A practical guide to living with and after cancer

Transcription

1 A practical guide to living with and after cancer

2 Contents Contents About this booklet 3 Long-term and late effects 5 Treatments for breast cancer 6 Breast and arm changes 8 Menopausal symptoms 19 Effects on fertility 29 Sexuality 33 Concentration and memory problems 37 Other physical changes 43 Tiredness 59 Peripheral neuropathy 64 Your feelings 69 Relationships 73 Getting help and support 76 How we can help you 81 Other useful organisations 85 Further resources 93 Your notes and questions 97 1

3 Managing the late effects of breast cancer treatment 2

4 About this booklet About this booklet This information is for women who experience: side effects that continue for six months or longer after treatment for breast cancer delayed late effects that begin months or years after treatment. We describe the possible effects of treatment and how they can be improved or managed. We ve included information on positive lifestyle changes, which can help to reduce the risk of developing some late effects. There s also information about coping with sexual and emotional difficulties that some women may experience. Most women have side effects during treatment for breast cancer and for a few weeks after. Usually, these effects gradually reduce and eventually disappear. But some women may have side effects that continue months after treatment and that occasionally become permanent. Other women may develop late effects of treatment months or years later. Not everyone experiences long-term or late effects and many effects get better over time. How likely you are to have problems depends on different factors, such as the type of treatment you ve had (see pages 6 7). 3

5 Managing the late effects of breast cancer treatment Although this booklet is addressed to women, some of the information may help men who are also experiencing late effects of breast cancer treatment. Breast cancer in men is rare and there isn t a lot of specific information available. However, men receive similar breast cancer treatments to women and experience some of the same late effects. We hope that if you re experiencing long-term or late effects, this booklet will help you know who can help you and what can be done. It also suggests some positive ways that you can help yourself. 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 Turn to pages for some useful addresses and websites, and page 97 to write down any notes and 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. 4

6 Long-term and late effects Long-term and late effects You may come across different terms to describe side effects that develop after treatment or are still present after treatment is over. There are two commonly used terms: long-term effects late effects. Long-term effects begin during or shortly after treatment and don t go away in the six months after treatment. They may go away eventually on their own, with symptoms gradually reducing for up to a year or two after treatment ends. Sometimes long-term effects are permanent. Late effects are a delayed response to treatment. They don t appear during treatment, but can happen months or even years later. There are often things that can be done to manage or treat long-term or late effects. Let your cancer doctor or nurse know if side effects you developed during treatment aren t going away, or if you develop new symptoms or problems after treatment is over. In this booklet, we use the term late effects to cover both long-term and late effects. 5

7 Managing the late effects of breast cancer treatment Treatments for breast cancer The main treatments for breast cancer are surgery, radiotherapy, chemotherapy, hormonal therapy and newer targeted therapies, such as trastuzumab (Herceptin ). You can read more about these treatments in our booklet Understanding breast cancer. Surgery and radiotherapy to the breast, especially involving the armpit (axilla), can result in breast and chest pain, limited movement of the shoulder or arm, or swelling of the arm (lymphoedema). Women who ve had part of the breast removed followed by radiotherapy may find the treated breast shrinks slightly over time so the breasts are a different size from each other. Chemotherapy may cause an early menopause, and some chemotherapy drugs can cause changes in sensation, such as pins and needles or numbness in your hands and feet. Hormonal therapies can cause side effects similar to menopausal symptoms and some may cause joint pain. Trastuzumab (Herceptin) and some chemotherapy drugs can cause changes in the way the heart works. Cancer treatment can also cause more general changes in how you feel. You may be more tired than usual for several months after treatment or have difficulty concentrating or remembering things. These effects may improve over time, but some are permanent. Most women have mild treatment effects, which eventually go away over time. 6

8 Treatments for breast cancer Treatment for breast cancer is constantly developing and women are living for longer as a result of improved treatments. We re learning more about late effects and how they can be managed. Doctors and researchers are trying to make sure that women get the best treatment, with as few side effects as possible. 7

9 Managing the late effects of breast cancer treatment Breast and arm changes Surgery and radiotherapy to the breast can cause a number of changes. These can include pain, problems with movement, changes to the breast tissue or to the appearance of the breast, and swelling of the arm (lymphoedema) if the armpit is treated. Always let your cancer doctor or nurse know if you have any of these symptoms. Women sometimes worry that their symptoms are caused by the cancer coming back. Your doctor or nurse will be able to reassure you or arrange to have them checked, if necessary. There are different ways that these effects can be managed, and they ll be able to advise you on what may be helpful in your situation. Changes in sensation in the breast and arm Surgery and radiotherapy can cause changes in sensation in the chest area, the armpit, and the shoulder and arm on the affected side. These can include: sharp, shooting or burning pain aching pain sensitivity to touch or to the cold numbness or pins and needles. 8

10 Breast and arm changes These symptoms happen because the nerves in the chest area or armpit are cut or injured during surgery. It s not unusual to experience these symptoms, particularly after surgery to remove all the lymph nodes in the armpit. Symptoms usually improve with time, but in some women they may take months or years to get better. If you have an aching pain in the breast, wearing a support bra during the day and a soft bra (no underwire) at night may help. Describing your symptoms clearly will help your doctor to prescribe the right painkiller for you. Simple painkillers such as paracetamol, or anti-inflammatory drugs such as ibuprofen, can often control the pain. But if you have nerve pain (shooting or burning pain), you may need other types of painkillers. Rarely, radiotherapy to treat the lymph nodes in the armpit or an area above the collarbone (clavicle) can damage the nerves to the arm causing pain, numbness and, in extreme cases, loss of movement (brachial plexus neuropathy). As radiotherapy techniques have improved, this problem is now much rarer. Although this condition can t be reversed, the symptoms can be improved with drug treatment and physiotherapy. Physiotherapy involves doing exercises to strengthen the muscles and keep them supple. The physiotherapist will also be able to show you how to use slings or splints to support your arm, if needed. If you re unable to work because of damage to your arm, you may be entitled to some benefits. Our booklet Work and cancer gives information about employment rights, disability rights and financial issues for people with cancer. We also have a booklet called Working while caring for someone with cancer. 9

11 Managing the late effects of breast cancer treatment Treating nerve pain Nerve pain can be treated in different ways. There is more information about this on page 65. We have more information about different ways that pain can be treated in our booklet Controlling cancer pain. Changes in movement and strength in your arm/shoulder Radiotherapy and surgery, especially to the armpit, can affect the range of movement and strength in your arm and/or shoulder. This may affect your ability to do everyday activities, such as household chores. It may interfere with some types of exercise, such as swimming or tennis. After breast surgery, a physiotherapist usually gives you exercises to do to help improve recovery of shoulder movement. Arm and shoulder movement gradually improves after treatment. If you continue to have problems, here are some suggestions that may help: Ask your doctor to refer you to a physiotherapist who will assess you and show you exercises to help improve movement and strength. Exercises you were given previously may not be right for you now. Having good posture is also important and your physiotherapist can give you advice on this. Having your pain controlled (see page 65) will help to improve movement and relieve stiffness. Problems with pain may mean that you re not using your arm or shoulder properly, which can make things worse. 10

12 Breast and arm changes 11

13 Managing the late effects of breast cancer treatment Taking painkillers half an hour before you exercise or having a warm bath to relax your muscles can help. If you can t do your exercises or you find them painful, then stop. Avoid lifting or carrying heavy things with the affected arm/shoulder or reaching out or lifting if it s painful. Use a shopping trolley instead of a basket, shop online and get heavy things delivered. Try to make sure that objects you use often are low down and in easy-to-reach places. Ask to be referred to an occupational therapist (OT) if you re having difficulty carrying out daily tasks. They can assess your needs and recommend aids or equipment to help you. Accept offers of help. Let people know what kind of practical help you need. They could help you with things like shopping, taking the rubbish out or mowing the lawn. Complementary therapies, such as relaxation or deep breathing exercises, may be helpful. Ask your doctor or physiotherapist for advice on this. There s more information in our booklet Cancer and complementary therapies. Cording After surgery for breast cancer, some women have an uncomfortable sensation that feels like a tight cord running from their armpit to the back of their hand. This is called cording. It may develop weeks or months after surgery and is thought to be due to hardened lymph vessels. Sometimes it makes it difficult to move the arm, but it usually gets better gradually over a few months. Some women may need physiotherapy and massage to improve it. 12

14 Breast and arm changes Changes to the appearance of the breast Women who have a breast removed (mastectomy) may find it hard to come to terms with the change in their appearance. This may affect how you feel about yourself as a woman and your sex life (see pages 33 36). It may also result in problems with depression (see pages 71 72). Some women choose to have breast reconstruction (see opposite). You can read more about the help that s available in our section on getting support (see pages 76 79). Most women who only have a small part of the breast removed followed by radiotherapy, don t find there are too many changes in the appearance to adjust to. However, there are some changes that can develop over time. Radiotherapy can cause dilated blood vessels under the skin (telangiectasia). Although this affects how the breast looks, it shouldn t cause any other problems. Rarely, prominent blood vessels in the skin of the breast or chest can be a sign of more serious conditions so it s always important to get any changes like this checked out. After radiotherapy, a woman s breast may shrink slightly over time. Some women also develop a hardening or thickening of the breast tissue (fibrosis). This can cause the breast to become harder and smaller than it was. Breast shrinkage is worse in women who smoke, so doctors strongly advise women who smoke to give it up. If you notice changes to the appearance or feel of your breast, it s best to have it checked by your doctor or breast care nurse. Women s breasts often get bigger with age or weight gain. But if you ve had radiotherapy, the treated breast won t always increase in size in the same way as the other breast. 13

15 Managing the late effects of breast cancer treatment Keeping to a healthy weight (see pages 57 58), can help to make sure that you don t have too much of an imbalance between breasts. Wearing a shell or partial breast prosthesis in your bra can help to add symmetry. This is a silicone insert that can be worn inside one cup of a bra to give you a more balanced appearance. Breast Cancer Care (see page 86) provides information on different kinds of prosthesis. Some women choose to have surgery to reduce the size of the larger breast if the imbalance in their appearance is a problem. Your doctor or breast nurse can tell you more about this. Breast reconstruction Breast reconstruction is one or more operations to make a new breast shape. It can be done after a mastectomy or to improve the shape of the breast after a lumpectomy. Newer procedures, developed from liposuction techniques (lipomodelling), may be used to fill in dents in the breast. Fat cells are removed from the tummy area (abdomen) or the thighs by gentle liposuction. The whole fat cells are then separated and injected into the breast. For some women, breast reconstruction can help to restore self-confidence, feelings of femininity and sexual attractiveness. There isn t a time or age limit on when the operation should be done, just as long as you re fit enough. Many women have reconstruction years after their initial breast operation. Your cancer specialist or breast care nurse can discuss this further with you and arrange a referral to a specialist breast cancer surgeon or a plastic surgeon. We have a booklet called Understanding breast reconstruction, which we can send you. 14

16 Breast and arm changes Lymphoedema Lymphoedema (swelling) of the arm or hand, and occasionally the breast, can develop at any time after treatment for breast cancer. It happens because surgery to remove the lymph nodes in the armpit, or radiotherapy to the nodes, has affected the way that lymph fluid drains from the arm. Lymphoedema is more likely to happen if you ve had all, or a large number, of lymph nodes removed together with radiotherapy to the armpit. It usually develops gradually, months or years after treatment. If you ve only had a sentinel lymph node biopsy (checking just one or two of the lymph nodes), the risk of getting lymphoedema is low. If you re not sure about what type of lymph node surgery you ve had, your specialist nurse can tell you. Reducing the risk of lymphoedema The following steps could help to prevent lymphoedema. If you already have lymphoedema, this advice may stop it getting worse. Skin care Any cuts in your skin can allow bacteria to enter your body and may quickly develop into an infection. So good skin care and protecting your arm and hand are important. 15

17 Managing the late effects of breast cancer treatment Here are some things you can do to prevent skin damage and reduce the risk of infection: Keep your skin clean and moisturise every day with unperfumed cream or oil. Lymphoedema can make the skin dry and itchy, and it may crack. Good moisturising can help prevent this and keeps your skin supple and in good condition. Treat even small grazes and cuts straight away. Wash the area thoroughly and cover it, if necessary. See your GP immediately if you develop any signs of infection around the cut, for example if it becomes red, hot or swollen. General advice is to avoid needles (blood tests, injections, drips or acupuncture) and having your blood pressure taken in the arm on the side that has been treated. However, there is limited medical evidence in relation to this and lymphoedema. Protect your arm and hand by wearing gloves and long sleeves when doing household tasks, DIY, gardening or working with animals. To avoid burns, use oven gloves or pot holders and long sleeves when cooking and baking. Use insect repellent to prevent insect bites. If you re stung on or near the affected area, get medical advice. Use nail clippers instead of scissors to cut your nails and never push back or cut the cuticles use cuticle cream instead. 16

18 Breast and arm changes Use an electric razor if you shave under your arms. Numbness under the arm is not uncommon. It can be easy to cut yourself with a blade razor, especially if you have a bumpy scar. Protect your skin from the sun. Cover up or use a high factor suncream (at least SPF 30) and avoid getting sunburnt. Treating lymphoedema Lymphoedema is a long-term condition but the earlier it s diagnosed, the more effective and straightforward treatment is. If you notice any swelling in your arm or chest, always get it checked by your doctor or nurse. If lymphoedema is diagnosed, you ll be referred to a specialist lymphoedema nurse, breast care nurse, doctor or physiotherapist for a full assessment. In some areas of the UK, there are specialist lymphoedema centres where treatment and advice are given. Your doctor or nurse should be able to tell you if there s one in your area, or you can contact the British Lymphology Society (see page 86), which produces a directory of centres. If you don t live close to a centre, there are other organisations that can offer advice and support (see pages 85 87). The aim of treatment is to relieve discomfort by reducing swelling and to prevent more build-up of fluid. 17

19 Managing the late effects of breast cancer treatment Treating lymphoedema involves: skin care to prevent infection exercises including limb positioning and movement support using compression sleeves or bandages that help stop fluid from building up self-massage or a specialised type of massage called manual lymphatic drainage. You ll be given advice on how to look after your skin (see pages for skin care tips) and you ll be shown how to carry out treatment for yourself at home. This will help you to develop a routine that builds lymphoedema care into your everyday activities. Our booklet Understanding lymphoedema has more detailed information. 18

20 Menopausal symptoms Menopausal symptoms Some treatments for breast cancer can affect the way the ovaries work. As a result, you may start your menopause earlier than expected, or have menopausal symptoms due to the treatment itself. The menopause happens because the ovaries stop producing the hormones oestrogen and progesterone. Women naturally stop having regular periods, usually at some time between their mid-40s and mid-50s. Women who ve had chemotherapy close to the age of natural menopause (around 50) may go into the menopause abruptly. Younger women in their 30s may find that their periods stop for a while and then come back again. However, they may have an earlier menopause than usual. Women taking tamoxifen or hormonal drugs called aromatase inhibitors, such as anastrozole (Arimidex ), letrozole (Femara ) and exemestane (Aromasin ), may have side effects that are similar to menopausal symptoms. Coping with early menopause or menopausal symptoms when you re already dealing with cancer can be very difficult. You may have other troublesome treatment side effects to cope with too. There are different approaches that may help you to cope or to reduce menopausal symptoms. 19

21 Managing the late effects of breast cancer treatment 20

22 Menopausal symptoms Choosing the right approach for you will depend on different factors and your preferences. This includes the possible risks and benefits of each approach, the type and severity of your symptoms and other treatments that you may be taking. You may have one or more of the following symptoms, which can range from mild to more severe. We have more detailed information about breast cancer and menopausal symptoms. Hot flushes and sweats This is the most common menopausal symptom. Hot flushes can vary from a mild feeling of warmth in the face to a drenching night sweat. Flushes and night sweats can be particularly disruptive to your sleep pattern. It s difficult to stop hot flushes and sweats, but their frequency or intensity can often be reduced. Using a combination of approaches is often most successful at controlling or reducing flushes. Getting too warm, drinking tea, coffee or alcohol, or eating certain foods, may bring on a hot flush. Keep a record of when you have flushes to find out which things trigger them, so you can try to avoid them. Here are some suggestions for ways to manage hot flushes: Cooling your body when you feel a flush coming on may help. Try drinking cold water. You can also try storing cold packs in the freezer to use when you feel the need. Some people find a special pillow called a Chillow, which acts as a cooling pad, helps them to sleep better. 21

23 Managing the late effects of breast cancer treatment Slow, controlled breathing techniques have been shown to help some women (page 24). Ask your doctor about cognitive behavioural therapy, which is a type of therapy that teaches techniques and strategies to help you deal with difficult emotions and situations. Have a lukewarm bath to relax before bedtime. A warm herbal or milk drink before bed can help you to relax. Wear clothes made of natural fibres such as cotton, silk or linen. Layers mean you can adjust your temperature more easily. If you smoke, giving up may help reduce hot flushes. Try doing regular aerobic exercise, such as walking or jogging. Relaxation or meditation tapes/cds/podcasts, relaxation exercises, visualisation, massage or meditation can help to reduce anxiety and sleeplessness. Your GP can prescribe sleeping tablets for a short period of time to help re-establish a sleep pattern. Low doses of antidepressants such as paroxetine, fluoxetine and venlafaxine may reduce the number and severity of hot flushes by about half (50%) in some women. Paroxetine and fluoxetine aren t recommended for women taking tamoxifen as they may interfere with its effectiveness. However, venlafaxine doesn t interact with tamoxifen so they can be taken together. 22

24 Menopausal symptoms An anti-epilepsy drug called gabapentin has also been shown to be effective at reducing the severity and frequency of hot flushes. Megestrol acetate is also effective in treating hot flushes, but some doctors have concerns about using it because it contains progestogen, which is similar to the female hormone progesterone. Clonidine is a medicine used to treat high blood pressure or migraines, which may help to reduce hot flushes and sweats in some women. Hormone replacement therapy (HRT) isn t recommended after breast cancer because it increases the risk of the cancer coming back or of a new breast cancer developing. Tibolone, a different type of HRT, should also be avoided. Although it doesn t contain oestrogen, it increases the risk of breast cancer coming back. Some doctors may prescribe HRT if a woman s symptoms are very severe and nothing else helps. It s important to talk this through with your cancer specialist to make sure that you are clear about the possible risks and benefits. The risks of HRT are lower for women who ve had oestrogen-receptor negative (ER ve) breast cancer. Complementary therapies for hot flushes Some women find that complementary therapies help reduce hot flushes. There are different types that may be used. 23

25 Managing the late effects of breast cancer treatment Acupuncture is the practice of putting sterile needles through the skin at specific points in the body. There s some research evidence that it may help to reduce the number and severity of hot flushes. Hypnosis may help to reduce the length and severity of hot flushes, but it s unlikely to be available on the NHS. Several studies have shown that using a slow, controlled breathing technique called paced breathing can be an effective way of managing flushes. There s also a yoga breathing technique, known as the cooling breath or sheetali that can help to reduce your body temperature. A recent study found that women who used paced breathing in combination with cognitive behavioural therapy (CBT) reduced the number of hot flushes they had by almost half (40%). One study found that taking vitamin E supplements helped to reduce hot flushes by a small amount for some women. Evening primrose oil is used by some women but there s no scientific evidence that it works for reducing menopausal symptoms. Plant oestrogens (phytoestrogens) can have a weak oestrogenlike effect, but there s no evidence they improve menopausal symptoms. There is also concern that they may increase the risk of breast cancer coming back. Recent breast cancer treatment guidelines recommend that women who have had breast cancer don t take plant oestrogens, such as black cohosh or red clover, to treat menopausal symptoms. Homeopathy uses tiny amounts of substances that would normally produce the symptoms being treated. Although it may be used by some women, there s no scientific proof that it works. 24

26 Menopausal symptoms Vaginal dryness Lower oestrogen levels can cause changes in the lining of the vagina, making it drier, less stretchy and more fragile. This can cause vaginal discomfort or pain in some women. Using vaginal creams or lubricants can help. Replens MD is a non-hormonal cream that you apply 2 3 times a week. It boosts blood flow in the vagina. Water-based lubricants, such as Senselle, Astroglide and Sylk, can help to reduce discomfort from vaginal dryness during sex. You may need to try more than one of these products to find which works best for you. They are sold in chemists and on the internet. There are also some treatments that release a small amount of oestrogen into the vagina, which helps to restore some lubrication and stretchiness (elasticity): Vagifem is a tablet that you insert into the vagina (a pessary). Ovestin and Ortho-Gynest are available as creams or pessaries. Estring is a vaginal ring that is worn for three months. The long-term risks of using products containing oestrogen after breast cancer aren t known. However, many breast specialists think that very little of the oestrogen in the creams and pessaries is absorbed by the body. If they re prescribed for you, they should be used in the lowest possible dose. It s important to talk to your specialist or breast care nurse before you use any products containing oestrogen. 25

27 Managing the late effects of breast cancer treatment Passing urine more often You may pass urine more often, have some urine leakage or be more prone to urinary infections. It s important to drink enough fluid (at least 2 3 pints/1.5 litres) each day to keep your bladder healthy. If you don t drink enough, your urine will become concentrated and irritate the bladder. You will also be more likely to develop urinary infections. Speak to your doctor if you develop symptoms of a urinary infection such as: pain or discomfort when passing urine cloudy-looking urine urine that smells bad. There are different causes for urine leakage. If you have this problem, you should speak to your GP. Sometimes pelvic floor exercises (also called Kegel exercises) can help. These exercises strengthen the muscles that hold urine in the bladder. Your nurse or doctor can explain to you how to do these exercises or you can order an instruction leaflet from the Bladder and Bowel Foundation (see page 85). Vaginal treatments containing low doses of oestrogen can improve urinary problems and reduce urinary infections. 26

28 Menopausal symptoms Psychological effects The psychological effects of menopausal symptoms can be hard to cope with when you already have to deal with the physical effects of cancer. Psychological effects can include a lower sex drive (pages 33 36), mood swings, lack of confidence and a loss of concentration and memory (pages 37 42). You may feel emotional or anxious without really knowing why. A number of organisations, including The Daisy Network (page 86), provide support to women going through the menopause. Many women find it helpful to talk through their feelings with their doctor or nurse, or with family and friends. You may also find it helps to speak to a professional counsellor. 27

29 Managing the late effects of breast cancer treatment 28

30 Effects on fertility Effects on fertility Some breast cancer treatments can affect your ability to have children (fertility). For many younger women, this can be a major concern. Having a family can be an important part of moving on with life after cancer. Some women, particularly if they re younger, have no difficulties getting pregnant naturally after treatment. Doctors usually advise that you wait at least two years after treatment before getting pregnant. This is the time when the cancer is most likely to come back, but it also gives you time to recover from treatment. Pregnancy raises your natural hormone levels so it s important to talk to your specialist first if you re planning to get pregnant. Some studies show that pregnancy after breast cancer doesn t increase the risk of breast cancer coming back. But there hasn t been a lot of research in this area and more is needed. Your specialist can advise you on the risk of the cancer coming back and how safe pregnancy is in your situation. Infertility may be temporary or permanent, depending on the treatment you ve had and your age. Check with your breast care nurse or cancer specialist if you re not sure if you need to continue using contraceptives to prevent pregnancy. Women who ve had breast cancer, are advised not to take the contraceptive pill or use coils (IUDs) containing hormones as these could encourage breast cancer cells to grow. Your cancer specialist or specialist nurse will give you more advice about this. 29

31 Managing the late effects of breast cancer treatment How treatments may affect fertility Hormonal therapy Drugs, such as goserelin, which are used to stop the ovaries from working (known as ovarian suppression) cause temporary infertility. Your periods usually start again about six months after the treatment stops. Women taking tamoxifen often find that their periods change. Your periods may stop, become less regular, heavier or lighter. If your periods stop, they usually start again when you stop taking tamoxifen. Even if your periods stop when taking tamoxifen, it s still possible to become pregnant. Tamoxifen can affect an unborn baby, so it isn t safe to become pregnant while taking it. Tamoxifen is usually prescribed for five years and, depending on your age, this may be an issue if you want to get pregnant. It s important to talk this over with your specialist. The side effects of hormonal therapy are similar to the effects of menopause. Women in their 40s may go through their menopause without knowing it, while taking hormonal therapy. Chemotherapy Chemotherapy affects the way the ovaries work and can result in fewer or no eggs being produced. Cyclophosphamide, which is used in combination with other drugs to treat breast cancer, is the drug most likely to cause infertility. 30

32 Effects on fertility Some women may go into menopause immediately after treatment, especially if they re close to their natural menopause. If your periods don t come back after some months, your specialist can do blood tests, which may help to indicate if you ve gone through the menopause. If you re in your 30s (particularly under 35), even if your periods stop, they ll usually come back again months or years after treatment has finished. Some young women don t stop having periods at all. The younger you are, the more likely it is that your fertility will be preserved after chemotherapy. Chemotherapy reduces your egg supply. This means that even though you re having periods, your menopause may start earlier than it would have without cancer treatment. It s important to consider this if you re thinking of having a family. Referral to a fertility clinic If you ve had chemotherapy and are having difficulty getting pregnant, you can ask your doctor to refer you to a fertility specialist. Women who ve had chemotherapy are usually referred after six months of trying to get pregnant because of their risk of early menopause. The fertility specialist will give you advice on the possible options available to you. There are different ways of becoming a parent. Some women may consider egg donation, surrogacy or adoption. You can read more about this in our booklet Relationships, sex and fertility for young people affected by cancer. 31

33 Managing the late effects of breast cancer treatment Women who had eggs or an embryo (a fertilised egg) frozen and stored before treatment can have fertility treatment later on, which may result in a successful pregnancy. Becoming infertile can be very hard for some women to live with whether or not they already have children. Some women may find it helpful to talk through their feelings with a trained counsellor. If you need more specialised help, your doctor can arrange this for you. We have a booklet called Cancer treatment and fertility information for women, which has more detailed information. 32

34 Sexuality Sexuality Breast cancer and its treatment can affect your sex life and how you see yourself as a woman (body image). Sexual difficulties can happen as a result of the physical and emotional effects of cancer and its treatment. You may lose interest in sex, feel unattractive or worry that you ll never be able to be sexually active. For some women, these problems continue well after treatment is over. Try not to think that sex is never going to be as important in your life as it was before. Bringing sex back into your life can involve a period of adjustment for you and your partner. After treatment, some women continue to have problems with their body image and self-esteem. Others may be left with a low sex drive (libido) or have sexual difficulties as a result of the physical effects of treatment. Usually, women find that with time most difficulties can be overcome. Many people find it difficult to talk about sexual issues because they feel embarrassed or self-conscious. Your doctor or nurse specialist will be used to talking about these things and can advise you about where to go for specialist help and support. Some of the physical effects of your treatment may make having sex difficult or reduce your sex drive. Our booklet, Sexuality and cancer, has detailed information about the impact cancer can have on sexuality and ways to cope. 33

35 Managing the late effects of breast cancer treatment Tiredness (fatigue) You may feel too exhausted to have sex during treatment and for a while afterwards. Most people find that this gradually improves, but occasionally it can last for months or even longer. You can read more about coping with tiredness on pages If you re very tired, it might help to have sex differently, for example, less energetic positioning or quicker sexual contact. Menopausal symptoms Menopausal symptoms can cause vaginal dryness and hot flushes, which can make having sex difficult and reduce your sex drive. Using gels and creams (page 25), can help ease discomfort during intercourse. Managing hot flushes and other menopausal symptoms may help to improve your sex drive. We explain ways of coping with menopausal symptoms on pages Discomfort or pain If you have problems with pain, this may affect your sex drive. Some women have pain in their chest and shoulders after surgery or radiotherapy. Controlling the pain may improve your desire to have sex. Supporting painful areas with pillows and avoiding positions where your weight rests on your chest or arms may help. 34

36 Sexuality Your partner Treatments for breast cancer may not affect your physical ability to have sex, but the emotional effects can reduce your sex drive. Surgery to remove part or all of the breast can cause problems with how you see yourself as a woman. You may feel insecure and worry if your partner will still find you sexually attractive. These anxieties may result in difficulties with your partner or make you feel anxious about new relationships. Occasionally, problems may arise because partners are struggling with changes. However, your partner may not have a problem with your changed appearance, and it can be helpful to try to discuss it if you feel that there is awkwardness between you. If you re feeling self-conscious about how you look, talking with your partner about how you feel can help you regain some confidence. Partners are often concerned about how to express their love physically and emotionally after treatment. Cuddles, kisses and massages are affectionate and sensual ways of showing how much you care for someone, even if you don t feel like having sex. If you feel very self-conscious, making love while partly dressed, or keeping the lighting low may be better for you. Our booklet, Sexuality and cancer, discusses ways of dealing with the physical and emotional changes that cancer treatment can cause. 35

37 Managing the late effects of breast cancer treatment Let your doctor or nurse know if you re having problems with your sex life. They may be able to reassure you about your concerns. If you feel uncomfortable talking to your doctor or nurse, you may want to call us on Some people may find it helpful to talk to a sexual therapist. You can contact a therapist through the British Association for Sexual and Relationship Therapy (see page 89). Changes in your appearance If you feel less confident and attractive because your operation has changed your appearance, it may be possible to have further surgery to improve it. Breast reconstruction or surgery to help improve the shape of your breast can help to restore your self-confidence, feelings of femininity and sexual attractiveness. You can read more about this on page 14. Many women have reconstruction done years after their initial breast operation. Your specialist or breast care nurse can discuss this further with you and also arrange a referral to a plastic surgeon. If your prosthesis is no longer a good fit, you may feel less confident about how you look. You can have a reassessment, even if your prosthesis is still in good condition. From time to time, new prosthesis styles are developed. Even getting a new bra fitted in a different style can improve how you look and feel. Breast Cancer Care (see page 86) has helpful information about prosthesis, underwear and clothing. 36

38 Concentration and memory problems Concentration and memory problems After treatment for breast cancer, some women have difficulties concentrating and remembering things. At the moment, it s not clear which treatments may cause these problems, or whether they may be caused by the cancer itself, by physical changes such as long-term tiredness (chronic fatigue), or by emotions such as anxiety and depression. Doctors call difficulties in concentrating and remembering things cognitive impairment. Cognitive means thinking or the way we process information. Impairment or dysfunction means that something isn t working. Because changes in memory and thinking were first noticed in people who d had chemotherapy, the terms chemobrain, or chemofog, are sometimes used to describe them. But these terms may be misleading, as changes in memory and concentration can also happen in people who ve had cancer but who ve never had chemotherapy. Changes in memory or in the ability to concentrate are usually mild and often get better within a year of finishing treatment. But occasionally, they can go on for longer or have more marked effects on daily activities. 37

39 Managing the late effects of breast cancer treatment 38

40 Concentration and memory problems Here are some examples of the difficulties people describe: difficulty concentrating and focusing (feeling foggy) feeling mentally slower than before and finding it hard to take things in forgetting details of conversations or events you d usually have no problem remembering mixing up dates and appointments and not being able to find things easily difficulty doing more than one thing at a time (multitasking) struggling to find everyday words or phrases. If you re having these problems, it s a good idea to talk to your doctor about them. They ll check if your symptoms are connected to any other causes. This can include the cancer itself, or the side effects of other treatments or medicines that you may be taking. Your doctors may decide to do some tests, such as blood tests or a scan, to investigate it further. There may also be other factors contributing to your symptoms and having these treated could help. 39

41 Managing the late effects of breast cancer treatment Early menopause, or going into menopause suddenly because of treatment, may result in similar symptoms or make them worse. You can read more about the menopause and coping with menopausal symptoms on pages Hormonal therapies, such as tamoxifen and aromatase inhibitors (anastrozole, letrozole and exemestane) may also have an effect on memory and concentration. Fatigue (extreme tiredness) is a common side effect of treatment and can cause similar problems with concentration and memory. Managing or treating fatigue may help improve these problems. You can read more about this on pages Anxiety, stress and depression can all cause difficulty with memory and concentration. These symptoms aren t unusual in women who ve had treatment for breast cancer. They can also affect your sleep and make you feel very tired. Treating these symptoms may help to improve memory and concentration. There s more information about emotions on pages If you re in pain or have other symptoms such as feeling sick, it can be difficult to focus on anything else. Having your symptoms treated may help improve problems with concentration. Some painkillers such as morphine can cause drowsiness. If you think the drugs you re taking to control your symptoms are affecting your concentration, let your doctor know. 40

42 Concentration and memory problems Managing concentration and memory problems There are different things you can do to improve your symptoms and help you cope: Use things to help your memory such as planners, calendars, post-it notes or to-do lists. Keep notes of anything important, such as conversations with your doctor or nurse. Try to do one thing at a time. Have a daily routine and try to stick to it. Whenever possible, cut out things that distract you (such as background noise) when you re trying to concentrate on a task. Keep things in the same place. You ll know where they are even if you don t remember putting them there. Put items near the front door beforehand, if you need to take something with you when you leave the house. Use a pill box dispenser if you need to take medicines. Try brain exercises like crosswords, word puzzles or sudoku to help improve your concentration. Try to do simple maths in your head for things like calculating your change. 41

43 Managing the late effects of breast cancer treatment Keep a diary or note of times when concentration problems are more noticeable or worse. You can then plan to do things that require concentration when you re most likely to be at your best. You ll also be able to recognise if there are patterns or triggers that make things worse for you. Look after yourself. Get plenty of rest but try to balance this with regular exercise. Exercise can help with fatigue and sleep problems, so may in turn improve your concentration and memory. Eat a healthy diet with plenty of fruit and vegetables. A healthy diet can help you to feel better and cope with your symptoms. Tell your family and friends about the difficulties you re having. They can support you and help you find ways of making life easier. Find some quiet activities that may help you to wind down and feel less anxious. You could try things like yoga, exercise, meditation, reading and complementary therapies. 42

44 Other physical changes Other physical changes This section looks at other physical changes that may be caused by late effects of treatment. This includes changes to the heart, lungs, bones, and weight gain. Small changes to your lifestyle can help to reduce the risk of these problems and of other health problems. Effects on the heart Some treatments for breast cancer may increase the risk of getting heart problems, usually many years later. You will have been monitored closely during and after treatment to reduce the risk of this happening. Most women won t ever experience any effects on the heart. But it may help to understand more about them and how you can help look after your heart. Chemotherapy, radiotherapy, hormonal treatments, trastuzumab (Herceptin) and early menopause can potentially affect the heart. The standard chemotherapy for early breast cancer usually includes drugs known as anthracyclines (epirubicin or doxorubicin). This is an effective treatment for breast cancer as evidence shows that these drugs are better at reducing the risk of it coming back. In some women, treatment with anthracyclines may result in slight damage to the heart muscle. Because these changes are slight, they usually don t cause any immediately noticeable effects. But, they may lead to an increased risk of heart problems developing much later in life. 43

45 Managing the late effects of breast cancer treatment The most important risk factors for heart problems developing in the future are pre-existing heart disease, including high blood pressure. Women at risk are carefully monitored before and during their treatment to find out if their treatment needs to be changed. And many women who have these drugs won t ever experience heart problems. After radiotherapy to the chest, there is a very small risk of damage to the heart muscle or the major blood vessels around the heart. This is only a potential problem if you ve had cancer in your left breast, as the heart is on the left side of the chest. Radiotherapy is now very carefully planned, so that the heart is either not within the radiation area or only a small amount of the heart will receive any radiation. As a result, the risk of developing any heart problems is now very low. Having an early menopause (pages 19 27) due to your treatment may also increase the risk of heart problems. This is because oestrogen and progesterone help protect the heart. Hormonal drugs, called aromatase inhibitors, may also increase the risk of high cholesterol, which can lead to heart problems. Trastuzumab (Herceptin) can cause changes in the heart, particularly in women who already have heart disease. Because of this, it s not given to women with some types of heart conditions. Tests are done before treatment and women are checked regularly throughout and after treatment. If heart problems occur during treatment with trastuzamab, they are usually temporary, improve with medication and get better after treatment finishes. 44

46 Other physical changes 45

47 Managing the late effects of breast cancer treatment Symptoms We ve included a list of symptoms that can be linked with heart problems. But they can be caused by lots of other things. As problems can occur many years after treatment, you may need to remind your doctor about the cancer treatments you ve had. Let your doctor know if you have any of these symptoms: feeling your heart beating fast, hard or irregularly pain or discomfort in your chest getting breathless, for example when climbing stairs feeling weak or dizzy getting tired very easily swelling of your feet and lower legs. If you have heart problems, your doctor will refer you to a heart specialist (cardiologist). What you can do Making small changes to your lifestyle can reduce your risk of developing heart problems. And, even if you already have problems, small changes can help to reduce your risk of further problems. Look after yourself by keeping physically active, eating a healthy diet, not smoking, reducing your stress and being aware of the dangers of drinking too much. The British Heart Foundation (page 86) has lots of information and advice on keeping your heart healthy. 46

48 Other physical changes Keep physically active This can help your heart health and has other benefits too. It helps you to keep to a healthy weight (pages 57 58) and reduces your risk of bone thinning (osteoporosis). It can reduce stress and improve fatigue and you ll look and feel better. There s also some evidence that regular exercise may help to reduce the risk of breast cancer coming back as well the risk of getting some other cancers. We have a booklet called Physical activity and cancer treatment, which has more information about the benefits of exercise. Eat healthily This helps to protect your heart and keeps your weight healthy as well. Try to eat five portions of fruit and vegetables a day, more chicken and fish (especially oily fish) and high fibre foods. Eat less saturated fats (such as pastries, cakes, cheese), less red and processed meat and cut down on salt. After breast cancer, some women want to know if they should avoid dairy foods or if there s a particular diet they should follow. Studies that have looked for a connection between diets that are high in dairy products and breast cancer haven t shown a clear link. So cancer experts don t recommend following a dairy-free diet. Dairy products are also a good source of calcium, which is important for bone health. There s also a lot of publicity about alternative diets for treating cancer, but there s no evidence that they increase a person s chance of survival. Some of these diets may lack important nutrients or be unbalanced in other ways and may even be harmful. 47