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Secondary breast cancer

JASCAP
JEET ASSOCIATION FOR SUPPORT TO CANCER PATIENTS, MUMBAI, INDIA

2 JASCAP JEET ASSOCIATION FOR SUPPORT TO CANCER PATIENTS c/o. Abhay Bhagat & Co., Office No.4, “Shilpa”, 7th.Road, Prabhat Colony, Santacruz (East), Mumbai – 400 055 Tel.: 2617 7543, 2616 0007. Fax: 91-22-2618 6162 E-mail :pkrjascap@gmail.com & abhay@abhaybhagat.com

JASCAP is a charitable trust that provides information on various aspects of cancer. This can help the patient and his family to understand the disease and its treatment and thus cope with it better.

Registered under the Societies Registration Act, 1860 No.1359 / 1996 G.B.B.S.D., Mumbai and under the Bombay Public Trusts Act, 1950 No. 18751 (Mumbai). Donations to JASCAP qualify for deduction u/s 80G (1) of the Income Tax Act, 1961 vide Certificate No. DIT (E) / BC / 80G / 1383 / 96-97 dated 28.02.97 subsequently renewed. Contact: Mr. Prabhakar K. Rao or Mrs. Neera P. Rao

Donation suggested Rs.30.00

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© Cancerbackup September 2009 This booklet is an adaptation of “understanding secondary breast cancer ” produced by Cancerbackup and is reproduced with their kind permission. JASCAP gratefully acknowledges Cancerbackup’s permission to reproduce this booklet.

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ABOUT THIS BOOKLET Secondary Breast Cancer
This booklet is for you if you have or someone close to you has a Secondary breast cancer If you are a patient, your doctor or nurse may wish to go through the booklet with you and mark sections that are particularly important for you.

Illustration and section of the breast.

Anatomy

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Contents
About JASCAP About this booklet About secondary breast cancer  What is cancer?  Types of cancer  What is breast cancer?  Secondary breast cancer Symptoms & diagnosis  Symptoms  Diagnosis Treating secondary breast cancer  Treatment overview  Planning treatment  Hormonal therapies  Chemotherapy  Radiotherapy  Bisphosphonates  Biological therapies  Research - clinical trials Living with secondary breast cancer  Controlling symptoms  Complementary therapies  Coping  Help at home  Sex life  Living with and after cancer

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About secondary breast cancer
What is cancer?
The organs and tissues of the body are made up of tiny building blocks called cells. Cancer is a disease of these cells. Cells in different parts of the body may look and work differently but most reproduce themselves in the same way. Cells are constantly becoming old and dying, and new cells are produced to replace them. Normally, cells divide in an orderly and controlled manner. If for some reason the process gets out of control, the cells carry on dividing, developing into a lump which is called a tumour.

Tumours can be either benign or malignant. Cancer is the name given to a malignant tumour. Doctors can tell if a tumour is benign or malignant by examining a small sample of cells under a microscope. This is called a biopsy. In a benign tumour the cells do not spread to other parts of the body and so are not cancerous. However, if they continue to grow at the original site, they may cause a problem by pressing on the surrounding organs. A malignant tumour consists of cancer cells that have the ability to spread beyond the original area. If the tumour is left untreated, it may spread into and destroy surrounding tissue. Sometimes cells break away from the original (primary) cancer. They may spread to other organs in the body through the bloodstream or lymphatic system. The lymphatic system is part of the immune system - the body's natural defence against infection and disease. It is a complex system made up of organs, such as bone marrow, the thymus, the spleen, and lymph nodes. The lymph nodes (or glands) throughout the body are connected by a network of tiny lymphatic ducts. When the cancer cells reach a new area they may go on dividing and form a new tumour. This is known as a secondary cancer or metastasis. It is important to realise that cancer is not a single disease with a single type of treatment. There are more than 200 different kinds of cancer, each with its own name and treatment.

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Types of cancer
Carcinomas
The majority of cancers, about 85% (85 in a 100), are carcinomas. They start in the epithelium, which is the covering (or lining) of organs and of the body (the skin). The common forms of breast, lung, prostate and bowel cancer are all carcinomas. Carcinomas are named after the type of epithelial cell that they started in and the part of the body that is affected. There are four different types of epithelial cells: squamous cells - that line different parts of the body, such as the mouth, gullet (oesophagus), and the airways  adeno cells - form the lining of all the glands in the body and can be found in organs such as the stomach, ovaries, kidneys and prostate  transitional cells - are only found in the lining of the bladder and parts of the urinary system  basal cells - that are found in one of the layers of the skin. A cancer that starts in squamous cells is called a squamous cell carcinoma. A cancer that starts in glandular cells is called an adenocarcinoma. Cancers that start in transitional cells are transitional cell carcinomas, and those that start in basal cells are basal cell carcinomas.

Leukaemias and lymphomas
These occur in the tissues where white blood cells (which fight infection in the body) are formed, i.e. the bone marrow and lymphatic system. Leukaemia and lymphoma are quite rare and make up about 6.5% (6.5 in 100) of all cancers.

Sarcomas
Sarcomas are very rare. They are a group of cancers that form in the connective or supportive tissues of the body such as muscle, bone and fatty tissue. They account for less than 1% (1 in 100) of cancers. Sarcomas are split into two main types:
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bone sarcomas - that are found in the bones soft tissue sarcomas - that develop in the other supportive tissues of the body.

Others forms of cancer
Brain tumours and other very rare forms of cancer make up the remainder of cancers.

What is breast cancer?
The organs and tissues of the body are made up of tiny building blocks called cells. Cancer is a disease of these cells. It is important to realise that cancer is not just one disease with a single cause and a single type of treatment. There are more than 200 different kinds of cancer, each with its own name and treatment. A cancer that starts in the breast is known as a primary breast cancer.

12 Treatment for breast cancer will get rid of the cancer for many women and the cancer may not come back, so the cancer is cured.

Local recurrence
In some women, treatment for breast cancer does not remove all the cancer cells. These cells may then grow in the breast or scars – sometimes many years later. This is known as local recurrence. The cancer cells may grow into a lump in the skin of the breast over where the cancer was originally removed, or in the operation scar. Sometimes the breast cancer may re-grow in the breast tissue left after a lumpectomy.

Secondary breast cancer
In some women, cancer cells break away from the primary breast cancer and spread to other parts of the body in the bloodstream or lymphatic system (see diagram below). The cells may lie dormant (inactive) for years before they begin to grow again. The lymphatic system is part of the immune system − the body's natural defence against infection and disease. It is a complex system made up of organs, such as bone marrow, the thymus, the spleen, and lymph nodes (lymph glands). The lymph nodes throughout the body are connected by a network of tiny lymphatic ducts. Some time after breast cancer treatment, if cancer cells have broken away and spread to other organs of the body they may begin to grow and cause symptoms. This is known as secondary breast cancer.

Structure of the lymphatic system

Secondary cancers are also called metastases, so another name for secondary breast cancer is metastatic breast cancer. The most common places that breast cancer cells spread to are the bone, liver, lung or brain. Secondary breast cancer can also affect the lymph glands. It is most likely to affect the lymph nodes in the armpits or the lower part of the neck.

13 Breast cancer cells do not usually spread to many places in the body at once. Although it is possible for secondary breast cancer to affect more than one place at a time, it more commonly affects just one or two parts of the body. Each woman's situation is individually assessed and the appropriate treatment given depending on where the breast cancer has spread to. A woman with secondary breast cancer affecting the bones will have different symptoms and may need different treatment from a woman with secondary breast cancer affecting the liver.

Symptoms and diagnosis Symptoms of secondary breast cancer
General symptoms
The symptoms will depend on which part of the body is affected. However, there are a few general symptoms which some women have. These include:
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being more tired than usual generally feeling unwell having less of an appetite. It is important to discuss any new symptoms with your doctor, particularly if they seem to be continuing. However, general symptoms may also be caused by other conditions, such as colds and flu. These symptoms are also side effects of cancer treatment and can occur for weeks or months after completing treatment for primary breast cancer. Therefore the side effects are not always due to a secondary breast cancer. The following information is about specific symptoms of secondary breast cancer. We also have detailed information about secondary cancers in the bones, lymph nodes, liver, lung and brain. We have not included information about rarer symptoms of secondary breast cancer.

Local recurrence
Sometimes a small number of breast cancer cells, that were too small to see, are left at the area of the operation after surgery. If this happens, these cancer cells may grow and form a new lump. Lumps may form in the remaining breast tissue after a lumpectomy, in the skin near the breast after a mastectomy, or in the operation scar. However, most cancers that are found after a lumpectomy are new cancers and not a recurrence. The first sign of a local recurrence is usually the development of a small lump (sometimes called a nodule) in the skin or in the scar, or there may be a lump in the deeper breast tissue. These local recurrences can usually be treated and controlled, but it is important to report it to your doctor as soon as you notice it. If it is left untreated the skin in the area may break down and become sore (ulcerated).

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Secondary breast cancer in the lymph nodes
If the breast cancer cells have spread to the lymph nodes they will cause a firm, usually painless, swelling. This happens most often in the lymph nodes of the armpit (axilla) or in the neck, but can affect lymph nodes in other parts of the body, such as behind the breast bone (sternum) or next to the collar bones. It is common for breast cancer to spread to the lymph nodes in the armpit. This isn’t always a sign that the cancer is secondary or metastatic. Many women with early breast cancer (stages 2–3) have cancer in these lymph nodes when the cancer is first diagnosed, and this is treated either by removing the nodes or by having radiotherapy.

Lymphoedema (swollen arm)
If cancer cells grow and block the lymph glands in the armpit, the arm on that side of the body can swell – this is called lymphoedema. Lymphoedema can also occur if the lymph nodes in the armpit have been treated by radiotherapy or have been removed by surgery. This can cause scarring that damages the lymph nodes that drain the arm. If the lymph glands of the armpit are damaged or blocked, they may be unable to drain fluid from the tissues in the arm or fight infection. Fluid then builds up, causing swelling. Lymphoedema can be very uncomfortable. It can make moving your arm difficult, and there is a greater likelihood of developing an infection in the arm. Treatment for lymphoedema is discussed on the controlling symptoms page.

Secondary breast cancer in the bone
The first sign of a secondary cancer in the bones is usually a nagging ache in the affected bone. This can become painful, making it difficult to get to sleep at night or to move around without taking painkillers. The pain is generally present both day and night, whereas an arthritic type pain is often worse early in the morning and is not there all the time. Women who have had treatment for breast cancer should always discuss any new pain which lasts more than two weeks with their doctor. It is very understandable to worry that a new ache or pain means the cancer has spread, but the cause is very often an everyday ache or muscle strain. Your doctor will do tests to find the cause of any continuing pain, which can help to put your mind at rest. A secondary cancer in the bone may gradually damage the bone. The damage only happens in the part affected by the cancer cells. The more the bone is damaged, the weaker it becomes. Pain and weakness can make getting around difficult, and a bone that is very weak may break (fracture). Sometimes breaking a bone is the first symptom of secondary breast cancer in the bone. These fractures can happen after a very minor injury, simply because the bone is weakened. When a bone breaks in this way, it is called a pathological fracture. When bones are affected by secondary cancer cells, increased amounts of calcium (the substance that helps to build bones) may be released into the blood. Too much calcium in the blood is called hypercalcaemia. It can cause symptoms such as tiredness, feeling sick, constipation, thirst and confusion. However, in many people hypercalcaemia is discovered during a blood test before any symptoms develop.

15 Secondary breast cancer in a bone can be treated. For most women, treatment can be started long before the bone becomes weak enough to break or cause severe pain. Treatment for hypercalcaemia is discussed on the controlling symptoms page.

Secondary breast cancer in the lungs
The first sign of secondary breast cancer in the lung may be a persistent cough, or breathlessness. Breathing problems can be frightening, but there are very effective ways of relieving breathlessness which can quickly make your breathing easier. If cancer cells settle on the outside of the lungs, they irritate the membrane which covers the lungs (the pleura). This causes fluid to build up, which presses on the lungs. This is known as a pleural effusion. We have further information on pleural effusions and coping with breathlessness.

Secondary breast cancer in the liver
Women whose breast cancer has spread to the liver may feel generally unwell and tired, with a loss of energy. It may feel uncomfortable in the area of the liver (on the right side of the abdomen, just under the lower ribs). Some women feel sick (nauseous) and lose their appetite. Secondary breast cancer in the liver is only painful if the secondary cancer is on the outside of the liver and pressing on the capsule surrounding the liver, which is unusual. The liver produces a substance called bile, which helps to digest food in the intestine. If the bile ducts leading out of the liver are blocked by secondary cancer, bile may build up in blood and cause jaundice. This causes the skin and the whites of eyes to become yellow and may make skin feel itchy. The liver is a large organ and is capable of working efficiently when part of it, or even most of it, is affected by cancer. The symptoms of secondary breast cancer cells affecting the liver can usually be effectively controlled.

Secondary breast cancer in the brain
The idea of secondary cancer affecting a part of your brain can be very frightening. The brain controls the body, and it can be worrying to think of losing some control. However, the symptoms of a secondary tumour in the brain can often be well managed. If a secondary breast cancer develops in part of your brain, pressure may build up and cause headaches and nausea (feeling sick). These symptoms may be worse on waking in the morning and get better through the day. The headaches are often at the back of the head. They are often worsened by coughing and sneezing. Sometimes the first sign of a spread of the cancer to the brain may be a seizure (fit). Secondary cancer may affect an area of the brain which controls a certain part of the body. This can occasionally cause an arm or a leg to become weaker than usual, or there may be a feeling of numbness, tingling, or pins and needles. Sometimes, secondary cancer in the brain may cause a change in personality. It is important to remember that no woman with secondary breast cancer is going to have all, or even most, of the symptoms discussed here. Secondary breast cancer is many different conditions; the only common factor is that the cancer cells all started

16 from a primary breast cancer. Each condition has its own particular set of symptoms and treatment.

Diagnosing secondary breast cancer
Waiting for your test results
Waiting to have tests, and waiting for the results, will be a worrying time for you and the people close to you. You may worry that the cancer has come back or spread, but without the results of the tests you cannot know for sure. In this situation you may find yourself torn between believing there is some other cause for your symptoms and thinking the worst. Often the uncertainty is the hardest part. It can sometimes be easier to cope once the results of the tests are known. If the tests show that that you have secondary breast cancer, this can come as a huge shock. You may like to talk to your healthcare staff at the hospital, our cancer support specialists or another support organisation.

The bones
A blood test will be done to check the amount of calcium in the bloodstream. Too much calcium (hypercalcaemia) may indicate that there is cancer in the bones. You may also have a blood test called a full blood count. This measures the number of different blood cells in your blood and shows how well your bone marrow is working. The bone marrow is the spongy part in the centre of most bones that produces blood cells. On their own these blood tests can’t diagnose a secondary cancer in the bone. X-rays and bone scans will usually be needed to confirm the diagnosis. X-rays give a general picture of the condition of bones, but they may not be able to detect small areas of secondary tumours. A bone scan is a more sensitive test which may pick up tiny areas of bone that have been affected by secondary breast cancer. A tiny amount of a mildly radioactive substance is injected into a vein, usually in the arm, and travels around the body in the bloodstream. Abnormal areas of bone absorb more radioactivity than normal bone and show up on a scanner. The scan pictures are usually taken 2–3 hours after the injection. Bone scans can’t always tell whether an abnormal area is due to cancer or other conditions such as arthritis. For this reason, more detailed scans such as CT or MRI scans may be needed.

The lungs
A chest x-ray may show whether there is any secondary breast cancer in the lungs and will also show any build-up of fluid between the membranes on the outside of the lungs (the pleura). A CT (computerised tomography) scan may be used. This scan takes a series of x-rays which build up a three-dimensional picture of the inside of the body. The scan is painless but takes longer than an x-ray (about 10–20 minutes). Most people who have a CT scan are

17 given a drink or injection to allow particular areas to be seen more clearly. You will probably be able to go home as soon as the scan is over. An MRI (magnetic resonance imaging) scan is similar to a CT scan, but uses magnetic fields instead of x-rays to build up a series of cross-sectional pictures of the body. During the test you will be asked to lie very still on a couch inside a metal cylinder that is open at both ends. The whole test may take up to an hour and is painless - although the machine is very noisy. You will be given earplugs or headphones to wear. The cylinder is a very powerful magnet, so before going into the room you should remove all metal belongings. You should also tell your doctor if you have ever worked with metal or in the metal industry or if you have any metal inside your body (for example, a cardiac monitor, pacemaker, surgical clips, or bone pins). Some people are given an injection of dye into a vein in the arm, but this usually does not cause any discomfort. You may feel claustrophobic inside the cylinder, but you may be able to take someone with you into the room to keep you company. It may also help to mention to the staff beforehand if you do not like enclosed spaces. They can then offer extra support during your test.

The liver
Blood tests can show whether the liver is working properly, but they can’t always tell whether any problem is due to secondary cancer or another condition. Liver scans can be used to build up a clearer picture of what is happening in the liver. Liver ultrasound scans are done in the hospital scanning department. The test uses sound waves to build up a picture of the liver and can measure the size and position of any secondary cancers in the organ. Ultrasound is painless and only takes a few minutes. CT scans of the liver take cross-sectional pictures of the abdomen.

The brain
A CT or MRI brain scan can be used to build up an accurate picture of the brain and can show areas of secondary breast cancer in the brain. You will lie on a couch with your head inside a scanner for these tests. They are completely painless and take about half an hour.

Detecting secondary breast cancer
All the tests mentioned above can help in detecting secondary breast cancer. However, they will not show up tiny groups of cancer cells. Tiny secondaries, known as micro-metastases, may lie dormant (inactive) and cause no symptoms at all. They may not be detected by the scans. Although tests can help in detecting signs of secondary cancer, in many cases it is the woman herself who will suspect something is wrong. As mentioned before, the symptoms of secondary breast cancer are similar to those of many other far more common conditions. A woman who has back pain, for example, may suspect that breast cancer cells have spread to her spine but, in fact, the pain is more likely to be caused by a simple muscle strain. The tests listed here can help to tell whether or not symptoms are due to secondary breast cancer. Sometimes scans may show a number of different secondaries, for example in several different areas of bone. In these situations, usually only a few of the secondaries will cause

18 any symptoms or give any problems. Many metastases stay inactive (silent) and do not cause problems.

Treating secondary breast cancer
Deciding on a treatment for secondary breast cancer
Although it can’t usually be cured, secondary breast cancer can usually be effectively controlled for a long time. The treatments available include hormonal therapy, chemotherapy, radiotherapy, bisphosphonates, and biological therapy. There are many different factors which doctors need to consider when deciding which may be the best treatment for you.

Where the cancer is
One of the most important factors will be which part of your body is affected by the secondary cancer cells.

Oestrogen receptors
Many breast cancer cells contain proteins known as oestrogen receptors. A cancer which contains a certain proportion of these proteins is described as oestrogen-receptor positive (ER+). About 6 out of 10 (60%) of breast cancers are oestrogen-receptor positive. The more oestrogen-receptors a cancer cell has, the more likely it is to be controlled by hormonal therapy. If a cancer cell has very few or no oestrogen-receptors, it is called an oestrogen-receptor negative (ER-) cancer. Hormonal therapies do not work for ER negative breast cancers. Oestrogen-receptors are known as ER because of the American spelling of oestrogen as estrogen.

Menopause
Whether or not you have had the menopause (change of life) is an important factor in deciding on treatment. Before the menopause, women have high levels of female hormones circulating in their bodies, whereas afterwards the levels of these hormones are lower. In women who have had their menopause, most of the female hormones are produced by converting androgens from the adrenal glands into oestrogen. This influences which hormonal treatment will control the secondary breast cancer cells best.

Growth factor receptors
Your cancer cells may also be tested to see if they have receptors for particular proteins, known as growth factors, on their surface. The cancer cells will be tested for a type of growth factor receptor known as HER2.

19 Women with a high number of HER2 receptors are known as being HER2-positive (HER2+), and they may benefit from treatment with a type of biological therapy called trastuzumab (Herceptin®). About 1 in 5 women (20%) have HER2+ breast cancer. These women may also benefit from a newer type of biological therapy called lapatinib (Tyverb®), which inhibits both the HER2 receptor, and another similar receptor called EGFR.

Other issues
Other factors your doctor will take into consideration include your age and general health, whether the secondary cancer is slow growing (low-grade) or more faster-growing (highgrade) and which treatment, if any, you have had in the past. The staging and grading of breast cancer is explained in our booklet about primary breast cancer. Chemotherapy drugs, hormonal therapies and biological therapy drugs are carried round the body in the bloodstream so can treat cancer cells wherever they are in the body. This is known as systemic therapy. Radiotherapy or surgery treats one area at a time and can be very helpful in treating individual areas of cancer, particularly in the bones or parts of the brain or the skin. Doctors try to treat women with secondary breast cancer with the treatment that is most likely to control the breast cancer and cause the fewest side effects.

Planning treatment for secondary breast cancer
How treatment is planned
Your doctor will recommend the best treatment for you after taking into account all the factors discussed in the previous section. Feel free to ask how the treatment works and how it may affect you. You can also ask why the doctor has chosen a particular treatment. You can discuss the effect that your treatment may have with your partner, family, doctor, nurses, or other therapists or counsellors if you wish. Many women find that being involved in the treatment decision helps them to have a sense of control over the cancer and their emotions. Some women find that their secondary breast cancer may be controlled for a time by one treatment, and they then need to change to a different treatment when the cancer starts to grow again. Sometimes several different treatments may be given, one after the other. Most doctors understand that you may want some time to think about their recommendations and any other treatment options. It can be hard to take in all the information about a treatment, especially if you have just learned that your cancer has spread. Not all women want to be involved in decisions about their treatment. You may feel you have enough on your mind in coming to terms with the spread of your cancer and that you don’t want to make decisions about your treatment. In this case, you shouldn't feel under any pressure to get fully involved in treatment decisions. Doctors are aware that individual women have different ways of coping with their cancer and will respect your wishes.

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Benefits and disadvantages of treatment
Many people are frightened at the idea of having cancer treatments, because of the side effects that can occur. Although many of the treatments can cause side effects, these can usually be controlled with medicines. Some people ask what would happen if they did not have any treatment. With secondary breast cancer, the aim of treatment is to control the cancer for as long as possible, leading to an improvement in symptoms and a good quality of life. Most women find that the treatment shrinks the cancer or stops it from growing. However, for some women the treatment will not have an effect on the cancer and they will get the side effects of the treatment with little benefit. Making decisions about treatment in these circumstances is always difficult, and you may want to discuss in detail with your doctor whether you wish to have treatment. If you choose not to, you can still be given supportive (palliative) care, with medicines to control any symptoms.

Giving consent
Before you have any treatment, your doctor will explain the aims of the treatment to you. They will usually ask you to sign a form saying that you give your permission (consent) for the hospital staff to give you the treatment. No medical treatment can be given without your consent, and before you are asked to sign the form you should be given full information about:
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the type and extent of the treatment you are advised to have the advantages and disadvantages of the treatment any other treatments that may be available any significant risks or side effects of the treatment. If you don't understand what you have been told, let the staff know straight away so that they can explain again. Some cancer treatments are complex, so it's not unusual for people to need repeated explanations. It is often a good idea to have a friend or relative with you when the treatment is explained, to help you remember the discussion more fully. You may also find it useful to write down a list of questions before you go to your appointment. Patients often feel that hospital staff are too busy to answer their questions, but it is important for you to be aware of how the treatment is likely to affect you. The staff should be willing to make time for you to ask questions. You can always ask for more time to decide about the treatment if you feel that you can’t make a decision when it is first explained to you. You are also free to choose not to have treatment. The staff can explain what may happen if you do not have it. It is essential to tell a doctor or the nurse in charge, so that they can record your decision in your medical notes. You do not have to give a reason for not wanting to have treatment, but it can be helpful to let the staff know your concerns so that they can give you the best advice.

Second opinion
Usually a number of cancer specialists work together as a team and they use national treatment guidelines to decide on the most suitable treatment for a patient. Even so, you may want to have another medical opinion. Either your specialist, or your GP, should be

21 willing to refer you to another specialist for a second opinion if you feel it will be helpful. The second opinion may cause a delay in the start of your treatment, so you and your doctor need to be confident that it will give you useful information. If you do go for a second opinion, it may be a good idea to take a friend or relative with you. You may find it useful to have a list of questions ready so that you can make sure your concerns are covered during the discussion

Hormonal therapies for secondary breast cancer
What is hormonal therapy?
Hormones are substances that occur naturally in the body, where they control the growth and activity of normal cells. Female hormones, particularly oestrogen, can encourage the growth of some breast cancer cells. Drugs which lower the level of oestrogen in the body, or that block oestrogen from attaching to the cancer cells, are used as treatment for some types of secondary breast cancer. Many women are prescribed tamoxifen (one type of hormonal therapy) after their initial cancer treatment. For these women, if the cancer comes back, a different type of hormonal therapy such as an aromatase inhibitor may be used. Aromatase inhibitors are becoming more widely used after primary breast cancer treatment, and in this situation tamoxifen or a different type of aromatase inhibitor may be used if the cancer comes back. Some women have several types of hormonal therapy – one after the other.

When it is used
Hormonal therapy only works for women who have oestrogen-receptor positive (ER+) cancers. They can be effective in controlling slow-growing cancers affecting the bones, the lymph glands, the fatty tissue under the skin or the skin itself. Hormonal therapy can also be used for secondary breast cancer in the liver and lung. One advantage of hormonal treatments is that they are easy to take and although side effects can occasionally be troublesome, they are rarely serious. Another advantage is that there are many different hormonal treatments available so if one doesn’t work, or stops working, others can be tried. You will usually need to take hormonal therapies for a few weeks before your doctors can tell if they are working. Many hormonal treatments are available and more are being developed all the time. The choice of hormonal therapy will depend upon whether you are pre or postmenopausal. Your doctor will be able to discuss which type of hormonal therapy treatment is best for you, based on all your relevant medical details.

Hormone therapy for postmenopausal women
After the menopause, oestrogen is produced mainly from male hormones (androgens) made by the adrenal glands. The androgens are changed into oestrogens in the fatty tissues of the body. Changing androgens into oestrogens is controlled by an enzyme called aromatase. Postmenopausal women may be offered hormonal treatment with either an anti-oestrogen (such as tamoxifen) or an aromatase inhibitor.

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Anti-oestrogens
Tamoxifen
Tamoxifen works by preventing oestrogen in the body from attaching to breast cancer cells and encouraging them to grow. It is used for both pre and postmenopausal women. Tamoxifen has been the most widely used hormonal therapy for breast cancer and it has been shown to be highly effective in reducing the chance of the cancer coming back. It can also be very effective in controlling secondary breast cancer for many women. Tamoxifen treatment can be continued for as long as it is effective in preventing the cancer cells from growing. It is available as tamoxifen and Nolvadex® and is taken as a daily tablet. The side effects may include:
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hot flushes and sweats a tendency to put on weight (although this may be due to other effects such as going into the menopause)  dryness of the vagina or an increased discharge from the vagina. For many women, these side effects are mild and may reduce over time. However, some women continue to find the side effects of tamoxifen are a problem. If this happens, it is helpful to discuss this with your doctor as there are sometimes ways of reducing the effects. We have a booklet on breast cancer and menopausal symptoms which has helpful tips. In postmenopausal women, tamoxifen can slightly increase the risk of womb cancer, blood clots in the leg or lung, and strokes. Although this sounds very frightening, these effects are very rare and are usually curable and treatable. The benefits of tamoxifen in treating breast cancer outweigh the risks of side effects for most women. Women who have secondary breast cancer in a bone may find that tamoxifen makes the bone pain worse for the first few days. This is known as tumour flare and it soon eases, but it is important to know that it might happen and that it is a temporary side effect of the drug. You should tell your doctor if it happens.

Fulvestrant (Faslodex®)
Fulvestrant is a newer anti-oestrogen drug that is only used to treat postmenopausal women. It is given as an injection once a month. It may be used after treatment with tamoxifen or aromatase inhibitors. It may also be used if women can’t take tablets or may forget to take tablets. The side effects are similar to tamoxifen.

Drugs that block oestrogen production
Aromatase inhibitors
Aromatase inhibitors work by blocking the production of oestrogen in the fatty tissues and the cancer itself, so they reduce the overall levels of oestrogen in the body and the cancer. Aromatase inhibitors are only used in postmenopausal women. Aromatase inhibitors can cause thinning of the bones (osteoporosis). Women who already have osteoporosis, or are at risk of it, should have their bone strength checked before and during treatment with an aromatase inhibitor.

Anastrozole (Arimidex®) is an aromatase inhibitor that is taken once a day as a tablet. Side effects include joint and muscle pain, vaginal dryness and nausea (feeling sick). It is slightly less likely to cause hot flushes than tamoxifen.

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Letrozole (Femara®) is also taken once a day as a tablet. Side effects are usually mild, and are similar to those of anastrozole. Exemestane (Aromasin®) is also taken as a tablet once a day. The side effects tend to be mild and are similar to anastrozole, but it may also cause diarrhoea in some women.

Progestogens
If the secondary breast cancer cells are not controlled by tamoxifen or aromatase inhibitors, artificial progesterone (progestogen) treatment may be used instead. Progesterone is a hormone that occurs naturally in women. Progestogens are stronger than progesterone and can be given as tablets or by injection into the muscle of the buttock. The commonest ones are megestrol acetate (Megace®) and medroxyprogesterone acetate (Farlutal®, Provera®). You may be given injections by your doctor or nurse. Progestogens tend to cause more side effects than aromatase inhibitors. Although some women may feel slightly sick, most women find that progestogens increase their appetite. This may make them put on some weight, particularly in the stomach area. Some women also notice mild muscle cramps or slight vaginal bleeding (spotting). Rarely, progestogens can cause breathlessness. If this happens you should let your doctor know.

Hormonal therapy for premenopausal women
In women who have not had their menopause (change of life), most of the oestrogen in the body is produced by the ovaries. A small amount of oestrogen is made by changing androgens (produced by the adrenal glands) into oestrogen. Premenopausal women may be offered hormonal treatment with the anti-oestrogen drug tamoxifen, or with a pituitary downregulator. They may also be offered treatment to stop the ovaries producing oestrogen, known as ovarian ablation.

Pituitary downregulators
Drugs known as pituitary downregulators reduce the production of oestrogen-stimulating hormones from the pituitary gland. This lowers the level of oestrogen in the body. Pituitary downregulators can be used to lower oestrogen levels in women who have not yet had their menopause. Stopping the ovaries from producing oestrogen is sometimes called ovarian suppression. Using a pituitary downregulator has the same effect as removing the ovaries or giving them radiotherapy, but the effect is reversible. As a result, many doctors now recommend these drugs, rather than removing the ovaries with surgery or giving radiotherapy to stop them working. They only work for oestrogen-positive breast cancers. The most commonly used pituitary downregulator for women with breast cancer is goserelin (Zoladex®). Goserelin brings on a temporary menopause, so many of its side effects are similar to those of the menopause and include hot flushes and sweating, joint pain, lowered sex drive, headaches and mood changes. Many younger women find the symptoms of an early menopause difficult to deal with. Although some menopausal symptoms can be uncomfortable, many can be effectively treated.

Ovarian ablation
In women who have not yet had the menopause, it is sometimes possible to stop the growth of their secondary breast cancer by stopping the ovaries from producing oestrogen. This is known as ovarian ablation, and can be done either by removing the ovaries with an

24 operation or by giving three or four radiotherapy treatments to the ovaries. In both cases, the ovaries stop producing female hormones, which brings on the menopause. When surgery is used, periods stop immediately. You will need to stay in hospital for 1–2 days. When radiotherapy is given to the ovaries, women usually have one more period, which may be heavy. Periods then stop completely. Contraception should be continued for three months after radiotherapy. Unlike pituitary downregulators, these treatments will mean that a woman will no longer be able to have children. This definite end to being able to have children can be very distressing to women already coping with secondary breast cancer. Healthcare staff will understand the emotional effect this treatment can have on women. You may find you want time to discuss the treatment with your partner, or someone close to you, before deciding to go ahead. You can also contact our cancer support service to talk through your feelings.

Chemotherapy for secondary breast cancer
Chemotherapy is the use of anti-cancer drugs, known as cytotoxic drugs, to destroy cancer cells. The drugs travel in the bloodstream to attack cancer cells throughout the body. Chemotherapy may be used if the secondary cancer is growing quickly or has affected your liver or lungs. It may also be used after hormonal therapy if the hormonal therapy is no longer controlling the cancer, or if it's known that the cancer will not respond to hormonal therapy.

The chemotherapy drugs used
Many different chemotherapy drugs are used to treat secondary breast cancer. The drugs can either be used on their own (single agents) or together (combination chemotherapy). Among the most commonly used chemotherapy treatments are:
   

AC (doxorubicin and cyclophosphamide) FEC (5-Fluorouracil, epirubicin and cyclophosphamide) CMF (cyclophosphamide, methotrexate and 5-fluorouracil) Docetaxel (Taxotere®) or paclitaxel (Taxol®). Vinorelbine (Navelbine®) or gemcitabine (Gemzar®) may also be used. A chemotherapy tablet called capecitabine (Xeloda®) is sometimes used, usually on its own but sometimes in combination with docetaxel. Your oncologist (cancer doctor) is the best person to decide which type of chemotherapy treatment is suitable for you, and can discuss the benefits and possible side effects with you. Our general information on chemotherapy discusses the treatment and its side effects in detail. There are also booklets on individual drugs and their side effects.

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How it is given
Chemotherapy is usually given as a series of treatments known as cycles. Drugs may be given weekly or every three weeks. Your complete treatment may last for several months. Although some chemotherapy drugs can be given as tablets or capsules (orally) to be taken at home, most are given by injection into a vein in the arm (intravenously). Chemotherapy into a vein is usually given in the chemotherapy department as a day case.

Side effects of chemotherapy
Chemotherapy can cause unpleasant side effects, but for women whose cancer has spread it can also make them feel better by relieving the symptoms of the cancer. The side effects can usually be well controlled with medicines. The main side effects are described below, along with information on controlling or reducing them.

Lowered resistance to infection
Chemotherapy can reduce the number of white blood cells produced by the bone marrow, making you more prone to infection. Contact your doctor or the hospital straightaway if:
 

your temperature goes above 38ºC (100.5ºF) you suddenly feel ill (even with a normal temperature). You will have a blood test before each cycle of chemotherapy to make sure that your cells have recovered. Occasionally it may be necessary to delay your treatment if your blood count is still low. Sometimes you may be given injections of a drug called G-CSF (granulocyte-colony stimulating factor). This is a type of protein that stimulates the bone marrow to produce more white blood cells. The injections are given under the skin (subcutaneously).

Bruising or bleeding
Chemotherapy can reduce the production of platelets, which help the blood to clot. Let your doctor know if you have any unexplained bruising or bleeding, such as nosebleeds, blood spots or rashes on the skin, or bleeding gums.

Anaemia (low number of red blood cells)
You may become anaemic. This may make you feel tired and breathless. Let your nurse or doctor know if this is a problem.

Nausea (feeling sick) and vomiting (being sick)
Some chemotherapy drugs can make you feel sick or even be sick. This can be helped by taking anti-sickness drugs (anti-emetics) which your doctor can prescribe.

Sore mouth
Some chemotherapy drugs can make your mouth sore and may cause small ulcers. Regular mouthwashes are important and the nurses will show you how to do these properly.

Poor appetite
If you don't feel like eating during treatment, you could try replacing some meals with nutritious drinks or a soft diet. Our booklet on diet and cancer has some useful tips on coping with eating problems.

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Hair loss
Hair loss is a common side effect of some chemotherapy drugs. This can be very distressing for some people. However, there are many ways of covering up hair loss, including wigs, hats or scarves. You may be entitled to a free wig from the NHS. Your doctor or the nurse looking after you will be able to arrange for you to see a wig specialist. If your hair falls out, it should start to grow back within 3–6 months of the end of treatment.

Tiredness
Chemotherapy affects people in different ways. Some people find they are able to lead a fairly normal life during their treatment, but many become very tired and have to take things much more slowly. Just do as much as you feel like and try not to overdo it. Although they may be hard to deal with at the time, these side effects will gradually disappear once your treatment is over.

Early menopause
Some women may find that chemotherapy makes them have their menopause early. See the page 'possible effects on your sex life' for more information.

Radiotherapy for secondary breast cancer
Radiotherapy uses high-energy rays to destroy cancer cells, while doing as little harm as possible to normal cells. It may be used for treating women with secondary breast cancer in one or more bones. It is also used to treat secondary cancer in the skin and lymph nodes. If secondary breast cancer cells have spread to parts of the brain, radiotherapy can often destroy the cancer cells and help to relieve any effects the brain tumour may cause.

Side effects of radiotherapy
Radiotherapy may cause some damage to normal cells surrounding the cancer. However, women with secondary breast cancer usually only need a short course of radiotherapy treatment with a relatively low dose of radiation, directed at specific areas of the body. Often, they have very few side effects. You may become tired more easily. If the treatment is given to the abdomen or pelvis you may feel slightly sick for a while (nauseous) or have diarrhoea. These effects can be reduced by medicines which your doctor can prescribe. If radiotherapy is used to treat secondary cancer cells affecting parts of the brain, it may make your hair fall out in the area in which it is given. The hair usually starts to grow back within a few months after the treatment has finished, although it may not grow back completely. This treatment can make you feel very sleepy or drowsy for a few weeks. Radiotherapy itself is not painful, but the position you have to lie in for the few minutes it takes to do the treatment may be uncomfortable. If this is the case, it may help to take a painkiller half an hour before your treatment. Radiotherapy does not make you radioactive and it is perfectly safe to be with other people, including children, after your treatment. If you have any questions about radiotherapy, you can ask your radiotherapist or the staff in the radiotherapy department. Our booklet on radiotherapy provides detailed information about this treatment and its side effects.

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Bisphosphonates for secondary breast cancer
Women who have secondary breast cancer affecting their bones may be treated with a group of drugs called bisphosphonates. Secondary cancer in a bone can cause it to become weakened. Bisphosphonates help to strengthen the bones and reduce the risk of fractures or breaks. The drugs can also help to relieve bone pain and may reduce the need for radiotherapy. Cancer in the bones can cause calcium to be lost from the bone and seep into the bloodstream. This is called hypercalcaemia and can cause symptoms such as feeling sick, tiredness and sometimes confusion. Bisphosphonates can help to reduce the amount of calcium in the blood and relieve symptoms of hypercalcaemia. Bisphosphonates can be given as tablets that are usually taken once or twice a day, or by drip (infusion) over a couple of hours as an outpatient. The main bisphosphonates used to treat secondary breast cancer are:
   

Clodronate (Bonefos®, Loron®), which is a tablet that is taken once or twice a day. Pamidronate (Aredia®), which is given as a drip lasting about an hour, every 3–4 weeks. Zoledronic acid (Zometa®), which is given as a drip lasting about 15 minutes, once a month. Ibandronate (Bondronat®), which can be given as a tablet once a day, or as a drip given over 15 minutes, every 3–4 weeks.

Side effects of bisphosphonates
Side effects are generally mild, but can include sickness (nausea), headaches, and flu-like symptoms such as chills and muscle aches. Bisphosphonate tablets can sometimes cause diarrhoea, constipation and heartburn. When given by a drip (infusion) the side effects can include a temporary increase in bone pain, known as tumour flare. If this happens your doctor can prescribe painkillers until the side effect wears off. Very rarely bisphosphonates can cause jaw problems, so it is important to let your dentist know if you are being treated with bisphosphonates. You should also tell your doctor if you develop any problems with your teeth. Bisphosphonates are usually given for as long as they are working. If the bisphosphonate is given to reduce high levels of calcium it may only be given when it’s needed.

Biological therapies for secondary breast cancer
Biological therapies are drugs that recognise and lock onto specific proteins (receptors) that are present in particular cancer cells. There are different types of biological therapies that work in slightly different ways.

Trastuzumab (Herceptin®)
Trastuzumab (also known as Herceptin®) is a type of drug known as a monoclonal antibody. It works by binding to particular proteins – HER2 receptors – on the surface of breast cancer cells. This slows down or stops the cancer cells dividing.

28 Herceptin® can only control a breast cancer if the breast cancer cells have a large number of the HER2 receptors on their surface (see treatment overview). Around 1 in 5 (20%) of women will have a large number of receptors − this is known as being HER2-positive. Your doctor may have your cancer cells tested for HER2 protein. The National Institute for Health and Clinical Excellence (NICE), recommend that women with secondary (advanced) breast cancer can be given:

Herceptin® in combination with paclitaxel (Taxol®) chemotherapy. This combination is only given if you haven’t previously been treated with chemotherapy for advanced breast cancer, and if you aren’t suitable to be treated with chemotherapy drugs known as anthracyclines, such as epirubicin and doxorubicin.  Herceptin® on its own if you have already had at least two different courses of chemotherapy for advanced breast cancer, including an anthracycline chemotherapy and a taxane chemotherapy, such as paclitaxel (Taxol) or docetaxel (Taxotere®). Hormonal therapy should also have been tried if appropriate. Herceptin® is usually given once every three weeks. It is given as a drip (infusion) into a fine tube (cannula) inserted into a vein.

Lapatinib (Tyverb®)
Lapatinib is a newer type of biological therapy known as a growth inhibitor that is effective against cancers that have large numbers of HER2 receptors on the surface. Growth inhibitors interfere with the way that cancer cells 'communicate' with each other and can affect the cancer’s ability to develop. Lapatinib is a tablet. It is given in combination with the chemotherapy drug capecitabine (Xeloda®), which is also a tablet. The National Institute for Health and Clinical Excellence (NICE) has not yet recommended the use of lapatinib in the treatment of advanced breast cancer. As a result it may not be possible to get the drug on the NHS.

Research - clinical trials for secondary breast cancer
Cancer research trials are carried out to try to find new and better treatments for cancer. Trials that are carried out on patients are known as clinical trials. Clinical trials may be carried out to: test new treatments, such as new chemotherapy drugs, gene therapy or cancer vaccines  look at new combinations of existing treatments, or change the way they are given, to make them more effective or to reduce side effects  compare the effectiveness of drugs used to control symptoms  find out how cancer treatments work  see which treatments are the most cost-effective. Trials are the only reliable way to find out if a different operation, type of chemotherapy, radiotherapy, or other treatment is better than what is already available.

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Taking part in a trial
You may be asked to take part in a treatment research trial. There can be many benefits in doing this. Trials help to improve knowledge about cancer and develop new treatments. You will also be carefully monitored during and after the study. Usually, several hospitals around the country take part in these trials. It is important to bear in mind that some treatments that look promising at first are often later found not to be as good as existing treatments, or to have side effects that outweigh the benefits. If you decide not to take part in a trial your decision will be respected and you do not have to give a reason. There will be no change in the way that you are treated by the hospital staff and you will be offered the standard treatment for your situation.

Blood and tumour samples
Many blood samples and bone marrow or tumour biopsies may be taken to help make the right diagnosis. You may be asked for your permission to use some of your samples for research into cancer. If you are taking part in a trial you may also be asked to give other samples which may be frozen and stored for future use, when new research techniques become available. These samples will have your name removed from them so you can’t be identified. The research may be carried out at the hospital where you are treated, or it may be at another hospital. This type of research takes a long time and results may not be available for many years. The samples will, however, be used to increase knowledge about the causes of cancer and its treatment. This research will, hopefully, improve the outlook for future patients.

Living with secondary breast cancer
Controlling the symptoms of secondary breast cancer
Secondary breast cancer may cause unpleasant symptoms. Sometimes the symptoms can be relieved by treating the cancer itself. Some treatments can work very quickly and you may notice an improvement within a few days. At other times treatments may take longer to work and it can be a couple of weeks before you begin to feel their full benefits. Apart from treating the actual cancer there are many other ways to help relieve symptoms. This page gives ideas on what may be helpful.

Pain
There are different types of painkillers which vary both in their strength and in the way they work. Some painkillers are better for certain types of pain and some suit certain women better than others. If you are taking painkillers it is better to take them regularly, even if you are not in pain when the next dose is due. This is because painkillers not only relieve pain at the time, but work to prevent the pain coming back. Painkillers can be taken as tablets or liquids by mouth, or as suppositories, which are inserted into the back passage. Some are also given as injections under the skin. It is important to tell your doctor if the painkillers you are taking aren't easing your pain. Your doctor can either change the dose or change the painkillers to one that will be more effective for you.

30 Pain caused by secondary breast cancer cells in a bone can be severe. Radiotherapy is very good at easing this type of pain, but can take 2–3 weeks to work. Often, drugs containing morphine are needed while the treatment is being planned or while you are waiting for the radiotherapy to work. Some women find that morphine makes them feel drowsy when they first start taking it, but this usually only lasts for a day or so. Taking morphine may make some women feel sick at first and they may need an anti-sickness tablet (anti-emetic) prescribed by the doctor for the first few doses. Morphine also commonly causes constipation. Besides painkillers, a number of other drugs can be very helpful in relieving pain. If the pain is due to secondary breast cancer cells in a bone, drugs known as non-steroidal antiinflammatory drugs (NSAIDs) can be very helpful. These drugs are often referred to as anti-inflammatories and have few side effects other than sometimes irritating the lining of the stomach. Drugs known as bisphosphonates can also help to relieve bone pain. They may be given into a vein (intravenously) in the outpatient department every 3–4 weeks. Some bisphosphonates can be taken as tablets, but some of these must be taken on an empty stomach an hour before food and may cause stomach upsets. Bisphosphonates can help to strengthen bones and lower the risk of fractures. They can also reduce high levels of calcium in the blood (hypercalcaemia) as well as reducing pain. Your doctor can also prescribe sleeping tablets, or a mild relaxant, which may be particularly helpful if you are having trouble sleeping because of the pain. Anxiety and lack of sleep can make pain worse. For this reason some women also find that practising relaxation techniques helps them feel more comfortable. Heat and gentle massage can also help ease aches and pains. A good long soak in a warm bath, a well protected hot-water bottle, and some baby oil or lotion massaged into the skin can often make a difference. Being in pain can make you feel very low and it is important to let your doctor know if the drugs prescribed aren't working. It is also important to keep in mind that there are many different ways in which pain can be controlled. There are also special NHS pain clinics run by doctors and nurses expert in treating pain. You can ask your doctor to refer you to a pain clinic if your pain is not controlled by any of the above methods.

Breathing problems
Breathing problems may happen either if the secondary breast cancer spreads to the linings on the outside of the lungs (the pleura) or if the cancer has spread to the lungs themselves. Cancer cells can irritate the sensitive pleura and cause a pocket of fluid to build up (known as a pleural effusion). This fluid can press on the lung, making it harder to expand the lungs fully, and so cause breathlessness. Pleural effusions can be treated by passing a narrow tube into the chest, between the ribs, to drain off the fluid. This is done by first numbing the area with a local anaesthetic, then passing the tube through the skin and betweenhe ribs to reach the outside of the lungs. The tube is stitched securely to the skin on the chest and the other end is connected to a drainage bottle. The tube may be left in overnight, or longer, to drain off as much fluid as possible. This may mean you need to spend a few days in hospital.

31 Once the pleural effusion has been drained the breathlessness will ease. The effusions can be drained as often as necessary and sometimes a procedure called pleurodesis can be done. This sticks the two linings of the lung together so that fluid cannot collect there. If the cancer cells have spread to the tissue of the lungs, morphine can be used to relieve the breathlessness. It can be very frightening to feel breathless, and anxiety and fear can make breathlessness worse. Morphine makes people feel relaxed, which also helps to control the breathing rate. It is less effort for your lungs to expand if you are upright rather than lying completely flat. Using extra pillows in bed or getting a large triangular support pillow (which can be bought from most department stores) can help you stay more upright when you are in bed or resting on a sofa. If treatment reduces the number of cancer cells, this will also help with breathlessness.

Feeling sick (nausea)
The most common cause of nausea for women with secondary breast cancer is the treatment − radiotherapy, chemotherapy and painkillers may all make you feel sick at some time. However, sickness caused by treatment is usually only a temporary problem and eases off completely once the treatment is over. Occasionally, nausea may be caused by the secondary breast cancer cells themselves, especially if they affect the liver or cause high levels of calcium in the blood (hypercalcaemia). There are many anti-sickness drugs (anti-emetics) available. They work in different ways, so let your doctor know if the anti-emetic you are taking is not working completely, as another type can be tried. Most anti-sickness medicines take about 20–30 minutes to start to work properly. Many are now available as suppositories, which are inserted into the back passage, and this can be a good way of taking the drug if you feel too sick to swallow a tablet. Some women find that relaxation exercises help to ease their nausea. Doing something you enjoy, such as finding time to relax with a magazine, book, favourite CD or TV programme, can help take your mind off feeling sick.

Tiredness
You may find that you easily become very tired and that your body is no longer as strong and reliable as it once was. This can be due to the cancer itself or because of the side effects of treatment. It may feel as though you have no strength and everything is more of an effort. It can be difficult to adjust if tiredness makes it difficult for you to drive or take part in sports, or if you have to walk more slowly than before. It will take time for you to get used to these changes and to accept having to rest, or not being able to do activities that you once took for granted. If you have little energy, save it for the things you really want to do. Very often, re-organising your daily activities can be helpful. It can also help if you set aside a time to rest every day. Practical aids such as wheelchairs can also be useful. You may feel that by using a walking stick, frame or wheelchair you are 'giving in' to your illness, but they can greatly improve your life and allow you to move around more easily than you could on your own.

32 Sometimes the cancer or the treatment can cause anaemia, which can lead to tiredness. If this happens you can be given a blood transfusion, which can quickly give you more energy and reduce the tiredness.

Constipation
Constipation can be caused by strong painkillers or by too much calcium in your blood (caused by secondary breast cancer cells affecting a bone). Constipation can also occur if treatment has made you lose your appetite and you are not eating as much as before. Having fibre in your diet, drinking plenty of fluids and walking will help, but you may also need to take a medicine to stimulate the bowel (a laxative). Your doctor will be able to prescribe a suitable one for you. Your nurses can also advise you on ways to prevent or relieve constipation.

Difficulty in sleeping
It is not uncommon for women with secondary breast cancer to have difficulty sleeping. There can be many reasons for this. For example, pain may keep you awake, and it can be difficult to sleep when you have a lot on your mind. Sleeping tablets are often very effective. You can also try some home remedies for sleeplessness − hot milky drinks before bed, a glass of spirits in the evening, warm baths with soothing bath oils, or a relaxing body massage to relieve muscle tension.

Swelling of the arm (lymphoedema)
The best treatment for swelling of the arm (lymphoedema) is a programme of exercise, massage, skin care and a properly fitted support sleeve or bandage. The aim of treatment is to control the swelling and prevent it from getting worse. It is only occasionally possible to reverse swelling caused by damage to the lymph nodes. You can be referred to a lymphoedema clinic for specialist treatment from a breast care nurse or physiotherapist. Good care of the skin on the arm is very important if you have lymphoedema. Even small cracks or cuts can allow germs to get in, which may lead to infection in the whole arm. Repeated infections can further weaken the lymphatic system in the arm and lead to more swelling. You can reduce your risk of infection by:
     

wearing gloves for gardening and washing up avoiding playing with animals that may scratch treating small grazes and cuts with antiseptic and keeping them clean until they heal protecting your arm from sunburn using an electric razor or hair removing cream instead of shaving your underarm hair moisturising your skin every day to keep it supple. You may need to wear a support (or compression) sleeve or bandage to prevent fluid building up in the arm and support the muscles. The support sleeves are worn all day and taken off just before going to bed. Most women who have lymphoedema need to wear a support sleeve every day to keep the swelling down.

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High calcium levels in the blood (hypercalcaemia)
Secondary breast cancer cells affecting a bone may make extra calcium pass out of the damaged bone and into the blood. High levels of calcium in the blood can make you feel extremely tired and thirsty, and pass lots of urine. Hypercalcaemia can also make you feel sick and some people become irritable and confused. You may need to spend a few days in hospital for treatment. Your doctor may ask you to start drinking plenty of water and will put up a drip to give you extra fluids into a vein in your arm (an intravenous infusion). This will increase the fluid content of your blood, encouraging the kidneys to take out the extra calcium from the blood and flush it from the body in urine. Your doctor will give you drugs known as bisphosphonates to speed up the process. These drugs are given as a drip over 15 minutes to an hour, and can be repeated every few weeks. They are usually effective at getting the calcium levels back to normal. You should feel much better within a couple of days.

Strengthening a weakened bone
If a secondary breast cancer has weakened a bone so much that there is a risk of it breaking, you may need an operation to strengthen the bone. This is done under a general anaesthetic. The surgeon will put a metal pin into the centre of the bone and may also fix a metal plate to the bone. This holds the bone firm so that it will not break. The pin and plate will stay in permanently to protect the bone. This is mainly used for the long bones in the legs but is sometimes used for secondaries in other bones, such as the spine. If your hip is affected, the hip joint may be replaced. You will need to stay in hospital for a week or longer after the operation so that you can recover fully. However, most women are able to get up and start walking a couple of days after the surgery. An operation to put in a pin and plate may be done before any planned radiotherapy treatment, if there is a chance the bone may break before the treatment starts. When a bone is weakened but doctors feel it is not likely to fracture, bisphosphonates may be used to help strengthen the bone and prevent it breaking.

Headaches and feeling sick caused by brain secondaries
Secondary breast cancer cells in the brain may cause headaches and sickness, as the cancer cells can cause pressure to build up within the skull. Steroids, such as dexamethasone, can be used to reduce the inflammation and so relieve symptoms. Steroids are usually given in short courses and have few side effects, but if taken for long periods they can cause weight gain, a puffy face, muscle weakness and thinning of the skin. A short course of radiotherapy treatment may also be used to treat secondary cancer in the brain.

Complementary therapies for dealing with secondary breast cancer
Many women find that complementary therapies or practices can help them to feel stronger and more confident in dealing with secondary breast cancer. They can be used alongside conventional treatments and medicines. Complementary therapies can help to improve quality of life and wellbeing and can sometimes help to reduce symptoms. Some complementary therapies, such as meditation or visualisation, can be done by the person with cancer themselves and can reduce anxiety.

34 Other therapies such as gentle massage can be carried out by relatives or carers and can help them to support the person. Physical contact and touch can be among the most powerful forms of support for people who are faced with uncertainty, fear or pain, whether emotional or physical. Touching someone gently can express how much you care about them. Many hospices and hospitals offer complementary therapies alongside conventional care. These may include:
    

aromatherapy colour and sound therapy massage or reflexology relaxation, visualisation or guided imagery techniques acupuncture.

Coping with secondary breast cancer
Secondary breast cancer or its treatment may leave you feeling tired and depressed. You may feel as though you have less energy. The cancer itself may cause some physical effects such as tiredness or feeling sick. Having treatment can be a very difficult time and it can take a while to recover, both physically and emotionally. Treatment may last for months and you may not get the chance to get back to normal until your treatment is complete. This section gives ideas on how to build up strength and energy.

Diet
Your body needs extra nutrients and calories during and after treatment for cancer. It is important to try to keep eating well even if you haven't got much of an appetite. Eat little and often. Make the most of ready-prepared meals for you and your family while you haven't much appetite or energy for cooking. If possible, get someone else to prepare your meals.

Rest and activity
Both rest and activity are necessary for good health and it is important to find the right balance between the two. Your body will tell you when you need to rest, but it is important not to stop doing things completely or to overstretch yourself. When you are not well or having treatment the body uses up a lot more energy than usual. You need rest to give your body time to repair itself. When you do feel like doing things, it is important not to try to do too much. Start by setting yourself goals − perhaps walking around the garden, or spending a few hours a week at work. Try to concentrate on what you can do.

Staying in hospital
It may take some time to recover from treatment for secondary breast cancer. For some women treatment may involve a stay in hospital. Being inactive like this for even a few days may leave you feeling physically weaker and perhaps nervous about how you will manage when you go home. In this case it may help to spend some time with the hospital physiotherapist and occupational therapist.

35 The physiotherapist can design a programme of exercise for you and work with you to build up your muscle strength and your confidence. The occupational therapist can help you regain the confidence to manage at home and can offer practical advice.

Going home
Before you go home, you and your family may wish to talk to a hospital palliative care nurse (sometimes called a Macmillan nurse), the ward manager or hospital social worker. They can help with any immediate problems, including any financial worries you may have. Your hospital doctor or discharge planning team can ring your GP's surgery to let them know you are going home. They should also tell them about your condition and any treatment that needs to be continued at home. The hospital nurse can refer you to a community palliative care nurse (Macmillan nurse) to continue your care at home.

Work
It can be hard to judge the best time to return to work. Your decision if and when to go back is likely to depend mainly on your type of work and whether your income is affected. It is important to do what is right for you. Although it is not usually possible to cure secondary cancer, many women can lead full and active lives for months or years. Getting back into your normal routine can be very helpful and you may want to return to work as soon as possible. Many women find that going back to work as soon as they feel strong enough gives an opportunity to forget their worries, as they become involved with their job and colleagues again. Talk to your employer about the situation − it may be possible for you to work part-time or job-share. On the other hand it can take a long time to recover fully from treatment for secondary breast cancer and it may be many months before you feel ready to return to work. Don't feel pressurised into taking on too much, too soon. Your consultant or GP will be able to help you decide when and if you should return to work.

Help at home when you have secondary breast cancer
After some treatments (though not normally hormonal therapy and bisphosphonates) you will need time to recover and much of this may be at home. You may be a very independent person and not want people around to look after you; but at the same time, for a while, you may not be able to do all the things you would usually do in your home.

Friends and family
For many women, the people who help most are family, friends and neighbours. Having them to help with practical tasks as well as support you emotionally can speed up your recovery. However, resting at home can be difficult, especially if you have a young family who may not fully understand the situation. It may also be hard to ignore the housework. Don't feel embarrassed about accepting offers of help or even asking people to help. Friends and neighbours sometimes prefer to be asked to help in a specific way − getting some groceries or doing the vacuuming.

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Other sources of help
If you live alone, home-help and meals-on-wheels may be able to help you. They can be arranged through a social worker, your GP or your palliative care nurse (sometimes called a Macmillan nurse). If you have been assessed as having a need for social services, you may be entitled to get direct payments from your local authority. This means that you are given payments to organise social services yourself, rather than the local social services organising and paying for them. You can get information about direct payments from the Department of Health website at www.dh.gov.uk or from your local social security office. If you are not eligible, it may be an idea to pay someone for a few hours each week to help with heavier tasks like shopping and cleaning. In some parts of the country there are local authorities and services available to help out in the home, particularly if you live alone or have young children. The social workers in your area will be the best source of advice about what is available locally. A social worker will also be the best person to help if you need financial advice. Many support groups offer practical help – we can give you details of those in your area. Your local Citizens Advice Bureau (CAB) can give advice on sources of practical and financial support.

Hospices
Hospices provide day care services for people with cancer and can often give short-term care or respite care, as well as care for people in the last few weeks of their life. Hospices specialise in the control of pain and other symptoms and in supporting the person with cancer and their family. People can go into a hospice for a short time to have any pain or other symptoms controlled before going home again. Hospices are not just places where people go to die, although many people think that this is the case. Many hospices are purpose-built in pleasant grounds and are designed to be attractive and comfortable. Many have kitchens, sitting rooms and accommodation for relatives. Activities are provided for people who are well enough to take part. They are smaller and quieter than hospitals and work at a gentler pace. Accommodation and care in a hospice is always free of charge. Some are set up by the NHS and others are funded by charities. Sometimes there is a waiting list, but this is not usually longer than a few weeks. Many hospices also have nurses who go out to visit people in their own homes, and day care centres for people who are living at home.

Nursing services
Whether you have been in hospital or not, you may benefit from a visit from a district nurse, a palliative care or Marie Curie nurse, or a hospice nurse. The hospital nurses or your GP can make the arrangements for you. It is also possible to have a private nurse at home, but this can be expensive. Nursing agencies are listed in your local phone book. Our booklet on caring for someone with advanced cancer gives more information on services available to support you.

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Possible effects of secondary breast cancer on your sex life
Many women find that secondary breast cancer has an effect on their sex lives. This can be due to the physical effects of the cancer or its treatment, or because of the emotions or the feelings that cancer can cause. Our booklet on sexuality has detailed discussion about all aspects of cancer and sexuality which you may find helpful.

Early menopause
An early menopause can be caused by chemotherapy or hormonal therapy. This can lead to uncomfortable menopausal symptoms, such as hot flushes and dryness of the vagina. As the early menopause has been caused by treatment, any symptoms may appear suddenly and will be more severe than those for women who have a natural menopause. This can be very distressing. Some of the most common effects are discussed below.

Hot flushes
Hot flushes often happen at night and can make you feel very uncomfortable. Although they don't have a direct physical effect on sex, if you are feeling irritable and uncomfortable you will obviously feel less like making love. You may feel more comfortable if you wear loose cotton nightclothes, or sleep naked, and have cotton sheets or a light duvet on the bed. Leaving a window open in the bedroom at night may also help you to feel cooler. This distressing symptom will pass gradually as your body becomes used to the lack of oestrogen.

Lower sex drive
Changes in hormone levels can reduce your sex drive. It is important to let your partner know if you do not feel interested in sexual activity. It can help to explain how you feel so that they do not feel rejected. You can also suggest what you are happy to offer as an alternative – such as, 'I don't want to have sex but would love to give you a cuddle'. If there is tension between you, you may find it helpful to get support from a counsellor who specialises in offering help in these circumstances.

Tiredness
If you have fatigue (continual tiredness that is not relieved by rest) and do not have much energy it might help to make love differently. Less energetic positioning, where your weight is well supported, can reduce strain. You may prefer shorter sexual contact rather than longer sessions. These are things you can talk about together. You could try identifying times when you feel most energetic and set aside some of this time for lovemaking.

Vaginal dryness
You may have vaginal dryness due to lower levels of oestrogen. This means that the vagina cannot produce enough moisture when you are sexually aroused. It may make intercourse difficult and uncomfortable. This can be helped by a number of creams and gels that can be applied directly into the vagina. Replens® is a non-hormonal cream available from most chemists. It is applied 2–3

38 times per week and works for about 72 hours at a time. The cream binds to the vaginal wall and the water held within it re-hydrates the cells and boosts the blood flow in the vagina. Ovestin®, Ortho-gynest®, and Premarin® are available on prescription from your doctor. They contain a very small amount of oestrogen and can be used as a cream or a pessary. The effect in the vagina is short lasting. Vagifem®, also available on prescription, is a tablet that can be inserted into the vagina up to twice a week. It also contains a small amount of oestrogen. Although the amount of oestrogen in these products is very small there is a small risk that they may increase the amount of oestrogen in the body. As a result, women who are taking aromatase inhibitors (such as Arimidex®) should talk to their doctor before using hormonal vaginal creams, gels and pessaries. Water based lubricants such as KY Jelly, Senselle®, Astroglide® and Sylk® which can be brought at a chemist, can help to increase moisture levels, making sex easier. Some women prefer to use glycerine: it is cheap and not embarrassing to buy as it has many uses.

Hormone replacement therapy
Unfortunately, since HRT contains oestrogen, which could theoretically encourage the growth of breast cancer cells, doctors generally do not recommend women with secondary breast cancer to have this treatment, although it may be safe for women with oestrogenreceptor negative cancer. Studies have shown that it is not generally safe to take HRT if you have a cancer that has oestrogen receptors (ER) on the surface (ER positive). Drugs, such as progesterone tablets or a type of anti-depressant called venlafaxine (Efexor®), can help relieve hot flushes and are safe for women with secondary breast cancer to take. Some complementary therapies such as acupuncture or homeopathic remedies can be helpful. You could ask your doctor about medicines which may help.

Infertility
Loss of their ability to have children causes a great deal of distress to many women. They may grieve deeply for the loss of their chance to have a child or to have more children. Women may also feel less feminine. Sometimes these emotions are too strong to cope with alone. It may help to talk over your feelings with your doctor or specialist nurse. A trained counsellor can be invaluable in helping you work through emotions which threaten to get too much for you. Your partner may also have feelings of sadness and may benefit from being included in such discussions. They may want to see a counsellor on their own. Our cancer information and support service can tell you more about counselling and let you know about services in your area.

Feelings and emotions
Anxiety can make it harder for you to get aroused − worry can push everything else, including sex, to the back of your mind.

Communication
Communication is an important part of a healthy sexual relationship. It may help to overcome sexual problems if you talk about your concerns with your partner and plan ways to cope with any problems which will suit both of you.

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Symptoms
Controlling symptoms is important. Anti-sickness drugs and painkillers are very effective and you could try to plan your doses so that they have a maximum effect when you most like to make love. The most important thing to remember is that there is no medical reason for you to stop making love if you have secondary breast cancer. Cancer is not contagious and sex will not make your cancer worse.

Living with and after cancer
Emotional effects
Information on the emotions you might experience as a result of your cancer diagnosis, ways that you might manage them and other sources of support.

Relationships and communication
Advice on how to talk to other people, talking to children, relationships and sexuality.

Note: JASCAP has booklets on each of the above subjects.

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Questions you might like to ask your doctor or surgeon

You can fill this in before you see the doctor or surgeon, and then use it to remind yourself of the questions you want to ask, and the answers you receive.

1.

_______________________________________

Answer _______________________________________ _____________________________________________ 2. Answer _______________________________________ _______________________________________

_____________________________________________ 3. Answer _______________________________________ _______________________________________

_____________________________________________ 4. Answer _______________________________________ _______________________________________

_____________________________________________ 5. Answer _______________________________________ _______________________________________

_____________________________________________

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JASCAP : We need your help
We hope that you found this booklet useful.

To help other patients and their families we need and intend to extend our Patient Information Services in many ways.

Our Trust depends on voluntary donations. Please send your donation by Cheque or D/D payable in Mumbai in favour of “JASCAP”.

Note for Reader
This JASCAP booklet is not designed to provide medical advice or professional services and is intended to be for educational use only. The information provided through JASCAP is not a substitute for professional care and should not be used for diagnosing or treating a health problem or a disease. If you have, or suspect you may have, a health problem you should consult your doctor.

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JASCAP
JEET ASSOCIATION FOR SUPPORT TO CANCER PATIENTS, C/O ABHAY BHAGAT & CO., OFFICE NO.4, “SHILPA”, 7TH. ROAD, PRABHAT COLONY, SANTACRUZ (East), MUMBAI - 400 055. PHONE: 91-22-2617 7543 & 91-22-2616 0007 FAX: 91-22-2618 6162, e-mail: pkrjascap@gmail.com, abhay@abhaybhagat.com

AHMEDABAD:

MR. D.K.GOSWAMY, 1002, LABH, SHUKAN TOWER, NEAR JUDGES’ BUNGALOWS, AHMEDABAD - 380 015. PHONE : 91-79-6522 4287. Mob : 93270 10529 e-mail : dkgoswamy@sify.com

BANGALORE:

MS. SUPRIYA GOPI, “KSHITIJ”, 455, I CROSS, HAL III STAGE, BANGALORE – 560 075 PHONE : 91-80-2528 0309 . e-mail : supriyakgopi@yahoo.co.in

HYDERABAD:

MS. SUCHITA DINAKER & DR. M. DINAKER, M.D., FLAT NO. G4, 1ST. FLOOR, “STERLING ELEGANZA”, STREET NO.5, NEHRUNAGAR, SECUNDERABAD – 500 026. PHONE : 91-40-2780 7295. e-mail : suchitadinaker@yahoo.co.in