genetics and Getting tested for genetic mutations that cause
environmental triggers. cancer can help you learn whether your cancer was
These cancers can also be influenced by the fam- related to genes—and therefore if other family mem-
ily you grew up in, since families have a tendency to bers might also be at risk. It may be worthwhile for
share other cancer risks—like a poor diet, obesity, or them to get tested if there is a strong history of a par-
smoking. So though you might inherit a gene that ticular cancer in your family, especially if two or more
of your relatives were diagnosed at a young age (see
“Criteria for genetic testing,” at left). If they opt for
Criteria for genetic testing testing and turn out to have a cancer-related muta-
tion, knowing their risks in advance will encourage
E xperts recommend that you and other members of
your family undergo genetic testing for cancer if you
meet these any of these criteria:
them to have regular cancer screenings, thus improv-
ing their chances of finding cancer early, when it is
• You have several close relatives with the same type of easiest to treat.
cancer. Even if you’ve already had cancer, testing can
• One or more family members have had two or more
give you a window into your future cancer risks. For
related cancers, such as breast and ovarian cancer, or
colorectal and endometrial cancer. example, if you’ve had breast cancer and you learn
• Your family members developed cancer at a young age
that you carry the BRCA1 or BRCA2 gene muta-
(before age 50). tion, you’ll know that you’re also at risk for ovarian
• A family member developed several different types of cancer and cancer in the other breast. Then you can
cancer, or got cancer in two paired organs (such as both decide whether to have regular surveillance, undergo
kidneys or both breasts). preventive surgery, or take chemopreventive drugs
• You’re a member of an ethnic group that is known like tamoxifen (Nolvadex). Family members who test
to develop certain hereditary cancer syndromes (for
positive can make similar decisions. You’ll also learn
example, Ashkenazi Jews are more likely to inherit BRCA
mutations). whether you could pass cancer susceptibility to your
children.
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What happens if your cancer returns
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Screening tests urethra and up into the bladder, so your doctor can
Once you’ve been treated for cancer, you’ll set up a monitor for bladder cancer.
schedule of exams and screenings to verify that you Blood or urine tests for tumor markers. Some
are still cancer-free and to catch any new cancers cancers release substances that can alert your doc-
early (see “A survivor’s story: Jeff Sirlin,” below). Your tor to their presence. For example, carcinoembryonic
oncologist or primary care provider will oversee a fol- antigen (CEA) is used to detect colon cancer recur-
low-up care plan that includes regular exams and tests rence. Bladder tumor antigen (BTA) identifies cancer
in the upcoming months and years. These visits usu- of the bladder, kidneys, or ureters. PSA for prostate
ally follow a stepwise pattern, starting at intervals of cancer (next entry) is also a type of tumor marker.
every few months, then stepping down to once a year, Prostate-specific antigen (PSA) test. The PSA
and then possibly to longer intervals between visits. test measures levels of a protein that rise when you
Depending on the cancer you had and your risks for have prostate cancer or any other abnormal activity
other cancers, you might need one or more of these in your prostate. Although this blood test is contro-
tests. Some of them are useful screening tests that are versial for diagnosing an initial prostate cancer, it is
recommended at regular intervals anyway: recommended during treatment. Prostatectomy and
Bone scan. This test uses a small amount of a androgen deprivation therapy—two common treat-
radioactive tracer injected into a vein to find cancer ments for prostate cancer—should both lower PSA
that has started in or has spread to your bones. levels substantially. If levels rise, it could mean these
Chest x-ray. A chest x-ray uses a low dose of interventions haven’t been successful.
radiation to produce images of your lungs. It can help Digital rectal exam. During this exam, the doctor
your doctor find cancer that has started in or spread inserts a gloved, lubricated finger into a man’s rectum
to your lungs. to check for abnormalities in the prostate gland. This
Cystoscopy. This procedure involves inserting a exam cannot, however, detect small cancers or those
thin tube with a camera and light on it through the in the front portion of the prostate gland.
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Prostate cancer Bladder cancer
You’ll see your doctor every six months or so for PSA Most bladder cancer survivors see their doctor once
tests and digital rectal exams (if your prostate is still every three to six months for blood, imaging, and
intact). After five years, you can switch to a once- urine cytology tests (to look for abnormal cells in the
yearly schedule. You might also need imaging scans, urine). If you still have your bladder, you’ll also need
depending on your risks and symptoms. regular cystoscopy. If you have no signs of cancer, your
doctor will let you extend the time between visits.
Colorectal cancer
For the first couple of years after your treatment, you’ll
get an exam every three to six months. Then you’ll go Treatment for a recurrence
back once every six months for the next few years. Sometimes, despite the best care and vigilance, your
Within a year after your surgery, you’ll have a colonos- cancer will come back. If you do get cancer again, your
copy. If the result is normal, you can wait three years doctor will talk you through your treatment options.
to have another one. If you’re at high risk for a recur- As you might have done the first time you were diag-
rence or your first cancer spread to your liver or lungs, nosed, you can ask for a second opinion. You might
you’ll also have regular CT scans. During your follow- need to consult with another oncology specialist if
up visits, your doctor might test your blood for the you have cancer in a different part of your body.
marker CEA, which will rise if your cancer returns. To treat a recurrence of the same cancer, you
might try the same regimen you were on previously.
Leukemia Or your doctor might give you a new therapy if you
You’ll see your oncologist every three to four months didn’t respond well the first time or you had a reaction
at first, and then taper off to once or twice a year. Dur- to the drug you were on. Sometimes your cancer can
ing your visits, you may have blood tests to check your become resistant to the effects of one chemotherapy
white and red blood cell counts, bone marrow tests to drug regimen, and you’ll need to try another drug or
look for cancerous cells, and possibly imaging scans. type of treatment that works in a different way.
Don’t let a recurrence leave you disheartened. You
Skin cancer overcame your cancer once, and you can do it again.
For basal cell cancers, your doctor will see you once Sometimes the second cancer is curable. In other
every six to 12 months. Squamous cell cancer fol- cases, it becomes a chronic condition that is manage-
low-ups are done once every three to six months. able. The danger is that individual cancer cells may
The frequency of melanoma visits depends on the have survived the initial treatment and spread to mul-
extent of your cancer. If you had an early-stage mel- tiple areas of the body, seeding new cancers there.
anoma that your doctor completely removed, you’ll Even if treatments don’t stop the cancer right away,
come back every six to 12 months. For a thicker you can look into clinical trials of new therapies that
melanoma that wasn’t completely removed, or one might be effective for your type of cancer.
that spread, you’ll visit your doctor every three to If you didn’t join a support group after your first
six months. cancer, you may want to join one now. No one has
During your visits, the doctor will examine your a better understanding of what you’re going through
skin for signs that the cancer has returned. If your can- than others with similar circumstances. Also, lean on
cer was more aggressive, you might also have imaging family and friends, and let them know what you need.
tests, such as a CT scan. Your doctor will likely recom- Many will want to help but may be at a loss for what
mend that you also check your own skin once a month. to say or do. Only you can tell them.
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Resources continued
310-450-3399 Adult cancer survivorship programs
https://us.movember.com
This organization is devoted to saving the lives of men diagnosed Dana-Farber Cancer Institute
with prostate and testicular cancers. 450 Brookline Ave.
Boston, MA 02216
National Cancer Institute 617-632-4523
BG 9609 MSC 9760 www.dana-farber.org/For-Adult-Cancer-Survivors.aspx
9609 Medical Center Drive
Bethesda, MD 20892 Fred Hutchinson Cancer Research Center
800-4-CANCER (800-422-6237) (toll-free) 1100 Fairview Ave. N.
www.cancer.gov Seattle, WA 98109
Office of Cancer Survivorship 206-288-1024
http://cancercontrol.cancer.gov/ocs www.fredhutch.org/en/treatment/survivorship.html
The National Cancer Institute is the federal government’s main
cancer research agency. It offers information to the general public MD Anderson Cancer Center
on cancer diagnosis and treatment. 1515 Holcombe Blvd.
Houston, TX 77030
NeedyMeds, Inc. 855-728-7094 (toll-free)
800-503-6897 (toll-free) www.mdanderson.org/patients-family/life-after-cancer.html
www.needymeds.org
Memorial Sloan Kettering Cancer Center
This nonprofit organization provides information on programs to 1275 York Ave.
help consumers who can’t afford their medication. New York, NY 10065
800-525-2225 (toll-free)
OncoLink
www.mskcc.org/experience/living-beyond-cancer/survivorship
www.oncolink.org
https://oncolife.oncolink.org
Stanford Health Care
This website from Penn Medicine at the University of Pennsylvania 875 Blake Wilbur Drive
offers a variety of resources for those at various stages of the Palo Alto, CA 94304
cancer journey. The OncoLife section of the site helps you draw up 650-498-6000
a survivorship care plan. http://stanfordhealthcare.org/medical-clinics/cancer-survivorship-
program.html
Patient Access Network
P.O. Box 221858
Charlotte, NC 28222 Childhood cancer survivorship programs
866-316-7263 (toll-free)
www.panfoundation.org Children’s Hospital of Philadelphia
The Patient Access Network helps people with life-threatening Cancer Survivorship Program
and chronic diseases cover out-of-pocket health care costs. 3401 Civic Center Blvd.
Philadelphia, PA 19104
Patient Advocate Foundation 267-426-0210
421 Butler Farm Road www.chop.edu/centers-programs/cancer-survivorship-program
Hampton, VA 23666
800-532-5274 (toll-free) Dana-Farber Cancer Institute
www.patientadvocate.org David B. Perini, Jr. Quality of Life Clinic
450 Brookline Ave.
The Patient Advocate Foundation helps patients settle medical
Boston, MA 02216
and care access issues through arbitration, mediation, and
617-632-5124
negotiation.
www.dana-farber.org/For-Survivors-of-Childhood-Cancer.aspx
Susan G. Komen
5005 LBJ Freeway, Suite 250 St. Jude Children’s Hospital
Dallas, TX 75244 Division of Cancer Survivorship
877-GO-KOMEN (877-465-6636) (toll-free) MS 735, Room S6014
https://ww5.komen.org 262 Danny Thomas Place
Memphis, TN 38105
This organization funds medical research and provides support to 901-595-3384
breast cancer patients. www.stjude.org/treatment/survivorship.html
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Glossary
acquired mutation: A gene change that you pick up during your myocardial ischemia: A reduction in blood flow to the heart,
lifetime—for example, because you smoked or you were exposed usually because of a blockage in one of the arteries that carries
to ultraviolet radiation. Most cancers are caused by acquired blood to the heart.
mutations. neurofeedback: A technique that uses an electroencephalogram
arrhythmia: An abnormal heart rhythm in which the heart beats (EEG) to display your brain activity so that you can learn how to
too fast, too slowly, or irregularly. gain more control over certain mental functions.
atherosclerosis: Hardening and narrowing of the arteries caused neurologist: A specialist who treats conditions of the brain and
by fatty deposits called plaques. spinal cord, including memory loss and nerve damage.
autosomal dominant: In the context of gene mutations, a type neuropathy: Nerve damage that can be a result of certain cancer
of gene change in which you only need to inherit one copy of the treatments.
mutated gene to have an increased cancer risk. oncogene: A type of gene that can turn healthy cells cancerous.
autosomal recessive: In the context of gene mutations, a type oncologist: A specialist who treats cancer and who follows
of gene change in which you need to inherit two copies of the survivors for side effects and cancer recurrence.
gene—one from each parent—to have an increased cancer risk.
oncology nurse: A health care professional who monitors the
cardiomyopathy: Disease of the heart muscle. health of cancer patients and serves as the main line of communi-
cognitive rehabilitation: A program of mental exercises that’s cation between them and the oncologist.
designed to help overcome treatment-related cognitive impair- ostomy: A surgically created opening through which wastes are
ment and improve memory, attention, and concentration. removed from your body into a bag.
colonoscopy: A test that uses a camera mounted on a thin, flex- palliative care specialists: Medical professionals who help
ible tube to show the inside of your colon and rectum—the lower manage cancer side effects like nausea, pain, and fatigue.
part of your large intestine. During this test, your doctor can find
and remove growths called polyps, which can grow into colorectal pericarditis: Swelling of the membrane surrounding the heart.
tumors positron emission tomography (PET) scan: A test that tracks
computed tomography (CT) scan: A test that takes a series of a radioactive material (which is injected or swallowed) to find
x-rays of the inside your body and combines them into a three- cancer in your body.
dimensional image. post-traumatic stress disorder (PTSD): A disorder in which
coronary artery disease: A condition in which the blood vessels people who’ve survived a traumatic event, such as war, violence,
that supply the heart become stiff and narrow, impairing blood or a life-threatening disease, relive the event over and over again
flow to the heart. in their minds.
digital rectal exam: A test for prostate cancer in which the doc- prostate-specific antigen (PSA) test: A blood test that mea-
tor inserts a gloved, lubricated finger into a man’s rectum to check sures levels of a protein that rise when a man has prostate cancer
for abnormalities in the prostate gland. or any other abnormal activity in the prostate.
DNA repair gene: A type of gene that fixes mistakes in the DNA pulmonary hypertension: Increased blood pressure in the
code. arteries of the lungs.
endocrinologist: A specialist who treats hormonal conditions, pulmonologist: A specialist who treats lung conditions.
such as diabetes and hypothyroidism. recurrence: When your original cancer returns, either in the same
heart failure: A condition in which damage to the heart prevents place it started (for example, your breast or lung) or in another
it from pumping enough blood to the body. part of your body.
hypothyroidism: A condition in which the thyroid gland in the secondary cancer: A new cancer that is unrelated to your
neck can’t produce enough of its hormones, leading to a slowed original cancer.
metabolism and symptoms like fatigue, cold intolerance, and sigmoidoscopy: A screening test for colorectal cancer that
weight gain. enables the doctor to see the lower part of your colon and rectum.
inherited mutation: A change to a gene that is passed down tinnitus: Hearing damage marked by ringing in the ears.
from parents to their children. tumor suppressor genes: Genes that regulate how quickly cells
magnetic resonance imaging (MRI) scan: A test that uses a multiply and ensure that cells die when they’re supposed to, so
powerful magnet and radio waves to look at organs and other cells don’t overproliferate. If tumor suppressor genes are mutated,
structures inside your body. It can help distinguish between normal cells can multiply unfettered and form tumors.
tissue and cancer. ultrasound: A test that uses sound waves to produce images of
mammogram: A test that uses x-rays to create images of the your organs. Sound waves bounce differently off cancerous tissue
breasts to identify breast cancer. than they do off normal tissue.