Advanced prostate cancer

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1 Diagnosis Specialist Nurses prostatecanceruk.org 1 Advanced prostate cancer In this fact sheet: What is advanced prostate cancer? How is advanced prostate cancer diagnosed? What do my test results mean? What treatments are available? Dealing with prostate cancer Questions to ask your doctor or nurse More information About us What is my outlook? This fact sheet is for men who have been diagnosed with advanced (metastatic) prostate cancer cancer that has spread from the prostate gland to other parts of the body. Your partner, family or friends might also find it helpful. We explain what advanced prostate cancer is, what your test results mean, and the treatments available. If you want to find out about localised or locally advanced prostate cancer, read our Tool Kit fact sheets, Localised prostate cancer and Locally advanced prostate cancer. Each hospital will do things slightly differently. Use this fact sheet as a general guide and ask your doctor or nurse for more details about your care and the support available to you. You can also speak to our Specialist Nurses, in confidence, on What is advanced prostate cancer? Advanced prostate cancer is cancer that has spread from the prostate to other parts of the body. It develops when prostate cancer cells move from the prostate to other parts of the body through the blood stream or lymphatic system. The lymphatic system is part of the body s immune system. Prostate cancer can spread to any part of the body, but most commonly to the bones. More than four out of five men (80 per cent) with advanced prostate cancer will have cancer that has spread to their bones. Another common place for prostate cancer to spread to is the lymph nodes (sometimes called lymph glands). Lymph nodes are part of your lymphatic system and are found throughout your body. Some of the lymph nodes are in the pelvic area near the prostate. You might hear cancer that has spread described as metastatic or secondary prostate cancer, secondaries, metastases or mets. It is still prostate cancer, wherever it is in the body.

2 Diagnosis Specialist Nurses prostatecanceruk.org 2 lymph vessel bones spine prostate gland lymph nodes bladder How is advanced prostate cancer diagnosed? If you ve been diagnosed with advanced prostate cancer, you will have had some or all of the following tests. These are the main tests used to diagnose prostate cancer, but you might have other tests as well. Prostate specific antigen (PSA) test This measures the amount of PSA in your blood. PSA is a protein produced by normal cells in the prostate and also by prostate cancer cells, wherever they are in the body. Advanced prostate cancer can cause symptoms, such as fatigue (extreme tiredness), bone pain and problems urinating. The symptoms you have will depend on where the cancer has spread to. Some men only get a few symptoms. If you do get symptoms, speak to your doctor or nurse. There are treatments available to help manage them (see page 6). It s not possible to cure advanced prostate cancer, but treatments can keep it under control, sometimes for several years. If you re not sure whether your prostate cancer is advanced, speak to your doctor or nurse. They can explain your test results and the treatments available. Or you could call our Specialist Nurses for more information and support. Digital rectal examination (DRE) The doctor or nurse feels the prostate through the wall of the back passage (rectum). They feel for hard or irregular areas that might be a sign of cancer. Prostate biopsy Thin needles are used to take small samples of tissue from the prostate. The samples are looked at under a microscope to check for cancer. You might not need a biopsy if other tests show you have advanced prostate cancer. But you may need one to take part in some clinical trials (see page 6). If you might want to join a clinical trial in the future, talk to your doctor about having a biopsy. They can help you think about the pros and cons. Magnetic resonance imaging (MRI) or computerised tomography (CT) scan These scans take images of your body to see whether the cancer has spread outside the Your multi-disciplinary team (MDT) This is the team of health professionals involved in your care. It is likely to include: a specialist nurse a urologist (a surgeon who specialises in diseases of the urinary and reproductive systems, including prostate cancer) an oncologist (a doctor who specialises in cancer treatments other than surgery) a radiographer (a person who takes X-rays and scans of the body). Your MDT will discuss your diagnosis and which treatments might be suitable for you. You might not meet them all straight away. Your main point of contact might be called your key worker. This is usually your specialist nurse, but might be someone else. The key worker will co-ordinate your care. They can also help you understand your diagnosis and treatment, and help you get information and support.

3 Diagnosis Specialist Nurses prostatecanceruk.org 3 prostate, for example to the lymph nodes or nearby bones. You might not need an MRI or CT scan if you ve already had a bone scan (see below). Bone scan This can show whether any cancer cells have spread to the bones, which is a common place for prostate cancer to spread to. Alkaline phosphatase (ALP) test This measures the amount of a protein called ALP in your blood. The test may help to show how much the cancer is affecting your bones. It can also help to show how well your treatment is working if your cancer has spread to the bones. Read more about tests used to diagnose prostate cancer in our Tool Kit fact sheet, How prostate cancer is diagnosed. What do my test results mean? Your doctor will look at all your test results to get an idea of how quickly your cancer has spread and how quickly it might grow. This will help you and your doctor to discuss suitable treatments. PSA level It s normal to have a small amount of PSA in your blood, and the amount rises as you get older. Other things can affect your PSA level, such as a urine infection, vigorous exercise, or a prostate problem. You may have had a PSA test that showed your PSA was raised, and then had other tests to diagnose your prostate cancer. After you ve been diagnosed, you will have regular PSA tests. This is a useful way to check how well your treatment is working. If your PSA level falls this usually suggests your treatment is working. Gleason grade and Gleason score If you ve had a biopsy, your doctor may talk about your Gleason grade and Gleason score. Gleason grade Prostate cancer cells in your biopsy samples are given a Gleason grade. This tells you how aggressive the cancer is in other words, how likely it is to grow and spread outside the prostate. When cancer cells are seen under the microscope, they have different patterns, depending on how quickly they re likely to grow. The pattern is given a grade from 1 to 5. This is called the Gleason grade. If a grade is given, it will usually be 3 or higher, as grades 1 and 2 are not cancer. Gleason score There may be more than one grade of cancer in the biopsy sample. An overall Gleason score is worked out by adding together two Gleason grades. The first is the most common grade in all the samples. The second is the highest grade of what s left. When these two grades are added together, the total is called the Gleason score. Gleason score = the most common grade + the highest other grade in the samples For example, if the biopsy samples show that: most of the cancer seen is grade 3 and the highest grade of any other cancer seen is grade 4, then the Gleason score will be 7 (3+4). A Gleason score of 4+3 shows that the cancer is slightly more aggressive than a score of 3+4, as there is more grade 4 cancer. If you have prostate cancer, your combined Gleason score will be between 6 (3+3) and 10 (5+5). You might only be told your total Gleason score, and not your Gleason grades. What does the Gleason score mean? The higher the Gleason score, the more aggressive the cancer. A Gleason score of 6 suggests that the cancer is slow-growing. A Gleason score of 7 suggests that the cancer may grow at a moderate rate. A Gleason score of 8, 9 or 10 suggests that the cancer may grow more quickly.

4 Diagnosis Specialist Nurses prostatecanceruk.org 4 You might not need a biopsy to measure your Gleason score if another test, such as a bone scan, shows your cancer has spread. Or you might not need one if your PSA level is very high (for example, in the hundreds or thousands). Staging Staging is a way of recording how far the cancer has spread. The most common method is the TNM (Tumour-Nodes-Metastases) system. The T stage shows how far the cancer has spread in and around the prostate. The N stage shows whether the cancer has spread to the lymph nodes. The M stage shows whether the cancer has spread to other parts of the body. You might not be told your N stage or your M stage your doctor may just tell you whether your cancer has spread to the lymph nodes or to other parts of your body. T stage The T stage shows how far the cancer has spread in and around the prostate. A DRE (see page 2) is usually used to find out the T stage. You might also have an MRI scan or a CT scan to confirm your T stage. You may not be told your T stage if other tests show your cancer has spread to your bones. N stage The N stage shows whether your cancer has spread to the lymph nodes near the prostate. This is a common place for prostate cancer to spread to. An MRI or CT scan (see page 2) is used to find out your N stage. The possible N stages are: NX The lymph nodes were not looked at, or the scans were unclear. N0 No cancer can be seen in the lymph nodes. N1 The lymph nodes contain cancer. If your scans suggest that your cancer has spread to the lymph nodes (N1), it may be treated as either locally advanced or advanced prostate cancer. This will depend on several things, such as which lymph nodes are affected and how far the cancer has spread. You might not be told your N stage if other tests show your cancer has spread to your bones. M stage The M stage shows whether the cancer has spread (metastasised) to other parts of the body, such as the bones. A bone scan (see page 3) is usually used to find out your M stage. The possible M stages are: MX The spread of the cancer wasn t looked at, or the scans were unclear. M0 The cancer hasn t spread to other parts of the body. M1 The cancer has spread to other parts of the body. If your cancer has spread (M1), you will be diagnosed with advanced prostate cancer. Ask your doctor or nurse to explain your test results if you don t understand them. Read more in our Tool Kit fact sheet, How prostate cancer is diagnosed, or call our Specialist Nurses. What treatments are available? Hormone therapy Hormone therapy is the standard first treatment for men with advanced prostate cancer. Prostate cancer needs the male hormone testosterone to grow. Hormone therapy works by stopping testosterone from reaching prostate cancer cells. This causes the cancer cells to shrink, wherever they are in the body. Hormone therapy will be a life-long treatment for many men with advanced prostate cancer. It won t cure your cancer, but it can keep it under control, sometimes for several years, before you need further treatment. Hormone therapy can also help to control the symptoms of advanced prostate cancer, such as bone pain.

5 Diagnosis Specialist Nurses prostatecanceruk.org 5 There are three main types of hormone therapy for prostate cancer: injections or implants to stop the production of testosterone surgery (orchidectomy) to remove the testicles or just the parts that make testosterone tablets to block the effects of testosterone, called anti-androgens. The most common type of injection is called a luteinizing hormone-releasing hormone agonist (LHRH agonist). There s another type of injection called a gonadotrophin-releasing hormone antagonist (GnRH antagonist). Like all treatments, hormone therapy can cause side effects. These are caused by lowered testosterone levels. There are a lot of possible side effects, but hormone therapy affects men in different ways. Some men get a few side effects and others don t get any at all. The chances of getting each side effect depend on which type of hormone therapy you re on and how long you re on it for. There are ways to manage side effects, so speak to your doctor or nurse. Side effects can include: hot flushes loss of desire for sex and problems getting or keeping an erection tiredness (fatigue) swelling and tenderness in the breast area (gynaecomastia) weight gain loss of muscle strength thinning of the bones (osteoporosis) a risk of heart disease and diabetes changes to your mood problems with concentration and memory. Before you start your treatment, make sure you have all the information you need. It s important you think about the possible side effects and how you would cope with them. Speak to your doctor or nurse about this. It can help to write down any questions you want to ask at your next appointment. And to write down or record what s said to help you remember it. It can also help to take someone to appointments, such as your partner, friend or family member. Read more about hormone therapy in our Tool Kit fact sheet, Hormone therapy. Read more about side effects and how to manage them in our booklet, Living with hormone therapy: A guide for men with prostate cancer. Watchful waiting Watchful waiting is a way of monitoring prostate cancer that isn t causing any symptoms or problems. The aim is to keep an eye on the cancer and avoid treatment unless you get symptoms. This means you will avoid or delay the side effects of treatment. If you do get symptoms, you ll be offered hormone therapy to control the cancer and help manage symptoms. Watchful waiting isn t usually recommended for men with advanced prostate cancer. But it may be an option if you don t have symptoms and you want to avoid the side effects of treatment. If you d prefer not to have treatment, speak to your doctor. They can help you think about the pros and cons of watchful waiting. Read more in our Tool Kit fact sheet, Watchful waiting. What happens if my cancer starts to grow again? The first hormone therapy you have may keep your cancer under control, sometimes for several years. But over time, the cancer may change and your treatment may stop working so well. This means your cancer may start to grow again. But there are other treatments available that can help to control the cancer and manage any symptoms. More hormone therapy You will usually stay on the first type of hormone therapy, but you may be offered another type of hormone therapy as well. Read more about other types of hormone therapy in our Tool Kit fact sheet, Second-line hormone therapy and further treatment options.

6 Diagnosis Specialist Nurses prostatecanceruk.org 6 Chemotherapy Chemotherapy uses anti-cancer drugs to kill the cancer cells. It is an option for men whose prostate cancer is no longer responding to hormone therapy. Chemotherapy doesn t get rid of prostate cancer, but aims to shrink it and slow its growth. It may help some men with advanced prostate cancer to live longer. Chemotherapy can also help to improve symptoms. Read more about chemotherapy, including the possible side effects, in our Tool Kit fact sheet, Chemotherapy. Abiraterone (Zytiga ) This is a type of hormone therapy for men with advanced prostate cancer that has stopped responding to other types of hormone therapy and chemotherapy. Abiraterone is also suitable for men whose cancer has stopped responding to other types of hormone therapy, but who have not yet had chemotherapy. But it s not widely available for these men on the NHS. Your doctor may be able to apply for you to get abiraterone before chemotherapy if they think it s suitable for you. But getting abiraterone might depend on whether you ve had a drug called enzalutamide (see below) in the past. Read more about abiraterone on our website at prostatecanceruk.org/new-treatments Enzalutamide (Xtandi ) Enzalutamide is a new type of hormone therapy for men with advanced prostate cancer that has stopped responding to other hormone therapy and chemotherapy treatments. Enzalutamide is available on the NHS for men who ve already had a chemotherapy drug called docetaxel. But getting enzalutamide might depend on whether you ve had abiraterone in the past. Early research has shown that enzalutamide only has a small effect in men who have previously had abiraterone. But we need more research into this. Enzalutamide may also be suitable for men who have stopped responding to hormone therapy and haven t yet had chemotherapy. But it isn t widely available for these men. Read more about enzalutamide on our website at prostatecanceruk.org/new-treatments Clinical trials A clinical trial is a type of medical research. Clinical trials aim to find new and improved ways of preventing, diagnosing, treating and controlling illnesses. There are clinical trials looking at new treatments for men with advanced prostate cancer. You can ask your doctor or nurse if there are any clinical trials you could take part in, or call our Specialist Nurses. You can also find details of clinical trials for prostate cancer at Read more in our Tool Kit fact sheet, A guide to prostate cancer clinical trials. Treatments to help manage symptoms If you have advanced prostate cancer, you may have symptoms such as bone pain. Hormone therapy and chemotherapy may help to relieve or reduce these. There are also specific treatments to help manage symptoms. Speak to your doctor or nurse if you have symptoms. Pain-relieving drugs Treatments to control pain include mild pain-relieving drugs such as paracetamol and non-steroidal anti-inflammatory drugs such as ibuprofen. There are also stronger drugs called opioids, which include codeine and morphine, so speak to your doctor or nurse if you have pain. Read more about ways to control pain in our Tool Kit fact sheet, Managing pain in advanced prostate cancer. Radiotherapy Radiotherapy can help control symptoms by slowing down the growth of the cancer. This is sometimes called palliative radiotherapy.

7 Diagnosis Specialist Nurses prostatecanceruk.org 7 There are two types of radiotherapy to reduce symptoms. External beam radiotherapy This is where radiation is directed at the area of pain from outside the body. Radioisotopes This involves an injection of a very small amount of a radioactive liquid. Read more about radiotherapy to control symptoms in our Tool Kit fact sheet, Radiotherapy for advanced prostate cancer. Bisphosphonates These are drugs that treat pain caused by cancer that has spread to the bones. Cancer can damage the bones and make them weaker. Bisphosphonates bind to damaged areas of bone, slowing down the breakdown of the bone and relieving pain. Read more about bisphosphonates in our Tool Kit fact sheet, Bisphosphonates for advanced prostate cancer. There is more information about ways to manage symptoms and the support available in our booklet, Advanced prostate cancer: Managing symptoms and getting support. If you have any questions, call our Specialist Nurses. What is my outlook? Many men will want to know how successful their treatment is likely to be in controlling their cancer. This is sometimes called your outlook or prognosis. While it isn t possible to cure advanced prostate cancer, hormone therapy can keep it under control, sometimes for several years. And when hormone therapy stops working, there are other treatments available to keep the cancer under control for longer. No one can tell you exactly what your outlook will be, as every cancer is different and will affect each man differently. And not everyone wants to know about their outlook. But some men find it helpful to discuss their outlook so they can make plans for the future. Read more about this in our booklet, Advanced prostate cancer: Managing symptoms and getting support. Speak to your doctor about your own situation. For general information about the outlook for men with prostate cancer, visit the CancerHelp UK website. Dealing with prostate cancer Some men say being diagnosed with prostate cancer changes the way they think and feel about life. If you are dealing with prostate cancer you might feel scared, worried, stressed, helpless or even angry. At times, lots of men with prostate cancer get these kinds of thoughts and feelings. But there s no right way that you re supposed to feel and everyone reacts in their own way. There are things you can do to help yourself and there are people who can help. Families can also find this a difficult time and they may need support too. This section might also be helpful for them. How can I help myself? Everyone has their own way of dealing with advanced prostate cancer, but you may find some of the following suggestions helpful. Find out about your treatment, so you know what to expect. Find out about any side effects of your treatment, so you know what to expect, and how you can try to manage them. Be as active as you can. Physical activity can lift your mood. It can also help manage extreme tiredness (fatigue), which is common in men with advanced prostate cancer. Think about what you eat and drink. Some men find they manage better by aiming for a healthy, balanced diet. Read more about healthy eating in our Tool Kit fact sheet, Diet, physical activity and prostate cancer.

8 Diagnosis Specialist Nurses prostatecanceruk.org 8 Share what you re thinking find someone you can talk to. It could be someone close, or someone trained to listen, like a counsellor or your medical team. Take time out to look after yourself. When you feel up to it, learn some techniques to manage stress and to relax like listening to music or breathing exercises. Set yourself goals and things to look forward to. Find more ideas in our booklet, Living with and after prostate cancer: A guide to physical, emotional and practical issues. Read about ways of managing advanced cancer in our booklet, Advanced prostate cancer: Managing symptoms and getting support. Get more ideas about how to look after yourself from Macmillan Cancer Support, Maggie s Centres and Penny Brohn Cancer Care, as well as local cancer support centres. Who can help? Your medical team It could be useful to speak to your nurse, doctor, GP or someone else in your medical team. They can help you understand your diagnosis, treatment and side effects, listen to your concerns, and put you in touch with other people who can help. Trained counsellors Counsellors are trained to listen and can help you to find your own ways to deal with things. Many hospitals have counsellors or psychologists who specialise in helping people with cancer ask your doctor or nurse at the hospital if this is available. Your GP may also be able to refer you to a counsellor, or you can see a private counsellor. To find out more contact the British Association for Counselling & Psychotherapy. Our Specialist Nurses Our Specialist Nurses can answer your questions, help explain your diagnosis and go through your treatment options with you. They ve got time to listen to any concerns you or those close to you have about living with prostate cancer. Everything is confidential. To get in touch: call from our website at prostatecanceruk.org/we-can-help text NURSE to Our one-to-one support service Our one-to-one support service is a chance to speak to someone who s been there and understands what you re going through. You could discuss treatments, dealing with side effects, or telling people about your cancer whatever s important to you. Family members can also speak to partners of men with prostate cancer. Our online community Our online community is a place to talk about whatever s on your mind your questions, your ups and your downs. Anyone can ask a question or share an experience. Local support groups At local support groups men get together to share their experiences of living with prostate cancer you can ask questions, offload worries and know that someone understands what you re going through. Some groups have been set up by local health professionals, others by men themselves. Many also welcome partners, friends and relatives. Our fatigue support service We have a telephone support service called Get back on track that can help if you have problems with extreme tiredness (fatigue). Fatigue is a common symptom of prostate cancer. It can also be a side effect of some treatments for prostate cancer. Get back on track is a 10-week service delivered by our Specialist Nurses. Hospices Hospices don t just provide care for people at the end of their life. They provide a range of services, including treatment to manage symptoms, emotional and spiritual support, practical and financial advice, and support for families.

9 Diagnosis Specialist Nurses prostatecanceruk.org 9 Some people go into a hospice for a short time to get their symptoms under control before going home again. You may also be able to use their services while still living at home. Your GP, doctor or district nurse can refer you to a hospice service. To find out more about all of the above, visit prostatecanceruk.org/we-can-help or call our Specialist Nurses on Questions to ask your doctor or nurse You may find it helpful to keep a note of any questions you have to take to your next appointment. What type of hormone therapy are you offering me and why? What are the advantages and disadvantages of my treatment? What treatments and support are available to help manage side effects? How often will I have check-ups and what will this involve? How will we know if my cancer starts to grow again? What other treatments are available if that happens? Can I join any clinical trials? If I have any questions or get any new symptoms, who should I contact?

10 Diagnosis Specialist Nurses prostatecanceruk.org 10 More information British Association for Counselling & Psychotherapy Telephone: Information about counselling and details of therapists in your area. CancerHelp UK Nurse helpline: Patient information from Cancer Research UK, including a database of clinical trials and advice on finding a trial. Healthtalkonline Watch, listen to and read personal experiences of men with prostate cancer and other health problems. Help the Hospices Telephone: Information about hospice care, including a database of hospice and palliative care providers. Maggie s Centres Telephone: A network of drop-in centres for cancer information and support. Includes an online support group. Marie Curie Cancer Care Telephone: Runs hospices throughout the UK and a nursing service for people in their own home free of charge. Penny Brohn Cancer Care Helpline: Runs courses and offers physical, emotional and spiritual support for people with cancer and those close to them. Royal College of Radiologists Interactive information on cancer treatment and scans. Includes descriptions from staff and patients. Macmillan Cancer Support Telephone: Practical, financial and emotional support for people with cancer, their family and friends.

11 Diagnosis Specialist Nurses prostatecanceruk.org 11 About us Prostate Cancer UK fights to help more men survive prostate cancer and enjoy a better life. This fact sheet is part of the Tool Kit. You can order more Tool Kit fact sheets, including an A to Z of medical words, which explains some of the words and phrases used in this fact sheet. Download and order our fact sheets and booklets from our website at prostatecanceruk.org/publications or call us on At Prostate Cancer UK, we take great care to provide up-to-date, unbiased and accurate facts about prostate cancer. We hope these will add to the medical advice you have had and help you to make decisions. Our services are not intended to replace advice from your doctor. References to sources of information used in the production of this fact sheet are available at prostatecanceruk.org This publication was written and edited by: Prostate Cancer UK s Health Information Team It was reviewed by: Wendy Ansell, Macmillan Urology Nurse Specialist, St Bartholomew s Hospital, London Pauline Bagnall, Uro-oncology Nurse Specialist, Northumbria Healthcare NHS Foundation Trust, North Shields Hilary Baker, Lead Clinical Nurse Specialist for Uro-oncology, University College London Hospitals Bev Baxter, Uro-oncology Clinical Nurse Specialist, Royal Derby Hospital, Derby Rhoda Molife, Medical Oncologist, The Royal Marsden Hospital, Surrey Lisa Pickering, Consultant Medical Oncologist, St George s Healthcare Trust and The Royal Marsden NHS Trust Philip Reynolds, Advanced Practitioner (Urology), Guy s and St Thomas Hospital, London Prostate Cancer UK Volunteers Prostate Cancer UK Specialist Nurses Tell us what you think If you have any comments about our publications, you can literature@prostatecanceruk.org

12 Speak to our Specialist Nurses * prostatecanceruk.org Donate today help others like you Did you find this information useful? Would you like to help others in your situation access the facts they need? Every year, 40,000 men face a prostate cancer diagnosis. Thanks to our generous supporters, we offer information free to all who need it. If you would like to help us continue this service, please consider making a donation. Your gift could fund the following services: 10 could buy a Tool Kit a set of fact sheets, tailored to the needs of each man with vital information on diagnosis, treatment and lifestyle. 25 could give a man diagnosed with a prostate problem unlimited time to talk over treatment options with one of our Specialist Nurses. To make a donation of any amount, please call us on , visit prostatecanceruk.org/donations or text PROSTATE to 70004*. There are many other ways to support us. For more details please visit prostatecanceruk.org/get-involved *You can donate up to 10 via SMS and we will receive 100% of your donation. Texts are charged at your standard rate. For full terms and conditions and more information, please visit prostatecanceruk.org/terms Like us on Facebook: Prostate Cancer UK Follow us on Prostate Cancer UK September 2014 To be reviewed July 2016 Call our Specialist Nurses from Mon to Fri 9am - 6pm, Wed 10am - 8pm * Calls are recorded for training purposes only. Confidentiality is maintained between callers and Prostate Cancer UK. Prostate Cancer UK is a registered charity in England and Wales ( ) and in Scotland (SC039332). Registered company number APC/NOV14