A practical guide to understanding cancer This booklet is one of a series of booklets on prostate cancer. It gives information about advanced (metastatic) prostate cancer. This is when prostate cancer has spread beyond the prostate gland to other parts of the body. Our information booklets on prostate cancer are: •• Having tests for prostate cancer •• Understanding the PSA test •• Understanding early (localised) prostate cancer •• Understanding locally advanced prostate cancer •• Understanding advanced (metastatic) prostate cancer It’s important to check with your hospital consultant or nurse specialist that this is the right booklet for you, and whether you need any additional information. If you would like more information about these booklets, you can contact our cancer support specialists on 0808 808 00 00. They will be able to send you the booklet or booklets that contain the information you need. Contents Contents About this booklet 4 What is cancer? 5 The lymphatic system 7 The prostate gland 8 Prostate cancer 9 Risk factors and causes 11 Symptoms 15 How advanced prostate cancer is diagnosed 18 Staging and grading 26 Treatment 28 Hormonal therapy 34 Surgery 43 Chemotherapy 46 Radiotherapy 52 Controlling symptoms 55 Complementary therapies 62 Research – clinical trials 63 Dealing with the side effects of treatment 65 Coping with advanced prostate cancer 69 Your feelings 71 If you are a relative or friend 75 1 Understanding advanced (metastatic) prostate cancer Relationships 76 Talking to children 78 What you can do 79 Who can help? 80 Financial help and benefits 82 Work 85 How we can help you 86 Other useful organisations 91 Further resources 101 Your notes and questions 105 TNM staging 106 2 Understanding advanced (metastatic) prostate cancer 3 Understanding advanced (metastatic) prostate cancer About this booklet This booklet is about advanced (metastatic) prostate cancer. This is when prostate cancer has spread beyond the prostate gland to other parts of the body. We hope it answers some of your questions and helps you deal with some of the feelings you may have. We’ve also listed other sources of support and information, which we hope you’ll find useful. We can’t advise you about the best treatment for you. This information can only come from your doctor, who knows your full medical history. If you’d like to discuss this information, call the Macmillan Support Line free on 0808 808 00 00, Monday–Friday, 9am–8pm. If you’re hard of hearing you can use textphone 0808 808 0121, or Text Relay. For non-English speakers, interpreters are available. Alternatively, visit macmillan.org.uk Turn to pages 91–104 for some useful addresses and websites, and page 105 to write down any notes or questions you want to ask your doctor or nurse. If you find this booklet helpful, you could pass it on to your family and friends. They may also want information to help them support you. 4 What is cancer? What is cancer? The organs and tissues of the body are made up of tiny building blocks called cells. Cancer is a disease of these cells. Cancer is not a single disease with a single cause and a single type of treatment. There are more than 200 different types of cancer, each with its own name and treatment. Although cells in different parts of the body may look and work differently, most repair and reproduce themselves in the same way. Normally, cells divide in an orderly and controlled way. But if for some reason the process gets out of control, the cells carry on dividing and develop into a lump called a tumour. Tumours are either benign (non-cancerous) or malignant (cancerous). Doctors can tell if a tumour is benign or malignant by removing a piece of tissue (biopsy) and examining a small sample of cells under a microscope. Normal cells Cells forming a tumour 5 Understanding advanced (metastatic) prostate cancer In a benign tumour, the cells do not spread to other parts of the body and so are not cancerous. However, they may carry on growing at the original site, and may cause a problem by pressing on surrounding organs. In a malignant tumour, the cancer cells have the ability to spread beyond the original area of the body. If the tumour is left untreated, it may spread into surrounding tissue. Sometimes cells break away from the original (primary) cancer. They may spread to other organs in the body through the bloodstream or lymphatic system (see next page). When the cancer cells reach a new area they may go on dividing and form a new tumour. This is known as a secondary cancer or a metastasis. 6 The lymphatic system The lymphatic system The lymphatic system is part of the immune system – the body’s natural defence against infection and disease. It’s made up of organs such as bone marrow, the thymus, the spleen, and lymph nodes. The lymph nodes throughout the body are connected by a network of tiny lymphatic tubes (ducts). The lymphatic system has two main roles: it helps to protect the body from infection and it drains fluid from the tissues. Neck (cervical) lymph nodes Thymus Armpit (axillary) lymph nodes Spleen Groin (inguinal) lymph nodes The lymphatic system 7 Understanding advanced (metastatic) prostate cancer The prostate gland The prostate is a small gland only found in men. It’s about the size of a walnut and gets a little bigger with age. It surrounds the first part of the tube (urethra) that carries urine from the bladder along the penis. Spine Pubic bone Vas deferens Prostate gland Bladder Seminal vesicle Rectum Penis Urethra Testicle Scrotum The male sex organs and surrounding structures 8 Prostate cancer The prostate produces a thick, white fluid that mixes with the sperm produced by the testicles to make semen. It also produces a protein called prostate-specific antigen (PSA) that turns the semen into liquid. The prostate gland is surrounded by a sheet of muscle and a fibrous capsule. The growth of prostate cells and the way the prostate gland works is dependent on the male sex hormone testosterone, which is produced in the testicles. The back of the prostate gland is close to the rectum (back passage). Near the prostate are collections of lymph nodes. These are small glands, each about the size of a baked bean. Prostate cancer Prostate cancer generally affects men over 50 and is rare in younger men. It’s the most common type of cancer in men. Around 37,000 men in the UK are diagnosed with prostate cancer each year. It differs from most other cancers in the body because small areas of cancer within the prostate are very common and may stay dormant (inactive) for many years. It’s thought that about half (50%) of all men over 50 may have cancer cells in their prostate, and 8 out of 10 (80%) men over 80 have a small area of prostate cancer. Most of these cancers grow extremely slowly and so will never cause any problems, particularly in elderly men. 9 Understanding advanced (metastatic) prostate cancer In a small proportion of men, prostate cancer can grow more quickly and in some cases may spread to other parts of the body. Advanced prostate cancer Prostate cancer is usually diagnosed in the early stages before it starts to spread outside the prostate gland. But in some men, the prostate cancer will be advanced when it is first diagnosed. Advanced prostate cancer can also occur in men who have previously been treated for early or locally advanced prostate cancer but their cancer has come back (relapsed or recurred). We discuss the different stages of prostate cancer in more detail on pages 26–27. Prostate cancer cells can sometimes spread beyond the prostate gland. The cancer cells may travel around the body in the bloodstream or, less commonly, the lymphatic system (see page 7). When these cells reach a new area of the body, they may go on dividing and form a new tumour called a metastasis or secondary tumour. The most common places for prostate cancer to spread are to bones such as the spine, pelvis, thigh bone (femur) and ribs. Usually, the cancer cells will spread to a number of different places in the bones rather than to a single site. Sometimes prostate cancer can affect the bone marrow. This is the spongy material that’s found in the centre of most bones. It’s also where the body’s blood cells are made (see page 16). Prostate cancer can also spread to the lymph nodes, and occasionally it may affect the lungs, brain or liver. 10 Risk factors and causes This booklet covers advanced prostate cancer. We have separate booklets about early (localised) and locally advanced prostate cancer. To order one of these booklets or if you’re unsure which booklet is suitable for you, call our cancer support specialists on 0808 808 00 00. Risk factors and causes Researchers are trying to find out more about the causes of prostate cancer. Although the causes are still unknown, there are some risk factors that are known to increase a man’s chance of developing the disease. Age This is the strongest risk factor for prostate cancer. Men under 50 have a very low risk of prostate cancer, but their risk increases as they get older. Ethnicity Some ethnic groups have a greater chance of developing prostate cancer than others. For example, black African and black Caribbean men are more likely to develop prostate cancer than white men. Asian men have a lower risk of developing it. 11 Understanding advanced (metastatic) prostate cancer 12 Risk factors and causes Family history Men who have close relatives (a father, brother, grandfather or uncle) who have had prostate cancer are slightly more likely to develop it themselves. It’s thought that a man’s risk of developing prostate cancer increases if: • their father or brother developed prostate cancer at or under the age of 60 • more than one man on the same side of the family has had prostate cancer. If this is the case in your family, it may indicate that a faulty gene is present. A specific gene linked to prostate cancer has not yet been identified. However, research has shown that faulty genes that are linked to a higher risk of breast cancer (called BRCA 1 and BRCA 2) may also increase the risk of getting prostate cancer. So, if there’s a strong family history of breast cancer on the same side of the family (especially before the age of 40), it could indicate that a faulty gene may be present. Only a small number of prostate cancers (5–10%, or less than one in ten cases) are thought to be due to an inherited faulty gene running in the family. If you’re concerned about your family history of prostate cancer, we can send you our leaflet Are you worried about prostate cancer? We also have a booklet called Cancer genetics – how cancer sometimes runs in families. Call 0808 808 00 00 to order these. 13 Understanding advanced (metastatic) prostate cancer Diet Men from western countries such as the UK and USA have a higher rate of prostate cancer than men from eastern countries such as China and Japan. It’s thought that this might be because western diets tend to be higher in animal fat (including dairy products) and lower in fresh fruit and vegetables. Asian men also tend to have a higher intake of soy in their diet. Soy and soy products contain chemicals called phyto-oestrogens. Researchers believe these might reduce the risk of prostate cancer, but more research is needed to confirm this. A high intake of calcium (such as from dairy foods) may increase the risk of developing prostate cancer. However, it’s important not to cut dairy products out altogether, as they provide essential calcium for healthy bones. Research studies have looked into whether tomatoes and tomato products (such as ketchup) may help to protect against prostate cancer. This may be because they contain high levels of a substance called lycopene. Studies so far have shown mixed results and more research is needed. 14 Symptoms Symptoms Prostate cancer is often slow-growing and symptoms may not occur for many years. The symptoms of advanced prostate cancer may include those that are due to an enlarged prostate gland, or those that are due to secondary cancers elsewhere in the body. Symptoms of an enlarged prostate gland can include: • difficulty passing urine • passing urine more frequently than usual, especially at night • pain when passing urine • blood in the urine (this is uncommon). The symptoms due to secondary cancers will depend on where in the body the secondary cancers are. However, there are a few general symptoms which some men have, including being more tired than usual, feeling generally unwell and having less of an appetite. Secondary cancer in the bones The first sign of a secondary cancer in the bones is usually a nagging ache in the affected bone. This can become painful, making it difficult to sleep at night or to move around without taking painkillers. The pain is generally there day and night and is different from other types of pain like arthritis, which is often worse early in the morning and not there all the time. 15 Understanding advanced (metastatic) prostate cancer A secondary cancer in the bone may gradually make the bone weaker. Pain and weakness can make getting around difficult, and a bone that is very weak may break (fracture) more easily. If the bones in the spine are affected, this can sometimes lead to weakness and tingling or numbness in the legs. This is due to the cancer causing pressure on the spinal cord and is known as malignant spinal cord compression (see pages 57–59). It’s important to let your doctor know immediately if you have these symptoms. We can send you a fact sheet with more information about malignant spinal cord compression. When bones are affected by cancer cells, extra calcium may be released into the blood. A raised blood calcium level is called hypercalcaemia (see pages 60–61). This can cause symptoms such as tiredness, feeling sick (nausea), constipation, thirst, poor appetite and confusion. Secondary cancer in the bone marrow Sometimes prostate cancer can spread to the bone marrow. This is the spongy material found in the centre of our bones. It produces the different types of blood cells in the blood, which include: • red blood cells, which carry oxygen around the body • white blood cells, which help fight infection • platelets, which help the blood to clot and prevent bleeding. If the bone marrow is unable to produce enough blood cells you may become anaemic, be more likely to get infections or to have bruising or bleeding. 16 Symptoms Other symptoms Prostate cancer can occasionally affect other parts of the body such as the lungs, lymph nodes, brain or liver. If you notice any new symptoms that last for a couple of weeks or more, you should discuss them with your cancer specialist. It’s important to remember that any of the symptoms mentioned here can be caused by conditions other than cancer. 17 Understanding advanced (metastatic) prostate cancer How advanced prostate cancer is diagnosed If you have had early or locally advanced prostate cancer in the past, you may be attending the hospital or seeing your GP for regular check-ups and blood tests. If you develop new symptoms, you’ll have tests to see if the cancer has spread. These will usually include a PSA test and a bone scan. Other tests will depend on your symptoms. Some men are found to have prostate cancer after being investigated for bone pain. If you have bone pain but no other symptoms, your GP may arrange for you to have an x-ray or scan of the painful area. This may be an isotope bone scan, x-ray, CT scan or MRI scan (see pages 21–23). If these tests suggest there is a secondary cancer in the bones, further tests will be done to find out where the cancer started. The following tests may be done to diagnose advanced prostate cancer. PSA test A sample of blood is taken to check for PSA (prostate-specific antigen). PSA is a protein produced by the prostate and a small amount is normally found in the blood. Men with prostate cancer tend to have a raised level of PSA in their blood. However, this test isn’t always reliable, as PSA levels also get higher as men get older. 18 How advanced prostate cancer is diagnosed 19 Understanding advanced (metastatic) prostate cancer The level of PSA can also be raised by: • urine infections or infections of the prostate (prostatitis) • recent prostate biopsies • having a urinary catheter (a tube to drain urine) • prostate or bladder surgery • prostate massage. In most men with advanced prostate cancer the PSA level will usually be high. Once the cancer has been treated, the PSA level is likely to fall. Measuring PSA levels can help to assess the cancer and see how well treatment is working. Biopsy You might be offered a biopsy. This is when several small samples of tissue (usually around 10) are taken from the prostate to be looked at under a microscope. However, some men with advanced prostate cancer may have a very high PSA or their scan results may show that the cancer has spread. In this case, they may start treatment without having a biopsy. Your doctor may also decide not to do a biopsy if you’re very ill or have certain other medical conditions. During the procedure, a needle is passed through the wall of the back passage (rectum) and into the prostate. This test is often uncomfortable and can sometimes be painful. You may be given a local anaesthetic to reduce the discomfort. Antibiotics are also given to reduce the risk of infection. 20 How advanced prostate cancer is diagnosed It’s important to drink plenty of fluids for 24 hours after this test. For up to a few weeks afterwards, you may notice blood in your semen during sex. You may also experience a small amount of blood in your urine or when opening your bowels. If these symptoms persist, speak to your doctor. Isotope bone scan The most common place for prostate cancer to spread to is to the bones. A bone scan can show abnormal areas of bone. A very small amount of a mildly radioactive liquid is injected into a vein, usually in your arm. A scan is then taken of the whole body. Abnormal bone absorbs more of the radioactive substance than normal bone and shows up on the scan as highlighted areas called hot spots. After the injection you’ll have to wait for up to three hours before the scan can be taken, so it’s a good idea to take a book or magazine with you. The level of radioactivity that is used is very small and doesn’t cause any harm. However, you may be asked to avoid long periods of close contact with pregnant women or children for 2–3 days after the scan. The staff at the hospital will tell you more about this. This scan can also detect other conditions affecting the bones such as arthritis. This means that further tests, such as an x-ray of the abnormal area, may be necessary to confirm that it is cancer. 21 Understanding advanced (metastatic) prostate cancer X-rays X-rays of the chest and bones are sometimes taken to check your general health and to see if the cancer has spread to other parts of the body. MRI (magnetic resonance imaging) scan This test uses magnetism to build up a detailed picture of areas of your body. The scanner is a powerful magnet so you may be asked to complete and sign a checklist to make sure it’s safe for you. The checklist asks about any metal implants you may have, for example a pacemaker, surgical clips or bone pins. You should also tell your doctor if you’ve ever worked with metal or in the metal industry as very tiny fragments of metal can sometimes lodge in the body. If you do have any metal in your body, it’s likely that you won’t be able to have an MRI scan. In this situation, another type of scan can be used. Before the scan, you’ll be asked to remove any metal belongings including jewellery. Some people are given an injection of dye into a vein in the arm, which doesn’t usually cause discomfort. This is called a contrast medium and can help the images from the scan to show up more clearly. During the test you’ll lie very still on a couch inside a long cylinder (tube) for about 30 minutes. It’s painless but can be slightly uncomfortable, and some people feel a bit claustrophobic. It’s also noisy, but you’ll be given earplugs or headphones. You can hear, and speak to, the person operating the scanner. 22 How advanced prostate cancer is diagnosed CT (computerised tomography) scan A CT scan takes a series of x-rays, which build up a three-dimensional picture of the inside of the body. The scan takes 10–30 minutes and is painless. It uses a small amount of radiation, which is very unlikely to harm you and will not harm anyone you come into contact with. You will be asked not to eat or drink for at least four hours before the scan. Someone having a CT scan You may be given a drink or injection of a dye, which allows particular areas to be seen more clearly. This may make you feel hot all over for a few minutes. It’s important to let your doctor know if you are allergic to iodine or have asthma, because you could have a more serious reaction to the injection. You’ll probably be able to go home as soon as the scan is over. 23 Understanding advanced (metastatic) prostate cancer Waiting for your test results It will probably take from several days to a couple of weeks for the results of the tests to be ready. The results will be used by the doctors to decide on the best treatment for you. Waiting for test results can be a difficult time and you may need support from your family, friends or from one of the support organisations on pages 91–95. You can also talk to one of our cancer support specialists on 0808 808 00 00. 24 Understanding advanced (metastatic) prostate cancer 25 Understanding advanced (metastatic) prostate cancer Staging and grading Staging The stage of a cancer is a term used to describe its size and whether it has spread. Knowing the stage of your cancer helps doctors decide the best treatment for you. There are a few different staging systems for prostate cancer. Two of the most commonly used systems are a number staging system and the TNM staging system. The simplified number system is described below: • Stage 1 The cancer is very small and confined to the prostate. It can’t be felt during a rectal examination. • Stage 2 The cancer can be felt as a hard lump during a rectal examination, but it’s still within the prostate gland. • Stage 3 The cancer has started to break through the outer capsule of the prostate gland and may be in the nearby tubes that transport semen (seminal vesicles – see page 8). • Stage 4 The cancer has spread beyond the prostate gland to nearby structures such as the bladder or back passage (rectum), or to more distant organs such as the bones or liver. This booklet covers advanced prostate cancer (stage 4). We have separate booklets about early (localised) prostate cancer (stages 1 and 2) and locally advanced prostate cancer (stage 3). 26 Staging and grading The TNM staging system is more complicated than the number staging system. We have more detailed information about TNM staging at the back of this booklet if you’d like to know more – see pages 106–109. Grading If your doctors did a biopsy of your prostate, they will look at a sample of the cancer cells under a microscope to find out the grade of your cancer. Prostate cancer is graded according to the appearance of the cancer cells. The grade gives doctors an idea of how quickly the cancer might grow. There are several grading systems, but the Gleason system is the most commonly used. This system can help doctors decide which treatment might be best, as it gives them more information about the cancer. The Gleason system looks at the pattern of cancer cells within the prostate. There are five patterns, which are graded from 1–5. 1 appears very similar to normal prostate tissue whereas 5 appears very different to normal tissue. The biopsy samples are each graded and then the two most commonly occurring patterns are added together to get a Gleason score of between 2–10. The lower the Gleason score, the lower the grade of the cancer. Low-grade cancers (6 or under) are usually slow-growing and less likely to spread. A score of 7 is a moderate grade. High-grade tumours (8–10) are likely to grow more quickly and are more likely to spread. High-grade tumours are sometimes called aggressive tumours. Prostate biopsies with a Gleason score of 2 are rare. It’s more common to get scores from 6–10. 27 Understanding advanced (metastatic) prostate cancer Treatment When prostate cancer has spread beyond the prostate gland and is affecting other parts of the body, it can no longer be cured. However, treatment can usually be given to control the cancer for several years, relieve any symptoms and improve your quality of life. Hormonal therapy (see page 34–41) is recommended to most men who have advanced prostate cancer. A range of hormonal therapies are available. Surgery to remove the prostate gland isn’t suitable for men with advanced prostate cancer, but occasionally a transurethral resection of the prostate (TURP) can help to relieve problems with passing urine (see page 43–46). Chemotherapy (see pages 46–51) may be used if hormonal therapy is no longer able to control the cancer. Radiotherapy (see pages 52–54) is often used to treat bone pain. There are other treatments available that can effectively relieve and control any symptoms you have (see pages 55–62). Deciding on the best treatment isn’t always straightforward and a number of factors have to be taken into account. The most important of these are: • your general health • where the cancer is and the symptoms it’s causing 28 Treatment • the possible benefits of treatment • the possible side effects of treatment • how you feel about treatment and whether you’re willing to risk getting the side effects for the possible benefits in controlling your cancer • whether you’ve had treatment before and, if so, which treatments. We have a video on our website about treating advanced prostate cancer. You can view it at macmillan.org.uk/treatmentforadvancedprostatecancer How treatment is planned In most hospitals, a team of specialists will discuss the possible treatments for your situation. This multidisciplinary team (MDT) will include: • a surgeon (urologist) • a medical oncologist (specialist in chemotherapy and other drugs for cancer) • a clinical oncologist (specialist in radiotherapy, chemotherapy and other drugs for cancer) • a specialist nurse. It may also include other healthcare professionals such as doctors who specialise in symptom control (palliative care doctors), a dietitian, physiotherapist, occupational therapist, psychologist or counsellor. 29 Understanding advanced (metastatic) prostate cancer Second opinion The MDT uses national treatment guidelines to decide the most suitable treatment for you. Even so, you may want another medical opinion. If you feel it will be helpful, you can ask either your specialist or GP to refer you to another specialist for a second opinion. Getting a second opinion may delay the start of your treatment, so you and your doctor need to be confident that it will give you useful information. If you do go for a second opinion, it may be a good idea to take a relative or friend with you, and have a list of questions ready so that you can make sure your concerns are covered during the discussion. Advantages and disadvantages of treatments It’s helpful to be aware of the advantages, possible disadvantages and side effects of the treatments before you have them. Your doctor or specialist nurse will explain these to you. You can then decide what is best for your situation. The advantages and disadvantages of individual treatments for advanced prostate cancer are highlighted in green boxes in the relevant treatment sections on pages 34–54. It’s important to remember that everyone reacts differently to cancer treatment. It’s impossible for doctors to accurately predict who will and who won’t be affected by the side effects of each treatment, so you need to ask about the risks beforehand and have plenty of opportunity to discuss them. 30 Treatment Doctors and nurses are used to people asking questions about treatment. It may also help to discuss the options with your cancer specialist, specialist nurse or with our cancer support specialists on 0808 808 00 00. You may find it helpful to make a list of questions and to take a relative or close friend with you to help you remember the discussion. You can use page 105 to write down any notes and questions you have. Remember, there are often decisions to be made about which treatment to have, or whether to have treatment at all. You can take as large or small a part in making those decisions as you wish – your healthcare team can help you make the most appropriate decision for your situation. You can always ask for more time if you feel that you can’t make a decision when your treatment is first explained to you. We have a booklet called Making treatment decisions – call us on 0808 808 00 00 to order a copy. 31 Understanding advanced (metastatic) prostate cancer Giving your consent Before you have any treatment, your doctor will explain its aims. They will ask you to sign a form saying that you give permission (consent) for the hospital staff to give you the treatment. No medical treatment can be given without your consent, and before you are asked to sign the form you should be given full information about: • the type and extent of the treatment • its advantages and disadvantages • any significant risks or side effects • any other treatments that may be available. If you don’t understand what you’ve been told, let the staff know straight away so they can explain again. Some cancer treatments are complex, so it’s not unusual for people to need repeated explanations. You are also free to choose not to have the treatment. The staff can explain what may happen if you don’t have it. It’s essential to tell a doctor, or the nurse in charge, so they can record your decision in your medical notes. You don’t have to give a reason for not wanting treatment, but it can help to let the staff know your concerns so they can give you the best advice. 32 Understanding advanced (metastatic) prostate cancer 33 Understanding advanced (metastatic) prostate cancer Hormonal therapy Hormonal therapy is the main treatment for men with advanced prostate cancer. It can shrink the cancer, delay its growth and reduce symptoms. Prostate cancer depends on the hormone testosterone in order to grow. Testosterone is produced by the testicles and a small amount is also produced by the adrenal glands. Hormonal therapies work by reducing the amount or activity of testosterone in the body. There are different types of hormonal therapies that can be used to treat advanced prostate cancer. You may be offered treatment with more than one type. If you’ve had hormone treatment before, you may be advised to try a different type. Hormonal therapies can be given as injections (see next page) or tablets (see page 37). Occasionally, an operation called a subcapsular orchidectomy (see pages 39–40) may be done to remove the part of the testicles that produces testosterone. Hormonal treatment works well for most men with advanced prostate cancer, and the cancer can often be controlled for some time. Your doctor will check how well the cancer is responding to treatment by checking your symptoms and examining you. Your PSA level will also be measured, as this is usually a good guide to how effective treatment is. If the cancer starts to grow again, your doctor may suggest you change to a different hormonal therapy drug. Although there are several drugs that can be used, at some point the cancer will stop responding to hormonal therapy. 34 Hormonal therapy This is known as hormone-refractory prostate cancer or castration-refractory prostate cancer. If hormonal therapy is no longer working, your doctor may suggest chemotherapy (see pages 46–51) or other treatments to relieve symptoms (palliative treatments – see pages 55–62). Hormonal therapy injections GnRH agonists (pituitary down-regulators) This type of hormonal therapy ‘switches off’ the production of testosterone by the testicles in an indirect way. The pituitary gland is a gland in the brain that produces hormones that control and regulate the other glands in the body. Gonadotrophin-releasing hormone (GnRH) is a hormone that stimulates the pituitary gland to produce a hormone called luteinising hormone (LH), which stimulates the testicles to make testosterone. GnRH agonists reduce the levels of LH produced by the pituitary gland, and this in turn lowers the level of testosterone. These drugs are also called pituitary down-regulators. There may be a temporary increase in testosterone levels for the first few days of treatment, which may increase your symptoms. This is known as tumour flare and is normal. Your doctor may prescribe an anti-androgen tablet (see page 37) to prevent this. If you have any problems, let your doctor know. 35 Understanding advanced (metastatic) prostate cancer Examples of this type of hormonal therapy are: • goserelin (Zoladex®) • leuprorelin (Prostap®) • triptorelin (Decapeptyl®). These are usually given as a pellet (goserelin) injected under the skin of the tummy (abdomen), or as a liquid (leuprorelin or triptorelin) injected under the skin or into a muscle. Injections are usually given either monthly or every three months. Another GnRH agonist called Vantas® (histrelin acetate) may sometimes be used to treat advanced prostate cancer. It’s given just once a year as an implant under the skin. It’s approved for use in the NHS in Scotland by the SMC (Scottish Medicines Consortium). However, it is not widely available on the NHS in England, Wales and Northern Ireland. GnRH antagonists This type of hormonal therapy stops the production of luteinising hormone by the pituitary gland and so reduces the level of testosterone produced by the testicles. The cancer cells then grow more slowly or stop growing altogether, and the cancer may shrink in size. GnRH antagonists works much more quickly than GnRH agonists and don’t cause tumour flare. Degarelix (Firmagon®) is a GnRH antagonist. It’s usually given as a liquid injected under the skin of the tummy every month. 36 Hormonal therapy Hormonal therapy tablets (anti-androgens) Some hormonal therapy drugs work by attaching themselves to proteins (receptors) in the cancer cells. This blocks the testosterone from acting on the cancer cells. These drugs are called anti-androgens and are given as tablets. Commonly used anti-androgens are: • bicalutamide (Casodex®) • flutamide (Chimax®, Drogenil®) • cyproterone acetate (Cyprostat®). Anti-androgen tablets can be used alone as hormonal treatment for prostate cancer, but they can also be used before treatment with a pituitary down-regulator (GnRH agonist) starts. This prevents tumour flare. The tablets are usually started two weeks before starting with the pituitary down-regulator and continued for a week after you’ve had the injection. Anti-androgen withdrawal response If hormonal therapy with an anti-androgen drug has been given for some months or years and the cancer begins to grow again, stopping the anti-androgen drug may make the cancer shrink for a while. This is known as an anti-androgen withdrawal response and occurs in up to one in four men (25%) who stop anti-androgen therapy. Intermittent hormonal therapy The side effects of hormonal therapy (see pages 38–39) can influence the quality of life for some men. Intermittent hormonal therapy aims to improve this. If you have very bad side effects from hormonal therapy, your doctors may stop your 37 Understanding advanced (metastatic) prostate cancer treatment temporarily once you have responded to treatment. This is to reduce the side effects. Once the disease has started to progress again, hormonal therapy is re-started. Your PSA levels will be monitored during the time you aren’t having treatment. The outcome of this approach to treatment is still being researched. Your doctor can discuss the advantages and disadvantages of it with you. Side effects of hormonal therapy Unfortunately, most hormonal therapies can cause erection difficulties (impotence) and loss of sexual desire (libido) for as long as the treatment is given. If the treatment is stopped, the problem may resolve. Some anti-androgens are less likely to cause impotence than others. In some men who have hormonal therapies, the side effects that cause the greatest problems are hot flushes and sweating. These stop if the treatment is stopped and the testosterone levels recover. There are medicines that can help with these side effects – we can send you information about these. Hormonal treatment can also make you put on weight and feel tired, both physically and mentally. Some drugs (most commonly flutamide and bicalutamide when given on their own) may also cause your breasts to swell and feel tender. Your doctors may advise a short course of low-dose radiotherapy to your breasts before you start the drugs to try to prevent swelling. If breast swelling does occur, a tablet called tamoxifen may help to ease this. Different drugs have different side effects, so it’s important to discuss these with your doctor before you start treatment. 38 Hormonal therapy Being aware of the possible side effects can make them easier to cope with. Advantages Hormonal therapy can shrink the cancer, delay its growth and relieve symptoms for many months or years. Disadvantages Hormonal therapy can cause a range of side effects that include breast swelling, hot flushes, weight gain, fatigue, difficulty getting and maintaining an erection (impotence) and a lowered sex drive (libido). We have fact sheets about individual hormonal therapy drugs with more information about how they work and tips on coping with possible side effects. We also have a fact sheet called Prostate cancer and hormonal symptoms, which you may find helpful. Subcapsular orchidectomy (removal of part of the testicles) This is an operation to remove the part of the testicles that produces testosterone. A small cut is made in the scrotum (the sac that holds the testicles – see diagram on page 8), and the part of the testicles that produces testosterone is removed. After the operation the scrotum will appear smaller than it was before. The operation can be done under a local anaesthetic without the need to stay in hospital overnight. Sometimes both testicles are completely removed (bilateral orchidectomy). 39 Understanding advanced (metastatic) prostate cancer Some men find the idea of this operation distressing. You may find it helpful to talk through the procedure with your cancer specialist, who can give you more information about what this operation involves. After the operation, you’ll have some pain, and swelling and bruising of the scrotum. Other side effects that develop later are similar to those of hormonal therapy drugs, which include hot flushes and impotence. Advantages A subcapsular orchidectomy is a simple operation that avoids the use of drugs and some of the associated side effects such as breast swelling and tenderness. Subcapsular orchidectomy and other hormonal treatments are equally effective. Disadvantages Some men find the idea of this operation difficult to cope with. As with any operation, there are risks associated with surgery. Your cancer specialist will give you more information about these risks and the side effects you’re likely to have. Other hormonal treatments Once the cancer is no longer responding to GnRH agonists, GnRH antagonists or anti-androgens, many men can have further periods of remission and a good quality of life by taking either diethylstilbestrol (Stilboestrol®) or steroids. Stilboestrol is a man-made drug that’s very similar to the female hormone oestrogen. It reduces the amount of testosterone in the body and is taken as a tablet once a day. 40 Hormonal therapy Side effects include loss of sex drive, loss of facial hair, and it may also cause some breast tenderness and swelling. Stilboestrol can also increase the risk of getting a blood clot (deep vein thrombosis). Your doctor may prescribe drugs called warfarin or aspirin to reduce the risk of blood clots. Sometimes a drug called ethinylestradiol is used instead of Stilboestrol. The side effects are similar to those of Stilboestrol. Steroids called prednisolone or dexamethasone are also taken as tablets. They may cause some weight gain and increase in appetite, but are usually tolerated well. Sometimes steroids may be given with chemotherapy. Occasionally, they can cause mood swings, difficulty sleeping and irritability. Let your doctor know if you get any of these side effects. Difficulty sleeping may be helped by taking the steroids earlier in the day, but check this with your doctor first. A new type of hormonal therapy called abiraterone acetate is also available. It may be used in men when other types of hormonal therapy and docetaxel chemotherapy (see page 46) are no longer working. Abiraterone has some side effects including a high blood pressure and tiredness. Your doctor will be able to give you more information about this. The National Institute for Health and Clinical Excellence (NICE) gives advice on which new drugs or treatments should be available on the NHS in England and Wales. The Scottish Medicines Consortium (SMC) is an organisation similar to NICE for the NHS in Scotland. Abiraterone is recommended for use by NICE and the SMC. We can send you fact sheets about Stilboestrol, abiraterone and steroids. 41 Understanding advanced (metastatic) prostate cancer 42 Surgery Surgery Some men are offered surgery to help with their symptoms. Your doctor will discuss the operation with you. It’s important that you understand what it involves, the possible side effects, and whether or not there are other treatments that may be more appropriate for you. Subcapsular orchidectomy This is an operation to remove part of the testicles. Sometimes both testicles are removed (bilateral orchidectomy). These procedures are done to reduce the level of the male hormone testosterone in the body. You can read more about this in our section about hormonal therapies (see pages 39–40). Transurethral resection of the prostate (TURP) If you have advanced prostate cancer, it’s not beneficial to completely remove the prostate gland. But your doctors may suggest an operation called a transurethral resection of the prostate (TURP) to relieve problems you may have with passing urine. It’s carried out if part of the tumour is blocking the tube that drains urine from the bladder (the urethra). A TURP can’t remove all of the cancer cells and is only used to relieve problems with passing urine. A tube with a small camera is passed through the urethra into the prostate. A cutting instrument attached to the tube is then used to shave the inner area of the prostate to remove the blockage. 43 Understanding advanced (metastatic) prostate cancer A TURP can be done under a general anaesthetic or with an epidural. An epidural temporarily numbs the lower part of your body. It involves having an anaesthetic injected into the spine so you can’t feel anything even though you’re awake. After your TURP After your operation, you’ll probably be able to get out of bed and move around the next day. You’ll usually have a drip giving fluid into your vein. This will be taken out as soon as you’re drinking normally. You’ll also have a tube (catheter) to drain fluid from your bladder into a collecting bag. It’s normal at this stage for your urine to contain blood. To stop blood clots from blocking the catheter, bladder irrigation may be used. This is when fluid is passed into the bladder and drained out through the catheter. The blood will gradually clear from your urine and the catheter can then be taken out. At first, you may find it difficult to pass urine without the catheter, but this should improve. Some men find that they have some urinary incontinence following this procedure. It can also cause some long-term difficulty in passing urine. Most men are able to go home after three or four days. Occasionally, you may need to keep the catheter in for a while after you go home. In this case, the nurse will show you how to look after it before you leave hospital. Arrangements can be made for a district nurse to visit you at home to help with any problems. You may have pain and discomfort for a few days after your operation. You’ll be given painkillers, which are usually very effective. If you continue to feel pain, it’s important to let the doctor or nurse looking after you know as soon as possible, so that a more effective painkiller can be found. 44 Surgery Following a TURP, about 1 in 5 men may have retrograde ejaculation. This means that during ejaculation semen goes backwards into the bladder instead of forwards through the urethra in the normal way. Your urine may look cloudy after sex because there is semen in the bladder, but this is harmless. Advantages Having a TURP can help relieve problems with passing urine. Disadvantages There is a risk of urinary incontinence and bleeding after surgery. Some men have retrograde ejaculation after having a TURP. Percutaneous nephrostomy and JJ stent In some men, one or both ureters (the tubes that connect the kidneys to the bladder) may get blocked by the prostate cancer. In this case, your doctor may insert a tube from the kidney(s) to a bag outside on the skin to drain your urine. This is called a percutaneous nephrostomy. Another way to drain the urine from the kidney(s) to the bladder is to insert a fine tube called a JJ stent into the ureter. Your doctor or specialist nurse can give you more information about these procedures. Care after an operation If you think that you might have any difficulties coping at home after your operation, let your nurse or social worker know when you’re admitted to hospital so that help can be arranged before you leave. As well as being able to offer practical advice, 45 Understanding advanced (metastatic) prostate cancer many social workers are also trained counsellors who can offer valuable support to you and your family, both in hospital and at home. If you would like to talk to a social worker, ask your nurse or doctor to arrange it for you. Before you leave hospital you’ll be given an appointment to attend an outpatient clinic for your post-operative check-up. This is a good time to discuss any problems you may have. Chemotherapy Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. In advanced prostate cancer, it’s used to treat cancer that’s no longer being controlled by hormonal therapy (hormone-refractory prostate cancer or castrationrefractory prostate cancer – see page 35). Chemotherapy aims to shrink and control the cancer, and relieve symptoms, with the aim of prolonging a good quality of life. Chemotherapy drugs are usually given by injection into a vein (intravenously). The most commonly used chemotherapy drug to treat prostate cancer is docetaxel (Taxotere®). Other drugs that may be used are: • mitoxantrone • paclitaxel (Taxol®) • cabazitaxel. 46 Understanding advanced (metastatic) prostate cancer 47 Understanding advanced (metastatic) prostate cancer Cabazitaxel is a new chemotherapy drug. It may be given to men who have previously had chemotherapy with docetaxel. It’s licensed for use in the UK but has not been approved by NICE or the SMC, so it may not be widely available on the NHS. We have fact sheets about the individual chemotherapy drugs mentioned in this section, and their side effects. Side effects of chemotherapy Each person’s reaction to chemotherapy is different. Some people have very few side effects, while others experience more. The main side effects are described here, along with some of the ways they can be reduced. Low resistance to infection (neutropenia) Chemotherapy can reduce the number of white blood cells in the blood, which help to fight infection. White blood cells are produced by the bone marrow. If your number of white blood cells is low, you will be more prone to infections. A low white blood cell count is called neutropenia. This begins a few days after treatment. Your number of white blood cells will then increase steadily and usually return to normal before your next cycle of chemotherapy is due. Contact your doctor or the hospital straight away if: • your temperature goes above 38˚C (100.4˚F) • you suddenly feel unwell, even with a normal temperature. You will have a blood test before having more chemotherapy to check the number of white blood cells. Occasionally, your treatment may need to be delayed if your number of blood cells (blood count) is still low. 48 Chemotherapy Bruising or bleeding Chemotherapy can reduce the production of platelets, which help the blood to clot. Tell your doctor if you have any unexplained bruising or bleeding such as nosebleeds, bleeding gums, blood spots or rashes on the skin. You can have a platelet transfusion if your platelet count is low. Low number of red blood cells (anaemia) Chemotherapy can reduce your number of red blood cells, which carry oxygen around the body. A low red blood cell count is called anaemia. This may make you feel tired and breathless. Tell your doctor or nurse if you have these symptoms, as you may need to have a blood transfusion if the number of red blood cells becomes too low. Feeling sick (nausea) or being sick (vomiting) Chemotherapy can make you feel or be sick. Your doctor can prescribe very effective anti-sickness (anti-emetic) drugs to prevent, or greatly reduce, nausea or vomiting. If the sickness isn’t controlled, or if it continues, tell your doctor. They can prescribe a different anti-sickness drug that may be more effective for you. Sore mouth Your mouth may become sore or dry, or you may notice small ulcers in your mouth during treatment. Drinking plenty of fluids, and cleaning your teeth regularly and gently with a soft toothbrush, can help to reduce the risk of this happening. Some people find sucking on ice soothing if they do get a sore mouth. Tell your nurse or doctor if you have these problems, as they can prescribe mouthwashes and medicine to prevent or clear mouth infections. 49 Understanding advanced (metastatic) prostate cancer Loss of appetite Some people lose their appetite while having chemotherapy. This can be mild and may only last a few days. If it doesn’t improve, you can ask to see a dietitian or specialist nurse at your hospital. They can give you advice on improving your appetite and keeping to a healthy weight. Hair loss This is a common side effect of some chemotherapy drugs. Some men find this distressing. However, there are many ways of covering up hair loss, including wigs or hats. If you do lose your hair, it should start to grow back within about 3–6 months of finishing treatment. Tiredness (fatigue) Feeling tired is a common side effect of chemotherapy, especially towards the end of treatment and for some weeks after. It’s important to try to pace yourself and to get as much rest as you need. Try to balance rest with some gentle exercise such as short walks, which will help. If tiredness is making you feel sleepy, don’t drive or operate machinery. Diarrhoea Chemotherapy can cause diarrhoea. This can usually be easily controlled with medicine but tell your doctor if it is severe or continues. It’s important to drink plenty of fluids if you have diarrhoea. Our booklet Understanding chemotherapy discusses the treatment and its side effects in more detail. 50 Chemotherapy Although side effects may be hard to deal with at the time, they will gradually disappear once your treatment finishes. Advantages Chemotherapy may help to control the cancer and relieve symptoms if hormonal therapies are no longer working. Disadvantages Chemotherapy can cause unpleasant side effects. 51 Understanding advanced (metastatic) prostate cancer Radiotherapy You may be offered radiotherapy if the cancer causes symptoms, such as pain in the prostate area, or if it has spread to other parts of the body such as the bones. In this situation, radiotherapy can’t get rid of all the cancer cells, but it can reduce symptoms. This is known as palliative radiotherapy. It can take 7–10 days for the radiotherapy to start reducing the pain, and may take up to six weeks before the full effect is felt. Our booklet Understanding radiotherapy gives more detail about this treatment and its side effects. Palliative radiotherapy If prostate cancer has spread to the bones, radiotherapy can be given to the affected bone or area. It may be given as a single treatment, or may be divided into a series of smaller treatments. Many men notice that the pain eases within a couple of days, while others may have to wait three or four weeks. Painkillers can still be taken in the meantime if necessary. The radiotherapy staff will explain your treatment and its possible side effects to you beforehand. Occasionally, if there are cancer cells in more than one area of bone, you may be given treatment known as hemibody irradiation. Treatment is given to a large area, either to the top or the bottom half of the body. This type of radiotherapy normally gives good pain relief within a few days. However, the side effects of treatment are likely to be greater than with radiotherapy to a smaller area. 52 Radiotherapy Your doctor will prescribe anti-sickness drugs for you and you may have a short stay in hospital. If necessary, the other half of your body can be treated later, once the side effects have worn off. We have a booklet called Understanding secondary cancer in the bone, which gives more detail about the possible treatments available. Strontium-89 This treatment for secondary cancer in the bone uses a radioactive material (isotope) called strontium-89, which is taken up by the affected areas of bone. It’s useful if several areas of bone are affected and are causing pain. The isotope is given as an injection into a vein in the arm. This can usually be done in the outpatients department. After the injection, a small amount of radioactivity is present in the urine, so men are advised to use flush toilets instead of urinals to reduce the risk of anyone else being exposed to the radiation. The hospital staff will discuss any other special precautions with you before you go home. The amount of radioactivity is very small, so it’s safe for you to be with other people, including children. Most men feel some effect from the treatment within a few weeks, although occasionally the pain may get slightly worse before it gets better. 53 Understanding advanced (metastatic) prostate cancer Radium-223 Radium-223 is a new treatment for secondary cancer in the bone that also uses a radioactive material. It has had encouraging results in clinical trials and, so far, has shown only mild side effects. Advantages Radiotherapy can help to relieve bone pain and strengthen a weakened bone. The aim is to make you feel more comfortable. Usually there are only a few side effects, which are generally mild. Disadvantages Pain may become slightly worse before it gets better. 54 Controlling symptoms Controlling symptoms Advanced prostate cancer may cause unpleasant symptoms. These may be relieved by treating the cancer itself. Sometimes treatments work quickly and you may notice an improvement within a few days. Other treatments may take longer to work, so it can be a couple of weeks before you begin to feel any benefit. Apart from treating the cancer itself, there are many other ways to help relieve symptoms. This section talks about what options may be available to you. Pain There are many different types of painkillers. They vary both in their strength and in the way they work. Some painkillers are better for certain types of pain, and some suit certain men better than others. It’s often better to take painkillers regularly, even if you’re not in pain when the next dose is due. This is because painkillers not only relieve pain at the time, but prevent it from coming back too. Painkillers can be taken as tablets, liquids, or as suppositories that are inserted into the back passage. Some are also given as injections under the skin or patches that are applied to the skin. It’s important to tell your doctor or nurse if the painkillers you’re taking aren’t easing your pain. Your doctor can either change the dose or change the painkillers to something else that will be more effective for you. 55 Understanding advanced (metastatic) prostate cancer Pain caused by prostate cancer cells in a bone can be severe. Radiotherapy (see pages 52–54) is very good at easing this type of pain, but can take a few weeks to work. Often drugs containing morphine are needed while the treatment is being planned, or while you are waiting for the radiotherapy to work. Some men find that morphine makes them feel drowsy when they first start taking it, but this usually only lasts for a day or so. Taking morphine may also make some men feel sick at first, and they may need to take an anti-sickness (anti-emetic) tablet prescribed by their doctor for the first few doses. It may also cause constipation (see page 60). A number of other drugs can help to relieve pain. If pain is due to prostate cancer cells in a bone, non-steroidal anti-inflammatory drugs (NSAIDs) can help. These have few side effects, but can sometimes irritate the lining of the stomach. Drugs called bisphosphonates can also help relieve bone pain. Bisphosphonates such as Zoledronic Acid (Zometa®) can help to strengthen bones and lower the risk of fractures. They can also reduce high levels of calcium in the blood (hypercalcaemia – see pages 60–61), as well as reduce pain. They may be given into a vein (intravenously) in the outpatients department every 3–4 weeks. Denosumab is a new drug that helps to protect the bones, but it works in a different way to bisphosphonates. It may not be widely available – your doctor can give you more information. We can send you fact sheets about bisphosphonates and their side effects. 56 Controlling symptoms If you’re having trouble sleeping because of pain, your doctor can prescribe sleeping tablets or a mild relaxant. Anxiety and lack of sleep can make pain worse. For this reason, some men also find that practising relaxation techniques helps them feel more comfortable. A gentle massage can also help your body relax and distract your mind from pain. It’s advisable to have a massage from a trained massage therapist who works with cancer patients. Heat can also help to ease pain. A long soak in a warm bath, a heat pack or a well-protected hot water bottle can all bring some short-term pain relief for some men. Being in pain can make you feel very low. It’s important to let your doctor know if the drugs prescribed aren’t working. Remember there are many different ways to control pain. There are special NHS pain clinics run by doctors and nurses who are experts in treating pain. You can ask your doctor to refer you to a clinic if your pain is not controlled by any of the methods mentioned here. We can send you our booklet Controlling cancer pain, which has more detailed information. We also have a booklet called Controlling the symptoms of cancer, which you may find helpful. Malignant spinal cord compression If the bones in the spine are affected by the cancer, it can sometimes lead to weakness and tingling or numbness in the legs due to pressure on the spinal nerves. This is called malignant spinal cord compression. Some men may have pain that comes on quickly and is different from their normal pain. 57 Understanding advanced (metastatic) prostate cancer 58 Controlling symptoms They may also have problems passing urine or controlling their bowels. Constipation may also become a problem. Treatment can often prevent permanent damage to the nerves. It’s important to contact your cancer specialist immediately if you develop any of the symptoms mentioned here. We can send you more information about malignant spinal cord compression. Tiredness You may find that you easily become tired and that your body is no longer as strong and reliable as it once was, either because of the cancer or the side effects of treatment. You may feel that you have no strength and everything is more of an effort. It can be difficult to adjust if tiredness makes it difficult for you to drive or take part in your usual activities, or if you have to walk more slowly than before. It’ll take time to get used to these changes. You may need to rest more, and you may be unable to do the things you once took for granted. If you have little energy, save it for the things you really want to do. Very often, re-organising your daily activities can be helpful – for example, by setting aside a time to rest every day. Practical aids such as wheelchairs can also be useful. You may feel that by using a walking stick, frame or wheelchair you are ‘giving in’ to your illness, but they can greatly improve your life, allowing you to move around more easily. You may find our booklet Coping with fatigue helpful. Sometimes the cancer or the treatment can cause anaemia, which can make you feel tired. If this happens, you may be given a blood transfusion, which can often give you more energy and reduce tiredness. 59 Understanding advanced (metastatic) prostate cancer Constipation Constipation can be caused by taking strong painkillers or if you have too much calcium in your blood. It can also occur if you lose your appetite and are not eating as much as before, or if you are getting less exercise. Having fibre in your diet, drinking plenty of fluids and walking will help, but you may also need to take a medicine (laxative) to stimulate the bowel. Your doctor will be able to prescribe one that’s suitable for you. Your nurses can also advise you on ways to prevent or relieve constipation. Difficulty sleeping (insomnia) Even though you may feel tired, it’s not uncommon to have difficulty sleeping. You may have a lot on your mind, and this can add to the problem. Sleeping tablets can be helpful, and the newer types now available are less likely to make you feel drowsy the following day. You can also try some natural remedies like drinking malted milk or chamomile tea before bed, a glass of brandy or whisky in the evening, having a warm bath with soothing bath oils, or a relaxing body massage to relieve muscle tension. We can send you information about difficulty sleeping. High levels of calcium in the blood (hypercalcaemia) Prostate cancer cells in a bone may make extra calcium pass out of the damaged bone and into the blood. High levels of calcium in the blood can make you feel extremely tired and thirsty, and you may pass lots of urine. Hypercalcaemia can also make you feel sick, and some people become irritable and confused. 60 Controlling symptoms Depending on your calcium level, you may be able to have treatment as an outpatient or you may need to spend a few days in hospital. Your doctor will give you drugs called bisphosphonates. These drugs are given as a drip into a vein in your arm. Each treatment takes between 15 minutes and one hour, and can be repeated every few weeks. They are usually effective at getting the calcium levels back to normal. Your doctor may also ask you to drink plenty of water. Sometimes the drip will be used to give extra fluids into a vein in your arm (an intravenous infusion). Weakened bones You may need an operation if prostate cancer cells have weakened a bone so much that there’s a risk of it breaking. This is done under a general anaesthetic. The surgeon will put a metal pin into the centre of the bone and may also fix a metal plate to it. This holds the bone firmly so it won’t break. The pin and plate can stay in permanently. This is mainly used for the long bones in the legs, but is sometimes used when there are secondary cancers in other bones such as the spine. If your hip is affected, the hip joint may be replaced. You’ll need to stay in hospital for a week or longer after the operation so you can fully recover. However, most men are able to get up and start walking around a couple of days after surgery. This sort of operation may be done before radiotherapy is given, if there is a chance the bone may break before the radiotherapy has treated the cancer cells. 61 Understanding advanced (metastatic) prostate cancer If your doctors feel the bone is unlikely to fracture, bisphosphonates may be used to help strengthen the bone and prevent it from breaking. Complementary therapies Some men find that complementary therapies can help them feel stronger and more confident in dealing with advanced prostate cancer. It’s important to tell your doctors if you’re planning on using any complementary therapies. They can usually be used alongside conventional treatments and medicines. Complementary therapies can help to improve quality of life, and can sometimes help to reduce symptoms. Some complementary therapies, such as meditation or visualisation, can be done by the person with cancer themselves and can help reduce anxiety. Other therapies such as gentle massage can be carried out by a trained massage therapist, and relatives and carers can be shown how to do it for you at home. Gentle physical contact and touch can be among the most powerful forms of support for people who are faced with uncertainty, fear or pain, whether emotional or physical. Many hospices and hospitals offer complementary therapies alongside conventional care. These may include: • aromatherapy • colour and sound therapy 62 Research – clinical trials • massage • relaxation, visualisation or guided-imagery techniques • acupuncture. We can send you our booklet about cancer and complementary therapies. Research – clinical trials Cancer research trials are carried out to try to find new and better treatments for cancer. Trials that are carried out on patients are called clinical trials. These may be carried out to: • test new treatments such as new chemotherapy drugs, gene therapy or cancer vaccines • look at new combinations of existing treatments, or change the way they are given, to make them more effective or reduce side effects • compare the effectiveness of drugs used to control symptoms • find out how cancer treatments work • find out which treatments are the most cost-effective. Trials are the only reliable way to find out if a different type of hormonal therapy, surgery, chemotherapy, radiotherapy or other treatment is better than what is already available. 63 Understanding advanced (metastatic) prostate cancer Taking part in a trial You may be asked to take part in a treatment research trial, and there can be many benefits in doing this. Trials help to improve knowledge about cancer and develop new treatments. You’ll be carefully monitored during and after the study. Usually, several hospitals around the country take part in these trials. It’s important to bear in mind that some treatments that look promising at first are often later found to be less effective than existing treatments or to have side effects that outweigh the benefits. If you decide not to take part in a trial your decision will be respected and you do not have to give a reason. There will be no change in the way you are treated by the hospital staff and you’ll be offered the standard treatment for your situation. Our booklet Understanding cancer research trials (clinical trials) describes clinical trials in more detail. We can send you a copy. Blood and tumour samples Blood and tumour samples may be taken to help make the right diagnosis. You may be asked for your permission to use some of your samples for research into cancer. If you take part in a trial you may also give other samples, which may be frozen and stored for future use when new research techniques become available. Your name will be removed from the samples so you can’t be identified. The research may be carried out at the hospital where you are treated, or at another one. This type of research takes a 64 Dealing with the side effects of treatment long time, and results may not be available for many years. The samples will be used to increase knowledge about the causes of cancer and its treatment, which will hopefully improve the outlook for future patients. Our website has information about current clinical trial databases – visit macmillan.org.uk/clinical trials Dealing with the side effects of treatment Unfortunately, treatment for prostate cancer can cause unpleasant and distressing side effects; both short- and long-term. Sexual problems/erection difficulties Any type of treatment can make you less interested in sex. This is known as loss of libido and is common to many illnesses, not just cancer. Hormonal therapy, which is the main treatment for advanced prostate cancer, reduces testosterone levels, which can affect your ability to get or maintain an erection (impotence). However, the problems may not be permanent and can sometimes be caused by anxiety rather than the treatment. Many men find it difficult to talk about personal subjects such as erection problems, particularly with their doctor or other healthcare staff. Some men also find it difficult to talk to their partner, if they have one, for fear of rejection – but these fears 65 Understanding advanced (metastatic) prostate cancer are often unfounded. Sexual relationships are built on many things such as love, trust and common experiences. It can help to talk to your partner about your fears and worries. If you find the effect on your sex life difficult to deal with, you could discuss this with your doctor. Although you may worry that this will be embarrassing, doctors who deal with prostate cancer are very used to talking about these issues and will be able to give you advice. There may be practical ways to help overcome impotence and your doctor will be able to give you further information about these. Most hospitals also have specialist nurses who can discuss the issues with you. You may find it helpful to read our leaflet Cancer, you and your partner. We also have a booklet called Sexuality and cancer. Urinary incontinence Losing control of your bladder may be caused by the cancer itself, by surgery or, rarely, by radiotherapy. A lot of progress has been made in dealing with incontinence, and there are several different ways of coping with the problem. You can discuss any concerns with your doctor or nurse. Some hospitals have medical staff who are specially trained to give advice about incontinence. The Bladder and Bowel Foundation (see page 91) can also offer useful information. It‘s important to recognise that these problems don’t affect all men. You can ask your doctor as many questions as you like about your treatment and the possible side effects. Then you can be better prepared to cope if problems arise. 66 Dealing with the side effects of treatment You can also speak to our cancer support specialists on 0808 808 00 00. Just Can’t Wait toilet card If you need to go to the toilet more often, or feel that you can’t wait when you do want to go, you can get a card to show to staff in shops, pubs and other public places. The Just Can’t Wait toilet card allows you to use their toilets without them asking awkward questions. You can get the cards from the Bowel and Bladder Foundation. Infertility Most treatments for prostate cancer are likely to cause infertility, which means that you’ll no longer be able to father a child. This can be very distressing if you want to have children. Your cancer specialist can talk to you about this before you start treatment, and you may wish to discuss the issue with your partner, if you have one. It’s sometimes possible to store sperm before treatment starts. The sperm may then be used later as part of fertility treatment. We have information about ways of preserving fertility in our leaflet Cancer treatment and fertility – information for men. 67 Understanding advanced (metastatic) prostate cancer 68 Coping with advanced prostate cancer Coping with advanced prostate cancer Advanced prostate cancer or its treatment may leave you feeling tired and depressed. You may feel as though you have less energy than you did before treatment started. The cancer itself may cause some physical effects such as tiredness or feeling sick (nausea). Having treatment can be difficult and it can take a while to physically and emotionally recover from it. Your treatment may last for months and you may not get the chance to get back to normal until it’s complete. In this section we’ve listed some tips, which you may find help you cope with the effects of prostate cancer treatment. Diet Your body needs extra nutrients and calories during and after treatment for cancer. It’s important to try to keep eating well, even if you haven’t got much of an appetite. Try eating little and often. Make the most of ready-prepared meals if you haven’t got the energy to cook. Our booklet The building-up diet has some helpful tips. Rest and activity Both rest and activity are necessary for good health, and it’s important to find the right balance between the two. Your body will tell you when you need to rest, but it’s important not to stop doing things completely, just as it’s important not to overstretch 69 Understanding advanced (metastatic) prostate cancer yourself. When you’re having treatment or if you’re unwell, you use up a lot more energy than usual. It is important to rest and give your body time to repair itself. When you do feel like doing things, it’s important not to do too much. Start by setting yourself small goals such as walking around the garden or spending a few hours a week at work. Staying in hospital For some men, treatment may involve a stay in hospital. Being inactive like this, even for just a few days, may leave you feeling physically weaker, and perhaps nervous about how you’ll manage when you go home. It may help to spend some time with the hospital physiotherapist and occupational therapist. The physiotherapist can put together an exercise programme for you and work with you to build up your muscle strength and confidence. The occupational therapist can help you regain your confidence to manage at home and can offer you practical advice. Before you go home, you and your family may wish to talk to a Macmillan nurse, the ward sister or charge nurse, or hospital social worker. They can help you with any immediate problems you have. For financial advice, you can contact Citizens Advice (see pages 95–96) or call the Benefit Enquiry Line on 0800 882 200. Your hospital doctor or discharge planning team can ring your GP’s surgery to let them know you’re going home. They should also tell your GP about your condition and any treatment that needs to be continued at home. The hospital staff can refer you to a community palliative care nurse to continue your care at home. 70 Your feelings Your feelings Most people feel overwhelmed when they are told they have cancer, and have many different emotions. These are part of the process you may go through when dealing with your illness. Partners, family members and friends often have similar feelings and may also need support and guidance to help them cope. Reactions differ from one person to another – there’s no right or wrong way to feel. We describe some of the common emotional effects of cancer here. However, reactions vary and people have different emotions at different times. Our booklet How are you feeling? discusses the emotions you may have in more detail, and has suggestions for coping with them. Shock and disbelief Disbelief is often the immediate reaction when cancer is diagnosed. You may feel numb and unable to express any emotion. You may also find that you can only take in a small amount of information, and so you have to keep asking the same questions again and again. This need for repetition is a common reaction to shock. Some people find that their feelings of disbelief make it difficult for them to talk about their illness with family and friends. For others it may be the main topic of conversation as it’s the main thing on their mind. You may find our booklet Talking about your cancer helpful. 71 Understanding advanced (metastatic) prostate cancer Fear and uncertainty Cancer is a frightening word surrounded by fears and myths. One of the greatest fears people have is whether they will die. When a cancer is not curable, current treatments often mean that it can be controlled for some time. Many people are anxious about whether their treatment will work and have any side effects. It’s best to discuss your treatment and possible outcomes in detail with your doctor. You may find that doctors can’t answer your questions fully, or that their answers sound vague. It’s often impossible for them to say for certain how effective treatment will be. Doctors know roughly how many people may benefit from a certain treatment, but they can’t predict the future for a particular person. Many people find this uncertainty hard to live with, but your fears may be worse than the reality. Finding out about your illness can be reassuring. Discussing what you have found out with your family and friends can also help. You might find it helpful to talk to other people in your situation. Call our cancer support specialists on 0808 808 00 00 to find out if there’s a support group in your area. Or you can visit our online community at macmillan.org.uk/community to chat any time with people who know what you’re going through. Some people find some form of spiritual support helpful at this time, and you may like to talk to a spiritual or religious adviser. 72 Your feelings Denial Many people cope with their illness by not wanting to know much or talk much about it. If that’s the way you feel, just let your family and friends know that you’d prefer not to talk about your illness, at least for the time being. Sometimes, however, it’s the other way around. You may find that your family and friends don’t want to talk about your illness. They may appear to ignore the fact that you have cancer, perhaps by playing down your worries and symptoms or deliberately changing the subject. If this upsets or hurts you, try telling them. Perhaps start by reassuring them that you know why they’re doing it, but that it will help you if you can talk to them about your illness. Anger People often feel very angry about their illness. Anger can also hide other feelings, such as fear or sadness. You may direct your anger at the people closest to you, or at the doctors and nurses caring for you. It’s understandable that you may be very upset by many aspects of your illness, so you don’t need to feel guilty about your angry thoughts or irritable moods. Bear in mind that your family and friends may sometimes think that your anger is directed at them, when it’s really directed at your illness. It may help to tell them this, or perhaps show them this section of the booklet. 73 Understanding advanced (metastatic) prostate cancer Blame and guilt Sometimes people blame themselves or others for their illness, trying to find reasons to explain why it has happened to them. This may be because we often feel better if we know why something has happened. In most cases it’s impossible to know exactly what has caused a person’s cancer. So there’s no reason for you to feel that anyone is to blame. Resentment Understandably, you may feel resentful because you have cancer while other people are well. These feelings may crop up from time to time during the course of your illness and treatment. It usually helps to discuss these feelings, rather than keeping them to yourself. Isolation and depression There may be times when you want to be left alone to work through your thoughts and emotions. This can be hard for your family and friends, who want to share this difficult time with you. It may help them cope if you reassure them that, although you don’t feel like discussing your illness at the moment, you’ll talk to them about it when you’re ready. Sometimes, depression can stop you wanting to talk. If you or your family think you may be depressed, discuss this with your GP. They can refer you to a doctor or counsellor who specialises in the emotional problems of people with cancer, or prescribe an antidepressant drug for you. We have a video at macmillan.org.uk/depression that may be helpful. 74 If you are a relative or friend If you are a relative or friend Some people find it hard to talk about cancer or share their feelings. You might think it’s best to pretend everything is fine, and carry on as normal. You might not want to worry the person with cancer, or you might feel you’re letting them down if you admit to being afraid. Unfortunately, denying strong emotions can make it even harder to talk, and may lead to the person with cancer feeling very isolated. Partners, relatives and friends can help by listening carefully to what the person with cancer wants to say. It may be best not to rush into talking about the illness. Often it’s enough just to listen and let the person with cancer talk when they are ready. You may find some of the courses on our Learn Zone website helpful. There are courses to help with listening and talking, to help friends and family support their loved ones affected by cancer. Visit macmillan.org.uk/learnzone to find out more. Our booklet Lost for words: how to talk to someone with cancer has more suggestions if you have a friend or relative with cancer. If you’re looking after a family member or friend with cancer, you may find our booklet Hello, and how are you? helpful. It’s based on carers’ experiences and has lots of practical tips and information. We have more information about supporting someone with cancer at macmillan.org.uk/carers 75 Understanding advanced (metastatic) prostate cancer Relationships The experience of cancer may have improved your relationships with people close to you. The support of family and friends may have helped you cope. But cancer is stressful, and this can have an effect on relationships. Any problems usually improve over time, especially if you can talk openly about them. Your partner Some couples become closer through a cancer experience. However, cancer can put a lot of strain on a relationship. Problems sometimes develop, even between couples who’ve been together for a long time. If a relationship was already difficult, the stress of a major illness may make things worse. Even couples that are close may not always know how their partner is feeling. Talking openly about your feelings and listening to each other can help you understand each other. Our booklets Cancer, you and your partner and Sexuality and cancer have more information that may help. Family and friends Your family and friends may not always understand if you aren’t feeling positive about getting on with things, and may not know how big an effect treatment is having on your life. Talking about how you feel will help them give you the support you need. Our booklet Talking about your cancer has more useful tips. 76 Understanding advanced (metastatic) prostate cancer 77 Understanding advanced (metastatic) prostate cancer Talking to children Deciding what to tell your children or grandchildren about your cancer is difficult. An open, honest approach is usually best. Even very young children can sense when something is wrong, and their fears can sometimes be worse than the reality. How much you tell your children will depend on their age and how mature they are. It may be best to start by giving only small amounts of information and gradually tell them more to build up a picture of your illness. Teenagers Teenagers can have an especially hard time. At a stage when they want more freedom, they may be asked to take on new responsibilities and they may feel over-burdened. It’s important that they can go on with their normal lives as much as possible and still get the support they need. If they find it hard to talk to you, you could encourage them to talk to someone close who can support and listen to them, such as a grandparent, family friend, teacher or counsellor. They may also find it useful to look at the website riprap.org.uk which has been developed especially for teenagers who have a parent with cancer. Our booklet Talking to children when an adult has cancer includes discussion about sensitive topics. There’s also a video on our website that may help, at macmillan.org.uk/talkingtochildren 78 What you can do What you can do One of the hardest things to cope with can be the feeling that the cancer and its treatment have taken over your life. This is a common feeling, but there are lots of things you can do. There may be days when you feel too tired to even think about what could help. You’ll have good and bad days. If you’re overwhelmed by these feelings, let your doctor or nurse know. It may be that you have depression, and this is treatable so they should be able to help. Finding ways to cope You may find it helps to try to carry on with life as normally as possible, by staying in contact with friends and keeping up your usual activities. Or you may want to decide on new priorities in your life. This could mean spending more time with family, going on the holiday you’ve dreamed about or taking up a new hobby. Just thinking about these things and making plans can help you realise that you still have choices. Some people want to improve their general health by eating a more healthy diet, by getting fitter or by finding a relaxing complementary therapy. Understanding about the cancer and its treatment helps many people cope. It means they can discuss plans for treatment, tests and check-ups with their doctors and nurses. Being involved in these choices can help give you back control of your life. 79 Understanding advanced (metastatic) prostate cancer Who can help? Many people are available to help you and your family. District nurses work closely with GPs and make regular visits to patients and their families at home if needed. The hospital social worker can give you information about social services and benefits you may be able to claim, such as meals on wheels, a home helper or hospital fares. The social worker may also be able to arrange childcare for you during and after treatment. In many areas of the country, there are also specialist nurses called palliative care nurses. They are experienced in assessing and treating symptoms of advanced cancer. Palliative care nurses are sometimes known as Macmillan nurses. However, many Macmillan professionals are nurses who have specialist knowledge in a particular type of cancer. You may meet them when you’re at a clinic or in hospital. Marie Curie nurses help care for people approaching the end of their lives in their own homes. Your GP or hospital specialist nurse can usually arrange a visit by a palliative care or Marie Curie nurse. Hospices provide day care services for people with cancer, and can often give short-term care or respite care, as well as care for people in the last few weeks of their life. Hospices specialise in the control of pain and other symptoms, and in supporting the person with cancer and their family. People can go into a hospice for a short time to have pain or any other symptoms controlled before going home again. 80 Who can help Many hospices are in pleasant grounds and are designed to be attractive and comfortable. Many have kitchens, sitting rooms and accommodation for relatives. Activities are provided for people who are well enough to take part. They are smaller and quieter than hospitals and work at a gentler pace. There’s a video on our website about hospices. You can view it here, macmillan.org.uk/hospices There’s also specialist help available to help you cope with the emotional impact of cancer and its treatment. You can ask your hospital doctor or GP to refer you to a doctor or counsellor who specialises in supporting people with cancer and their families. Our cancer support specialists on 0808 808 00 00 can tell you more about counselling and can let you know about services in your area. 81 Understanding advanced (metastatic) prostate cancer Financial help and benefits If you’re struggling to cope with the financial effects of cancer, help is available. If you’re an employee and unable to work because of illness, you may be able to get Statutory Sick Pay. This is paid by your employer for up to 28 weeks of sickness, and if you qualify for it, your employer can’t pay you less. Before your Statutory Sick Pay ends, or if you are not eligible, check whether you can claim Employment and Support Allowance. This benefit gives financial help to people who are unable to work due to illness or disability. Disability Living Allowance (DLA) is for people under 65 who have difficulty walking or looking after themselves (or both). You need to have had these difficulties for at least three months to qualify, and they should be expected to last for the next six months. As part of the Welfare Reform Act 2012, DLA will be replaced by a Personal Independence Payment for people of working age from April 2013. Attendance Allowance (AA) is for people aged 65 or over who have difficulty looking after themselves. You may qualify if you need help with personal care, such as getting out of bed, having a bath or dressing yourself. You don’t need to have a carer to be eligible, but you must have needed care for at least six months. If you’re terminally ill, you can apply for DLA or AA under the ‘special rules’. This means your claim will be dealt with quickly and you’ll receive the benefit you applied for at the highest rate. 82 Financial help and benefits Help for carers If you are a carer, you may be entitled to financial help as well. This may include Carer’s Allowance, which is the main state benefit for carers, and Carer’s Credit, which helps carers build up qualifying years for State Pension. The benefits system can be complicated, so it’s a good idea to talk to an experienced benefits adviser. You can speak to one by calling the Macmillan Support Line on 0808 808 00 00. We’ve just outlined some benefits here, but there may be others available to you. You can find out more about benefits from Citizens Advice, or by calling the Benefit Enquiry Line on 0800 882 200 (or 0800 220 674 if you live in Northern Ireland). The website direct.gov.uk (nidirect.gov.uk if you live in Northern Ireland) also has useful information. See our booklet Help with the cost of cancer for more detailed information. Our video at macmillan. org.uk/gettingfinancialhelp may also be useful. Insurance People who have or have had cancer may find it harder to get certain types of insurance, including life and travel insurance. An independent financial adviser (IFA) can help you assess your financial needs and find the best deal for you. You can find an IFA by contacting one of the organisations on pages 96–97. Our leaflet Getting travel insurance and our booklet Insurance may be helpful. 83 Understanding advanced (metastatic) prostate cancer 84 Work Work You may need to take time off work during your treatment and for a while afterwards. It can be hard to judge the best time to go back to work, and this will depend mainly on the type of work you do and how much your income is affected. It’s important to do what’s right for you. Getting back into your normal routine can be very helpful, and you may want to go back to work as soon as possible. It can be helpful to talk to your employer about the situation – it may be possible for you to work part-time or job share. On the other hand, it can take a long time to recover fully from cancer treatment, and it may be many months before you feel ready to return to work. It’s important not to take on too much, too soon. Your consultant, GP or specialist nurse can help you decide when and if you should go back to work. Employment rights The Equality Act 2010 protects anyone who has, or has had, cancer. This means their employer must not discriminate against them for any reason, including their past cancer. The Disability Discrimination Act protects people in Northern Ireland. Our booklets Work and cancer, Working while caring for someone with cancer and Self-employment and cancer have more information that may be helpful. There’s also lots more information at macmillan.org.uk/work 85 Understanding advanced (metastatic) prostate cancer How we can help you Cancer is the toughest fight most of us will ever face. But you don’t have to go through it alone. The Macmillan team is with you every step of the way. Get in touch Macmillan Support Line Our free, confidential phone Macmillan Cancer Support line is open Monday–Friday, 89 Albert Embankment, 9am–8pm. Our cancer London SE1 7UQ support specialists provide Questions about cancer? clinical, financial, emotional Call free on 0808 808 00 00 and practical information and (Mon–Fri, 9am–8pm) support to anyone affected by www.macmillan.org.uk cancer. Call us on 0808 808 Hard of hearing? 00 00 or email us via our Use textphone website, macmillan.org.uk/ 0808 808 0121 or Text Relay. talktous Non-English speaker? Interpreters are available. Information centres Our information and support Clear, reliable information centres are based in hospitals, about cancer libraries and mobile centres, and offer you the opportunity We can help you by phone, to speak with someone email, via our website and face-to-face. Find your nearest publications or in person. one at macmillan.org.uk/ And our information is free to informationcentres everyone affected by cancer. 86 How we can help you Publications We provide expert, up-to-date information about different types of cancer, tests and treatments, and information about living with and after cancer. We can send you free information in a variety of formats, including booklets, leaflets, fact sheets, and audio CDs. We can also provide our information in Braille and large print. Need out-of-hours support? You can find a lot of information on our website, macmillan.org.uk For medical attention out of hours, please contact your GP for their out-of-hours service. Someone to talk to When you or someone you know has cancer, it can be difficult to talk about how you’re feeling. You can call our cancer support specialists You can find all of our information, along with several to talk about how you feel and what’s worrying you. videos, online at macmillan. org.uk/cancerinformation We can also help you find support in your local area, Review our information so you can speak face-to-face Help us make our resources even better for people affected with people who understand what you’re going through. by cancer. Being one of our reviewers gives you the chance to comment on a variety of information including booklets, fact sheets, leaflets, videos, illustrations and website text. If you’d like to hear more about becoming a reviewer, email [email protected] macmillan.org.uk 87 Understanding advanced (metastatic) prostate cancer Professional help Support for each other Our Macmillan nurses, doctors and other health and social care professionals offer expert treatment and care. They help individuals and families deal with cancer from diagnosis onwards, until they no longer need this help. No one knows more about the impact cancer has on a person’s life than those who have been affected by it themselves. That’s why we help to bring people with cancer and carers together in their communities and online. You can ask your GP, hospital consultant, district nurse or hospital ward sister if there are any Macmillan professionals available in your area, or call us. Support groups You can find out about support groups in your area by calling us or by visiting macmillan. org.uk/selfhelpandsupport 88 Online community You can also share your experiences, ask questions, get and give support to others in our online community at macmillan. org.uk/community How we can help you Financial and work-related support Find out more about the financial and work-related support we can offer Having cancer can bring extra at macmillan.org.uk/ costs such as hospital parking, financialsupport travel fares and higher heating Learning about cancer bills. Some people may have to stop working. You may find it useful to learn If you’ve been affected in this more about cancer and how to manage the impact it can way, we can help. Call the have on your life. Macmillan Support Line and one of our cancer support You can do this online on our specialists will tell you about the benefits and other financial Learn Zone – macmillan.org. uk/learnzone – which offers help you may be entitled to. a variety of e-learning courses and workshops. There’s We can also give you information about your rights also a section dedicated to supporting people with cancer at work as an employee, and help you find further support. – ideal for people who want to learn more about what their relative or friend is Macmillan Grants going through. Money worries are the last thing you need when you have cancer. A Macmillan Grant is a one-off payment for people with cancer, to cover a variety of practical needs including heating bills, extra clothing, or a much needed break. 89 Understanding advanced (metastatic) prostate cancer 90 Other useful organisations Other useful organisations Prostate cancer support organisations Bladder and Bowel Foundation SATRA Innovation Park, Rockingham Road, Kettering NN16 9JH Helpline 0845 345 0165 Email [email protected] foundation.org www.bladderandbowel foundation.org Provides information and advice on a range of symptoms and conditions related to the bladder and bowel, including incontinence, constipation and diverticular disease. Orchid St Bartholomew’s Hospital, London EC1A 7BE Tel 0203 465 5766 (Mon–Fri, 9am–5.30pm) Email [email protected] www.orchid-cancer.org.uk Funds research into men’s cancers, their diagnosis, prevention and treatment. Offers free information leaflets and fact sheets, and runs an enquiry service supported by Orchid Male Cancer Information Nurses. Prostate Action 6 Crescent Stables, 139 Upper Richmond Road, London SW15 2TN Tel 020 8788 7720 Email [email protected] www.prostateaction.org.uk Funds research and education into all three prostate diseases: benign prostatic hyperplasia (BPH), prostate cancer and prostatitis. Has a lot of information about these conditions on its website. 91 Understanding advanced (metastatic) prostate cancer The Prostate Cancer Support Federation Mansion House Chambers, 22 High Street, Stockport SK1 1EG Helpline 0845 601 0766 Email [email protected] federation.org.uk www.prostatecancer federation.org.uk An organisation of UK patient-led prostate cancer support groups. Prostate Cancer UK Cambridge House, 100 Cambridge Grove, London W6 0LE Helpline 0800 074 8383 (Mon–Fri, 10am–4pm, Wed, 7–9pm) Email [email protected] www.prostatecanceruk. org. Provides information and support to men with prostate cancer, and their families. A confidential helpline is available to anyone concerned or affected by prostate cancer. 92 Prostate Scotland Gf2, 21–23 Hill Street, Edinburgh EH2 3JP Tel 0131 226 8157 Email [email protected] www.prostatescotland. org.uk A Scottish charity set up to provide information, advice and help on prostate health and diseases of the prostate. You can watch videos online and download free leaflets and booklets. Sexual Advice Association Suite 301, Emblem House, London Bridge Hospital, 27 Tooley Street, London SE1 2PR Tel 020 7486 7262 Email [email protected] sexualadviceassociation.co.uk www.sda.uk.net Aims to improve the sexual health and well-being of men and women, and to raise awareness of how sexual conditions affect the general population. Other useful organisations General cancer support organisations Cancer Support Scotland (Tak Tent) Flat 5, 30 Shelley Court, Cancer Black Care Gartnavel Complex, 79 Acton Lane, Glasgow G12 0YN London NW10 8UT Tel 0141 211 0122 Tel 020 8961 4151 Email [email protected] (Mon–Fri, 9.30am–4.30pm) cancersupportscotland.org Email www.cancersupport [email protected] scotland.org www.cancerblackcare. Offers information and org.uk support to people with Offers a variety of information cancer, families, friends, and support for people and healthcare professionals. with cancer from ethnic Runs a network of support communities, their families, groups across Scotland. carers and friends. Irish Cancer Society Cancer Focus 43–45 Northumberland Road, Northern Ireland Dublin 4, Ireland 40–44 Eglantine Avenue, Cancer Helpline Belfast BT9 6DX 1800 200 700 (Mon–Thurs, Helpline 0800 783 3339 9am–7pm, Fri, 9am–5pm) Email Email [email protected] [email protected] www.cancer.ie www.cancerfocusni.org Operates Ireland’s only Provides a variety of services freephone cancer helpline, for people with cancer and which is staffed by nurses their families, including a free trained in cancer care. telephone helpline, which is staffed by specially trained nurses with experience in cancer care. 93 Understanding advanced (metastatic) prostate cancer Maggie’s Centres 1st Floor, One Waterloo Street, Glasgow G2 6AY Tel 0300 123 1801 Email [email protected] maggiescentres.org www.maggiescentres.org Maggie’s Centres offer free, comprehensive support for anyone affected by cancer. You can access information, benefits advice, and emotional or psychological support. Tenovus 9th Floor, Gleider House, Ty Glas Road, Llanishen, Cardiff CF14 5BD Freephone helpline 0808 808 1010 Tel 029 2076 8850 Email [email protected] www.tenovus.org.uk Provides a variety of services to people with cancer and their families, including counselling and a freephone cancer helpline. 94 Counselling, bereavement and emotional support British Association for Counselling and Psychotherapy (BACP) BACP House, 15 St John’s Business Park, Lutterworth LE17 4HB Tel 01455 883 300 Email [email protected] www.bacp.co.uk and www.itsgoodtotalk.org.uk Promotes awareness and availability of counselling, and signposts people to appropriate services. You can search for a counsellor on its website. Cruse Bereavement Care PO Box 800, Richmond TW9 1RG Helpline 0844 477 9400 (Mon–Fri, 9.30am–5pm) Email [email protected] www.crusebereavement care.org.uk Provides bereavement counselling, information and support to anyone who has been bereaved, with a network of branches across the UK. Other useful organisations RD4U PO Box 800, Richmond TW9 1RG Freephone helpline 0808 808 1677 (Mon–Fri, 9.30am–5pm) Email [email protected] www.rd4u.org.uk RD4U is a website designed for young people by young people. It’s part of Cruse Bereavement Care’s Youth Involvement Project and supports young people after the death of someone close. Relate Premier House, Carolina Court, Lakeside, Doncaster DN4 5RA Tel 0300 100 1234 www.relate.org.uk Offers advice, relationship counselling, sex therapy, workshops, mediation, consultations and support face-to-face, by phone and through the website. Samaritans Chris, PO Box 9090, Stirling FK8 2SA Tel 08457 90 90 90 Email [email protected] www.samaritans.org.uk Provides confidential non-judgemental emotional support, 24 hours a day for people experiencing feelings of distress or despair, including those that could lead to suicide. Financial or legal advice and information Benefit Enquiry Line Warbreck House, Warbreck Hill Road, Blackpool FY2 0YE Freephone 0800 882 200 Free textphone 0800 243 355 Email [email protected] www.direct.gov.uk/ disabilitymoney Provides advice about benefits and can also help people complete some disability-related claim packs. Citizens Advice Provides free, confidential, independent advice on a variety of issues including financial, legal, housing and employment. Find contact details for your local office in the phone book or at 95 Understanding advanced (metastatic) prostate cancer citizensadvice.org.uk Find advice for the UK online, in a variety of languages, at adviceguide.org.uk Citizens Advice Scotland www.cas.org.uk The Law Society 113 Chancery Lane, London WC2A 1PL Tel 020 7242 1222 Email [email protected] lawsociety.org.uk www.lawsociety.org.uk Represents solicitors in England and Wales and can provide details of local solicitors. Law Society of Scotland 26 Drumsheugh Gardens, Edinburgh EH3 7YR Tel 0131 226 7411 Email [email protected] www.lawscot.org.uk Law Society of Northern Ireland 96 Victoria Street, Belfast BT1 3GN Tel 028 9023 1614 96 Email [email protected] www.lawsoc-ni.org National Debtline (England, Wales and Scotland) Tricorn House, 51–53 Hagley Road, Edgbaston, Birmingham B16 8TP Freephone 0808 808 4000 (Mon–Fri, 9am–9pm, Sat, 9.30am–1pm) www.nationaldebtline.co.uk A national telephone helpline for people with debt problems. The service is free, confidential and independent, and the call handlers also distribute free self-help materials. Personal Finance Society – ‘Find an Adviser’ service 42–48 High Road, South Woodford, London E18 2JP Tel 020 8530 0852 www.findanadviser.org The UK’s largest professional body for independent financial advisers. Use the ‘Find an Adviser’ website to find qualified financial advisers in your area. Other useful organisations Turn2Us Hythe House, 200 Shepherd’s Bush Road, London W6 7NL Helpline 0808 802 2000 (Mon–Fri, 8am–8pm) Email [email protected] www.turn2us.org.uk Provides an online service to help people in financial need in the UK. Its website has information about the benefits and grants available from both statutory and voluntary organisations. You can often apply for support directly from the website. Unbiased Ltd 117 Farringdon Road, London EC1R 3BX Email [email protected] www.unbiased.co.uk Helps people search for details of local member independent financial advisers online at unbiased.co.uk Support for carers Carers Trust 32–36 Loman Street, London SE1 0EH Tel 0844 800 4361 Email [email protected] www.carers.org and www.youngcarers.net The largest provider of comprehensive carers support services in the UK. Through its network of independently managed Carers’ Centres, 85 young carers services and interactive websites, it currently provides information, advice and support services to over 400,000 carers, including approximately 25,000 young carers. Carers UK 20 Great Dover Street, London SE1 4LX Tel 020 7378 4999 Advice line 0808 808 7777 (Wed and Thurs, 10am–12pm and 2–4pm) Email [email protected] www.carersuk.org Offers information and support to carers. Can put people in contact with local 97 Understanding advanced (metastatic) prostate cancer support groups. Has national offices for Scotland, Wales and Northern Ireland: Equipment and advice on living with disability Assist UK Carers Scotland Redbank House, The Cottage, 21 Pearce 4 St Chad’s Street, Street, Glasgow G51 3UT Manchester M8 8QA Tel 0141 445 3070 Tel 0161 832 9757 Email Email [email protected] [email protected] www.carersuk.org/ www.assist-uk.org scotland An independent voluntary organisation with a network Carers Wales of disabled living centres River House, Ynsbridge throughout the UK. Centres Court, Gwaelod-y-Garth, offer advice and a range Cardiff CF15 9SS of products and equipment Tel 029 2081 1370 designed to make life easier Email [email protected] for people who have difficulty www.carersuk.org/wales with daily activities. Carers Northern Ireland 58 Howard Street, Belfast BT1 6PJ Tel 028 9043 9843 Email [email protected] www.carersuk.org/ northernireland 98 The Blue Badge Scheme (Department for Transport) www.direct.gov.uk/ en/DisabledPeople/ MotoringAndTransport/ Bluebadgescheme Allows drivers of passengers with severe mobility problems to park close to where they need to go. The scheme is administered by local authorities that deal with applications and issue badges. Other useful organisations Applications can be made through the website and are sent to your local authority for a decision. British Red Cross 44 Moorfields, London EC2Y 9AL Tel 0844 871 11 11 Email [email protected] www.redcross.org.uk Provides short-term support for vulnerable people in the UK, including therapeutic care, a medical equipment loan service and a transport service. Has offices throughout the UK. Support for older people Age UK Tavis House, 1–6 Tavistock Square, London WC1H 9NA Advice Line 0800 169 6565 (Daily, 8am–7pm) Email [email protected] www.ageuk.org.uk Age UK provides information and advice on anything from health to housing on its free national information line and publishes impartial and informative fact sheets and advice guides. Age Cymru Ty John Pathy, Units 13/14 Neptune Court, Vanguard Way, Cardiff CF24 5PJ Tel 0800 169 6565 Email [email protected] Age Northern Ireland 3 Lower Crescent, Belfast BT7 1NR Tel 0808 808 7575 Email [email protected] theagedni.org Age Scotland Causewayside House, 160 Causewayside, Edinburgh EH9 1PR Tel 0845 125 9732 Email enquiries @ageconcernand helptheagedscotland.org.uk 99 Understanding advanced (metastatic) prostate cancer Advanced cancer and end-of-life care Marie Curie Cancer Care 89 Albert Embankment, London SE1 7TP Freephone 0800 716 146 Tel 020 7599 7777 (England) 028 9088 2032 (NI) 0131 561 3900 (Scotland) 01495 740 818 (Wales) Email [email protected] www.mariecurie.org.uk Marie Curie nurses provide free end-of-life care to people with cancer in their own homes, 24 hours a day, 365 days a year. There are also Marie Curie hospices across the UK. Help the Hospices Hospice House, 34–44 Britannia Street, London WC1X 9JG Tel 020 7520 8200 Email [email protected] www.helpthehospices. org.uk Provides information relevant to living with advanced illness. Compiles a directory of hospice services, as well as 100 practical booklets. These are all available for free via its website. Practical help and information on funerals Natural Death Centre In The Hill House, Watley Lane, Twyford, Winchester SO21 1QX Tel 01962 712 690 Email [email protected] www.naturaldeath.org.uk Aims to support those dying at home and their carers, and to help people arrange inexpensive, family-organised, and environmentally-friendly funerals. Further resources Further resources Related Macmillan information You may want to order some of the resources mentioned in this booklet. These include: • Are you worried about prostate cancer? • Cancer and complementary therapies • Cancer genetics – how cancer sometimes runs in families • Hello, and how are you? • Help with the cost of cancer • How are you feeling? • Insurance • Lost for words: how to talk to someone with cancer • Making treatment decisions • Self-employment and cancer • Sexuality and cancer • Talking about your cancer • Talking to children when an adult has cancer • The building-up diet • Cancer treatment and fertility – information for men • Understanding cancer research trials (clinical trials) • Cancer, you and your partner • Understanding chemotherapy • Controlling cancer pain • Understanding radiotherapy • Controlling the symptoms of cancer • Understanding secondary cancer in the bone • Coping with fatigue • Work and cancer • Getting travel insurance • Working while caring for someone with cancer 101 Understanding advanced (metastatic) prostate cancer Other booklets in this series: Macmillan videos • Having tests for prostate cancer • Understanding the PSA test • Understanding early (localised) prostate cancer • Understanding locally advanced prostate cancer To order, visit be.macmillan. org.uk or call 0808 808 00 00. All of our information is also available online at macmillan.org.uk/ cancerinformation To order the fact sheets mentioned in this booklet, call 0808 808 00 00. Audio resources Our high-quality audio materials, based on our variety of booklets, include information about cancer types, different treatments and about living with cancer. To order your free CD, visit be.macmillan.org.uk or call 0808 808 00 00. 102 There are many videos on the Macmillan website featuring real-life stories and information from health and social care professionals. There’s a video about living with prostate cancer at macmillan.org.uk/ livingwithprostatecancer Useful websites A lot of information about cancer is available on the internet. Some websites are excellent; others have misleading or out-of-date information. The sites listed here are considered by nurses and doctors to contain accurate information and are regularly updated. Macmillan Cancer Support www.macmillan.org.uk Find out more about living with the practical, emotional and financial effects of cancer. Our website contains expert, accurate, up-to-date information about cancer and its treatments, including: Further resources • all the information from our 100+ booklets and 350+ fact sheets • videos featuring real-life stories from people affected by cancer and information from medical professionals • how Macmillan can help, the services we offer and where to get support • how to contact our cancer support specialists, including an email form to send your questions • local support groups search, links to other cancer organisations and a directory of information materials • a huge online community of people affected by cancer sharing their experiences, advice and support. www.cancer.gov (National Cancer Institute – National Institute of Health – USA) Gives comprehensive information on cancer and treatments. www.cancer.org (American Cancer Society) Nationwide community-based health organisation dedicated to eliminating cancer. www.cancerhelp.org.uk (Cancer Research UK) Contains patient information on all types of cancer and has a clinical trials database. www.healthtalkonline.org www.youthhealthtalk.org (site for young people) Both websites contain information about some cancers and have video and audio clips of people talking about their experiences. 103 Understanding advanced (metastatic) prostate cancer www.macmillan.org.uk/ cancervoices (Macmillan Cancer Voices) Enables people who have or have had cancer, and those close to them such as family and carers, to speak out about their experience of cancer. www.n-i.nhs.uk (Health and Social Care in Northern Ireland) The official gateway to health and social care services in Northern Ireland. www.patient.co.uk (Patient UK) www.nhs.uk Has evidence-based (NHS Choices) information leaflets on This is the country’s biggest a variety of medical and health website and gives all the health topics. information you need to make decisions about your health. www.riprap.org.uk (Riprap) www.nhsdirect.nhs.uk Developed especially (NHS Direct Online) for teenagers who have NHS health information a parent with cancer. site for England – covers all aspects of health, illness and treatments. www.nhs24.com (NHS 24 in Scotland) www.nhsdirect.wales. nhs.uk (NHS Direct Wales) 104 Your notes and questions Your notes and questions You could use these pages to write down any questions you want to ask your doctor or nurse, and then to write down the answers you receive. 105 Understanding advanced (metastatic) prostate cancer TNM staging Two of the most commonly used staging systems are a numbered staging system (see page 26) and the TNM staging system. The TNM system is more detailed and is described below. T stands for Tumour Doctors put a number next to the ‘T’ to describe the size and spread of the cancer. T1 – The tumour is within the prostate gland. It is too small to be detected during a rectal examination, but may be picked up through tests such as a PSA test, a biopsy or a transurethral resection of the prostate gland (TURP) – an operation to make passing urine easier by removing part of the prostate gland. There are generally no symptoms with T1 tumours. T2 – The tumour is still within the prostate gland but is large enough to be felt during a digital rectal examination, or it shows up on an ultrasound scan. Often there are no symptoms. The T2 stage is divided into three further parts: T2a – The tumour is only in one half of one of the two lobes that make up the prostate gland. T2b – The tumour is in more than one half of one of the lobes in the prostate gland. T2c – The tumour is in both lobes of the prostate gland. 106 Understanding advanced (metastatic) prostate TNM staging cancer T1 and T2 tumours are known as early (localised) prostate cancer. T3 – The cancer has begun to spread through the capsule that surrounds the prostate gland. The T3 stage is divided into two further parts: T3a – The tumour has broken through the capsule but is not affecting the surrounding structures. T3b – The tumour has spread into the glands that produce semen (seminal vesicles). These are very close to the prostate gland and sit just underneath the bladder. Bladder T3 tumour T2 tumour Prostate gland T1 tumour This diagram compares the size of T1, T2 and T3 tumours in the prostate gland 107 Understanding advanced (metastatic) prostate cancer T4 – The tumour has started to spread into nearby parts of the body such as the bladder or rectum. T3 and T4 tumours are known as locally advanced prostate cancer because the cancer has started to spread outside the prostate gland and may be invading surrounding structures. If the cancer has spread to other parts of the body, it’s known as metastatic, secondary, or advanced prostate cancer. Bladder Prostate gland Rectum Seminal vesicle T4 tumour This diagram shows a T4 tumour that has started to spread from the prostate gland into surrounding structures 108 TNM staging At the hospital you might also see the letters ‘N’ and ‘M’. N stands for Nodes This describes whether there are any lymph nodes near the prostate gland that have cancer in them. The ‘N’ may have an ‘X’ or a number written next to it, which gives extra information about the nodes that were examined: NX – The lymph nodes were not examined. N0 – The lymph nodes were examined but no cancer was found. N1 – Cancer was found in the lymph nodes. M stands for Metastasis Metastasis means that the cancer has spread to other parts of the body, such as the bones. The ‘M’ may have a number written next to it, which gives extra information about where the cancer has spread to: M0 – The cancer has not spread to other parts of the body. M1 – The cancer has spread to another part of the body, such as the bones, lung or liver. Our cancer support specialists on 0808 808 00 00 can tell you more about TNM staging. It’s also important to talk to your doctor for detailed information about your situation. 109 Understanding advanced (metastatic) prostate cancer Disclaimer We make every effort to ensure that the information we provide is accurate and up to date but it should not be relied upon as a substitute for specialist professional advice tailored to your situation. So far as is permitted by law, Macmillan does not accept liability in relation to the use of any information contained in this publication, or third-party information or websites included or referred to in it. Some photographs are of models. Thanks This booklet has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been approved by our medical editor, Dr Terry Priestman, Consultant Clinical Oncologist. With thanks to: Jason Alcorn, Clinical Nurse Specialist; Wendy Ansell, Clinical Nurse Specialist; Mr Gnanapragasam, Consultant Urologist; Dr Stephen Harland, Medical Oncologist; Dr Stephen Mangar, Consultant Clinical Oncologist; Dr Lisa Pickering, Consultant Medical Oncologist; and the people affected by cancer who reviewed this edition. Sources National Institute for Health and Clinical Excellence (NICE). Prostate cancer: Diagnosis and treatment. www.nice.org.uk (accessed July 2011). NCCN Clinical Practice Guidelines in Oncology: Prostate Cancer. 2011. Hanks, et al. Oxford Textbook of Palliative Medicine. 4th Edition. 2010. Oxford University Press. Kirby, et al. Prostate Cancer – Principles and Practice. 2006. Lippincott, Williams and Wilkins. Cancer Research UK. www.cancerresearchuk.org (accessed July 2011). UpToDate. www.uptodate.com (accessed July 2011). 110 Can you do something to help? We hope this booklet has been useful to you. It’s just one of our many publications that are available free to anyone affected by cancer. They’re produced by our cancer information specialists who, along with our nurses, benefits advisers, campaigners and volunteers, are part of the Macmillan team. When people are facing the toughest fight of their lives, we’re there to support them every step of the way. We want to make sure no one has to go through cancer alone, so we need more people to help us. When the time is right for you, here are some ways in which you can become a part of our team. 5 ways you can someone hElP with cAncer Share your cancer experience Support people living with cancer by telling your story, online, in the media or face to face. Campaign for change We need your help to make sure everyone gets the right support. Take an action, big or small, for better cancer care. Help someone in your community A lift to an appointment. Help with the shopping. Or just a cup of tea and a chat. Could you lend a hand? Raise money Whatever you like doing you can raise money to help. Take part in one of our events or create your own. Give money Big or small, every penny helps. To make a one-off donation see over. Call us to find out more 0300 1000 200 macmillan.org.uk/getinvolved Please fill in your personal details Don’t let the taxman keep your money Mr/Mrs/Miss/Other Do you pay tax? If so, your gift will be worth 25% more to us – at no extra cost to you. All you have to do is tick the box below, and the tax office will give 25p for every pound you give. Name Surname Address Postcode Phone Email Please accept my gift of £ (Please delete as appropriate) I enclose a cheque / postal order / Charity Voucher made payable to Macmillan Cancer Support OR debit my: Visa / MasterCard / CAF Charity Card / Switch / Maestro Card number Valid from Expiry date Issue no Security number I am a UK taxpayer and I would like Macmillan Cancer Support to treat all donations I have made for the four years prior to this year, and all donations I make in the future, as Gift Aid donations, until I notify you otherwise. I confirm I have paid or will pay an amount of Income Tax and/or Capital Gains Tax in each tax year, that is at least equal to the tax that Charities & CASCs I donate to will reclaim on my gifts. I understand that other taxes such as VAT and Council Tax do not qualify and that Macmillan Cancer Support will reclaim 25p of tax on every £1 that I give. Macmillan Cancer Support and our trading companies would like to hold your details in order to contact you about our fundraising, campaigning and services for people affected by cancer. If you would prefer us not to use your details in this way please tick this box. In order to carry out our work we may need to pass your details to agents or partners who act on our behalf. Signature Date / / If you’d rather donate online go to macmillan.org.uk/donate # Please cut out this form and return it in an envelope (no stamp required) to: Supporter Donations, Macmillan Cancer Support, FREEPOST LON15851, 89 Albert Embankment, London SE1 7UQ 27530 Cancer is the toughest fight most of us will ever face. If you or a loved one has been diagnosed, you need a team of people in your corner, supporting you every step of the way. That’s who we are. We are the nurses and therapists helping you through treatment. The experts on the end of the phone. The advisers telling you which benefits you’re entitled to. The volunteers giving you a hand with the everyday things. The campaigners improving cancer care. The community supporting you online, any time. The fundraisers who make it all possible. You don’t have to face cancer alone. We can give you the strength to get through it. We are Macmillan Cancer Support. Questions about living with cancer? Call free on 0808 808 00 00 (Mon–Fri, 9am–8pm) Alternatively, visit macmillan.org.uk Hard of hearing? Use textphone 0808 808 0121, or Text Relay. Non-English speaker? Interpreters available. © Macmillan Cancer Support, 2012. 3rd edition. MAC11686. Next planned review 2014. Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Printed using sustainable material. Please recycle.
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