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Advanced prostate cancer Managing symptoms and getting support 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 you’re having symptoms such as fatigue or bone pain. This is called advanced or metastatic prostate cancer. If you are a partner or relative of a man with advanced prostate cancer, you may also find this booklet useful. We describe the possible symptoms you might get and the treatments available to help manage them. There’s also information about emotional, practical and spiritual support. This booklet is a general guide but everyone’s experience of advanced prostate cancer is different. You might want to dip into this booklet for the information that’s relevant to you. Ask your doctor or nurse for more details about your care and the support available to you. You can also speak to our Specialist Nurses, in confidence, on 0800 074 8383. he following symbols appear throughout the booklet to guide T you to sources of further information: Prostate Cancer UK Specialist Nurses Prostate Cancer UK publications The photos in this booklet are of people personally affected by prostate cancer. The quotes are not the words of the people in the photos. Specialist Nurses 0800 074 8383 3 prostatecanceruk.org Contents About this booklet .................................................................................................................... 2 What is advanced prostate cancer? 5 What symptoms might I get? 9 ....................................................................... .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Treatments for advanced prostate cancer Your health and social care professionals Dealing with advanced prostate cancer Relationships ................................................... .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ......................................................... .............................................................................................................................. Daily life with advanced prostate cancer Thinking about the future More information from us ...................................................... ............................................................................................... .............................................................................................. Other useful organisations About Prostate Cancer UK .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ........................................................................................... 31 37 43 49 53 59 65 66 73 4 Advanced prostate cancer: Managing symptoms and getting support 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 Specialist Nurses 0800 074 8383 prostatecanceruk.org 5 What is advanced prostate cancer? Advanced prostate cancer is cancer that has spread outside the prostate to other parts of the body, such as the bones. You might hear cancer that has spread called metastatic or secondary prostate cancer, metastases, mets or secondaries. It is still prostate cancer, wherever it is in the body. It’s not possible to cure advanced prostate cancer, but treatments can keep it under control, sometimes for several years (see page 31). If the cancer starts to grow again and cause any symptoms, there are treatments available to help manage them. What is palliative care? If you have advanced prostate cancer, you may hear the term palliative care. Palliative care aims to manage pain and other symptoms. It also aims to provide emotional, physical, practical and spiritual support. Palliative care can be provided at any stage of advanced prostate cancer and isn’t just for men in the final stages of life. Men with advanced prostate cancer might have palliative care for many months or years. 6 Advanced prostate cancer: Managing symptoms and getting support Where does prostate cancer spread to? Prostate cancer most commonly spreads to the bones and lymph nodes. It 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 kidneys ureter lymph vessel bladder bones urethra prostate gland More rarely, prostate cancer may spread to other parts of the body including the lungs and liver. Macmillan Cancer Support has more information about cancer that has spread to the lungs and liver. Specialist Nurses 0800 074 8383 prostatecanceruk.org 7 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 can tell you exactly what your outlook will be, as every cancer is different and will affect each man differently. And not everyone wants to know about their outlook. But some men find it helpful to discuss their outlook so they can make plans for the future (see page 59). Not all men with advanced prostate cancer will die from their cancer. Hormone therapy can keep it under control, sometimes for several years. And when hormone therapy stops working, there are other treatments available to keep the cancer under control for longer. 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, and emotional and practical support. 8 Advanced prostate cancer: Managing symptoms and getting support I am now coping with the fatigue by identifying things I really want to do, and then being mentally determined to do them. A personal experience Specialist Nurses 0800 074 8383 prostatecanceruk.org 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, but the cancer may spread further over time, causing more symptoms. This doesn’t always happen and not all cancer that has spread will cause symptoms that affect you day to day. There are treatments available to help manage your symptoms. You might also get side effects from the treatments you are having, or from treatments you have had in the past. Read more about treatments on page 31. 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 or drained. It can affect your energy levels, motivation, ability to concentrate, emotions and sex drive. Fatigue isn’t always relieved by rest alone and many men find it difficult to cope with. Fatigue might be caused by the cancer itself, by treatments, or by other conditions such as anaemia (see page 24), anxiety and depression (see page 43). 9 10 Advanced prostate cancer: Managing symptoms and getting support What can help? Let your doctor or nurse know if you’re feeling very tired. They can look into what’s causing it and look for ways to help. There are things you can do to help manage fatigue. • Plan your day. Do important things first and make time for rest. • Stay active. Gentle physical activity such as walking or swimming can help reduce tiredness. Speak to your doctor before you make any changes to how you exercise. • Eat well and drink plenty of fluids. If you are struggling to eat enough and you’re losing weight, this could add to your tiredness. Your GP can refer you to a dietitian for advice about your diet. • Sort out your sleep. Lots of things can help with sleep problems, including relaxation techniques and dealing with any worries that may be keeping you awake. Your GP can give you advice on what could help you sleep and may sometimes prescribe sleeping pills. • Get support. Feeling low or anxious can make you feel tired. • Try complementary therapies. Acupuncture, massage, yoga or meditation may help with tiredness. 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 moving around or feel unwell. Specialist Nurses 0800 074 8383 prostatecanceruk.org 11 Our fatigue support service Our fatigue support service is a 10-week telephone service delivered by our Specialist Nurses. They will ask about how you’re feeling and try to help you find ways to manage your fatigue. Changes might be things like gradually becoming more active, getting back into hobbies, or changing your diet slightly. Visit our website at prostatecanceruk.org/get-support or call our Specialist Nurses to find out more. 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 it has spread to. But it won’t always cause pain, and even if cancer has spread to several places, you may only have pain in a few of these areas. The most common cause of pain is cancer that has spread to the bones. Bone pain is a very specific feeling. Some men describe it as feeling similar to a toothache but in the bones, or like a dull aching or stabbing. It can get worse with movement and can make the bone tender to touch. Every man’s experience of bone pain will be different. The pain may be continuous or it might come and go. How bad it is can also vary and it could depend on where the affected bone is. You might get other types of pain. For example, if the cancer presses on a nerve, this can also cause pain. This might be shooting, stabbing, burning, tingling or numbness. 12 Advanced prostate cancer: Managing symptoms and getting support Metastatic spinal cord compression (MSCC) Pain can also be a symptom of a more serious condition called metastatic spinal cord compression (MSCC), see page 25. What can help? With the right treatment, cancer pain can usually be managed. You shouldn’t have to accept pain as a normal part of having cancer. If you have pain, speak to your doctor or nurse. The earlier pain is treated, the easier it will be to control. 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 cancer itself, such as hormone therapy, chemotherapy or steroids • treatment for the pain, such as pain-relieving drugs, radiotherapy, or bisphosphonates (see pages 32-33) • complementary therapies (see page 35). Some NHS pain clinics and hospitals offer transcutaneous electrical nerve stimulation (TENS) to help manage pain. TENS uses a machine to send small electrical currents to nerves in your body through pads placed on your skin. TENS might help some people with bone pain, but we need more research into this. Read more about ways to control pain in our Tool Kit fact sheet, Managing pain in advanced prostate cancer. Specialist Nurses 0800 074 8383 prostatecanceruk.org 13 Urinary problems You might get urinary problems if the cancer has spread to areas around the prostate, urethra and bladder. These might include: • problems emptying your bladder • leaking urine (incontinence) • blood in your urine • kidney problems. Urinary problems can also be caused by other things such as infection, an enlarged prostate, or prostate cancer treatments such as radiotherapy. If you have urinary problems, speak to your doctor or nurse. There are lots of things that can help. Problems emptying your bladder If the cancer is pressing on your urethra it might cause problems emptying your bladder fully. This is called urinary retention. There are several things that can help. • A catheter to drain the urine from the bladder. This is a thin tube passed through your penis, or through your abdomen (stomach area), into your bladder. • Drugs called alpha-blockers. These relax the muscles around the opening of the bladder, making it easier to urinate. • An operation called a transurethral resection of the prostate (TURP) to remove the area of the prostate pressing on the urethra. But this may not be suitable for all men. Read more in our fact sheet, Transurethral resection of the prostate (TURP). 14 Advanced prostate cancer: Managing symptoms and getting support Acute urine retention This is when you suddenly and painfully can’t urinate – it needs treating straight away. Acute retention isn’t very common in men with advanced prostate cancer, but if it happens, call your doctor or nurse, or go to your nearest accident and emergency (A&E) department. They may need to drain your bladder using a catheter. Problems leaking urine Cancer can grow into the bladder and the muscles that control urination. This can make them weaker and could mean you leak urine or need to urinate urgently. Ways to manage leaking urine include: • absorbent pads and pants • pelvic floor muscle exercises • medicines called anti-cholinergics • a catheter • surgery. Your treatment options will depend on how much urine you’re leaking. If you find you need to rush to the toilet a lot and sometimes leak before you get there, planning ahead and finding out where toilets are before you go out, may help you feel more in control of the situation. Get an ‘urgent’ card to show staff in shops, restaurants and other public places. You can read more about these treatments in our Tool Kit fact sheets, Urinary problems after prostate cancer treatment and Pelvic floor muscle exercises. Specialist Nurses 0800 074 8383 prostatecanceruk.org 15 Metastatic spinal cord compression (MSCC) 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 25. Blood in your urine Some men notice blood in their urine (haematuria). This may be caused by bleeding from the prostate. It can be alarming, but can usually be controlled. You might need to stop taking medicines that stop the blood clotting, such as aspirin or warfarin. But speak to your doctor or nurse before you stop taking any drugs. You might also be able to have radiotherapy to stop the bleeding. Kidney problems The kidneys remove waste products from the blood and produce urine. Prostate cancer may block the tubes that carry the urine from the kidneys into the bladder (the ureters). This can cause problems with how well your kidneys work. 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, and poor appetite. If you have any of these symptoms tell your doctor or nurse. A simple blood test can check how well your kidneys are working. 16 Advanced prostate cancer: Managing symptoms and getting support Treatments that can help to drain the urine from the kidneys include: • a tube put into the kidney to drain urine into a bag outside your body (nephrostomy) • a tube (called a stent) put inside the ureters to allow urine to flow from the kidney to the bladder • radiotherapy to shrink the cancer and reduce the blockage. Information and support Urinary problems might affect how you feel about yourself and your sense of independence. If you are finding it hard to deal with, speak to your doctor or nurse for help and advice. Your GP can put you in touch with your local NHS continence service. This is run by specialist nurses and physiotherapists. They can give you advice and support about treatments and products that can help. Read more in our Tool Kit fact sheet, Urinary problems after prostate cancer treatment, or speak to our Specialist Nurses. The Bladder and Bowel Foundation also provides information, including details of your local NHS continence service. You can also visit continenceproductadvisor.org for information about incontinence products. Specialist Nurses 0800 074 8383 prostatecanceruk.org 17 Bowel problems Bowel problems can include: • passing loose and watery bowel movements (diarrhoea) • needing to rush to the toilet (rectal urgency) • leaking from your back passage (faecal incontinence) • difficulty emptying your bowels (constipation) • pain around the stomach area or back passage. Speak to your doctor or nurse if you have any of these symptoms. There are treatments available that may help. Men with advanced prostate cancer might get bowel problems for a variety of reasons. Radiotherapy to treat prostate cancer can cause bowel problems. You might get these during treatment, or they can develop months or years later. Pain-relieving drugs such as morphine and codeine can cause constipation. Don’t stop taking them, but speak to your doctor or nurse if you have any problems. They can give you medicine to make it easier to empty your bowels (laxatives). Becoming less mobile, changes in your diet or not drinking enough fluids can also cause constipation. You may also get bowel problems if prostate cancer spreads to part of the bowel (rectum), but this isn’t common. If it happens, it can cause symptoms including constipation, pain and bleeding. Radiotherapy can help with the pain and bleeding. 18 Advanced prostate cancer: Managing symptoms and getting support Metastatic spinal cord compression (MSCC) Rarely, problems emptying your bowels or having no control over emptying them might be caused by metastatic spinal cord compression (MSCC), see page 25. What can help? 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 of water – 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 laxatives to help you 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 rice, pasta and bread, potatoes (without the skins), cornmeal, eggs and lean white meat. Drink plenty of fluids, but avoid 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 in our Tool Kit fact sheet, Diet, physical activity and prostate cancer. Specialist Nurses 0800 074 8383 prostatecanceruk.org 19 Information and support Living with bowel problems can be distressing and, for a lot of men, it’s not an easy thing to talk about. But remember, doctors and nurses are used to discussing these problems and finding ways to deal with it. You could also ask your GP to refer you to your local continence service. Their specialist nurses can give you further advice and support on products that can help. Macmillan Cancer Support and the Bladder and Bowel Foundation have more information about coping with bowel problems. 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 make your bones weaker and can lead to a condition called osteoporosis, which can increase your risk of bone fractures. Read more about bone thinning and hormone therapy in our booklet, Living with hormone therapy: A guide for men with prostate cancer. 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. 20 Advanced prostate cancer: Managing symptoms and getting support What can help? You might be given radiotherapy to slow down the growth of the cancer. This can help control damage to the bones and bone pain. Read more in our Tool Kit fact sheet, Radiotherapy for advanced prostate cancer. Your doctor may give you drugs called bisphosphonates to help treat bone pain (see page 33). Sometimes they are also used to help manage osteoporosis. If there is an area of bone that has been badly damaged, surgery might help to strengthen it. A metal pin or plate is put inside the bone. Surgery isn’t suitable for all men with advanced prostate cancer. This will depend on where the damaged bone is, and other things such as whether you are well enough for surgery. If you have an operation, you may have radiotherapy afterwards to help stop the cancer growing in that area. The National Osteoporosis Society provides more information and support about fragile bones. Specialist Nurses 0800 074 8383 prostatecanceruk.org 21 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 such as surgery and radiotherapy can affect your ability to get an erection. All types of hormone therapy can reduce your desire for sex (libido). Because getting an erection also relies on your thoughts and feelings, feeling low, anxious or tired can also affect your sex life. You might lose interest in sex or not have enough energy for it. What can help? You can get treatment and support for sexual problems. Speak to your GP, nurse or hospital doctor to find out more. They can offer you treatment or refer you to a specialist service. You can get free medical treatment for erection problems or other sexual problems on the NHS. Some of these may help, even if your sex drive is reduced. Tackling any worries or relationship issues as well as having medical treatment for erection problems often works well. Even though your sex life might not be the same as it was before cancer, you don’t have to give up on having pleasure, closeness or fun. It’s often helpful to explore other ways of having an intimate relationship, without having penetrative sex. Sometimes just holding hands or cuddling can be enough. If you have a catheter, it is still possible to have sex. Speak to your nurse about this. The Bladder and Bowel Foundation have information about having sex if you have urinary problems. 22 Advanced prostate cancer: Managing symptoms and getting support 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. Read more about ways to manage sexual problems in our booklet Prostate cancer and your sex life. You may also find the information on page 49 helpful. Lymphoedema If the cancer spreads to the lymph nodes it could lead to a condition called lymphoedema – caused by a blockage in the lymphatic system. The lymphatic system is part of your body’s immune system, carrying fluid called lymph, around your body. If it is blocked, the fluid can build up and cause swelling (lymphoedema). Cancer itself can cause a blockage and so can some treatments, such as surgery or radiotherapy. Lymphoedema in prostate cancer usually affects the legs, but it can affect other areas, including the penis or scrotum (which contains the testicles). Symptoms in the affected area can include: • swelling • pain, discomfort or heaviness • inflammation, redness or infection • tight, sore skin. Lymphoedema can affect your daily life. You might find that you are less able to move around and it’s harder to carry out everyday tasks like getting dressed. Some men find it knocks their confidence. Specialist Nurses 0800 074 8383 prostatecanceruk.org 23 What can help? Speak to your nurse or GP if you have any symptoms. There are treatments that can help to manage them. Treatments aim to reduce or stop the swelling and make you more comfortable. They are most effective if started when symptoms first start. If you have lymphoedema, you may be referred to a specialist lymphoedema nurse. They can show you how to manage the swelling and are often based in hospices. There are a variety of treatments which might help. • Caring for the skin, such as regular cleaning and moisturising. It can help to keep your skin soft and reduce the chance of it becoming cracked and infected. • Special massage (manual lymphatic drainage) can help to increase the flow of lymph. Your nurse might be able to show you or your partner how to do this. • Gentle exercise may help to improve the flow of lymph from the affected area of the body. For example, doing simple leg movements, similar to those recommended for long aeroplane journeys, may help with leg lymphoedema. • Using compression bandages or stockings can help to encourage the lymph to drain from the affected area. Your nurse will show you how to use them. • Wearing supportive underwear may help control any swelling in your penis or scrotum. Lycra cycling shorts might also help in a similar way. • Try to maintain a healthy weight as being overweight can make lymphoedema harder to manage. Read more in our Tool Kit fact sheet, Diet, physical activity and prostate cancer. 24 Advanced prostate cancer: Managing symptoms and getting support Information and support Living with lymphoedema can be difficult. If you need more support, speak to your specialist nurse or GP. They can provide practical and emotional support. Your GP can also refer you to a counsellor to help you deal with how you’re feeling. Macmillan Cancer Support and the Lymphoedema Support Network provide more information and can put you in touch with local support groups. Anaemia Some men with advanced prostate cancer may develop a condition called anaemia. This is when your blood can’t carry enough oxygen to meet your body’s needs. Symptoms include feeling tired or weak, out of breath and looking pale. Anaemia occurs when your blood has fewer red blood cells than usual. Red blood cells carry oxygen around the body and are made by the bone marrow. Anaemia can happen 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. What can help? Speak to your doctor or nurse if you have 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 the anaemia is caused by the cancer, treating the cancer can sometimes help. Specialist Nurses 0800 074 8383 prostatecanceruk.org 25 If you have very low levels of red blood cells, you may need to have a blood transfusion. This can be a quick and effective way of treating anaemia. Your doctor may recommend you take iron supplements to help with anaemia. These can cause constipation. See page 18 for information about managing constipation. Macmillan Cancer Support and Cancer Research UK provide more information about anaemia. Metastatic spinal cord compression (MSCC) Prostate cancer can spread to the bones of the spine. This can lead to a condition called metastatic spinal cord compression (MSCC). This happens when the cancer presses on the spinal cord. This can cause problems with how the nerves in the spinal cord carry messages to the rest of the body. This can cause a range of symptoms which can get worse if left untreated. For example, it can make you less able to walk and move around. MSCC isn’t common but you need to be aware of it if you have prostate cancer that has spread to the bones. 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. 26 Advanced prostate cancer: Managing symptoms and getting support • A narrow band of pain around your stomach area 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 doesn’t 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. Don’t wait - get it checked out These symptoms can also be caused by other conditions. But it’s very important to get medical advice straight away. Don’t wait to see if it gets better and don’t worry if it’s an inconvenient time, such as the evening or weekend. It’s very important you have treatment as soon as possible. At its worst, MSCC can cause paralysis. Getting treatment straight away can lower the risk of this happening or it being permanent. Contact your doctor or nurse, or if you can’t reach them, go to your nearest accident and emergency (A&E) department. Read more in our fact sheet, Metastatic spinal cord compression. Specialist Nurses 0800 074 8383 prostatecanceruk.org 27 Hypercalcaemia Hypercalcaemia is a high level of calcium in your blood. Calcium is usually stored in the bones, but the cancer can cause calcium to leak into the blood. This isn’t common in men with advanced prostate cancer. But if it happens, it’s important that it’s treated so it doesn’t develop into a more serious condition. Symptoms of hypercalcaemia include: • tiredness and lack of energy • loss of appetite and weakness • difficulty emptying your bowels (constipation) • confusion • feeling and being sick (nausea and vomiting) • pain in your stomach area • thirst • needing to urinate often (frequency). These symptoms can be quite common in men with advanced prostate cancer and might not be caused by hypercalcaemia. Tell your doctor or nurse if you have any of these symptoms so that they can find the cause. They will do a blood test to check levels of calcium in your blood. They may also do other tests and ask you about your symptoms. What can help? If you have hypercalcaemia, you may have to go into hospital or a hospice for a couple of days. You will be given fluid through a drip in your arm. This will help to flush calcium out of your blood and bring your calcium levels down. 28 Advanced prostate cancer: Managing symptoms and getting support Drugs called bisphosphonates are the main treatment for hypercalcaemia. They are very effective at lowering the 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 for advanced prostate cancer. Once your calcium levels are back to normal, you will have regular blood tests to keep an eye on them. Tell your doctor or nurse if your symptoms come back. As your cancer becomes more advanced, you may get hypercalcaemia more often, and treatment may not work as well. Your doctors should control any symptoms you have. Cancer Research UK provides more information about hypercalcaemia. Eating problems Some men with advanced prostate cancer have problems eating, or have a poor appetite. You might feel or be sick because of your cancer, or as a side effect of some treatments. These can include pain relieving drugs, chemotherapy, radiotherapy and bisphosphonates (see pages 32-33). 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. Specialist Nurses 0800 074 8383 prostatecanceruk.org 29 What can help? If you feel sick because of your treatment, your doctor can give you anti-sickness drugs. Steroids can also increase your appetite and are sometimes given along with other treatments. 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 sickness worse. Drink plenty of water, 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 help. 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 provide information and support about eating problems in advanced cancer. 30 Advanced prostate cancer: Managing symptoms and getting support 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 Specialist Nurses 0800 074 8383 prostatecanceruk.org 31 Treatments for advanced prostate cancer Hormone therapy Men with advanced prostate cancer will usually have hormone therapy, which can keep the cancer under control for many months or years. It can also help manage the symptoms of advanced cancer, such as bone pain. Read more about hormone therapy in our Tool Kit fact sheet, Hormone therapy. As with all treatments, hormone therapy may have side effects, such as erection problems, hot flushes and fatigue. You can read more about side effects and ways to manage them in our booklet, Living with hormone therapy: A guide for men with prostate cancer. Over time your cancer might start to grow again. If this happens the cancer is no longer responding so well to the original hormone therapy, but might still respond to other types of hormone therapy or to other treatments. You will normally continue the first type of hormone therapy. This is because it can still help to control the cancer, even if isn’t working so well. Read more in our Tool Kit fact sheet, Second-line hormone therapy and further treatment options. If you have any symptoms, there are treatments available to help manage them. Your treatment will depend on your symptoms, your general health and what treatments you’ve 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 you’re offered. 32 Advanced prostate cancer: Managing symptoms and getting support Pain-relieving drugs There are different types of pain-relieving drugs for different levels of pain and different ways of taking them. These include tablets, patches and injections. Some men worry about becoming addicted to opioids like morphine. But you might not need the strongest type of pain-relieving drugs. And if you do need morphine, it’s unlikely you’ll become addicted to it as your doctor will control the dose very carefully. Your doctor or palliative care nurse will help you find what’s best for you. Read more in our Tool Kit factsheet, Managing pain and advanced prostate cancer. 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. Read more in our Tool Kit factsheet, Radiotherapy for advanced prostate cancer. Specialist Nurses 0800 074 8383 prostatecanceruk.org 33 Bisphosphonates Bisphosphonate drugs treat pain caused by cancer that has spread to the bones. They 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 27) and manage osteoporosis (see page 19). If you’re not able to have bisphosphonates, you may be able to have a different drug called denosumab instead. Read more in our Tool Kit factsheet, Bisphosphonates for advanced prostate cancer. Chemotherapy Chemotherapy involves using anti-cancer drugs to kill cancer cells. This shrinks the cancer and slows its growth. It doesn’t cure prostate cancer but can help to control symptoms such as pain. Chemotherapy can also help some men live longer. Docetaxel is the standard chemotherapy for men with advanced prostate cancer that is no longer responding to hormone therapy. You will usually have the treatment every three weeks. Read more in our Tool Kit factsheet, Chemotherapy. 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 better ways of preventing, diagnosing, treating and controlling illnesses. They involve people who have volunteered to take part. There are a number of trials looking into treatments for advanced prostate cancer. If you would like to find out more about taking part in a clinical trial, ask your doctor or specialist nurse. You can also find details of prostate cancer trials on the Cancer Research UK website. Read more in our Tool Kit fact sheet, A guide to prostate cancer clinical trials. Specialist Nurses 0800 074 8383 prostatecanceruk.org 35 Complementary therapies Complementary therapies may be used alongside medical treatment. They include acupuncture, massage, yoga, meditation, reflexology and hypnotherapy. Some people find they help them deal with cancer symptoms and side effects such as tiredness. Some complementary therapies have side effects or may interfere with your cancer treatment. So make sure your doctor or nurse knows about any complementary therapies you’re using or thinking of trying. And make sure that any complementary therapist you see knows about your cancer and treatments. Some complementary therapies are available through hospices, GPs and hospitals, as part of the overall care they provide. But if you want to find a therapist yourself, make sure they are properly qualified and belong to a professional body. The Complementary and Natural Healthcare Council have advice about finding a therapist. Macmillan Cancer Support and Cancer Research UK have more information about different therapies available and important safety issues to think about when choosing a therapy. 36 Advanced prostate cancer: Managing symptoms and getting support The specialist palliative care team identified my needs and recommended treatments to reduce my pain. A personal experience Specialist Nurses 0800 074 8383 prostatecanceruk.org 37 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) The team of health professionals or specialists involved in your care. Your MDT is likely to include a clinical nurse specialist, oncologist, urologist, radiologist, and a palliative care doctor or nurse. Services vary depending on where you live. Clinical nurse specialist (CNS) A nurse who specialises in caring for men with prostate cancer. They may be the health professional you see most. They provide care and offer advice on managing prostate cancer and side effects. They also provide emotional support. Urologist and oncologist A urologist is a surgeon who specialises in conditions affecting the urinary system, including the prostate. An oncologist is a doctor who specialises in cancer treatments other than surgery, such as radiotherapy or chemotherapy. They both treat prostate cancer with hormone therapy and will be in your multi-disciplinary team. 38 Advanced prostate cancer: Managing symptoms and getting support Your GP and district nurse Your GP and district or community nurse will work with other health professionals to co-ordinate your care and offer you support and advice. They can also refer you to local services. They can visit you in your home and also help support your family. Palliative care team This includes specialist doctors and nurses who provide treatment to manage pain and other symptoms of advanced cancer. They also provide emotional, physical, practical 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 not all palliative care nurses are Macmillan nurses. And Macmillan nurses aren’t always palliative care nurses. This will depend on your local services. 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 Specialist Nurses 0800 074 8383 prostatecanceruk.org 39 Hospices Hospices provide a range of services to men living with advanced prostate cancer and their families. They can provide treatment to manage symptoms as well as emotional, spiritual, psychological and practical support. Hospices don’t just provide care for people at the end of their life. Some people go into a hospice for a short time to get their symptoms under control then go home again. For example, they might provide bisphosphonates to treat hypercalcaemia, or give blood transfusions for anaemia. Some hospices have nurses who can visit you at home, and some provide day therapy. This means you can 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 don’t need the hospice’s help at the moment, but they have already visited us at home, 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 Advanced prostate cancer: Managing symptoms and getting support Marie Curie nurses 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 can help with mobility and provide exercises to help improve fitness or ease pain. • Counsellors or psychotherapists can help you and your family 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 can give you advice about practical issues such as arranging for someone to support you at home. • Occupational therapists 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 or your GP should be able to arrange for an occupational therapist to visit you. Specialist Nurses 0800 074 8383 prostatecanceruk.org 41 Social services 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 yourself. Their telephone number will be in the phone book under the name of your local authority, on their website and at the town hall. 42 Advanced prostate cancer: Managing symptoms and getting support 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. A personal experience Specialist Nurses 0800 074 8383 prostatecanceruk.org 43 Dealing with advanced prostate cancer 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. Some men having hormone therapy find that they cry a lot, or have mood swings such as feeling upset and then angry. Men with advanced prostate cancer might also be at risk of depression, especially if they have symptoms such as pain or fatigue. You may feel a wide range of emotions, including anxiety, helplessness, anger and fear. And your emotions might change very quickly. 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’s not how you feel. There will be good days and bad days – make the most of the days you feel well, and find ways to get through the bad days. Everyone has their own way of dealing with advanced prostate cancer. 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. 44 Advanced prostate cancer: Managing symptoms and getting support Talking about it 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. It could be useful to speak to your nurse, doctor, GP or someone else in your medical team. They can help you understand your treatment and side effects, listen to your concerns, and put you in touch with other people who can help. Our Specialist Nurses can answer your questions and explain your treatment options. They’ve got time to listen to any concerns you or those close to you have about living with prostate cancer. Everything is confidential. It helps me to talk about it. It makes me feel that I’m hitting back at the cancer. A personal experience Specialist Nurses 0800 074 8383 prostatecanceruk.org 45 Talking to someone who’s been there It can sometimes help to talk to other men living with prostate cancer. • Our one-to-one support service is a chance to speak to someone who’s been there and understands what you’re going through. They can share their experiences and listen to yours. You could talk about treatments, dealing with side effects, or tell people about your cancer – whatever’s important to you. • Our online community is a place to talk about whatever’s on your mind. Anyone can ask a question or share an experience. It’s a place to deal with prostate cancer together. • At local support groups men get together to share their experiences of living with prostate cancer – you can ask questions, share worries and know that someone understands what you’re going through. Many also welcome partners, friends and relatives. To find out more about any of our services visit our website at prostatecanceruk.org/get-support or call our Specialist Nurses on 0800 074 8383. Counselling Some men find talking to a professional counsellor helpful. Counsellors are trained to listen and can help you find your own ways to deal with things. Many hospitals and hospices have counsellors or psychologists who specialise in helping people with cancer – ask your doctor or nurse if this is available. Your GP can also refer you or you can see a private counsellor. To find out more contact the British Association for Counselling & Psychotherapy. 46 Advanced prostate cancer: Managing symptoms and getting support Sorting out problems 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 about ways to manage them. 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). Medicines If you are feeling depressed or anxious, anti-depressants might help. Speak to your GP about this. It is important that you tell them about any other medicine or complementary therapies you are taking. Spiritual 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 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. Specialist Nurses 0800 074 8383 prostatecanceruk.org 47 Information and support Macmillan Cancer Support and Cancer Research UK both provide information about dealing with cancer. Or ask your GP or nurse about any local sources of support. The charities Mind and Sane 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 on 08457 90 90 90 (open 24 hours). It is helpful and relaxing to chat with other men. A shared experience lets you know that you’re not on your own. A personal experience 48 Advanced prostate cancer: Managing symptoms and getting support Specialist Nurses 0800 074 8383 prostatecanceruk.org 49 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 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. We are working with Relate to offer counselling sessions to individuals, couples or family members affected by prostate cancer. Many people find counselling a helpful way of exploring their feelings around difficult subjects. Counselling provides time and space to discuss difficult topics with a specialist. To find out more visit our website at prostatecanceruk.org/get-support 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 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 help if you need it. You could speak to your GP or nurse. If you have friends or neighbours nearby, they may be able to help, both practically and emotionally. See page 54 for more information about support you can get at home. Specialist Nurses 0800 074 8383 prostatecanceruk.org 51 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 prostatecanceruk.org/get-support 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 43-47 helpful. It is important that you look after yourself. Try to get enough rest, and if you feel unwell make sure you go to your doctor. Finding some time to yourself can help you relax. Doing something you enjoy can help take your mind off things. And regular exercise 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. Macmillan Cancer Support . have more information about caring for someone with advanced cancer. You can also read our booklet: When you’re close to a man with prostate cancer: A guide for partners and family. 52 Advanced prostate cancer: Managing symptoms and getting support My wife and I often 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 Specialist Nurses 0800 074 8383 prostatecanceruk.org 53 Daily life with advanced prostate cancer Advanced prostate cancer can affect whether you are able to work or carry out everyday tasks. Whatever your situation, there is advice and support available. Diet and physical activity A healthy diet and being physically active might help you feel more in control of your health. A healthy lifestyle can also help with some of the side effects of treatment – for example, in managing your weight if you are on hormone therapy. If you do make any changes to your lifestyle, do it gradually and go easy on yourself. Read more in our Tool Kit fact sheet, Diet, physical activity and prostate cancer. Work and money Advanced prostate cancer and the side effects of treatments can make it more difficult for you to work. You might decide to reduce your working hours, or stop working altogether. If your partner is caring for you, they might not be able to work as much. A lot of men with cancer and their partners worry about how they will cope financially. It is a good idea to get some advice about your individual circumstances. Depending on your situation, you may be entitled to sick pay if you are still employed, or to take early retirement. There may also be benefits you are entitled to claim. 54 Advanced prostate cancer: Managing symptoms and getting support The following organisations offer more information. • Macmillan Cancer Support provides financial information and guidance to people affected by cancer. • Your local Citizens Advice Bureau can offer independent and confidential advice, including help with benefits forms. • An independent financial advisor can advise you about your options. • A benefits advisor at your local social services department or hospital should be able to advise you on sources of financial support. • Carers UK and The Carers Trust provide information about financial help for carers. Find details of all these organisations on pages 66-72. At home You might find everyday tasks more difficult. If you need extra help, speak to your GP or get in touch with your local social services department for advice (see page 41). Social services can carry out an assessment of your needs and those of anyone caring for you. They can work out what services can help, and provide information about support available in your area. Some services may be free. Or social services may do an assessment to work out whether you need to contribute to paying for them. Social services can help in different ways. Specialist Nurses 0800 074 8383 prostatecanceruk.org 55 Equipment and adaptions to your home An occupational therapist may be able to advise you about practical things that can help make living at home easier. For example, they may suggest making some changes to your home, or special equipment that can help with everyday tasks. Your social services department or your GP will be able to refer you to an occupational therapist. Help at home You may be able to get help from a home care worker. Home care workers include care assistants, who can help with housework and shopping, and personal care assistants, who can help with tasks like getting washed and dressed. Respite care If your cancer means that you need ongoing care from your partner or a family member, respite care allows them to have a break. A professional will take over your care for a short time. There are different types of respite care: • a sitting service, where someone stays with you for a few hours, which allows your family member to take a break • a short stay in a residential home to give you a change of scenery and help you rest • a carer who comes in for a few days to allow your family member to take a short break away. 56 Advanced prostate cancer: Managing symptoms and getting support Not all local areas provide or pay for the same services. Speak to your GP, nurse or local social services (see page 41) about what practical support or respite care is available for you. Other organisations with information about practical support and how to access it include: • Macmillan Cancer Support • Age UK • Carers UK • NHS Choices • Disabled Living Foundation • Find Me Good Care. Find details of all these organisations on pages 66-72. Transport and travel Transport There are various schemes available to help with transport. These include the Blue Badge scheme for parking, the Mobility Scheme for help with buying or leasing a car and discounts or free travel on public transport. Contact your local council for more details. If you are having trouble getting around, ask your nurse or GP about local transport services. For example, the British Red Cross offer a door-to-door transport service. Specialist Nurses 0800 074 8383 prostatecanceruk.org 57 If you drive you don’t need to tell the Driver and Vehicle Licensing Agency (DVLA) – or the Driver and Vehicle Agency (DVA) if you live in Northern Ireland – that you have prostate cancer. You should tell them if: • your medication causes side effects likely to affect safe driving • your doctor is concerned about your fitness to drive • you develop any problems with the brain or nervous system • you can only drive vehicles with special adaptations or certain types of vehicle. If you are not sure whether any of these apply to you, speak to your doctor. You can find out more from the GOV.UK website. You should also tell your insurance company about your prostate cancer to make sure you’re properly covered. Travel Holidays can be a great way to relax. Having advanced prostate cancer should not stop you going away, but there are things you might want to consider. Read more in our Tool Kit fact sheet, Travel and prostate cancer. 58 Advanced prostate cancer: Managing symptoms and getting support Everyone’s experience of cancer, whether or not you are the patient or the carer, is very, very unique and I don’t think anybody can tell you how you should behave. A personal experience Specialist Nurses 0800 074 8383 prostatecanceruk.org 59 Thinking about the future It’s natural to find it difficult or upsetting to think about the future. But you might find that making plans helps you feel more prepared for what the future may hold. It can also reassure you about the future for your family. Although it might be very hard, it is a good idea to talk about your wishes to those close to you, and write them down, so that they can understand what is important to you. It also means that if you are ever in a situation where you can’t make decisions or speak for yourself, your healthcare team should know what you want. Find out more about planning for the future from Dying Matters and Compassion in Dying. Macmillan Cancer Support and Marie Curie Cancer Care also provide information about what will happen in the last few weeks and days of life. Thinking about your future care Think about what care you would like to receive in the future. This is called advance care planning. Planning your care can help to make sure you get the care you want. But not everyone wants to think about what care they want in the future, and it’s not something you have to do. There are lots of different ways you can plan ahead for your future treatment and care. Making an advance decision and writing an advance statement are two different examples of this. Advance decisions and advance directives In England and Wales, an advance decision to refuse treatment allows you to record any treatments you wish to refuse in certain circumstances. It’s used if there’s ever a time when you are unable 60 Advanced prostate cancer: Managing symptoms and getting support to make a decision for yourself, or if you can’t communicate what you want. For example, if you were unconscious, or were being given sedatives at the end of your life, you might decide in advance that you wouldn’t want treatment to prolong your life. An advance decision to refuse treatment is legally binding. This means your doctor or nurse would have to carry out your wishes. You can’t use an advance decision to ask for specific treatments, or to ask for your life to be ended. If you refuse treatment within an advance decision your doctor or nurse will still make sure you are comfortable and free of pain. In Scotland, you can make an advance directive to say what treatments you would refuse, if you were unable to decide for yourself or communicate your wishes. An advance directive isn’t legally binding, but your doctor or nurse would need to take it into account when making a decision on your behalf. In Northern Ireland, advance decisions or directives aren’t legally binding. But it’s still a good idea to record what treatments you would refuse if you couldn’t decide yourself or communicate your wishes. Your doctor or nurse should take this into account when making a decision on your behalf. It’s a good idea to put your advance decision or advance directive in writing – then it’s clearer to your doctor or nurse, and will be easier for them to follow. If your advance decision contains a refusal of treatment that will keep you alive, it must be in writing. Speak to your partner, family, doctor and nurse about what to include. Refusing certain treatments may put your life at risk, or Specialist Nurses 0800 074 8383 prostatecanceruk.org 61 cause you discomfort. Your doctor can talk to you about this in more detail, and help you think through the consequences of any decision carefully. Make sure your doctor or nurse knows about it, so that they can follow your wishes. You can change your advance decision or advance directive at any time. It’s a good idea to review it regularly to make sure it is still what you want. Advance statement An advance statement is a general statement about anything that is important to you in relation to your future health and wellbeing. It can include some of the following: • your wishes and preferences about the type of care you want • who you would like to be asked for a decision about your care, if you are unable to make it yourself • where you would like to be cared for – for example, at home, in a hospice or hospital • where you would like to die. An advance statement isn’t legally binding in the same way that an advance decision is. But your doctor does have to take your advance statement into account when making any decision on your behalf – although it might not always be possible for them to follow your wishes. Even if you say in your advance statement who you would like to make decisions on your behalf if you can’t, your doctor doesn’t legally have to follow what that person says. The only way to give another person the legal power to make health or care decisions on your behalf is by making a Lasting Power of Attorney for Health and Welfare (see page 62). 62 Advanced prostate cancer: Managing symptoms and getting support Support in making decisions These can be very difficult decisions to think about. You don’t have to make any decisions if you don’t want to. But if you think about these things early on, it helps your doctor or nurse plan your care according to your wishes. They will discuss these issues with you and keep a record of your decisions. You can also talk to your family about what you want, and help them understand your wishes. If you change your mind at any time, you can change your plans or cancel them. Compassion in Dying, Age UK, Marie Curie Cancer Care and NHS Choices have more information about making decisions about your future care. You can get a free template for making an advance decision from Compassion in Dying, and they can support you in writing it. Making a lasting power of attorney A lasting power of attorney is a legal document. It lets you appoint someone to make decisions on your behalf if you are unable to – for example, if you are unconscious. You can appoint one or more people to make decisions for you. In the legal paperwork, the people you appoint are called an attorney. They should be someone you trust, like a family member or friend. There are two separate types of lasting power of attorney. • A property and financial affairs lasting power of attorney covers issues around money and property. • A health and welfare lasting power of attorney covers decisions about your health, personal care and welfare. Specialist Nurses 0800 074 8383 prostatecanceruk.org 63 Age UK and Compassion in Dying provide information about making a lasting power of attorney. You can find more information and the forms you need to fill in from the GOV.UK website. Making a Will By making a Will you can make sure that your property and possessions will be passed on according to your wishes. If you die without making a Will, the state will decide who inherits your property. You don’t need a solicitor to make a Will, but using one makes sure that the correct legal processes are followed and your Will is valid. Age UK and Macmillan Cancer Support have more information about making a Will. You can find a solicitor from the Law Society. Dad had already thought about his Will, but he decided to update it and talked to us all about it. I think that helped him feel in control of the situation. A personal experience 64 Advanced prostate cancer: Managing symptoms and getting support Making a funeral plan Some people want to be involved in decisions about their own funeral, such as whether they will be buried or cremated, or what music and readings to have. Some people take comfort in making these plans. But other people prefer not to think about this. If you do want to think about your funeral, you could discuss your wishes with your family, or write them down for them. Some people include instructions for their funeral in their Will. You can get more information about planning a funeral from Age UK and the GOV.UK website. Macmillan Cancer Support and Marie Curie Cancer Care also produce a booklet for people in the final stages of life and their carers called End of life: a guide. We have talked about the end. Now it’s done, and we can move on to living each day as it comes. A personal experience Specialist Nurses 0800 074 8383 prostatecanceruk.org 65 More information from us The Tool Kit The Tool Kit information pack contains fact sheets that explain how prostate cancer is diagnosed, how it’s treated and how it may affect your lifestyle. Each treatment fact sheet also includes a list of suggested questions to ask your doctor. Call our Specialist Nurses for a personally tailored copy. Leaflets and booklets We have a range of other leaflets and booklets about prostate cancer and other prostate problems. To order publications: All our publications are free and available to order or download online. To order them: • Call us on 0800 074 8383 • Visit our website at prostatecanceruk.org/publications Call our Specialist Nurses If you want to talk about prostate cancer or other prostate problems, call our Specialist Nurses or text NURSE to 70004. You can also email or chat online with our nurses on our website. Visit prostatecanceruk.org/get-support Speak to our Specialist Nurses 0800 074 8383* prostatecanceruk.org * Calls are recorded for training purposes only. Confidentiality is maintained between callers and Prostate Cancer UK. 66 Advanced prostate cancer: Managing symptoms and getting support Other useful organisations Age UK www.ageuk.org.uk Advice line: 0800 169 6565 Information for older people on a range of subjects including health, finances and lifestyle. Bladder and Bowel Foundation www.bladderandbowelfoundation.org Helpline: 0845 345 0165 Information and support for all types of bladder and bowel problems. British Association for Counselling & Psychotherapy www.itsgoodtotalk.org.uk Telephone: 01455 883 300 Information about counselling and details of therapists in your area. British Red Cross www.redcross.org.uk A wide range of support and services, from medical-equipment loans and home assistance, to help with transport. Find your local Red Cross in the phonebook or online. Cancer Research UK www.cancerresearchuk.org Nurse helpline: 0808 800 4040 Patient information from Cancer Research UK. Specialist Nurses 0800 074 8383 prostatecanceruk.org 67 Carers Trust www.carers.org Telephone: 0844 800 4361 Information and support for carers. Carers UK www.carersuk.org Advice line: 0808 808 7777 Information and advice for carers, and details of local support groups. Citizens Advice www.citizensadvice.org.uk Online advice guide www.adviceguide.org.uk Advice on a wide range of issues including financial and legal matters. Find your nearest Citizens Advice Bureau in the phonebook or online. College of Sexual and Relationship Therapists www.cosrt.org.uk Telephone: 020 8543 2707 Information about sexual and relationship therapy, and details of accredited therapists. Compassion in Dying www.compassionindying.org.uk Infoline: 0800 999 2434 Information and support on your rights to make choices about treatment and care at the end of life. They provide free advance decision forms and support in completing one, and information on lasting powers of attorney for health and welfare. 68 Advanced prostate cancer: Managing symptoms and getting support Complementary and Natural Healthcare Council www.cnhc.org.uk Telephone: 020 7653 1971 Provides details of therapists who meet national standards. Continence Product Advisor www.continenceproductadvisor.org Information on products for different continence problems, written by health professionals. Cruse Bereavement Care www.crusebereavementcare.org.uk Helpline: 0844 477 9400 Support and information for people who have been bereaved. Disability Rights UK www.disabilityrightsuk.org Advice line: 0300 555 1525 Practical information guides about disability rights and benefits. And keys for accessible toilets across the UK. Disabled Living Foundation www.dlf.org.uk Helpline: 0300 999 0004 Expert advice about equipment and aids to help people live as independently as possible. Dying Matters www.dyingmatters.org Telephone: 0800 021 44 66 Information about planning for the future and advice on talking about dying. Specialist Nurses 0800 074 8383 prostatecanceruk.org 69 Find Me Good Care www.scie.org.uk/findmegoodcare Helps people make choices about care for themselves or others in England, including a database of services in your area. GOV.UK www.gov.uk Information about UK government services, including benefits, employment, and money matters. Hospice UK www.hospiceuk.org Telephone: 020 7520 8200 Information about hospice care, including a database of hospice and palliative care providers. Lymphoedema Support Network www.lymphoedema.org Telephone: 020 7351 4480 Information and support for people with lymphoedema, including details of support groups. Macmillan Cancer Support www.macmillan.org.uk Telephone: 0808 808 0000 Practical, financial and emotional support for people with cancer, their family and friends. 70 Advanced prostate cancer: Managing symptoms and getting support Maggie’s Centres www.maggiescentres.org Telephone: 0300 123 1801 Drop-in centres for cancer information and support. Includes an online support group. Marie Curie Cancer Care www.mariecurie.org.uk Telephone: 0800 716 146 Run hospices throughout the UK and a nursing service for people in their own home free of charge. Mind www.mind.org.uk Infoline: 0300 123 3393 Information and support for mental health issues such as depression or anxiety. National Osteoporosis Society www.nos.org.uk Helpline: 0845 450 0230 Information and support for people with fragile bones. Relate www.relate.org.uk Telephone: 0300 100 1234 Information, advice and relationship counselling and sex therapy. In Scotland, contact Relationships Scotland instead. Specialist Nurses 0800 074 8383 prostatecanceruk.org Samaritans www.samaritans.org.uk Helpline: 0845 790 9090 Confidential, non-judgemental emotional support, 24 hours a day, by telephone, email, letter or face to face. Sane www.sane.org.uk Helpline: 0845 767 8000 Information and support for anyone affected by mental health problems. Sue Ryder www.sueryder.org Telephone: 0845 050 1953 Palliative care through homecare, hospice and residential care services. The Law Society www.lawsociety.org.uk Telephone: 020 7320 5650 Find a solicitor in England and Wales. The Law Society of Northern Ireland www.lawsoc-ni.org Telephone: 028 9023 1614 Find a solicitor in Northern Ireland. 71 72 Advanced prostate cancer: Managing symptoms and getting support The Law Society of Scotland www.lawscot.org.uk Telephone: 0131 226 7411 Find a solicitor in Scotland. Turn2us www.turn2us.org.uk Helpline: 0808 802 2000 Help to access money that’s available through benefits, grants and other help. Winston’s Wish www.winstonswish.org.uk Helpline: 08452 03 04 05 Practical support and guidance for bereaved children and their families. Information about helping children when a relative is ill. Specialist Nurses 0800 074 8383 prostatecanceruk.org 73 About Prostate Cancer UK Prostate Cancer UK fights to help more men survive prostate cancer and enjoy a better life. We do this through Men United, our movement for everyone who believes men are worth fighting for. You can join Men United at prostatecanceruk.org/menunited At Prostate Cancer UK, we take great care to provide up-to-date, unbiased and accurate facts about prostate diseases. We hope these will add to the medical advice you have had and help you to make decisions. Our services are not intended to replace advice from your doctor. References to sources of information used in the production of this booklet are available at prostatecanceruk.org This publication was written and edited by: Prostate Cancer UK’s Health Information Team. It was reviewed by: • Wayne de Leeuw, Community and Outreach Team Manager, Dorothy House Hospice, Wiltshire • Louisa Fleure, Clinical Nurse Specialist, Guy’s Hospital, London • Usha Grieve, Information Strategy Lead, Compassion in Dying, London • Hazel Parsons, Nurse Specialist (Palliative Care), Dorothy House Hospice, Wiltshire • Lisa Pickering, Consultant Medical Oncologist, St George’s Healthcare Trust, London • Jonathan Shamash, Consultant Medical Oncologist, Barts and the London NHS Trust and Newham University Hospital NHS Trust, London • Prostate Cancer UK Volunteers • Prostate Cancer UK Specialist Nurses 74 Advanced prostate cancer: Managing symptoms and getting support Specialist Nurses 0800 074 8383 prostatecanceruk.org 75 Donate today – help others like you Did you find this information useful? Would you like to help others in your situation access the facts they need? Every year, 40,000 men face a prostate cancer diagnosis. Thanks to our generous supporters, we offer information free to all who need it. If you would like to help us continue this service, please consider making a donation. Your gift could fund the following services: • £10 could buy a Tool Kit – a set of fact sheets, tailored to the needs of each man with vital information on diagnosis, treatment and lifestyle. • £25 could give a man diagnosed with prostate cancer unlimited time to talk over treatment options with one of our specialist nurses. To make a donation of any amount, please call us on 0800 082 1616, visit prostatecanceruk.org/donate or text PROSTATE to 70004*. There are many other ways to support us. For more details please visit prostatecanceruk.org/get-involved *You can donate up to £10 via SMS and we will receive 100% of your donation. Texts are charged at your standard rate. For full terms and conditions and more information, please visit prostatecanceruk.org/terms Speak to our Specialist Nurses 0800 074 8383* prostatecanceruk.org Like us on Facebook: Prostate Cancer UK Follow us on Twitter: @ProstateUK Prostate Cancer UK is a registered charity in England and Wales (1005541) and in Scotland (SC039332). Registered company number 2653887. 2915 Call our Specialist Nurses from Mon to Fri 9am - 6pm, Wed 10am - 8pm * Calls are recorded for training purposes only. Confidentiality is maintained between callers and Prostate Cancer UK. ADV/APR15 © Prostate Cancer UK January 2015 To be reviewed January 2017