Advanced prostate cancer Managing symptoms and getting support

Transcription

1 Advanced prostate cancer Managing symptoms and getting support

2 2 Advanced prostate cancer: Managing symptoms and getting support About this booklet This booklet is for you if you have prostate cancer that has spread to other parts of the body and are experiencing symptoms such as bone pain. This is called advanced prostate cancer. If you are a partner or relative of a man with advanced prostate cancer, you may also find it helpful. We describe the possible symptoms you might experience, and treatments for advanced prostate cancer. You can also find information about emotional, practical and spiritual support. This booklet is a general guide but everybody s experience of advanced prostate cancer is different. You may find it helpful to dip into this booklet for the information that is relevant to you. If you would like more detailed information you can speak to your doctor or nurse at the hospital or your GP. You can also speak to our Specialist Nurses by calling our confidential helpline. The following symbols appear throughout the booklet to guide you to sources of further information: Prostate Cancer UK Specialist Nurse helpline Prostate Cancer UK publications If you would like to know more about anything you read in this booklet, you can call our Specialist Nurses on our confidential helpline.

3 Helpline What is palliative care? If you have advanced prostate cancer, you may hear the term palliative care. Palliative care aims to relieve pain and other symptoms. It also provides men with emotional, physical, practical and spiritual support to help deal with advanced prostate cancer. Palliative care can be provided at any stage of advanced prostate cancer. It is not just for men in the final stages of life. Men with advanced prostate cancer might have palliative care for many months or years. The photos in this booklet are of people personally affected by prostate cancer. The personal experience quotations we use are not always attributed to the photos they accompany.

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5 Helpline Contents About this booklet... 2 What is advanced prostate cancer?... 7 What symptoms might I get?...11 Treatments for advanced prostate cancer...31 Your health and social care professionals...37 Coping emotionally...43 Relationships...49 Daily life with advanced prostate cancer...53 Thinking about the future...59 Medical terms used in this booklet...62 More information from us...64 Other useful organisations...65 About Prostate Cancer UK...73

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7 Helpline What is advanced prostate cancer? Advanced prostate cancer is cancer that has spread from the prostate to other parts of the body, most commonly the bones. You might also hear it called metastatic prostate cancer. Advanced prostate cancer is not curable. But there are treatments that can keep the cancer under control for many months or years (see page 31). If the cancer starts to grow again and cause symptoms, there are treatments available that can control these symptoms. Dad s cancer had spread to his bones when he was diagnosed. He lived life to the full for over five years before any symptoms bothered him. A personal experience

8 8 Advanced prostate cancer: Managing symptoms and getting support Where does prostate cancer spread to? Prostate cancer can spread to any part of the body, but most commonly to the bones and lymph nodes. Prostate cancer can also spread to, or press on, the tube that carries urine through the penis (urethra), the bladder, the tubes that carry urine from the kidneys to the bladder (ureters) and part of the bowel (rectum). spine lymph nodes lymph vessel kidneys ureter bladder bones urethra prostate gland More rarely, prostate cancer may spread to the lungs, liver and brain. Macmillan Cancer Support has more information about cancer that has spread here. You might hear the cancer that has spread described as secondary prostate cancer, metastases or secondaries.

9 Helpline What is my outlook? Many men want to know how successful their treatment is likely to be in controlling their cancer. This is sometimes called your outlook or prognosis. No one will be able to tell you exactly what your outlook is, as every cancer is different. And not everyone wants to know about their outlook. But if you do, speak to your doctor. They can talk to you about your individual situation. Some people find it helpful to discuss their outlook so that they can make plans for the future. You can read more about this on page 59. Although it s not possible to cure advanced prostate cancer, hormone therapy might control it for many months or years. And when hormone therapy stops working, there are other treatments available to keep the cancer under control. There are also treatments to help manage symptoms, including radiotherapy and drugs to treat bone pain called bisphosphonates (see page 31). It can be very difficult living with the uncertainty of cancer, but there is support available if you need it. This includes: help to manage symptoms (see page 11) emotional support (see page 43) practical support (see page 53).

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11 Helpline What symptoms might I get? The symptoms you have will depend on where the cancer has spread to. You might get only a few symptoms, and there are usually treatments available to manage them. But the cancer may spread further over time, causing more symptoms. However, this doesn t always happen and not all cancer that has spread will cause symptoms that affect you day to day. Fatigue (extreme tiredness) Fatigue is a range of feelings from tiredness to exhaustion, which makes it hard to carry out your daily activities. You may feel weak, lethargic, knackered or drained. It can affect your energy levels, motivation, ability to concentrate, emotions and sex drive. Many men find it difficult to cope with. And it is not always relieved by rest alone. Fatigue might be caused by the cancer itself, by treatments, or by other conditions such as anaemia. (See page 22 for more information about anaemia.) Anxiety and depression (see page 43) can also cause fatigue. Tell your doctor or nurse if you are having problems with fatigue. Depending on the cause, fatigue can be managed, for example, by controlling pain. There are also changes you can make to your lifestyle that could help. These include: being physically active organising your day planning activities for when you know you will have more energy

12 12 Advanced prostate cancer: Managing symptoms and getting support dealing with any problems sleeping eating healthily complementary therapies. Some of these changes may be difficult to make, so take things gradually. For example, it can be difficult to be more active if you are having problems with mobility or feel unwell. We have a telephone support service called Get back on track that can help with managing fatigue. Find out more on our website at. You can also speak to our Specialist Nurses by calling our confidential helpline. Macmillan Cancer Support also produce a booklet called Coping with fatigue. Pain Pain is a common problem for men with advanced prostate cancer. The cancer can cause pain in the areas that it has spread to. For example, if prostate cancer spreads to the bones, it can damage the bones, causing pain. But it won t always cause pain, and even if cancer has spread to several places, there might only be pain in a few of these areas. You might get other types of pain. For example, if the cancer presses on a nerve, this can cause pain. This pain might be shooting, stabbing, burning, tingling or numb. If cancer has spread to the lymph nodes, it might make them swollen and uncomfortable. Pain can also be a symptom of a more serious condition called metastatic spinal cord compression (MSCC). See page 23 for more about MSCC.

13 Helpline With the right treatment, pain can usually be relieved or reduced. You should not have to accept pain as a normal part of having cancer. And the earlier the pain is treated, the easier it will be to control it, so tell your GP or doctor or nurse at the hospital as soon as possible. Different types of pain are treated in different ways. To find the right way to deal with it, you might have a pain assessment and be referred to a palliative care specialist. Treatments to control pain include: treatment for the prostate cancer itself, such as hormone therapy, chemotherapy or steroids treatment for the pain, such as pain-relieving drugs, radiotherapy or drugs called bisphosphonates which treat bone pain complementary therapies. These treatments are described in the next section of this booklet. You can also read more about pain, how it is assessed and treated in our Tool Kit fact sheet, Pain and advanced prostate cancer. Five sessions of radiotherapy on my hip over one week magic-ed all the pain away for more than a year, allowing me to lead a normal life again. A personal experience

14 14 Advanced prostate cancer: Managing symptoms and getting support Urinary problems You might get urinary problems if the cancer has spread to areas around the prostate, urethra and bladder (the urinary system). These might include: problems emptying your bladder leaking urine blood in your urine kidney problems. Urinary problems can also be caused by other things such as an infection or previous treatments for prostate cancer. Speak to your doctor or nurse if you have any of the symptoms described below so they can investigate the cause and find the right treatment. If your symptoms are not causing you problems, you may not need treatment. If the cancer is pressing on the urethra, causing it to narrow, you might have problems emptying your bladder fully. This is called urinary retention. You may need to use a catheter to drain the urine. A catheter is a thin tube that is inserted through your penis, or through your abdomen, into your bladder. Men often worry about having a catheter inserted, but it should not be painful and your nurse will show you how to look after it. Read more about catheters in our Tool Kit fact sheet, Urinary problems after prostate cancer treatment. Some men may have an operation called a transurethral resection of the prostate (TURP). A TURP widens the urethra, which makes it easier to pass urine. You can read more in our fact sheet, Transurethral resection of the prostate (TURP). An operation

15 Helpline may not be appropriate for all men. Speak to your doctor or nurse about whether it might be right for you. If you are suddenly unable to pass urine (acute retention) you should get treatment straight away for example, at a hospital accident and emergency (A&E) department. The doctor may need to drain your bladder using a catheter. Acute retention is extremely painful and needs urgent treatment. Otherwise urine will build up in the bladder and may cause infection, bladder stones or problems with your kidneys. If the cancer has grown into the bladder or any of the muscles that control urination, it can weaken them, and you might leak urine (incontinence) or need to urinate urgently. If you leak urine there are things that can help. These include: incontinence products such as absorbent pads pelvic floor muscle exercises to strengthen the muscles that control urination medicines called anti-cholinergics, such as solifenacin succinate (Vesicare ) a catheter. You can read more about these treatments in our Tool Kit fact sheets, Urinary problems after prostate cancer treatment and Pelvic floor muscle exercises. Rarely, problems emptying your bladder or having no control over when you empty it may be caused by a condition called metastatic spinal cord compression (MSCC). See page 23 for more about MSCC.

16 16 Advanced prostate cancer: Managing symptoms and getting support Some men notice blood in their urine (haematuria). This may be caused by bleeding from the prostate. This can be alarming, but it can usually be controlled. You might need to stop taking medicines that prevent the blood clotting, such as aspirin or warfarin. But speak to your GP or hospital doctor or nurse before you stop taking any medication. You might also be able to have surgery or radiotherapy to stop the bleeding. The kidneys remove waste products from the blood and produce urine. If prostate cancer spreads to the nearby lymph nodes or the bladder, it can cause problems with how well your kidneys work. Between three and sixteen out of one hundred men with advanced prostate cancer (3 to 16 per cent) develop kidney problems. Kidney problems can lead to high levels of waste products in your blood. This can cause a serious condition called kidney failure. Symptoms of severe kidney problems include tiredness and lack of energy, feeling sick, swollen ankles and feet from fluid retention, and poor appetite. If you have any of these symptoms tell your GP or hospital doctor or nurse as they could also be caused by something else. There are treatments available that can help to drain the urine from the kidneys, including: a tube inserted into the kidney to drain urine into a bag outside your body (nephrostomy) a tube (called a stent) inserted to allow urine to flow from the kidney to the bladder radiotherapy to shrink the cancer and reduce the blockage.

17 Helpline Urinary problems might affect your self-esteem and sense of independence. If you are finding it hard to deal with, speak to your nurse or GP for help and advice. Your GP can put you in touch with your local NHS continence service. The service is run by specialist nurses and physiotherapists. They can give you advice and support about treatments and products to help. For more about managing these problems, read our Tool Kit fact sheet, Urinary problems after prostate cancer treatment, or speak to our Specialist Nurses on our confidential helpline. The Bladder and Bowel Foundation also provides information, including details of your local NHS continence service. Bowel problems Bowel problems can include passing loose and watery stools (diarrhoea), needing to rush to the toilet (rectal urgency), leaking stools (faecal incontinence), difficulty emptying your bowels (constipation) or pain around the stomach area (abdomen) or back passage. Speak to your doctor or nurse at the hospital or your GP if you have any of these symptoms. There are treatments available that may help. Men with advanced prostate cancer might develop bowel problems for a variety of reasons. Radiotherapy to treat prostate cancer can cause bowel problems. You might get these problems during treatment, or they might develop months or years later. Pain-relieving drugs such as morphine and codeine can cause constipation. Don t stop taking these drugs, but do speak to your

18 18 Advanced prostate cancer: Managing symptoms and getting support GP if you notice these side effects. They should give you a medicine to make it easier to empty your bowels (a laxative). Read more in our Tool Kit fact sheet, Pain and advanced prostate cancer. Constipation can also be caused by becoming less mobile, changes in your diet or not drinking enough. Prostate cancer can spread to part of the bowel (rectum) but this is uncommon. If this does happen, it can cause a blockage in the bowel which causes symptoms including constipation, pain and bleeding. Radiotherapy can help with the pain and bleeding. Rarely, problems emptying your bowels or having no control over emptying them might be caused by metastatic spinal cord compression (MSCC). See page 23 for more about MSCC. Lifestyle changes If you are having problems with constipation, a diet with plenty of high fibre foods can help. These include fruit and vegetables, wholemeal bread, wholegrain breakfast cereals and porridge. Drink plenty aim for about two litres (eight glasses) a day. If possible, gentle exercise such as going for a walk can also help. Depending on the cause of your constipation, your GP or nurse may prescribe you laxatives so it s easier for you to empty your bowels. If you are having problems with diarrhoea, cutting down on fibre in your diet for a short time may help. Low fibre foods include white bread, white rice and pasta, potatoes (without the skins) and cornmeal. Drink plenty of fluids, but avoid

19 Helpline alcohol, coffee and fizzy drinks. Avoiding spicy food and reducing the amount of dairy products, such as milk and cheese, may also help. Read more about diet in our Tool Kit fact sheet, Diet, physical activity and prostate cancer. Information and support Living with bowel problems can be distressing. Some men feel isolated or too embarrassed to talk about their problems. But remember that GPs and nurses see many men about these kinds of issues, and they can give advice and support. You could also ask your GP to refer you to your local continence service. Their specialist nurses will be able to give further advice and support to help you deal with things. Macmillan Cancer Support and the Bladder and Bowel Foundation provide more information about bowel problems and treatments that can help. Broken bones (fractures) The most common place for prostate cancer to spread to is the bones. The cancer can damage bones, making them weaker and increasing your risk of broken bones (fractures). Some types of hormone therapy can also cause bone thinning which increases your risk of broken bones. Read more about the bone thinning caused by hormone therapy and ways to reduce your risk in our booklet, Living with hormone therapy: A guide for men with prostate cancer.

20 20 Advanced prostate cancer: Managing symptoms and getting support Damage to the bones can make it difficult or painful to move around. If you re used to being active, this can be hard to accept. The information on page 54 might be helpful. If there is an area of bone that has been badly damaged, surgery might help to strengthen it. A metal pin or plate is inserted into the bone to stabilise the affected area. This is done under general anaesthetic. Whether surgery is appropriate will depend on where the damaged bone is, and other factors such as whether you are well enough for surgery. If you do have an operation, you may have radiotherapy afterwards to help prevent the cancer growing in that area. Some doctors give drugs called bisphosphonates to reduce the risk of broken bones. Bisphosphonates are also used to treat bone pain. Read more in our Tool Kit fact sheet, Bisphosphonates. The National Osteoporosis Society provides more information and support about fragile bones. Sexual problems Coping with advanced prostate cancer and living with the side effects of treatment can have an impact on your sex life. Treatments for prostate cancer, including hormone therapy, surgery and radiotherapy, can cause problems getting and keeping an erection (erectile dysfunction). Hormone therapy may also reduce your desire for sex (libido), and there is no treatment to improve your libido while you are on hormone therapy. Because sex is also about how we think and feel, feeling low or anxious can affect your erections and desire for sex.

21 Helpline If you are feeling very tired this can also affect your sex life. You might lose interest in sex or not have enough energy for it. If having sex is important to you or your partner, then you can still try treatment even if your sex drive is reduced. You could try to find creative ways around these problems such as trying sex in a different position, where you do not have to move around much. Or you might prefer to have sexual contact for just a few minutes at a time and take breaks. Sometimes just holding hands or cuddling can be enough. If you have a catheter (see page 14), it is still possible to have sex. Speak to your nurse about your options. The Bladder and Bowel Foundation have information about having sex if you have urinary problems. If you are in a relationship you may need to have time alone together, whatever your situation. If you are in a hospital, hospice or have carers coming to your house, make sure they know when you need some private time together. There are treatments and support available for sexual problems. Speak to your GP or doctor or nurse at the hospital to find out more. They can refer you to a specialist service such as an erectile dysfunction (ED) clinic. Read more in our booklet Prostate cancer and your sex life. You may also find the information on page 49 helpful.

22 22 Advanced prostate cancer: Managing symptoms and getting support Anaemia Some men with advanced prostate cancer may develop a condition called anaemia. Symptoms of anaemia include tiredness, lack of energy (lethargy), breathlessness and looking pale. Anaemia is when blood has fewer red blood cells than usual. Red blood cells are made by the bone marrow. They carry oxygen around the body. Anaemia can be caused when your bone marrow is damaged either by the prostate cancer or by treatment such as chemotherapy or radiotherapy. Sometimes anaemia is caused by a lack of iron in your diet. This might be a risk if you have problems eating. Speak to your GP or doctor or nurse at the hospital if you have any of the symptoms of anaemia. You will have a blood test to check your red blood cell levels. The right treatment will depend on what s causing your anaemia. If you have very low levels of red blood cells, you may need to have a blood transfusion. Blood is given through a tube (drip) into a vein in your arm. The transfusion will increase the number of red blood cells and can be a quick and effective way of treating anaemia. Occasionally, your doctor may recommend that you take iron supplements to help with anaemia. However, these can cause constipation. See page 17 for information about managing constipation. Macmillan Cancer Support and CancerHelp UK provide more information about anaemia.

23 Helpline Metastatic spinal cord compression (MSCC) Prostate cancer can spread to the bones of the spine (vertebrae). This can lead to a complication called metastatic spinal cord compression (MSCC). This happens when the cancer presses on the spinal cord. MSCC is not common and we don t know how many men with prostate cancer develop it. But if it does happen, you need to get treatment as soon as possible as it is a serious condition. Speak to your doctor or nurse for more information about your risk. MSCC can cause any of the following symptoms. Pain or soreness in your lower, middle or upper back or neck which is severe or different from usual pain. The pain might get worse when you cough, sneeze, lift or strain, or go to the toilet. It might get worse when you are lying down and it might wake you at night or stop you from sleeping. A narrow band of pain around your tummy or chest which can move towards your lower back, buttocks or legs. Pain that moves down your arms or legs. Weakness in your arms or legs, or difficulty standing or walking. You may feel unsteady on your feet or feel like your legs are giving way. Some people say they feel clumsy. Numbness or pins and needles in your legs, arms, fingers, toes, buttocks, stomach area or chest, that does not go away. Problems controlling your bladder or bowel. You might be unable to empty your bladder or bowel, or you might have no control over emptying them.

24 24 Advanced prostate cancer: Managing symptoms and getting support These symptoms can also be caused by other conditions, but it is still important to get urgent medical advice in case you do have MSCC. Read more about MSCC and how it is treated in our fact sheet, Metastatic spinal cord compression. Hypercalcaemia Hypercalcaemia is an increase in the amount of calcium in your blood. Calcium is usually stored in the bones, but the cancer can cause too much of it to be released into the blood. Hypercalcaemia is not common in men with advanced prostate cancer. About one man in a hundred (one per cent) get it. But if you do develop hypercalcaemia, it s important that it s treated, otherwise it will gradually get worse and may develop into a serious condition. Symptoms of hypercalcaemia include: tiredness (fatigue) and lack of energy (lethargy) loss of appetite weakness difficulty emptying your bowels (constipation) confusion feeling and being sick (nausea and vomiting) pain in your stomach area (abdomen) thirst needing to pass urine frequently. These symptoms can be quite common in men with advanced prostate cancer and might not be caused by hypercalcaemia. Tell your hospital doctor or nurse or your GP if you have any of

25 Helpline these symptoms so that they can find the cause. They will do a blood test to check the amount of calcium in your blood. They may also do other tests and ask you about your symptoms. If the tests show that you have hypercalcaemia, you may have to go into hospital or sometimes a hospice for a couple of days to get your calcium levels down to normal. You will be given fluid through a drip in your arm. This will help to flush excess calcium out of your blood. Medicines called bisphosphonates are the main treatment for hypercalcaemia. They are very effective at reducing the levels of calcium in your blood. They will usually start to work in two to four days. If your blood calcium levels are still high, you may be given another dose of bisphosphonates after a week. Read more in our Tool Kit fact sheet, Bisphosphonates. Once the levels of calcium in your blood have returned to normal, you will have regular blood tests to keep an eye on them. Tell your doctor or nurse if any of the symptoms of hypercalcaemia return. If your cancer is very advanced, it may not be possible to bring the levels of calcium in your blood back to normal. Your doctors should make you as comfortable as possible by controlling any symptoms you may have. CancerHelp UK provides more information about hypercalcaemia.

26 26 Advanced prostate cancer: Managing symptoms and getting support Lymphoedema Lymphoedema is caused by a blockage in part of the body s immune system called the lymphatic system. This is made up of lymph nodes (sometimes called lymph glands) and a network of lymph vessels the tubes which carry fluid called lymph around the body (see diagram on page 8). If the lymphatic system is blocked or damaged, the fluid can build up in the body s tissues and cause swelling. This is lymphoedema. Some of the lymph nodes are in the groin and pelvic area near the prostate. If prostate cancer spreads to this area, it can damage the lymphatic system. The cancer might spread to the lymph nodes or to surrounding tissues and press on the lymph vessels. The lymphatic system can also be affected by some treatments for prostate cancer, such as surgery or radiotherapy. You may be at greater risk of lymphoedema if you have had surgery or radiotherapy on the lymph nodes. Symptoms include: swelling in the affected area or limb, for example in the leg pain and discomfort in the affected area tight, sore skin which may crack and become infected. Lymphoedema in prostate cancer usually affects the legs, but it can affect other areas, including the penis or scrotum (that contains the testicles). Lymphoedema can affect your daily life. You might find that you are less able to move around and that it s harder to carry out everyday tasks like dressing. Some men find it knocks their confidence.

27 Helpline Speak to your nurse or GP if you have any of the symptoms of lymphoedema. There are treatments available to manage it, although they cannot cure it. Treatments aim to reduce or stop the swelling and make you more comfortable. They are most effective if started at an early stage. If you are diagnosed with lymphoedema, you may be referred to a specialist lymphoedema nurse. They can show you how to manage the swelling and provide advice and emotional support. They are often based in hospices. There are a variety of treatments which might help. Caring for the skin, such as regular cleaning and moisturising, helps to keep the skin soft and reduces the risk of infection. Avoiding any damage to the skin, such as sunburn or cuts, reduces the risk of infection. Special massage (manual lymphatic drainage) can help to increase the flow of lymph. Your lymphoedema nurse might be able to show you or your partner how to do this. Gentle exercise may help to improve the flow of lymph. Using compression bandages or compression stockings can help to encourage the lymph to drain from the affected area. Your lymphoedema nurse will show you how to use them. Wearing special underwear may support and control the swelling if you have lymphoedema in your penis or scrotum. Lycra cycling shorts might also help in a similar way.

28 28 Advanced prostate cancer: Managing symptoms and getting support Try to maintain a healthy weight as being overweight can make lymphoedema harder to manage. Read more about a healthy weight in our Tool Kit fact sheet, Diet, physical activity and prostate cancer. Living with lymphoedema can be difficult. If you need more support, speak to your specialist nurse, GP or lymphoedema nurse. They can provide practical and emotional support. Your GP can also refer you to a counsellor to help you deal with how you are feeling. Macmillan Cancer Support and the Lymphoedema Support Network provide more detailed information about lymphoedema. They can put you in touch with local support groups where you can meet other people with experience of lymphoedema. Eating problems Some men with advanced prostate cancer have difficulties eating, or have a poor appetite. You might feel or be sick (nausea or vomiting) because of your cancer or as a side effect of some treatments, including opioid pain relief (for example, morphine), chemotherapy, radiotherapy and bisphosphonates. Worrying about things can also affect your appetite. Problems eating or loss of appetite can lead to weight loss and can make you feel very tired and weak. If you feel sick because of your treatment, your doctor can give you anti-sickness medication. Steroids can also increase your appetite and are sometimes given along with other treatments.

29 Helpline Try to eat small amounts regularly. If the smell of food is putting you off, try to avoid strong smelling foods and if possible, ask someone else to cook your food. Try to eat when you feel less sick, even if these are not your usual mealtimes. Fatty and fried foods can make nausea worse. Drink plenty, but drink slowly and try not to drink too much before you eat. Tell your doctor if you are losing weight. They can refer you to a dietitian, who can provide advice about high calorie foods and any supplements that might be helpful. It can be upsetting for your family to see you losing weight, and they may need support to help you with eating. Macmillan Cancer Support and Marie Curie Cancer Care both provide information and support about eating problems in advanced cancer.

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31 Helpline Treatments for advanced prostate cancer Men with advanced prostate cancer are usually offered hormone therapy, which can keep the cancer under control for many months or years. But over time your cancer might start to grow again. If this happens, the cancer is no longer responding to the original hormone therapy, but might still respond to other types of hormone therapy or to other treatments. Read more about this in our Tool Kit fact sheet, Second-line hormone therapy and further treatment options. You may also be offered treatments to relieve symptoms and reduce any pain. Your treatment will depend on your symptoms, your general health and what treatments you have already had. A combination of different treatments is often useful. All treatments can cause side effects, and you may want to think about the advantages and disadvantages of any treatment that you are offered. You can read more about the treatments described on the next pages in our Tool Kit fact sheets.

32 32 Advanced prostate cancer: Managing symptoms and getting support Hormone therapy Hormone therapy shrinks the cancer wherever it is in the body, slowing its growth. This helps to reduce or prevent symptoms. As with all treatments, hormone therapy may have side effects, such as erection problems, hot flushes and fatigue. You can read more about hormone therapy, including ways to manage side effects, in our booklet, Living with hormone therapy: A guide for men with prostate cancer. Pain-relieving drugs There are different types of pain-relieving drugs, including: mild pain-relieving drugs such as paracetamol, or non-steroidal anti-inflammatory drugs such ibuprofen weak opioids such as codeine which provide moderate pain relief stronger opioids such as morphine. Some men worry about becoming addicted to opioids like morphine. If you are taking morphine to relieve pain, addiction is unlikely. You might not need the strongest type of pain-relieving drugs, and the dose will be carefully controlled by your doctor.

33 Helpline Radiotherapy Radiotherapy can shrink the cancer. It s used to manage symptoms such as pain, blood in your urine or discomfort from swollen lymph nodes. It s also used to treat metastatic spinal cord compression. If you are having radiotherapy to relieve pain, it may be a week or more after treatment before your pain starts to improve. You might even experience an increase in pain during, and for a few days after, treatment but this should soon improve. It usually takes a few weeks for radiotherapy to have its full effect. Bisphosphonates Bisphosphonate drugs treat pain caused by cancer that has spread to the bones. They can bind to damaged areas of bone and slow down the breakdown of bone. This helps to strengthen the bone and relieve pain. They are also used to treat hypercalcaemia (see page 24). Chemotherapy Chemotherapy involves using anti-cancer (cytotoxic) drugs to kill cancer cells. This shrinks the cancer and slows its growth. It does not cure prostate cancer but can help to control symptoms such as pain.

34 34 Advanced prostate cancer: Managing symptoms and getting support Clinical trials Clinical trials are a type of medical research study that aims to find new and improved ways of treating an illness. They test new medicines and procedures on people in a controlled way. There are a number of trials that are looking into treatments for advanced prostate cancer. You can find details of prostate cancer trials on the CancerHelp UK website. Complementary therapies Some people find that complementary therapies help them with cancer symptoms. They can also help you cope emotionally and feel more in control. There are many different types of complementary therapy including acupuncture, massage, reflexology, hypnotherapy and relaxation techniques. Many hospices offer these. Complementary therapies are used alongside conventional treatments, rather than instead of them. It is important that you tell your doctor about any complementary therapy you are having or are thinking about having. Some complementary therapies have side effects or may interfere with your cancer treatment. You should also tell your complementary therapist about any cancer treatments you are having.

35 Helpline When you choose a therapist, make sure they are properly trained and belong to a professional body. Organisations such as the Complementary and Natural Healthcare Council will be able to give you advice about finding a therapist. Macmillan Cancer Support and CancerHelp UK provide more information on the different types of complementary therapy available and important safety issues to consider when choosing a therapy. Keeping your own record of treatment and medication can be very useful. Out-of-hours and A&E staff may not be able to access your medical notes. A personal experience

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37 Helpline Your health and social care professionals You might see a range of different professionals to help manage your symptoms and offer emotional and practical support. Some may have been treating you since your diagnosis. Others provide specific services or specialise in palliative care. Your multi-disciplinary team (MDT) This is the team of professionals involved in your care. Exactly who you see depends on the support you need, but your MDT might include an oncologist, a urologist, a clinical nurse specialist or Macmillan nurse, and a palliative care doctor or nurse. Services vary depending on where you live. Your GP and district nurse Your GP (general practitioner) and district or community nurse will work with other health professionals to co-ordinate your care and offer you support and advice throughout your treatment. They can also refer you to local services. They can visit you in your home and also help support your family. Specialists You might still see a consultant urologist or consultant oncologist at the hospital. Urologists are surgeons who specialise in the treatment of diseases of the urinary system. Oncologists specialise in treating cancer with treatments other than surgery, such as chemotherapy or radiotherapy.

38 38 Advanced prostate cancer: Managing symptoms and getting support Clinical nurse specialists (CNS) are nurses who provide care and advice in managing prostate cancer and side effects, along with emotional support. For example, you might see a urology clinical nurse specialist at the hospital. Specialist palliative care services These teams include professionals such as specialist palliative care nurses and doctors. They provide treatment to manage pain and other symptoms of advanced cancer. They can also offer emotional and spiritual support for you and your family. They work in hospitals and hospices, but they might be able to visit you at home. Your hospital doctor, nurse or GP can refer you to a palliative care team. You might hear your palliative care nurse called a Macmillan nurse. But Macmillan nurses aren t always palliative care nurses. This will depend on your local services. The specialist palliative care consultant was part of the palliative care team that my oncologist had recommended. She was able to identify my needs and recommended medications that meant they were able to minimise the pain. A personal experience

39 Helpline Hospices provide a range of services including treatment to manage symptoms, emotional and spiritual support, practical and financial advice and support for families. Hospices don t just provide care for those at the end of their life. Some people go into a hospice for a short time to get their symptoms under control before going home again. For example, they might provide treatment with bisphosphonates for hypercalcaemia or give blood transfusions for anaemia. Some hospices have nurses who can visit you at home, and some provide day therapy, such as complementary therapy or lymphoedema care. This lets you use their services while still living at home. Your GP, doctor or district nurse can refer you to a hospice service. Find out more from Help the Hospices, Marie Curie Cancer Care and Sue Ryder. We are not in the position of needing the hospice s specific help at the moment, but they have already visited us at home twice, and we have been there. The nurse is there for my husband. I had some counselling too and this has helped us get back on our feet. A personal experience

40 40 Advanced prostate cancer: Managing symptoms and getting support Marie Curie nurses provide nursing care to people in the last few months or weeks of life. They visit people at home and often provide care overnight. They also offer practical advice and emotional support to you and your family. They help to give partners and family members a break so that they are able to rest. Your district nurse can arrange a Marie Curie nurse for you. Services vary depending on where you live. In some areas, a hospice may provide this care rather than Marie Curie nurses. Other professionals who can help Your doctor, nurse or GP can refer you to these professionals. Physiotherapists provide advice about exercises to help improve mobility and fitness. Counsellors or psychotherapists can help you work through any difficult feelings and find ways of coping. Dietitians can provide advice about diet if you are losing weight or having problems eating. Social workers at your local social services department can give you advice about practical issues. Occupational therapists (OT) can provide advice and access to equipment and adaptations to help with daily life. For example, help with dressing, eating, bathing or using the stairs. Your social services department should be able to arrange for an OT to visit you.

41 Helpline There are a range of support services which your local council might be able to provide through its social services department. What s available varies from place to place, but can include practical and financial advice and access to emotional support. Your GP might be able to refer you to some services, and some may be linked to hospital departments. You can also contact your local social services department directly. Their telephone number will be in the phone book under the name of your local authority, on their website and at the town hall. He went into the hospice for a few days to sort out his pain relief properly. It gave me the opportunity to just take stock of what was going on. A personal experience

42 42 Advanced prostate cancer: Managing symptoms and getting support

43 Helpline Coping emotionally Living with advanced prostate cancer can be hard to deal with emotionally as well as physically. Symptoms and treatments can be draining and make you feel unwell. And some treatments, including hormone therapy, can make you feel more emotional and cause low moods. Research suggests that men with prostate cancer might also be at risk of depression. You may feel a wide range of emotions, including anxiety, helplessness, anger and fear. Your emotions could change very quickly you might have good days and bad days. All these are very normal ways to feel. But if you are feeling very down or worried, do speak to your GP or nurse there are things that can help. What can help? There is no right way to deal with your feelings. Give yourself time. Don t put yourself under pressure to be positive if that is not how you feel. Some men want to find their own way to cope and don t want any outside help. Other men try to cope on their own because they are uncomfortable talking about how they feel or are afraid of worrying loved ones. But there is support available if you need it. Not everyone wants or needs the same kind of support, but have a look at the information here to see if there is anything you might find useful.

44 44 Advanced prostate cancer: Managing symptoms and getting support A lot of men find that talking about how they feel can help. Some men get support from talking to their family and friends. But not everyone will want to share their feelings with those close to them. You might find it easier to talk to someone else. You may find talking to your doctor or nurse helpful. You can also speak to our Specialist Nurses on our confidential helpline. It can sometimes help to talk to someone who knows what you re going through. Our support volunteers are all personally affected by prostate cancer and are trained to listen and offer support over the telephone. Our volunteers include men with prostate cancer, their partners and other family members. Call our confidential helpline and ask to be put in touch with a support volunteer. There are also prostate cancer support groups throughout the country where you and your family can meet other people affected by prostate cancer. Find details of your nearest group on our website at or ask your nurse. If you have access to the internet, you can join our online community where you can talk to other men with prostate cancer and their families. Find it on our website at

45 Helpline Some men find talking to a professional counsellor helpful. They can help you understand your feelings and find ways to deal with them. Your GP or nurse can put you in touch with a counsellor. Some hospices also provide counselling. You can also find a counsellor yourself. The British Association for Counselling and Psychotherapy has information about counsellors in your area. If there is something in particular that is worrying you, then tackling this can help. For example, if you are having trouble with symptoms or side effects, speak to your doctor or nurse. If you are worrying about the future, then making plans such as thinking about your future care might help you feel more in control (see page 59). If you are suffering from anxiety or depression, anti-depressants might help. Speak to your GP about this. It is important that you tell them about any other medicine or complementary therapies that you are taking. Some men find complementary therapies helpful in dealing with advanced prostate cancer (see page 34). They might help you manage symptoms or side effects and so feel more in control, or help with anxiety. For example, relaxation techniques may help you deal with worries, or relax you so that you can sleep better.

46 46 Advanced prostate cancer: Managing symptoms and getting support You might begin to think more about spiritual beliefs as a result of having advanced prostate cancer. Beliefs are not necessarily religious, but might help you to make sense of life or your cancer. You may find that your beliefs offer you great comfort or support. Or you might start to question your current beliefs. It is important that you get spiritual support if you need it. This could be from your friends or family, or from your religious leader or faith community. If you have any religious practices that are important to you, such as a special diet or prayer time, tell your doctor or nurse. Most hospitals and hospices will have a chaplain who can talk to you about your concerns, whatever your religion, or even if you are not religious. Macmillan Cancer Support and CancerHelp UK both provide information about coping emotionally with cancer. Or ask your GP or nurse about any local sources of support. The charities Mind and Sane both provide information and support for people who are struggling with depression and anxiety. Samaritans offer a confidential listening service, allowing you to talk through your feelings. You can phone them on

47 Helpline I really do think it helps to be positive, to have a positive frame of mind; and if you ve got a partner or a friend that you can share it with it s just vital really, I think. A personal experience It helps me to talk about it. It makes me feel that I m hitting back at the cancer. A personal experience

48 48 Advanced prostate cancer: Managing symptoms and getting support All these pages move on one to make space for LHP image

49 Helpline Relationships Having cancer can often bring you closer to your partner, family or friends. But the pressure of advanced cancer can also put a strain on relationships. The cancer and your treatment might mean that your partner or family need to do more for you, such as running the home or caring for you. These changing roles can sometimes be difficult for both you and your family to deal with. You might not feel comfortable becoming more dependent, and they might have problems coping or feel very tired. Some people may be unsure how to act with you and might find it difficult to talk about your cancer. They could be worried about upsetting you or becoming upset themselves. Sometimes it can help if you let them know whether you want to talk about it or not. As a family, we ve been able to be ever so open about it if anything I think it s probably brought us closer together, rather than not talking about it and burying our heads in the sand. A personal experience

50 50 Advanced prostate cancer: Managing symptoms and getting support What can help? Talking to those close to you can help everyone deal with tensions. But sometimes talking is not that easy. If you d like help with problems in a relationship, your nurse or GP can put you in touch with a counsellor, and your local hospice may have a family support team. You could also try contacting organisations such as Relate or the College of Sexual and Relationship Therapists. Talking to children It can be difficult to talk to children or grandchildren about your cancer. It is usually best to be honest with them. Children can often sense that something is wrong even if they don t understand it, and keeping things from them might only make them worry more. You could ask your GP or specialist nurse for advice. The charities Macmillan Cancer Support and Winston s Wish have more information about talking to children about cancer. If you live alone Dealing with advanced prostate cancer can be hard at times, particularly if you live on your own. Don t be afraid to ask for support if you need it. If you are finding it hard, speak to your GP or nurse. If you have friends or neighbours nearby, they may be able to help, both practically and emotionally. Joining a local support group can also be a good way of meeting people with similar experiences. For details of your nearest support group, ask your doctor or nurse or visit our website at

51 Helpline Are you supporting someone with prostate cancer? If someone close to you has advanced prostate cancer you might be able to offer him a great deal of support, but it is likely that you will need help and support as well. You may find some of the information on pages helpful. It is important that you look after yourself. Try to get enough rest, and if you feel unwell make sure you visit your doctor. Finding some time to yourself can help you relax. Doing something you enjoy can help take your mind off things. And regular physical activity can be a good way of relieving stress. Don t be afraid to ask for help if you need it. Friends or family might be able to help out, and support is also available from social services and voluntary organisations. My wife and I frequently say that we have cancer not just me. We are in this together and her welfare is vital in our treatment plan. A personal experience