A practical guide to understanding cancer. Understanding. breast cancer

Transcription

1 A practical guide to understanding cancer Understanding secondary breast cancer

2 Contents Contents About this booklet 4 What is cancer? 6 The lymphatic system 8 Secondary breast cancer 9 Symptoms 11 Diagnosing secondary breast cancer 16 Receptors 23 Treatment overview 25 Hormonal therapies 32 Radiotherapy 46 Bone-strengthening drugs 50 Targeted therapies 53 Steroids 57 Surgery 59 Research clinical trials 62 Follow-up 64 Living with secondary breast cancer 65 Sex life 68 Early menopause and menopausal symptoms 70 Controlling symptoms 72 Your feelings 78 1

3 Understanding secondary breast cancer If you are a relative or friend 82 Talking to children 84 Who can help? 85 Financial help and benefits 86 Work 89 How we can help you 90 Other useful organisations 94 Further resources 101 Your notes and questions 105 2

4 Contents 3

5 Understanding secondary breast cancer About this booklet This booklet is for women with secondary breast cancer. This is breast cancer that has spread to another part of the body. We explain the different treatment options and suggest some ways you can help yourself. We have a separate booklet called Understanding breast cancer which is about early or primary breast cancer. Men with breast cancer may find it helpful to read our booklet Understanding breast cancer in men. It includes information about treating early and advanced breast cancer. Secondary breast cancer can often be effectively controlled using different treatments, sometimes for many years. Women are living for longer as a result of improved and newer treatments. We hope this booklet answers some of your questions and helps you deal with some of the feelings you may have. We ve also listed other sources of support and information, which we hope you ll find useful. Throughout this booklet we ve included some comments from women affected by secondary breast cancer, which you might find helpful. All quotes are from the website healthtalkonline.org. Some names have been changed. We can t advise you about the best treatment for you. This information can only come from your doctor, who knows your full medical history. 4

6 About this booklet If you d like to discuss this information, call the Macmillan Support Line free on , Monday Friday, 9am 8pm. If you re hard of hearing you can use textphone , or Text Relay. For non-english speakers, interpreters are available. Alternatively, visit macmillan.org.uk See pages for some useful addresses and helpful books and websites. On page 105 there is space for you to write down questions for your doctor or nurse. If you find this booklet helpful, you could pass it on to your family and friends. They may also want information to help them support you. 5

7 Understanding 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. Cancer isn t a single 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. Although cells in different parts of the body may look different and work in different ways, most repair and reproduce themselves in the same way. Normally, cells divide in an orderly and controlled way. But if for some reason the process gets out of control, the cells carry on dividing, and develop into a lump called a tumour. Tumours can be either benign (non-cancerous) or malignant (cancerous). Doctors can tell whether a tumour is benign or malignant by removing a piece of tissue (biopsy) and examining a small sample of cells under a microscope. Normal cells Cells forming a tumour 6

8 What is cancer? In a benign tumour, the cells do not spread to other parts of the body and so are not cancerous. However, they may carry on growing at the original site, and may cause a problem by pressing on surrounding organs. In a malignant tumour, the cancer cells have the ability to spread beyond the original area of the body. If the tumour is left untreated, it may spread into 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. 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 a metastasis. 7

9 Understanding secondary breast cancer The lymphatic system The lymphatic system is part of the immune system the body s natural defence against infection and disease. It s made up of organs such as bone marrow, the thymus, the spleen, and lymph nodes. The lymph nodes throughout the body are connected by a network of tiny lymphatic tubes (ducts). The lymphatic system has two main roles: it helps to protect the body from infection and it drains fluid from the tissues. Neck (cervical) lymph nodes Thymus Armpit (axillary) lymph nodes Diaphragm Spleen Groin (inguinal) lymph nodes The lymphatic system 8

10 Secondary breast cancer Secondary breast cancer Secondary breast cancer is breast cancer that has spread from the breast to other parts of the body. Breast cancer starts as a lump in the breast and this is known as primary breast cancer. In many women primary breast cancer does not come back after treatment. However, in some women cancer cells break away from the primary breast cancer and spread to other parts of the body through the bloodstream or lymphatic system (see opposite). These cancer cells go on dividing and form a new cancer, known as a secondary cancer or metastasis. The secondary cancer is made up of breast cancer cells. This means that, for example, a secondary breast cancer in the liver behaves as and is treated as breast cancer, not a primary liver cancer. Secondary breast cancer may be diagnosed years after primary breast cancer. Very occasionally, for some women, secondary breast cancer is their first diagnosis of breast cancer. Where breast cancer may spread to If breast cancer spreads, the most common places it can spread to are the bones, lungs, liver, or occasionally the brain. This does not mean that secondary breast cancer will spread to all of these places. Less commonly, breast cancer can spread to other parts of the body, such as the bone marrow or ovaries. You can call our cancer support specialists on for more information on this. 9

11 Understanding secondary breast cancer Local and regional recurrence Breast cancer that comes back in the skin of the breast where the cancer was first removed, or in the operation scar, is known as a local recurrence. Breast cancer may also come back in the lymph nodes in the armpit, behind the breast bone, or in the lower part of the neck. This is called regional recurrence. If cancer cells are blocking the lymph nodes in the armpit, fluid can build up in the arm causing swelling known as lymphoedema (see page 75). Local and regional recurrences are not secondary breast cancer, as the cancer has not spread to another organ in the body. These recurrences are usually less serious than secondary breast cancer. But you will usually have tests to find out if the cancer has spread to other parts of the body. A local or regional recurrence that hasn t spread anywhere else in the body may be treated with surgery, if possible, or with radiotherapy. Your treatment will depend on the treatments you received to remove and treat the primary breast cancer. You can call our cancer support specialists on for more information. 10

12 Symptoms Symptoms The symptoms of secondary breast cancer depend on the part of the body the cancer has spread to. This means every woman s experience is different. You may also have some general symptoms. These may include feeling much more tired than usual, losing your appetite, feeling generally unwell or losing weight for no obvious reason. All the symptoms mentioned here can be caused by other conditions. But if you have any of these symptoms it s important to get them checked out by your doctor or specialist nurse. Always let them know if you develop any new symptoms, especially if they last more than a week or two. If the cancer has spread to the bones The first symptom of this is often a nagging ache in the bone. This may become painful when you are moving around, or make it difficult to sleep. The pain tends to be there both day and night. Aches and pains are not uncommon and can be caused by different things. But it s important to see your doctor if your symptoms continue. Secondary breast cancer in the bones can be controlled with hormonal therapies and drugs that strengthen the bones. 11

13 Understanding secondary breast cancer Other bone problems These are not common in women who are newly diagnosed with secondary breast cancer in the bone. But it s important to know about them. A break in the bone (fracture) If the cancer gradually damages the bone it may become weaker and occasionally a very weak bone can break (fracture). Treatments are usually started long before a bone is weak enough to break. Hypercalcaemia Sometimes if the cancer damages the bone it can cause calcium (a mineral stored in bones) to be released into the blood. A high level of calcium in the blood (hypercalcaemia) can cause symptoms such as feeling tired, sick, thirsty, passing more urine, being constipated or feeling confused. Hypercalcaemia can be picked up on a blood test before symptoms develop. Treatments are given to correct the calcium level and relieve any symptoms (see pages 50 52). Spinal cord compression Occasionally, if the secondary cancer has spread to the spine and is causing pressure on the spinal cord this may cause symptoms. These include unexplained pain in the back, neck, or down the arm; numbness or pins and needles in toes, fingers or buttocks; unsteadiness or difficulty walking; or problems with bladder or bowel control. If you have any of these symptoms it is very important to let your cancer doctor or nurse know immediately. Spinal cord compression can be successfully treated if it is diagnosed quickly. See pages for more information on symptoms and treatment. 12

14 Symptoms If the cancer has spread to the lungs The first symptoms of this may be a cough that doesn t get better or breathlessness. If cancer cells settle on the outside of the lungs, they can irritate the membranes which cover the lungs (pleura). This causes fluid to build up and press on the lungs which can make you breathless. This is called a pleural effusion. The fluid can be drained away to make your breathing easier. Breathlessness can be frightening, but there are effective ways of managing it. When treatment usually chemotherapy starts to work, your breathing will improve. If the cancer has spread to the liver Some women may have discomfort or pain in the liver, which is on the right side of the tummy (abdomen) under the ribs. Other symptoms may include feeling sick, losing your appetite, or feeling very tired and generally unwell. Occasionally, secondary breast cancer in the liver results in a build-up of bile in the blood causing jaundice. This makes the skin and whites of the eyes become yellow and skin feels itchy. The liver is a large organ and can still work well even when it is affected by cancer. When your treatment usually chemotherapy starts to work, the symptoms will improve. If the cancer has spread to the brain This may cause symptoms such as a headache that doesn t go away, feeling sick or being sick. These symptoms are caused by increased pressure in the brain and may be worse first thing in the morning. 13

15 Understanding secondary breast cancer Depending on the part of the brain that is affected, some women may have other symptoms. This can include feelings of weakness, pins and needles or numbness in an arm or a leg, or sometimes a seizure (fit). It is natural to feel frightened at the thought of having a secondary cancer in the brain. However, drugs called steroids (see pages 57 58) and radiotherapy (see pages 46 48) are used to treat the cancer. This will get rid of the headaches and improve other symptoms. We haven t included information about rarer symptoms of secondary breast cancer, which are very unlikely to affect you. If you are worried about any symptoms that you have, it s important to talk to your doctor. You can call our cancer support specialists on for more information about secondary cancer in all these parts of the body. 14

16 Diagnosing secondary breast cancer 15

17 Understanding secondary breast cancer Diagnosing secondary breast cancer Some women are diagnosed after going to see their own doctor (GP) with a new symptom. Your GP may arrange some tests for you or refer you directly to your cancer specialist (oncologist). Some women don t have obvious symptoms. They may be diagnosed when results of a routine test at their follow-up clinic indicate that more tests are needed. Occasionally, women are diagnosed with secondary cancer first without a previous diagnosis of primary breast cancer. At the hospital Your cancer doctor (oncologist) will examine you and ask questions about your symptoms and general health. You will usually also see a specialist breast nurse who will give you information and support. Some hospitals have nurses who only see women with secondary breast cancer. Your doctor and nurse will explain which tests you need. You will usually have some of the following: 16

18 Diagnosing secondary breast cancer Blood tests Blood tests alone cannot diagnose secondary breast cancer but the results may show you need other tests. Blood tests can be used to: check how well the liver is working check the level of calcium in the blood (see page 12) measure the number of blood cells (full blood count) to show how the bone marrow, where blood cells are made, is working measure tumour markers some cancers produce proteins or tumour markers that may be raised. But the results aren t always reliable so it s not always helpful to do this. Bone scan 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. Sometimes more detailed scans, such as CT or MRI scans, may be needed. 17

19 Understanding secondary breast cancer 18

20 Diagnosing secondary breast cancer CT (computerised tomography) scan A CT scan (see photo opposite) takes a series of x-rays, which build up a three-dimensional picture of the inside of the body. The scan takes minutes and is painless. It uses a small amount of radiation, which is very unlikely to harm you and will not harm anyone you come into contact with. You will be asked not to eat or drink for at least four hours before the scan. You may be given a drink or injection of a dye, which allows particular areas to be seen more clearly. This may make you feel hot all over for a few minutes. It s important to let your doctor know if you are allergic to iodine or have asthma, because you could have a more serious reaction to the injection. You ll probably be able to go home as soon as the scan is over. MRI (magnetic resonance imaging) scan This test uses magnetism to build up a detailed picture of areas of your body. The scanner is a powerful magnet so you may be asked to complete and sign a checklist to make sure it s safe for you. The checklist asks about any metal implants you may have, for example a pacemaker, surgical clips, bone pins, etc. You should also tell your doctor if you ve ever worked with metal or in the metal industry as very tiny fragments of metal can sometimes lodge in the body. If you do have any metal in your body it s likely that you won t be able to have an MRI scan. In this situation another type of scan can be used. 19

21 Understanding secondary breast cancer Before the scan, you ll be asked to remove any metal belongings including jewellery. Some people are given an injection of dye into a vein in the arm, which doesn t usually cause discomfort. This is called a contrast medium and can help the images from the scan to show up more clearly. During the test you ll lie very still on a couch inside a long cylinder (tube) for about 30 minutes. It s painless but can be slightly uncomfortable, and some people feel a bit claustrophobic. It s also noisy, but you ll be given earplugs or headphones. You can hear, and speak to, the person operating the scanner. Biopsy Some women have a piece of tissue removed (biopsy) from the secondary cancer to confirm the diagnosis. But it s also becoming more usual to do a biopsy to find out if the secondary cancer cells have certain receptors (ER or HER2 see pages 23 24). This is because the secondary cancer may not be exactly the same as the primary breast cancer. You will usually have a biopsy carried out under a local anaesthetic as an outpatient. An ultrasound (which uses sound waves to build up a picture) or a CT scan may be used to guide the needle into the right place. The area may feel a bit uncomfortable for a couple of days afterwards and you may need to take some painkillers. 20

22 Diagnosing secondary breast cancer X-rays Bones An x-ray can give a general picture of the condition of bones, but may not be able to detect small areas of secondary tumours. A bone scan is a more sensitive test and is usually needed to confirm the diagnosis. Lungs A chest x-ray may help to see if there is secondary breast cancer in the lungs and any build-up of fluid between the membranes on the outside of the lungs (the pleura). A CT or MRI scan (see pages 19 20) is also usually done. Liver ultrasound scan This test uses sound waves to build up a picture of the liver, and can measure the size and position of any secondary cancers. An ultrasound scan is painless and only takes a few minutes. Once you re lying comfortably a gel is spread onto your tummy (abdomen). A small device like a microphone, which produces sound waves, is passed over the area. The sound waves are converted into a picture by a computer. Usually you have a CT scan of the liver so an ultrasound may not be needed. 21

23 Understanding secondary breast cancer PET/CT scan This is occasionally done if CT scan or bone scan results are not definite. This is a combination of a CT scan, which takes a series of x-rays to build up a three-dimensional picture (see page 19), and a positron emission tomography (PET) scan. A PET scan uses low-dose radiation to measure the activity of cells in different parts of the body. PET/CT scans give more detailed information about the part of the body being scanned. You may have to travel to a specialist centre to have one. You can t eat for six hours before the scan, although you may be able to drink. A mildly radioactive substance is injected into a vein, usually in your arm. The radiation dose used is very small. The scan is done after at least an hour s wait. It usually takes minutes. You should be able to go home after the scan. Waiting for your results It may take up to two weeks for the results of your tests to be ready, and a follow-up appointment will be made for you. This waiting period can often be a very anxious time and it may help you to talk things over with a relative, close friend, your specialist nurse at the hospital or one of the support organisations mentioned on pages You can also call and speak to one of our cancer support specialists. 22

24 Receptors Receptors Some breast cancer cells have receptors, which allow particular hormones or a protein called HER2 to attach to the cells and encourage them to grow. Your doctors need to know if the cancer cells have high levels of these receptors to help them plan the most effective treatment for you. If you have already had treatment for breast cancer a sample of breast cancer cells (from a biopsy or surgery) will usually have been tested for these receptors. But you may also have a biopsy taken from the secondary cancer because the hormone or HER2 receptors may be different from the primary cancer. Your cancer specialist will advise you if this is appropriate in your situation. If you haven t been treated for breast cancer before, your doctor will, if possible, take a biopsy (see page 20) of the secondary cancer. The cancer cells are tested to find out which receptors are present. Hormone receptors Some cancers have receptors for the hormones oestrogen and progesterone. Hormones act as chemical messengers and influence how cells grow and what they do. Breast cancer that has oestrogen receptors is known as oestrogen-receptor positive or ER positive. Breast cancer that doesn t have oestrogen receptors is known as ER negative. (ER is used because of the American spelling of oestrogen as estrogen.) 23

25 Understanding secondary breast cancer If the cancer is ER positive it usually responds well to treatment with hormonal therapies (see pages 32 37). HER2 receptors Some cancers have receptors for a protein known as HER2 (human epidermal growth factor 2). Cancers with high levels of HER2 receptors are called HER2 positive. Treatments known as targeted therapies (see pages 53 56) such as trastuzumab (Herceptin ) are used to treat women with HER2 positive breast cancer. We have more information we can send you on HER2 positive breast cancer. Nowadays all women diagnosed with breast cancer have the cancer cells tested for HER2 receptors. If this didn t happen when you were first diagnosed with breast cancer you will now have it done. If possible, a biopsy will be taken from the secondary cancer but cells from previous biopsies, or surgery can also be used for testing. 24

26 Treatment overview Treatment overview The aim of treatment for secondary breast cancer is to control the cancer, relieve the symptoms and help you to live longer with a good quality of life. Different treatments can be used to keep the cancer under control for a long time, sometimes for many years. Treatments include: hormonal therapy, chemotherapy, radiotherapy, bisphosphonates, targeted therapies and occasionally surgery. They can be used in combination with each other. The treatment your cancer specialist (oncologist) advises will depend on different factors, such as: where the secondary cancer is in your body whether the cancer is ER positive (see page 23) or HER2 positive (see opposite) other breast cancer treatments you had before and how long ago the grade of the cancer (how slow- or fast-growing the cells are) your symptoms and general health. If the cancer is ER positive you will be given hormonal therapy. There are different drugs and the type your doctor prescribes will depend on whether you ve been through the menopause or not. 25

27 Understanding secondary breast cancer Chemotherapy is often used to treat secondary breast cancer. You may have different courses of chemotherapy with a single drug or a combination of drugs. If you have HER2 positive breast cancer you will usually be given targeted therapy drugs, such as Herceptin (see pages 53 56). Radiotherapy is used to relieve pain in secondary cancer in the bone or it can be used to shrink secondary cancer in the brain. Occasionally, surgery may be used to remove a small tumour in the brain or to help strengthen a weak bone. If a treatment is no longer working your oncologist will usually advise another type. Different treatments can be given, one after the other, to keep the cancer under control. Your specialist doctor and nurse will involve you in treatment decisions so that your preferences are taken into account. Newer treatments and different ways of giving existing treatments are also being developed. Your cancer doctor may talk to you about taking part in a research trial (see page 62 63). If, at some stage, you decide not to have further treatment, there is a lot that can be done to control your symptoms and to support you. You can be referred to doctors and nurses who specialise in controlling symptoms any time during or after your treatment. 26

28 Treatment overview 27

29 Understanding secondary breast cancer Planning your treatment In some hospitals a team of specialists may meet to discuss and to decide on the best treatment for you. This multidisciplinary team (MDT) may include: an oncologist (cancer specialist) who specialises in giving chemotherapy, radiotherapy, hormonal therapy and targeted therapy a specialist breast care nurse who gives information and support a specialist surgeon (if needed) a doctor or nurse who specialises in controlling symptoms a radiologist who analyses x-rays and scans a pathologist who advises on the type and extent of the cancer. It may also include other healthcare professionals, such as a physiotherapist, dietitian, occupational therapist, psychologist, social worker or counsellor. Your specialist will discuss treatment options with you. Remember to ask questions about anything you don t understand or feel worried about. You can discuss the benefits and disadvantages of different treatments with your specialist doctor or nurse. You can also talk to our cancer support specialists on

30 Planning your treatment The benefits and disadvantages of treatment Many people are frightened at the idea of having cancer treatments, particularly because of the side effects that can occur. However, these can usually be controlled with medicines. Treatment can be given for different reasons and the potential benefits will vary depending upon your individual situation. Usually treatments for secondary breast cancer can help to keep the cancer under control, relieve the symptoms and help you to live for longer. However, there may be a time when the treatment has little effect on the cancer and women get treatment side effects without any of the benefits. Making treatment decisions in these circumstances is always difficult, and you may want to talk it over carefully with your cancer doctor, specialist nurse and family. If you decide not to have treatment, you will be given supportive (palliative) care, with medicines to control any symptoms. Second opinion Your multidisciplinary team (MDT) uses national treatment guidelines to decide the most suitable treatment for you. Even so, you may want another medical opinion. If you feel it will be helpful, you can ask either your specialist or GP to refer you to another specialist for a second opinion. Getting a second opinion may delay 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 relative or friend with you, and have a list of questions ready, so that you can make sure your concerns are covered during the discussion. 29

31 Understanding secondary breast cancer Giving your consent Before you have any treatment, your doctor will explain its aims. They will usually ask you to sign a form saying that you give 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: the type and extent of the treatment its benefits and disadvantages any significant risks or side effects any other treatments that may be available. If you don t understand what you ve been told, let the staff know straight away, so they can explain again. Some cancer treatments are complex, so it s not unusual to need repeated explanations. It s a good idea to have a relative or friend with you when the treatment is explained, to help you remember the discussion. You may also find it useful to write a list of questions before your appointment. People sometimes feel that hospital staff are too busy to answer their questions, but it s important for you to know how the treatment is likely to affect you. The staff should be willing to make time for your questions. 30

32 Planning yout treatment You can always ask for more time if you feel that you can t make a decision when your treatment is first explained to you. You are also free to choose not to have the treatment. The staff can explain what may happen if you don t have it. It s essential to tell a doctor or the nurse in charge, so they can record your decision in your medical notes. You don t have to give a reason for not wanting treatment, but it can help to let the staff know your concerns so they can give you the best advice. I think everybody is different, what you ve got and where you ve got it is different, how you react to the treatment. Anne 31

33 Understanding secondary breast cancer Hormonal therapies Hormones occur naturally in the body and help control how cells grow and what they do. Hormones, particularly oestrogen, can encourage breast cancer cells to grow. Hormonal therapies work by lowering the level of oestrogen in the body, or blocking oestrogen from attaching to the cancer cells. They are only effective for women who have oestrogen-receptor positive cancers (see page 23). Hormonal therapies are often the first treatment for women with ER positive breast cancer, especially when the cancer has spread to the bones. Some women may be given chemotherapy first followed by hormonal therapy. There are different hormonal therapies. The type you have will depend on whether you have been through the menopause or not and on any hormonal therapies you had before. You will be given a different hormonal therapy from any you have had before. It one drug doesn t work, or stops working, your oncologist can prescribe another hormonal therapy. We can send you more information about individual hormonal therapies. Hormonal therapies are usually easy to take and most are taken as tablets. Although side effects can sometimes be troublesome, they re rarely serious. Some side effects are similar to menopausal symptoms. Certain hormonal therapies cause a temporary or permanent menopause. 32

34 Hormonal therapies You ll need to take the drug for a few weeks or months before your doctors can tell if it is working. Hormonal therapy after menopause After the menopause, oestrogen is no longer produced by the ovaries. But some oestrogen is still produced from hormones in the fatty tissues of the body. If you have been through the menopause (you are postmenopausal) you may be offered treatment with: an aromatase inhibitor, such as anastrozole, letrozole or exemestane an anti-oestrogen drug, such as tamoxifen (unless you ve already taken it) or fulvestrant (Faslodex ). Hormonal therapy for premenopausal women Before the menopause oestrogen is mainly produced by the ovaries. If you haven t been through the menopause (you are premenopausal) you may be offered hormonal treatment with: the anti-oestrogen drug tamoxifen a pituitary downregulator drug to stop the ovaries from producing oestrogen (ovarian suppression) surgery to remove the ovaries or radiotherapy to stop the ovaries working (ovarian ablation). Some women may be given treatment with tamoxifen and ovarian suppression/ablation at the same time. 33

35 Understanding secondary breast cancer Anti-oestrogens (tamoxifen and fulvestrant) Tamoxifen works by preventing oestrogen from attaching to breast cancer cells and encouraging them to grow. It s often used in premenopausal women to reduce the risk of breast cancer coming back. But it can also be effective in controlling secondary breast cancer for both pre- and postmenopausal women who have not taken it before. Tamoxifen is taken as a daily tablet. The side effects may include: hot flushes and sweats weight gain tiredness. For many women, these side effects are mild and may get better over time. If you continue to have problems, talk to your specialist nurse or doctor as there are sometimes ways of reducing the effects. In postmenopausal women, a less common side effect of tamoxifen is that it can slightly increase the risk of blood clots in the leg or lung. Let your doctor know straight away if you have pain, warmth, swelling or tenderness in an arm or leg, or any chest pain. Women who are prescribed tamoxifen to treat secondary breast cancer in a bone may find it makes the bone pain worse for the first few days. 34

36 Hormonal therapies Fulvestrant Fulvestrant is only used in women who are postmenopausal. It s given as a monthly injection into a muscle in your buttock. It may be used to treat secondary breast cancer after other hormonal therapies have been tried. The side effects are similar to tamoxifen. Fulvestrant has not been approved by the National Institute for Health and Care Excellence (NICE) or by the Scottish Medicines Consortium (SMC). NICE and the SMC give advice on the use of new drugs in the NHS. As a result fulvestrant may not be widely available. Aromatase inhibitors (AIs) AIs are only given to women who are postmenopausal. After menopause, hormones produced by the adrenal glands (small glands above the kidneys) are converted by a chemical called aromatase into oestrogen. AIs stop this from happening and reduce oestrogen levels. Anastrozole, letrozole and exemestane are taken daily as a tablet. Side effects include tiredness, joint and muscle pain, and hot flushes. They can also cause bone thinning (osteoporosis). I feel quite positive in some ways, because I do think that this drug is definitely affecting me. I can feel in myself that it s easier, I m walking easier, getting out of a chair much more easily. Barbara 35

37 Understanding secondary breast cancer Pituitary downregulators (ovarian suppression) You only have these drugs if you have not reached the menopause. Pituitary downregulators stop a gland in the brain (pituitary gland) sending messages to the ovaries to produce oestrogen and cause a temporary menopause. A commonly used pituitary downregulator for women with breast cancer is goserelin (Zoladex ). The side effects are similar to menopausal symptoms and include hot flushes and sweats, joint pain, low sex drive, headaches and mood changes. You will be given Zoladex as a monthly injection under the skin of the tummy (abdomen). Ovarian ablation (stopping the ovaries from working) This is occasionally done in premenopausal women by removing the ovaries surgically, or rarely by giving radiotherapy to the ovaries. The operation can often be done during a short stay in hospital using keyhole surgery. The surgeon makes a small cut in the tummy area and inserts a long thin tube called a laparoscope with a tiny light and camera on the end. The ovaries are removed through the cut on your tummy using the laparoscope, which has surgical instruments attached to it. You usually recover quickly from this type of operation. Radiotherapy to stop the ovaries working involves having a short course of radiotherapy directly to the ovaries. 36

38 Hormonal therapies Both treatments result in permanent menopause. With surgery your periods stop immediately. After radiotherapy women usually have one more period before they stop. It s important to use contraception for three months after radiotherapy. We can send you more information about ovarian ablation. It can be difficult to cope with menopause symptoms when you re already coping with cancer. Our cancer support specialists on can give you more information and support. Knowing treatment will make you infertile can be hard to cope with and to accept. You can call us, or contact some of the organisations at the back of this booklet for further support. Progestogens If the cancer is no longer controlled with other hormonal therapies, drugs called progestogens may be tried. These are similar to the female hormone progesterone and are usually given as tablets. The commonest drugs used are megestrol acetate (Megace ) and medroxyprogesterone acetate (Farlutal, Provera ). The side effects include increased appetite, weight gain, feeling sick, or slight vaginal bleeding (spotting) and rarely breathlessness. Let your doctor know if this happens. 37

39 Understanding secondary breast cancer 38

40 Chemotherapy Chemotherapy Chemotherapy is the use of anti-cancer drugs to destroy cancer cells. The drugs are carried in the blood and can reach cancer cells anywhere in the body. Chemotherapy may be used as a first treatment for secondary breast cancer that is growing quickly, or is in the liver or lungs. It is also given if the cancer does not respond to hormonal therapy (ER negative). If you ve already had a chemotherapy drug before, a different drug or drugs will be used. Research trials are looking at different combinations of chemotherapy drugs and chemotherapy in combination with targeted therapy drugs (see pages 53 56). Your cancer specialist may discuss this with you and invite you to take part in a clinical trial. Chemotherapy drugs commonly used to treat secondary breast cancer are: doxorubicin or epirubicin (Pharmorubicin ) docetaxel (Taxotere ) or paclitaxel (Taxol ) vinorelbine (Navelbine ) capecitabine (Xeloda ) gemcitabine (Gemzar ) carboplatin. 39

41 Understanding secondary breast cancer You may have a drug on its own or a combination of drugs. A drug called paclitaxel albumin (Abraxane ) is similar to paclitaxel. It is sometimes used after other chemotherapy drugs have been tried. We can send you more information on Abraxane. Newer drugs A new drug called eribulin (Halaven ) is licensed for women who have already had two other courses of chemotherapy for secondary breast cancer. But it has not been approved by the National Institute for Health and Care Excellence (NICE) or by the Scottish Medicines Consortium (SMC). As a result eribulin is not widely available. Another new drug called T-DM1 is a combination of the targeted therapy medicine Herceptin (see pages 53 54) and a chemotherapy drug called emtansine. In T-DM1, the emtansine is attached to the Herceptin. This drug may be given in a clinical trial. Your cancer specialist will explain which type of chemotherapy is appropriate for you and will discuss the benefits and side effects with you. Our booklet Understanding chemotherapy has more information. We also have more information about individual drugs and drug combinations. 40

42 Chemotherapy How chemotherapy is given Chemotherapy drugs can be given into a vein (intravenously), as injections or drips (infusions), or as tablets or capsules to take at home. Intravenous chemotherapy is usually given through a small tube (cannula) in your arm. Occasionally it s given through a soft plastic tube called a central or a PICC line. A central line is put into a vein in your chest and a PICC line is put into a vein in the bend of your arm. You can read more about this in our booklet about chemotherapy. You ll usually have your treatment in the chemotherapy day unit. Some chemotherapy drugs can be taken as tablets or capsules at home. We met a lot of other ladies in the same position as myself, some of them a lot sicker than I was, some of them less. We turned it into a positive experience. Mary 41

43 Understanding secondary breast cancer Your chemotherapy will be given to you as a series of treatments known as cycles. You may have drugs weekly or every three weeks and the complete course of treatment may take several months. Your doctor or nurse will explain how many cycles of treatment are planned for you and how you ll be given your chemotherapy. Side effects Chemotherapy drugs may cause unpleasant side effects, but these can usually be well-controlled with medicines and will usually go away once treatment has finished. Not all drugs cause the same side effects and some people may have very few. You can talk to your doctor or nurse about what to expect from the treatment that s planned for you. The main side effects are described here as well as some ways to reduce or control them. We can send you further information about many of the side effects mentioned here. Risk of infection (neutropenia) Chemotherapy can temporarily reduce the number of white blood cells which help fight infection. If the number of your white blood cells is low you ll be more prone to infections. A low white blood cell count is called neutropenia. Always contact the hospital immediately on the 24-hour contact number you ve been given and speak to a nurse or doctor if: you develop a high temperature this may be over 37.5 C (99.5 F) or over 38 C (100.4 F) depending 42

44 Chemotherapy on the hospital s policy. Follow the advice that you have been given by your chemotherapy team you suddenly feel unwell, even with a normal temperature you feel shivery and shaky you have any symptoms of infection such as a cold, sore throat, cough, passing urine frequently (urine infection), or diarrhoea. If necessary you ll be given antibiotics to treat an infection. You ll have a blood test before each cycle of chemotherapy to make sure your white blood cells have recovered. Occasionally treatment may need to be delayed if the number of your white cells is still low. Bruising and bleeding Chemotherapy can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot. If you develop any unexplained bruising or bleeding, such as nosebleeds, bleeding gums, blood spots or rashes on the skin, contact your doctor or the hospital straight away. Anaemia (reduced number of red blood cells) Chemotherapy may reduce the number of red bloods cells (haemoglobin) in your blood. A low level of red blood cells is known as anaemia, and can make you feel very tired and lethargic. Feeling sick Some chemotherapy drugs can make you feel sick (nauseated) or possibly be sick (vomit). Your cancer specialist will prescribe anti-sickness (anti-emetic) drugs to prevent this. Let your doctor 43

45 Understanding secondary breast cancer or nurse know if your anti-sickness drugs are not helping, as there are several different types you can take. We have more information about nausea and vomiting. Tiredness (fatigue) You re likely to become tired and have to take things slowly. Try to pace yourself and save your energy for things that you want to do or that need doing. Balance rest with some physical activity even going for short walks will help increase your energy levels. Our booklet Coping with fatigue has more helpful tips. Loss of appetite Some people lose their appetite while they re having chemotherapy. This can be mild and may only last a few days. If you don t feel like eating during treatment, you could try replacing some meals with nutritious drinks or a soft diet. If it doesn t improve you can ask to see a dietician. Mouth problems Chemotherapy can cause mouth problems such as a sore mouth, mouth ulcers or infection. Drinking plenty of fluids, and cleaning your teeth regularly and gently with a soft toothbrush can help to reduce the risk of this happening. Your chemotherapy nurse will explain how to look after your mouth to reduce the risk of problems. They can give you mouthwashes, medicines and gels to help. Hair loss Some chemotherapy drugs may cause hair loss. Some people may have complete hair loss including eyelashes and eyebrows. Others may only experience partial hair loss or thinning. 44

46 Chemotherapy It depends on what chemotherapy drugs you are having. Your doctor or nurse can tell you more about what to expect. You ll be given advice on looking after your scalp. Our booklet Coping with hair loss has lots of helpful tips on how to deal with hair loss. Increased risk of blood clots Cancer can increase your risk of developing a blood clot (thrombosis), and having chemotherapy may increase this risk further. A blood clot may cause symptoms such as pain, redness and swelling in a leg, or breathlessness and chest pain. Blood clots can be very serious so it s important to tell your doctor straightaway if you have any of these symptoms. However, most clots can usually be successfully treated with drugs to thin the blood. Your doctor or nurse can give you more information about blood clots. Contraception It s not advisable to become pregnant while having chemotherapy, as the drugs may harm the unborn baby. It s important to use effective contraception during your treatment. Condoms should be used if you have sex within the first 48 hours after chemotherapy. This is to protect your partner from any of the drug that may be present in vaginal fluid. 45

47 Understanding secondary breast cancer Radiotherapy Radiotherapy uses high-energy rays to destroy cancer cells, while doing as little harm as possible to normal cells. It is used to relieve pain and other symptoms, for example, when breast cancer has spread to: the bones radiotherapy helps strengthen the bone and reduces pain. It may take 3 4 weeks before it works, so you need to carry on taking painkillers during this time the brain radiotherapy helps to shrink a secondary cancer in the brain and improves symptoms. Radiotherapy is usually given as a series of short, daily treatments, Monday Friday, in the radiotherapy department. You may need only one or a few sessions of treatment. Radiotherapy isn t painful, but the position you have to lie in for the few minutes it takes may be uncomfortable. Taking a painkiller half an hour before your radiotherapy may help. A type of radiotherapy called stereotactic radiotherapy may be used to treat small brain tumours. It delivers high doses of radiation more accurately to the tumour while doing as little harm as possible to surrounding brain tissues. There s more information about this in our booklet about radiotherapy. Radiotherapy doesn t make you radioactive and it s perfectly safe to be with other people, including children, after treatment. If you have any questions about radiotherapy, you can ask your doctor or the staff in the radiotherapy department. 46

48 Radiotherapy Side effects of radiotherapy Usually, when radiotherapy is given to improve symptoms, the side effects aren t too troublesome, especially if you re only having one or two treatments. Radiotherapy can make you feel tired and this sometimes lasts for a few weeks after treatment finishes. But the other side effects will depend on the part of your body being treated and how much radiotherapy you re having. Radiotherapy to the bones Although you ll feel tired after radiotherapy to the bones, it doesn t usually cause many side effects. If the area being treated is near the tummy, for example the ribs or the spine, you may feel sick. This can be controlled by taking anti-sickness drugs, which your specialist can prescribe. Spinal cord compression This is when a secondary tumour near to or in the spine causes pressure on the spinal cord and nerves. These nerves carry messages between the brain and the body. Spinal cord compression is not common but it s very important that it is diagnosed quickly. Some of the common symptoms are: unexplained back or neck pain pain may feel like a band around the chest or tummy area and sometimes down the arm or leg numbness, pins and needles in toes, fingers, or over the buttocks 47

49 Understanding secondary breast cancer being unsteady on your feet or having difficulty walking problems controlling your bladder, or passing very little or no urine constipation or problems controlling your bowels. If you develop any of these symptoms, it s very important to let your cancer doctor or nurse know immediately. Spinal cord compression needs urgent treatment to prevent permanent damage to the nerves. An MRI scan is usually done to diagnose it. The most common treatment is a short course of radiotherapy which is started immediately. High doses of dexamethasone (a steroid) are given to help reduce pressure and swelling around the spinal cord. Occasionally treatment with surgery is given. We can send you more information on malignant spinal cord compression (MSCC). Radiotherapy to the brain Radiotherapy to the brain can cause hair loss. The hair usually starts to grow back within a few months after the treatment has finished. Sometimes it may not grow back completely. This treatment can also make you feel very sleepy or drowsy for a few weeks. We have a booklet called Understanding radiotherapy, which has more detailed information. 48

50 Radiotherapy 49

51 Understanding secondary breast cancer Bone-strengthening drugs Bisphosphonates are drugs that strengthen the bones, relieve bone pain and reduce the risk getting a broken bone (fracture). They are also given to treat high levels of calcium in the blood (hypercalcaemia), which we explain below. You may be prescribed bisphosphonates to reduce the risk of developing bone problems if you have secondary breast cancer in the bones. Bisphosphonates can be given as tablets, which are usually taken first thing in the morning. They can also be given by a drip (infusion) in the outpatient department. The main bisphosphonates used are: zoledronic acid (Zometa ) given as a drip about once a month pamidronate (Aredia ) given as a drip every 3 4 weeks clodronate (Bonefos, Loron ) a tablet that s taken once or twice a day ibandronate (Bondronat ) given as a tablet once a day, or as a drip every 3 4 weeks. We have more information about these individual drugs. 50

52 Bone-strengthening drugs Side effects The side effects are usually mild, but can include feeling sick, headaches, and flu-like symptoms such as chills and muscle aches. Bisphosphonate tablets can sometimes cause diarrhoea, constipation or heartburn. If you re having bisphosphonates by a drip, side effects can include a temporary increase in bone pain. Your doctor can prescribe painkillers until this wears off. Very rarely bisphosphonates can cause bone damage (osteonecrosis) in the jaw. Always let your cancer specialist know if you develop any problems with your teeth or jaw. Having dental treatment or dental problems can increase the risk of osteonecrosis of the jaw. You ll be advised to have a full dental check-up before you start bisphosphonates. It s important to let your dentist know if you re being treated with bisphosphonates. Our cancer support specialists can give you more information about this side effect. Denosumab (Xgeva, Prolia ) This is a new drug that is a type of monoclonal antibody. It can be used to prevent fractures and bone problems in secondary bone cancer. Denosumab is given as an injection under the skin and may be given when bisphosphonates aren t suitable. 51