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A practical guide to living with and after cancer side effects of cancer treatment Contents Contents About this booklet 3 What are side effects? 4 Treatment for cancer 5 Changes to bone marrow and blood cell production 7 Hair loss 12 Tiredness (fatigue) 14 Mouth problems 16 Feeling sick (nausea) and being sick (vomiting) 18 Eating problems 20 Bowel changes 24 Skin changes 27 Peripheral neuropathy 29 Lymphoedema 32 Fertility 33 Changes to your sex life 35 Hormonal changes 36 How we can help you 39 Other useful organisations 43 Further resources 47 1 Side effects of cancer treatment 2 About this booklet About this booklet This booklet aims to help you understand more about side effects of cancer treatment. It gives a brief overview of some common side effects that might happen during treatment for cancer. It also suggests ways to help manage them. Everyone’s experience of cancer and its treatment is different. The doctors and nurses at your hospital will discuss in detail with you the treatment you might have, and its possible side effects. We have further information about specific treatments and coping with side effects. We also have information about different types of cancer, and aspects of living with cancer. If you’d like to discuss this information, call the Macmillan support line free on 0800 808 00 00, Monday–Friday, 9am–8pm. If you’re hard of hearing you can use textphone 0808 808 0121, or Text Relay. For non-English speakers, interpreters are available. Alternatively, visit macmillan.org.uk Turn to pages 43–49 for some useful addresses and websites. 3 Side effects of cancer treatment What are side effects? Side effects happen as a direct result of treatment for cancer. They can be mild and temporary. But sometimes they can have a bigger impact on your quality of life. They are different from symptoms you may have experienced before the cancer was diagnosed. The side effects you may have will depend on your treatment. You’ll probably only have a few of the side effects mentioned here. Some people don’t experience any side effects and can feel better during treatment than before diagnosis. Your doctors or nurses will tell you about any side effects you’re likely to have. They’ll also be happy to answer any of your questions if there’s anything you don’t understand. This booklet describes some of the more common physical side effects you might have, and offers some suggestions about how to deal with them. You should always ask your doctor before using any medicines, creams, mouthwashes or dietary supplements. The thought of side effects can be frightening, but there are many different ways to help manage them. Coping with cancer and the side effects of treatment can affect your feelings too. You might find our booklet How are you feeling? useful. 4 Treatment for cancer Treatment for cancer Cancer can be treated in different ways depending on what type of cancer it is, where it is in the body, and whether it has spread (its stage). You may have more than one type of treatment. Your doctors will discuss with you the best treatment for your situation. When planning your treatment, they will take into account your general health as well as the type and stage of the cancer. Some cancers are very slow growing, so treatment may not be needed when the cancer is first diagnosed. Your treatment may include one or more of the following: •• Surgery – This aims to remove a tumour and nearby tissues that may contain cancerous cells. •• Chemotherapy – The use of cytotoxic (anti-cancer) drugs to destroy cancer cells. •• Radiotherapy – The use of high energy x-rays and similar rays (such as electrons) to treat disease. •• Hormonal therapies – These alter the way particular hormones are produced or work in the body. •• Biological therapies – This term covers a number of treatments that work in a variety of ways. These include using the body’s immune system to destroy cancer cells, or blocking cancer cell growth. 5 Side effects of cancer treatment There are also some other types of treatment, which are used less commonly. Your doctor will explain these to you if they are suitable for your situation. Treatment affects each person differently, and many people experience some side effects during treatment. In the following sections, we outline some common side effects of cancer treatment and some ways you may be able to manage them. 6 Changes to bone marrow and blood cell production Changes to bone marrow and blood cell production Chemotherapy, radiotherapy and biological therapies can all affect your bone marrow and blood. The marrow inside your bones produces stem cells, which develop into the three different types of blood cell: red blood cells, white blood cells and platelets. Some cancer treatments can affect the production of these cells in the bone marrow, and so reduce the number of cells in the blood. This is temporary and your blood cells will recover between treatments. If you’re having treatment that may affect the bone marrow, you’ll have regular blood tests to monitor this. Risk of infection (low number of white blood cells) The immune system is the body’s defence against causes of infection, such as bacteria and viruses. It’s very complex and has to work properly to protect us from infections. Cancer and its treatment can affect the immune system in a number of ways. White blood cells fight infection. If a treatment reduces the number of white blood cells in your blood, this can put you at a greater risk of getting an infection. Surgery can make you more prone to infection because it involves making a break in the skin or mucous membranes, which are part of the body’s natural defences. Radiotherapy often has a mild and temporary effect on the immune system. 7 Side effects of cancer treatment Chemotherapy can often have a major effect on the immune system, and may reduce the body’s defences against infection for some months, both during and after treatment. This is because chemotherapy reduces the production of white blood cells by the bone marrow. People having chemotherapy are at risk of developing infections at any time during the treatment, but are particularly at risk of picking up infections 7–14 days after the chemotherapy treatment. This is when the level of white blood cells is at its lowest. This time is known as the nadir, and it can vary slightly depending upon the chemotherapy drug, or combination of drugs, used. Infections can usually be effectively treated with antibiotics. If an infection is not treated quickly, it can be much more difficult to get it under control. We have a slide show on our website about how to avoid infections during chemotherapy treatment. You can watch this at macmillan.org.uk/avoidinginfection What you can do: •• You must contact the hospital straight away if your temperature goes above 38°C (100.4°F) or if you suddenly feel unwell, even with a normal temperature. •• Keep away from crowded places and people you know to have an infection as much as you can. •• Always wash your hands before preparing food. •• Speak to your doctor or nurse about any foods you should avoid during treatment. This may include paté, uncooked seafood and unpasteurised dairy products that might contain bacteria, as these could make you unwell. 8 Changes to bone marrow and blood cell production Anaemia (low number of red blood cells) Some chemotherapy drugs, biological therapies or radiotherapy, especially if aimed at the spine or pelvic areas, can reduce the number of red blood cells. Red blood cells contain haemoglobin (Hb), which carries oxygen around the body. If you have a shortage of red blood cells, you will have anaemia. This can make you feel tired and lethargic. You may also feel breathless, as there is less oxygen being carried around your body. People with anaemia can feel dizzy and light-headed, and have aching muscles and joints. You will have blood tests to measure your haemoglobin level. If it’s low, you may be offered a blood transfusion. The extra red blood cells in the transfusion will pick up oxygen from your lungs and take it around the body. This should make you feel more energetic and ease your breathlessness. Bruising and bleeding (low number of platelets) Platelets help the blood to clot. If you have a low number of platelets in your blood, you may bruise easily, have nosebleeds, bleeding gums, and bleed more heavily than usual from minor cuts or grazes. You may develop a rash of small red or purple spots just beneath the skin, anywhere on the body, where blood has leaked out of a nearby blood vessel. This is known as a petechial rash. You should contact your doctor or the hospital straight away if you develop any of these side effects. You may have to go to hospital for a platelet transfusion. This is given through a drip (infusion). The platelets will start working immediately to prevent bruising and bleeding. 9 Side effects of cancer treatment What you can do: •• Take care to avoid injury, for example by wearing gloves if you are gardening. •• Use a soft toothbrush when brushing your teeth. •• Tell your doctor if you have any nosebleeds, bleeding gums, blood spots or rashes on the skin. 10 Side effects of cancer treatment 11 Side effects of cancer treatment Hair loss Some chemotherapy drugs can cause hair loss or hair thinning. Hormonal therapies can also affect your hair. Radiotherapy causes hair loss in the targeted treatment area. If you’re having treatment with certain chemotherapy drugs, your hair may fall out. Your hair may become brittle and start breaking off near the scalp. This can be very upsetting. You may also lose your body hair, eyelashes or eyebrows. If you lose nasal hairs, you may have a runny nose. The hospital staff will tell you if you’re likely to lose your hair as a result of treatment. They will also be able to arrange a wig for you if you’d like one. You may be entitled to a free wig – your nurse can tell you more about this. Your hair will usually grow back over a few months, after you’ve finished treatment. Radiotherapy can cause hair loss in the treatment area – where the radiation beam enters the body, and sometimes where the beam exits as well. The hair should grow back after your treatment, although this will depend on the dose of radiotherapy you’ve had. 12 Hair loss What you can do: •• Have your hair cut short before your chemotherapy treatment starts, (if your doctor confirms that the treatment is likely to cause hair loss). The weight of long hair pulls on the scalp and may make your hair fall out sooner. •• Brush your hair gently with a soft brush, and avoid using hairdryers, tongs and straighteners. •• Use gentle hair products and avoid perming or colouring your hair. •• Instead of a wig, you could wear a hat, turban or scarf. If you decide not to cover your head, remember to use a high protection factor sun cream (at least factor 30) on your scalp when you go out, even when it’s cloudy outside. •• Some Toni&Guy salons have specially trained stylists who can advise you on how to care for your hair during and after treatment. •• Scalp cooling is a method of reducing hair loss that may be helpful for some people being treated with particular chemotherapy drugs. You can ask your doctor or nurse if it’s available at your hospital. We have a video on our website about coping with hair loss. You can watch this at macmillan.org.uk/hairloss 13 Side effects of cancer treatment Tiredness (fatigue) Fatigue is a general feeling of extreme tiredness. Having a good night’s sleep doesn’t usually help. It can affect your everyday life, meaning that even simple tasks can feel exhausting and that it’s difficult to concentrate on anything. Chemotherapy, radiotherapy, surgery, biological therapies and hormonal therapies can all cause fatigue. Sometimes, other side effects of the treatment can lead to fatigue – for example if you’re not eating enough because of a sore mouth (see page 17) or if your treatment is causing anaemia (see page 9). What you can do: •• Speak to your doctor or nurse if you’re feeling tired all the time. They can check the cause of your tiredness. •• Try to cut down on unnecessary tasks, and ask family and friends to help you out. •• If you have a big task to do, try to break it down into shorter, more manageable ones so you can rest in between. •• Do necessary tasks at times when you have the most energy. Prepare meals in advance and keep prepared food in the freezer, ready to heat up. •• Try to do a little light exercise, such as going for a walk, as it may actually make you feel less tired. •• Try to keep to a regular sleep routine. We have a video on our website about coping with fatigue. You can watch this at macmillan.org.uk/fatigue 14 Side effects of cancer treatment 15 Side effects of cancer treatment Mouth problems Radiotherapy can cause your mouth to become dry, while chemotherapy, radiotherapy and some biological treatments can make your mouth sore and prone to mouth ulcers. Dry mouth Radiotherapy treatment to the head and neck can cause the glands in the mouth to produce less saliva. This can be temporary or permanent. What you can do: •• Speak to your doctor, who may be able to prescribe drugs that can help stimulate the production of saliva. •• Keep your mouth clean. Brush your teeth with a soft toothbrush after every meal. You should also have regular dental checks, as lack of saliva can increase the risk of tooth decay. •• Keep your mouth moist – sip water or sugar-free drinks regularly. Some people find sucking on ice soothing. •• Try using an artificial saliva product to moisten your mouth. •• Try chewing sugar-free gum or sucking on sugar-free sweets to encourage saliva production. •• Avoid alcohol, caffeine and cigarettes, as these can dry your mouth even more. 16 Mouth problems Sore mouth and ulcers The lining of the mouth can become sore and ulcers may develop. This is quite common with some of the newer biological therapies. If this happens, you are more likely to get a mouth infection. The most common infection is oral thrush, which usually appears as white patches or a white coating over the lining of the mouth and the tongue. What you can do: •• Clean your teeth gently at least twice a day with a soft-bristled or children’s toothbrush. Try children’s toothpaste if your usual brand is stinging your mouth. •• Change your toothbrush regularly. •• Use a mouthwash prescribed by your doctor or given to you at the hospital – your doctors and nurses at the hospital will advise you on what you should and shouldn’t use. •• Drink plenty of liquid (at least three pints a day if possible). •• Eat soft, moist foods and avoid neat spirits, tobacco and spicy foods. •• Use Vaseline® or a flavoured lip balm to keep your mouth moist. •• Tell your doctors if you have a sore mouth and if it gets worse – you may have an infection, which will need treatment. We have a slide show on our website about mouth care during chemotherapy. You can watch this at macmillan. org.uk/mouthcare 17 Side effects of cancer treatment Feeling sick (nausea) or being sick (vomiting) Chemotherapy, radiotherapy, biological therapies and hormonal therapies can all make you feel sick (nausea) or be sick (vomit). Your hospital doctors will usually prescribe anti-sickness medicines for you if nausea and vomiting are possible side effects of your treatment. Often, a combination of more than one type of anti-sickness drug is used. If one medicine doesn’t work, tell your doctor. There are different types of anti-sickness medicines, and some may work better for you than others. There are very effective ways to help control and prevent sickness. What you can do: •• Try to avoid greasy, fatty and fried foods. •• Eat little and often. •• Chew your food well. •• Try food or drinks that contain ginger. •• You could try wearing sea bands (available from chemists) around your wrists – they use acupressure to help relieve nausea. •• If the smell of cooking puts you off food, try eating food that’s cold or at room temperature instead. You could also ask someone else to cook for you. 18 Feeling sick (nausea) or being sick (vomiting) •• Try eating peppermints or drinking peppermint tea. •• Try sitting by an open window, so there’s plenty of fresh air in the room while you eat. •• Sit at a table in an upright position when eating, and remain sitting for a short time after the meal. 19 Side effects of cancer treatment Eating problems Chemotherapy, radiotherapy, biological therapies and hormonal therapies can all cause eating problems. As well as the side effects already mentioned, you may have other symptoms that make eating difficult or uncomfortable. These include: Loss of appetite You may just not feel like eating, or you may feel very sick or too tired to eat. What you can do: •• Add extra calories and protein to your food. Butter, cream, and full-fat milk will all add calories without meaning you have to eat more. •• Eat little and often. •• If you can’t face food, try having a nourishing drink, such as a fruit smoothie or milkshake, instead. •• Try powders, drinks or ready-to-use supplements. Some supplements are available from your chemist and others on prescription. •• Tell your doctor or nurses if you have lost your appetite – they can refer you to a dietitian or prescribe nutritional supplements for you. We have a slide show on our website about things you can do to help if you’ve lost your appetite. You can watch this at macmillan.org.uk/poorappetite 20 Eating problems Change in taste You may find that your sense of taste changes. Food may have a metallic taste, a different texture or no flavour at all. What you can do: •• Try using seasonings, spices and marinades to enhance the flavour of food. •• Try eating cold foods as they may taste better than hot foods. •• Use plastic cutlery if you’ve developed a metallic taste. •• Drink herbal or fruit teas if you go off tea and coffee. •• Sharp-tasting foods, such as lemon and fruit juices, may leave a pleasant taste in your mouth. Swallowing problems Chemotherapy and radiotherapy treatments for head or neck cancers can affect the healthy cells in the lining of the throat. This can make it painful to chew or swallow. What you can do: •• Where possible, keep eating your favourite foods, but make changes to soften them. For example: cover foods in tasty sauces and gravies; finely chop meat and vegetables, and casserole or stew them; and cut the crusts off bread for softer sandwiches. If you have a blender, you could blend or liquidise cooked foods. 21 Side effects of cancer treatment •• Let your doctor or dietitian know if you’re having difficulty swallowing. They can advise you on making changes to your diet to ensure you’re getting enough calories every day. •• There are several shop-bought products that you may find helpful. You can get these products from your chemist. Your doctor or dietitian may give you a prescription for some of them. We have a booklet with more information on coping with eating problems, which we can send you. 22 Side effects of cancer Eating treatment problems 23 Side effects of cancer treatment Bowel changes Chemotherapy, radiotherapy, hormonal therapies and biological therapies can all cause bowel changes, such as constipation or diarrhoea. Constipation Constipation is a common problem, but many people find it embarrassing to discuss. Loss of appetite, poorly controlled pain and nausea can all lead to constipation. A lack of fibre (roughage) in your diet, low fluid intake and being less mobile can also contribute. Some medicines can cause constipation, particularly the painkillers morphine and codeine, and some of the anti-sickness drugs used during chemotherapy. If you’re taking regular painkillers, you may need a laxative to help prevent constipation. Everyone’s normal bowel pattern is different, but as a general guide you should let your doctor or nurse know if you’ve not had a bowel movement for three days, unless this is usual for you. What you can do: •• Try to include plenty of fibre in your diet. Good sources of fibre include: wholegrain breakfast cereals; porridge; muesli; wholemeal bread and flour; brown rice; wholemeal pasta; and fresh fruit and vegetables with their skins on. •• Drink plenty of fluids. Aim to drink at least two litres (three and a half pints) of fluid a day. •• Natural remedies for constipation include apricots, prunes, prune juice and syrup of figs. 24 Bowel changes •• Gentle exercise will help keep your bowels moving. •• Flaxseed (linseed) can help ease constipation and soften stools. One teaspoon or dessertspoon of the seeds can be taken daily with a glass of water. If you have cancer of the gullet (oesophagus) or bowel, ask your doctor before taking fibre or linseed. Diarrhoea Diarrhoea may be a side effect of cancer treatments, such as chemotherapy or radiotherapy to the pelvis. Infections can also cause diarrhoea. Some medicines can cause diarrhoea, and some cancers may prevent food from being absorbed properly from the bowel, causing diarrhoea. Sometimes, severe constipation can be mistaken for diarrhoea – when the bowel is blocked by constipation, liquid stool (faeces) passes around the solid faeces (sometimes called overflow), so it may seem as though you have diarrhoea. What you can do: •• Cut down on your fibre intake from cereals, fruit and vegetables. Eat peeled and cooked fruit and vegetables instead of raw ones. •• Avoid milk and dairy products, such as cheese, until the diarrhoea has stopped. •• Drink plenty of fluids to replace the water lost with diarrhoea, but avoid alcohol and coffee. Also avoid fizzy drinks, which can cause wind and stomach cramps. •• Eat small, frequent meals made from light foods, such as white fish, chicken, eggs (well cooked), white bread, pasta and rice. 25 Side effects of cancer treatment •• Avoid highly spiced or fatty foods. •• Eat your meals slowly. •• If the diarrhoea continues for more than two days, tell your doctor. They can investigate the cause and prescribe some anti-diarrhoea medicines for you. •• Acidophilus or other bacteria found in live yoghurt or live yoghurt drinks may help ease diarrhoea caused by antibiotics. Antibiotics can kill off the healthy bacteria normally found in the bowel, but the bacteria found in live yoghurt may replace them. However, you should avoid live yoghurt while you’re having chemotherapy or if your immunity is low. •• If you have ongoing problems with diarrhoea, knowing you may need to get to a toilet quickly can make going out a source of worry and embarrassment. The National Key Scheme (NKS), for people with continence problems, allows you to use about 9,000 locked public toilets in the UK. Visit radar.org.uk or call 020 7250 3222 for more information about the scheme. Diarrhoea caused by radiotherapy Diarrhoea is a common side effect of radiotherapy to the pelvis, and your doctor will prescribe medicine to help with it. If you have diarrhoea caused by radiotherapy, changing your diet is unlikely to help, and it’s important that you take the antidiarrhoea medicines prescribed by your doctor. We have more information about the possible effects of pelvic radiotherapy, which we can send you. 26 Skin changes Skin changes Chemotherapy, radiotherapy, biological therapies and hormonal therapies can cause a variety of skin problems. Depending on your treatment and how you react to it, you may experience some of the following symptoms: Dry or discoloured skin (caused by chemotherapy) What you can do: •• Try using a moisturising cream, but if you’re having radiotherapy as well as chemotherapy, check with your doctor or radiographer before using it. •• Use an electric razor instead of wet shaving, to minimise the risk of cuts. Increased sensitivity to sunlight (caused by chemotherapy and radiotherapy) What you can do: •• Make sure you’re protected if you go out in the sun. You should use a sun cream with a high sun protection factor (SPF) – at least factor 30. Also wear a hat or scarf on your head, and wear loose clothes made of cotton or other natural fibres. 27 Side effects of cancer treatment Red or sore skin (if you have light skin) or darker skin with a blue or black tinge (if your skin is dark) (caused by radiotherapy) What you can do: •• Only use unperfumed soaps and creams. •• Don’t use any creams or dressings unless prescribed or recommended by your specialist or radiographer. They may suggest using an aqueous cream, aloe vera or arnica. Rashes or itching (caused by some biological and hormonal therapies) What you can do: •• Speak to your doctor or nurse, who can prescribe medicines or recommend creams to help. Sore skin on the palms of your hands and the soles of your feet (caused by some chemotherapy drugs and biological therapies) What you can do: •• Let your specialist know as soon as this develops, as they may need to adjust your treatment. 28 Peripheral neuropathy Peripheral neuropathy Some chemotherapy drugs and some surgery can cause numbness or tingling in the hands or feet. This is a symptom of peripheral neuropathy. Peripheral neuropathy is a term used to describe damage to nerves that are outside the brain and spinal cord – the peripheral nerves. Rarely, radiotherapy may damage nerves within the treated area, causing symptoms such as numbness and weakness. These may develop months or years after treatment. Tell your doctor if you notice any numbness or tingling in your hands or feet. You may also notice that you have difficulty doing up buttons or similar fiddly tasks. It’s important to let your doctor know if you have these symptoms, as they may be controlled by slightly lowering the dose of the drug. This side effect usually improves slowly, a few months after the treatment has finished. If these symptoms continue for longer, talk to your doctor. What you can do: If your hands or feet are affected, it’s important to protect them as much as possible. •• Keep them warm by wearing gloves and warm socks in cold weather. •• Wear gloves when working with your hands – for example, when gardening or washing up. •• Use pot holders and take care to avoid burning your hands when cooking. 29 Side effects of cancer treatment •• Wear well-fitting shoes or boots. •• Avoid walking around barefoot, and check your feet regularly for any problems. •• Test the temperature of water with your elbow to make sure it isn’t too hot before baths, showers or doing the washing-up. If your balance, coordination or walking is affected, you may be at more risk of accidents and falls. •• Keep areas that you walk through, such as halls, free of clutter and things you could trip over, like loose rugs. •• Get advice from a physiotherapist about walking aids if your balance is affected. If you feel lightheaded or dizzy when you stand up due to problems with your blood pressure (postural hypertension), your GP can give you advice on this. You could also: •• Ask your GP to prescribe you support stockings to wear during the day. These improve circulation and can help your symptoms. •• Do leg exercises, such as moving your feet up and down at the ankle and some gentle marching on the spot, before you stand up. •• Stand up more slowly, as this gives your body more time to adjust to the change in position. •• Drink plenty of fluids. Being dehydrated (dry) can make your symptoms worse. •• If you begin to feel lightheaded or dizzy, stop what you’re doing and sit or lie down if possible. Drink some water. 30 Side effects of cancer treatment 31 Side effects of cancer treatment Lymphoedema Lymphoedema is swelling that develops because of a build-up of a fluid called lymph in the body’s tissues. It usually affects an arm or leg, but can sometimes also affect other parts of the body. It can develop if lymph nodes (sometimes called glands) have been removed by surgery, damaged by radiotherapy, or if a cancer is blocking them. Lymphoedema can be reduced and the swelling can often be kept to a minimum, particularly when it’s diagnosed early. But it’s a condition that never goes away because the causes can’t be reversed. What you can do (with the help of a clinical nurse specialist or physiotherapist): •• Take good care of your skin to help prevent injury and infection. •• Learn how positioning and moving your limb can help drain fluid. •• Compress the limb or area using compression garments, such as sleeves, stockings, special bras or compression bandages. •• Do some gentle exercise and keep active, as this can improve the flow of lymph. •• Discuss specialised massage (manual lymphatic drainage, MLD), or self massage with your specialist nurse, radiographer or physiotherapist. These can help shift fluid that’s built up. •• Ask to be referred to your nearest lymphoedema clinic. 32 Fertility We have several videos on our website about coping with lymphoedema. You can watch these videos at macmillan.org.uk/lymphoedema Fertility Chemotherapy, radiotherapy, surgery, biological therapies and hormonal therapies can all affect fertility. Being told that you have cancer and that treatment may make you infertile can be very difficult to come to terms with. The prospect of losing your fertility can be overwhelming, no matter whether or not you already have children or whether you have considered having them before. Your doctor or specialist nurse will talk to you about the risk of infertility before your treatment starts. It may also be helpful to discuss whether there’s anything that can be done to reduce the effects of treatment on your fertility. In men, cancer treatments can stop the production of sperm, affect the production of testosterone, or damage the nerves or blood vessels in the pelvic area. In women, some treatments can stop hormone production (causing periods to stop temporarily), while other treatments can cause an early menopause. In some cases, effects on fertility will be temporary, but in others they will be permanent. 33 Side effects of cancer treatment What you can do: •• Speak to your doctor or specialist nurse before treatment starts about how your fertility might be affected. •• There is a lot of practical and emotional help available (see pages 45–46). •• You may be able to store sperm, eggs or embryos for future fertility treatment. If this is appropriate, a referral will be made to the specialist fertility team for you (and your partner, if you have one). •• Counselling can be arranged if you think this would help. We have further information about fertility issues for men and women, which we can send you. 34 Changes to your sex life Changes to your sex life Chemotherapy, radiotherapy, surgery and hormonal therapies can all have an effect on your sex life. Cancer treatment can affect your sex life in many different ways. Both men and women may find that their feelings about themselves and how they look affect their attitude to sex. For example, some surgery can affect how you look, which may affect your confidence. You might find that pain or fatigue leave you with a lowered sex drive. Some treatments will affect how your body functions (for example, women may find their vagina becomes drier or narrower, or men may be unable to get or maintain an erection). These side effects may affect your physical ability to have sex. What you can do: •• There are many different ways to enjoy intimacy, and talking with your partner can help you find ways that work for both of you. You may wish to spend some time cuddling and touching, and exploring new ways to give each other pleasure. •• It can feel embarrassing to talk to your doctor or specialist nurse about such a personal issue as sex, but it can be helpful. There are many ways of helping with sexuality problems resulting from cancer or its treatment – for example counselling, medication and practical solutions. If you don’t want to talk to anyone face-to-face, there are confidential helplines that can help (see pages 45–46). 35 Side effects of cancer treatment Hormonal changes Some treatments for certain cancers can cause hormonal symptoms. Surgery to the pelvic area, radiotherapy to the pelvic area, chemotherapy and hormonal therapies may all cause these symptoms. Some women may experience an early menopause as a result of treatment. Men can also experience hormonal symptoms. Your doctors will explain beforehand if you’re likely to have hormonal symptoms. Hormonal effects may be temporary or permanent. Symptoms can include: •• hot flushes and sweats •• breast tenderness (in men) •• weight gain •• bone thinning •• lowered sex drive •• impotence (in men) •• menstrual changes (in women). While they can be distressing, there are ways to help manage these symptoms. 36 Hormonal changes What you can do: •• Wear layers of light clothing, so that you can adjust them to deal with hot flushes and sweats. •• Use layers of bed linen, so you can adjust them during the night to deal with hot flushes and sweats. •• Have lukewarm baths and showers rather than hot ones. •• Some complementary therapies can help ease symptoms. But it’s important to check with your doctor before using any complementary therapies. •• For men, there are a number of medicines and devices that can help deal with impotence. Talk to your doctors about what may be most suitable for you. •• For women, there may be medicines that can help manage menopausal symptoms. Hormone replacement therapy (HRT) may be prescribed for some women, but this is not suitable for everyone. 37 Side effects of cancer treatment 38 How we can help you How we can help you Cancer is the toughest fight most of us will ever face. But you don’t have to go through it alone. The Macmillan team is with you every step of the way. Get in touch Macmillan Support Line Our free, confidential phone Macmillan Cancer Support line is open Monday–Friday, 89 Albert Embankment, 9am–8pm. Our cancer London SE1 7UQ support specialists provide Questions about cancer? clinical, financial, emotional Call free on 0808 808 00 00 and practical information and (Mon–Fri, 9am–8pm) support to anyone affected by www.macmillan.org.uk cancer. Call us on 0808 808 Hard of hearing? 00 00 or email us via our Use textphone website, macmillan.org.uk/ 0808 808 0121 or Text Relay. talktous Non-English speaker? Information centres Interpreters are available. Our information and support Clear, reliable information centres are based in hospitals, about cancer libraries and mobile centres, and offer you the opportunity We can help you by phone, to speak with someone email, via our website and face-to-face. Find your nearest publications or in person. one at macmillan.org.uk/ And our information is free to informationcentres everyone affected by cancer. 39 Side effects of cancer treatment Publications We provide expert, up-to-date information about different types of cancer, tests and treatments, and information about living with and after cancer. We can send you free information in a variety of formats, including booklets, leaflets, fact sheets, and audio CDs. We can also provide our information in Braille and large print. Need out-of-hours support? You can find a lot of information on our website, macmillan.org.uk For medical attention out of hours, please contact your GP for their out-of-hours service. Someone to talk to When you or someone you know has cancer, it can be difficult to talk about how you’re feeling. You can call our cancer support specialists You can find all of our information, along with several to talk about how you feel and what’s worrying you. videos, online at macmillan. org.uk/cancerinformation We can also help you find support in your local area, Review our information so you can speak face-to-face Help us make our resources even better for people affected with people who understand what you’re going through. by cancer. Being one of our reviewers gives you the chance to comment on a variety of information including booklets, fact sheets, leaflets, videos, illustrations and website text. 40 How we can help you Professional help Support for each other Our Macmillan nurses, doctors and other health and social care professionals offer expert treatment and care. They help individuals and families deal with cancer from diagnosis onwards, until they no longer need this help. No one knows more about the impact cancer has on a person’s life than those who have been affected by it themselves. That’s why we help to bring people with cancer and carers together in their communities and online. You can ask your GP, hospital consultant, district nurse or hospital ward sister if there are any Macmillan professionals available in your area, or call us. Support groups You can find out about support groups in your area by calling us or by visiting macmillan. org.uk/selfhelpandsupport Online community You can also share your experiences, ask questions, get and give support to others in our online community at macmillan. org.uk/community 41 Side effects of cancer treatment Financial and work-related support heating bills, extra clothing, or a much-needed break. Having cancer can bring extra costs, such as hospital parking, travel fares and higher heating bills. Some people may have to stop working. Find out more about the financial and work-related support we can offer at macmillan.org.uk/ financialsupport If you’ve been affected in this way, we can help. Call the Macmillan Support Line and one of our cancer support specialists will tell you about the benefits and other financial help you may be entitled to. Learning about cancer You may find it useful to learn more about cancer and how to manage the impact it can have on your life. You can do this online on our Learn Zone – macmillan.org. uk/learnzone – which offers We can also give you information about your rights a variety of e-learning courses and workshops. There’s at work as an employee, and help you find further support. also a section dedicated to supporting people with cancer – ideal for people who want Macmillan Grants to learn more about what Money worries are the last thing you need when you have their relative or friend is going through. cancer. A Macmillan Grant is a one-off payment for people with cancer, to cover a variety of practical needs, including 42 Other useful organisations Other useful organisations General cancer and support organisations Cancer Black Care 79 Acton Lane, London NW10 8UT Tel 020 8961 4151 (Mon–Fri, 9.30am–4.30pm) Email [email protected] www.cancerblackcare. org.uk Offers a variety of information and support for people with cancer from ethnic communities, their families, carers and friends. Welcomes people from different ethnic groups including African, Asian, Turkish and AfricanCaribbean communities. Cancer Support Scotland (Tak Tent) Flat 5, 30 Shelley Court, Gartnavel Complex, Glasgow G12 0YN Tel 0141 211 0122 Email info@ cancersupportscotland.org www.cancersupport scotland.org Offers information and support to people with cancer, families, friends, and healthcare professionals. Runs a network of support groups across Scotland. Irish Cancer Society 43–45 Northumberland Road, Dublin 4, Ireland Cancer Helpline 1800 200 700 (Mon–Thurs, 9am–7pm, Fri, 9am–5pm) Email [email protected] www.cancer.ie Operates Ireland’s only freephone cancer helpline, which is staffed by nurses trained in cancer care. Maggie’s Cancer Caring Centres 8 Newton Place, Glasgow G3 7PR Tel 0300 123 1801 Email enquiries@ maggiescentres.org www.maggiescentres.org Maggie’s Centres offer free, 43 Side effects of cancer treatment comprehensive support for anyone affected by cancer. You can access information, benefits advice, and emotional or psychological support. support network and raises funds to build teenage cancer units in hospitals. Tenovus 9th Floor, Gleider House, Ty Glas Road, Llanishen, Marie Curie Cancer Care Cardiff CF14 5BD 89 Albert Embankment, Freephone helpline London SE1 7TP 0808 808 1010 Freephone 0800 716 146 Tel 020 7599 7777 (England) Tel 029 2076 8850 0131 561 3900 (Scotland) Email [email protected] 01495 740 888 (Wales) www.tenovus.org.uk 028 9088 2060 (NI) Provides a variety of Email [email protected] services to people with www.mariecurie.org.uk cancer and their families, Marie Curie nurses provide including counselling and free end-of-life care to people a freephone cancer helpline. with cancer in their own homes, 24 hours a day, The Ulster Cancer 365 days a year. There are Foundation Marie Curie hospices across 40–44 Eglantine Avenue, the UK. Belfast BT9 6DX Freephone helpline Teenage Cancer Trust 0800 783 3339 93 Newman Street, Helpline email London W1T 3EZ [email protected] Tel 020 7612 0370 Tel 028 9066 3281 Email from the website Email [email protected] www.teenagecancer www.ulstercancer.org trust.org Provides a variety of services Dedicated to improving the for people with cancer and lives of teenagers and young their families, including a free adults with cancer. Runs a telephone helpline, which is 44 Other useful organisations staffed by specially trained nurses with experience in cancer care. Counselling and emotional support British Association for Counselling and Psychotherapy (BACP) BACP House, 15 St John’s Business Park, Lutterworth LE17 4HB Tel 01455 883 300 Email [email protected] www.bacp.co.uk and www.itsgoodtotalk.org.uk Promotes awareness and availability of counselling, and signposts people to appropriate services. Has a database on the website where you can search for a qualified counsellor. Cancer Counselling Trust Ground Floor, Edward House, 2 Wakley Street, London EC1V 7LT Tel 020 7843 2292 Email [email protected] www.cancercounselling. org.uk Qualified counsellors and psychotherapists offer free, confidential counselling to cancer patients, as well as couples or families affected by cancer. Relationships, sex and fertility organisations Infertility Network UK Charter House, 43 St Leonard’s Road, Bexhill-on-Sea TN40 1JA Tel 0800 008 7464 Email admin@ infertilitynetworkuk.com www.infertilitynetwork uk.com A national charity that provides information, support, telephone counselling and helpful contacts for people with fertility difficulties. Relate Premier House, Carolina Court, Lakeside, Doncaster DN4 5RA Tel 0300 100 1234 www.relate.org.uk Offers advice, relationship counselling, sex therapy, workshops, mediation, consultations and support – 45 Side effects of cancer treatment face-to-face, by phone and through the website. Relationships Scotland 18 York Place, Edinburgh EH1 3EP Tel 0845 119 2020 www.relationshipsscotland.org.uk Provides relationship counselling, sex and relationship therapy and family support. The College of Sexual and Relationship Therapists (COSRT) PO Box 13686, London SW20 9ZH Tel 020 8543 2707 Email [email protected] www.cosrt.org.uk A national specialist charity for sex and relationship therapy. Has a list of qualified practitioners and clinics providing sex or relationship therapy in the UK. 46 The Institute of Psychosexual Medicine 12 Chandos Street, Cavendish Square, London W1G 9DR Tel 020 7580 0631 Email [email protected] www.ipm.org.uk Has a comprehensive list of doctors throughout the country who are trained in psychosexual medicine. The Sexual Advice Association (formerly the Sexual Dysfunction Association) Suite 301, Emblem House, London Bridge Hospital, 27 Tooley Street, London SE1 2PR Helpline 020 7486 7262 (Mon, Weds, Fri, 9am–5pm) Email info@ sexualadviceassociation.co.uk www.sda.uk.net A charity that aims to improve people’s sexual health and well-being, and to raise awareness of how sexual conditions affect the general population. Further resources Further resources Related Macmillan information You may want to order some of our other information mentioned in this booklet. This includes: •• Cancer and fertility – information for men •• Cancer and fertility – information for women •• Understanding lymphoedema •• Understanding radiotherapy To order, visit be.macmillan. org.uk To order fact sheets, call 0808 808 00 00. All of our information is also available online at macmillan. org.uk/cancerinformation Helpful books •• Coping with fatigue •• •• •• •• •• •• 100 questions and answers about cancer symptoms and Coping with hair loss cancer treatment side effects Eating problems and cancer Kelvin JF & Tyson LB, Jones and Bartlett Publishers, 2011, How are you feeling? £12.99 Managing the late effects of Written by cancer professionals and featuring comments from pelvic radiotherapy in men patients, this guide provides Managing the late effects information to help you of pelvic radiotherapy understand the disease and in women manage treatment side effects. Sexuality and cancer •• Understanding chemotherapy 47 Side effects of cancer treatment Anni’s cancer companion: An A–Z of treatments, therapies and healing Matthews A, Singing Dragon (Jessica Kingsley Publishers), 2011, £9.99 A guide to making sense and use of the orthodox treatments, complementary therapies, and psychological, spiritual and holistic options available. Macmillan audio resources Our high-quality audio materials, based on our variety of booklets, include information about cancer types, different treatments and living with cancer. To order your free CD visit be.macmillan.org.uk or call 0808 808 00 00. Macmillan videos There are many videos on the Macmillan website featuring real-life stories and information from health and social care professionals. 48 Useful websites A lot of information about cancer is available on the internet. Some websites are excellent, others have misleading or out-of-date information. The sites listed here are considered by nurses and doctors to contain accurate information and are regularly updated. Macmillan Cancer Support www.macmillan.org.uk Find out more about living with the practical, emotional and financial effects of cancer. Our website contains expert, accurate and up-to-date information on cancer and its treatments, including: •• our 100+ booklets, 350+ fact sheets and videos featuring real-life stories from people affected by cancer and information from medical professionals •• how Macmillan can help, the services we offer and where to get support Further resources •• how to contact our cancer support specialists, including an email form to send your questions •• local support groups search, links to other cancer organisations and a directory of information materials •• a huge online community of people affected by cancer sharing their experiences, advice and support. www.cancerhelp.org.uk (Cancer Research UK) Contains patient information on all types of cancer and has a clinical trials database. www.cancer.gov (National Cancer Institute – National Institute of Health – USA) Gives information on cancer and treatments. www.healthtalkonline.org www.youthhealthtalk.org (site for young people) Both websites contain information about some cancers and have video and audio clips of people talking about their experiences of cancer and its treatments. www.nhs.uk (NHS Choices) NHS Choices is the online ‘front door’ to the NHS. It is the country’s biggest health website and gives all the information you need to make choices about your health. www.nhsdirect.nhs.uk (NHS Direct Online) NHS health information site for England – covers all aspects of health, illness and treatments. www.nhsdirect.wales. nhs.uk (NHS Direct Wales) www.nhs24.com (NHS 24 in Scotland) www.n-i.nhs.uk (Health and Social Care in Northern Ireland) www.patient.co.uk (Patient UK) Provides non-medical people in the UK with information about health and disease. 49 Side effects of cancer treatment Disclaimer We make every effort to ensure that the information we provide is accurate, but it should not be relied upon to reflect the current state of medical research, which is constantly changing. If you are concerned about your health, you should consult a doctor. Macmillan cannot accept liability for any loss or damage resulting from any inaccuracy in this information or third-party information, such as information on websites to which we link. We feature real-life stories in all of our articles. Some photographs are of models. Thanks This booklet has been revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been approved by our medical editor, Dr Terry Priestman, Consultant Clinical Oncologist. With thanks to: Dr David Gilligan, Consultant Oncologist; Alison Keen, Interim Head of Cancer Nursing; Jenny King, Chemotherapy Nurse Specialist; Dr Nick Reed, Consultant Clinical Oncologist; and the people affected by cancer who reviewed this edition. Sources Dougherty & Lister (eds). The Royal Marsden Hospital Manual of Clinical Nursing Procedures. 7th edition. Wiley-Blackwell, 2010. Eating hints before, during and after cancer treatment. National Cancer Institute, 2011. Olver (ed). The MASCC Textbook of Cancer Supportive Care and Survivorship. Springer, 2011. Supportive and palliative care for people with cancer. National Institute for Health and Clinical Excellence (NICE), 2004. Tobias & Hochhauser. Cancer and its management. Wiley and Blackwell, 2010. Yarbro et al. Cancer symptom management. 3rd edition. Jones and Bartlett Publishers, 2004. 50 Can you do something to help? We hope this booklet has been useful to you. It’s just one of our many publications that are available free to anyone affected by cancer. They’re produced by our cancer information specialists who, along with our nurses, benefits advisers, campaigners and volunteers, are part of the Macmillan team. When people are facing the toughest fight of their lives, we’re there to support them every step of the way. We want to make sure no one has to go through cancer alone, so we need more people to help us. When the time is right for you, here are some ways in which you can become a part of our team. 5 ways you can someone hElP with cAncer Share your cancer experience Support people living with cancer by telling your story, online, in the media or face to face. Campaign for change We need your help to make sure everyone gets the right support. Take an action, big or small, for better cancer care. Help someone in your community A lift to an appointment. Help with the shopping. Or just a cup of tea and a chat. Could you lend a hand? Raise money Whatever you like doing you can raise money to help. Take part in one of our events or create your own. Give money Big or small, every penny helps. To make a one-off donation see over. Call us to find out more 0300 1000 200 macmillan.org.uk/getinvolved Please fill in your personal details Don’t let the taxman keep your money Mr/Mrs/Miss/Other Do you pay tax? If so, your gift will be worth 25% more to us – at no extra cost to you. All you have to do is tick the box below, and the tax office will give 25p for every pound you give. Name Surname Address Postcode Phone Email Please accept my gift of £ (Please delete as appropriate) I enclose a cheque / postal order / Charity Voucher made payable to Macmillan Cancer Support OR debit my: Visa / MasterCard / CAF Charity Card / Switch / Maestro Card number Valid from Expiry date Issue no Security number I am a UK taxpayer and I would like Macmillan Cancer Support to treat all donations I have made for the four years prior to this year, and all donations I make in the future, as Gift Aid donations, until I notify you otherwise. I confirm I have paid or will pay an amount of Income Tax and/or Capital Gains Tax in each tax year, that is at least equal to the tax that Charities & CASCs I donate to will reclaim on my gifts. I understand that other taxes such as VAT and Council Tax do not qualify and that Macmillan Cancer Support will reclaim 25p of tax on every £1 that I give. Macmillan Cancer Support and our trading companies would like to hold your details in order to contact you about our fundraising, campaigning and services for people affected by cancer. If you would prefer us not to use your details in this way please tick this box. In order to carry out our work we may need to pass your details to agents or partners who act on our behalf. Signature Date / / If you’d rather donate online go to macmillan.org.uk/donate # Please cut out this form and return it in an envelope (no stamp required) to: Supporter Donations, Macmillan Cancer Support, FREEPOST LON15851, 89 Albert Embankment, London SE1 7UQ 27530 Cancer is the toughest fight most of us will ever face. If you or a loved one has been diagnosed, you need a team of people in your corner, supporting you every step of the way. That’s who we are. We are the nurses and therapists helping you through treatment. The experts on the end of the phone. The advisers telling you which benefits you’re entitled to. The volunteers giving you a hand with the everyday things. The campaigners improving cancer care. The community supporting you online, any time. The fundraisers who make it all possible. You don’t have to face cancer alone. We can give you the strength to get through it. We are Macmillan Cancer Support. Questions about living with cancer? Call free on 0808 808 00 00 (Mon–Fri, 9am–8pm) Alternatively, visit macmillan.org.uk Hard of hearing? Use textphone 0808 808 0121, or Text Relay. Non-English speaker? Interpreters available. © Macmillan Cancer Support, 2012. 2nd edition. MAC12921. Next planned review 2014. Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Printed using sustainable material. Please recycle.