A practical guide to tests and treatments Having tests for Prostate cancer Contents Contents About this booklet 3 The prostate gland 5 Prostate symptoms 6 What is cancer? 7 The lymphatic system 8 Prostate cancer 11 How prostate cancer is diagnosed 12 Waiting for test results 19 Your test results 21 If you are diagnosed with prostate cancer 22 Staging and grading 27 Talking to healthcare staff 29 Asking questions 32 If you are a relative or friend 37 How we can help you 38 Other useful organisations 43 Further resources 50 TNM staging 54 1 Having tests for prostate cancer 2 About this booklet About this booklet This booklet is for men who may be having tests for prostate cancer. Tests for prostate cancer can be divided into two groups: • Diagnostic tests These are carried out to find out if you have prostate cancer. • Staging tests These are done if you’re diagnosed with prostate cancer. The results of staging tests help doctors decide which treatment is most suitable for you. This booklet gives information about the tests that fall into the two groups above. We hope it answers some of your questions and helps you deal with some of the feelings you may have. We have separate information for men who have been diagnosed with prostate cancer and already know what stage their cancer is: • Understanding early (localised) prostate cancer • Understanding locally advanced prostate cancer • Understanding advanced (metastatic) prostate cancer. 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, 3 Having tests for prostate cancer 9am–8pm. If you’re hard of hearing you can use textphone 0808 808 0121, or Text Relay. For non-English speakers, interpreters are available. Alternatively, visit macmillan.org.uk Turn to pages 43–53 for some useful addresses and websites. 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 The prostate gland 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 Bladder Vas deferens Seminal vesicle Prostate gland Rectum Penis Urethra Scrotum The male sex organs and surrounding structures The prostate produces a thick white fluid called semen that mixes with the sperm produced by the testicles. It also produces a protein called prostate-specific antigen (PSA) that turns the semen into liquid. 5 Having tests for prostate cancer 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. Prostate symptoms In men over 50, the prostate gland often gets larger due to a non-cancerous condition called benign prostatic hyperplasia (BPH), which is sometimes called hypertrophy. Cancer of the prostate is often slow-growing and symptoms may not occur for many years. Men with early prostate cancer are unlikely to have any symptoms, as these only occur when the cancer is large enough to put pressure on the urethra. The symptoms of both benign enlargement of the prostate gland and prostate cancer are similar, and can include any of the following: • difficulty passing urine • passing urine more frequently than usual, especially at night • blood in the urine (this is uncommon). If you have any of these symptoms, it’s important to have them checked by your doctor. 6 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 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. 7 Having tests for prostate cancer 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. 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. 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. Lymph nodes are small glands, each about the size of a baked bean. They can be found in many different places in the body, including near the prostate. 8 The lymphatic system Neck (cervical) lymph nodes Thymus Armpit (axillary) lymph nodes Spleen Groin (inguinal) lymph nodes The lymphatic system 9 Having tests for prostate cancer 10 Prostate cancer 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, in that small areas of cancer within the prostate are very common and may stay dormant (inactive) for many years. Around half of all men in their fifties have some cancer cells within their prostate, and 8 out of 10 men (80%) over the age of 80 have a small area of prostate cancer. Most of these cancers grow very slowly and so, particularly in elderly men, will never cause any problems. In a small number of men, prostate cancer can grow more quickly and in some cases may spread to other parts of the body, particularly the bones. 11 Having tests for prostate cancer How prostate cancer is diagnosed Men who have symptoms usually start by seeing their GP. Your GP will examine you and ask about your general health. The first tests used to diagnose prostate cancer are a digital rectal examination and a PSA test. Digital rectal examination (DRE) As the rectum (back passage) is close to the prostate gland, your doctor can feel for any abnormalities in the prostate by gently inserting a gloved finger (with lubrication) into the rectum. This may be uncomfortable but should not be painful. If there’s cancer in the prostate gland it may feel hard and knobbly, whereas with benign prostatic hyperplasia (see page 6), the prostate usually feels enlarged, firm and smooth. However, the prostate may feel normal, even when cancer cells are present. PSA (prostate-specific antigen) 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 of it is normally found in the blood. Men with cancer of the prostate tend to have a high level of PSA in their blood. 12 How prostate cancer is diagnosed However, this test isn’t always reliable and some men who have prostate cancer will have a normal PSA level. The PSA level can also be raised by: • urine infections or infection of the prostate (prostatitis) • recent prostate biopsies • having a urinary catheter (a tube to drain urine) • prostate or bladder surgery • prostate massage (see page 15). PSA levels also rise as men get older: • In men aged 50–59, a PSA of 3 nanograms per millilitre (ng/ml) of blood or lower is considered normal. • In men aged 60–69, a PSA of 4 ng/ml or lower is considered normal. • In men aged 70 and over, a PSA of 5 ng/ml is considered normal. Men with a PSA level that is considered high for their age are usually referred for further tests. As a general rule, the higher the level of PSA, the more likely it is to be cancer. Once the cancer has been treated, the level of PSA will fall. So, measuring PSA levels can be a helpful way of assessing the cancer and the effectiveness of treatment. If your PSA level is raised, or if your GP feels any abnormalities during the digital rectal examination, they will refer you to hospital for a discussion about further tests. 13 Having tests for prostate cancer Why is the PSA test not used for screening? PSA is a protein produced by the prostate as well as by prostate cancer cells. The PSA test may help to detect early prostate cancer. However, men in the UK are not always offered PSA tests to screen for prostate cancer. There are many reasons for this: • The PSA test alone is not completely reliable for detecting cancer. For every 100 men with a raised PSA level, only about 30 will have prostate cancer detected in a biopsy (see page 16). Also, about 15% of men with a normal PSA level will have prostate cancer. The amount of PSA in the blood can be high for reasons other than prostate cancer (see page 13). • If the PSA level is high, a man may need further tests such as a biopsy. A biopsy can usually show whether cancer is present in the prostate, but for a small number of men (5–10%), the biopsy will not show cancer, even if a cancer is present. Some men find having a biopsy of the prostate painful and uncomfortable. There is also a small risk of bleeding into the urine, semen or bowel motions, as well as a small risk of infection. Very rarely, if you get an infection you may need to go into hospital for treatment. • Many small prostate cancers detected by a PSA test would never grow enough to cause any symptoms or problems at all during a man’s lifetime. • Many prostate cancers grow very slowly and the side effects from treatment (radiotherapy or surgery) may be worse than the effects of the prostate cancer. Research hasn’t yet shown whether or not finding and treating prostate cancer early gives an improved chance of survival. This can make it difficult to decide whether to have a test or 14 How prostate cancer is diagnosed treatment if cancer is found. Your doctors and nurses will be aware of this and can discuss it with you. If you don’t have prostate symptoms but would like to have a PSA test, you should discuss this with your GP, who can give you information and arrange the test if you’d like to go ahead. Our booklet Understanding the PSA test has more information. We also have a video about the PSA test on our website. You can watch this at macmillan.org.uk/diagnosis/PSAtesting PCA3 (prostate cancer antigen 3) test This is a new test for prostate cancer that’s still being researched. PCA3 is a protein that’s made by normal prostate cells. When prostate cancer is present, much more of this protein is made than usual. If a man has high levels of this protein, it can be found in the urine. Before providing a urine sample, you will have a digital rectal examination (see page 12). During the procedure, the doctor massages the prostate, which helps PCA3 to be detected in the urine afterwards. Studies have shown that this test may be helpful in diagnosing prostate cancer, but more research is needed. Like the PSA test, PCA3 can’t diagnose cancer on its own, but it might help doctors decide which men should have a biopsy (see page 16). This would mean that men who are very unlikely to have prostate cancer could avoid the possible risks and side effects of having a prostate biopsy. PCA3 is not available on the NHS at the moment, but is being offered by some private hospitals. It can be expensive, so it’s important to have as much information as possible about the 15 Having tests for prostate cancer test beforehand. Your doctor or specialist nurse will be able to talk to you about how helpful it might be in your situation. Trans-rectal ultrasound scan (TRUS) Ultrasound scans use sound waves to build up a picture of the prostate gland. During this scan, a small, lubricated probe is passed gently into the back passage and an image of the prostate appears on a screen. This type of scan is used to measure the size and thickness of the prostate. A sample of cells (biopsy) is often taken at the same time for examination under the microscope by a pathologist (see below). The scan may be uncomfortable but it only takes a few minutes. Biopsy If the initial tests (digital rectal examination, PSA or TRUS) show there is a possibility of cancer, you may have 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. The biopsy is normally done at the same time as an ultrasound (see above). The ultrasound probe is used to guide the needle through the wall of the back passage (rectum) and into the prostate. The 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. For 24 hours after this test, it’s important to drink plenty of fluids. For up to a few weeks afterwards, you may notice blood in your semen during sex. You may also notice a small amount of blood in your urine or when opening your bowels. 16 How prostate cancer is diagnosed If these symptoms persist, speak to your doctor. Unfortunately, even if there is cancer in the prostate it may not be found by a biopsy. This happens in around 1 in 10 or 20 men (5–10%). If a biopsy is negative it may need to be repeated, which may pick up a cancer that was missed the first time. Sometimes, PSA levels may be measured again after a few months and the biopsy repeated if the PSA level starts to rise. The repeat biopsy is sometimes carried out by saturation biopsy (also known as template biopsy). This is done under a general anaesthetic. A needle will be passed through the skin between the scrotum (the skin that covers the testicles) and the anus. This type of biopsy uses a special needle, which is able to take many small tissue samples from different areas of the prostate, all at the same time. It’s usually only used if previous biopsies have not shown cancer but your doctor still thinks there may be a high risk you have cancer. Your doctor can give you more information about biopsies and discuss whether saturation biopsy might be helpful in your situation. 17 Having tests for prostate cancer 18 Waiting for test results Waiting for test results It can take from a few days to a few weeks for test results to be ready, and many people feel anxious during this time. Although it’s normal to feel this way, you may feel overwhelmed by the anxiety while waiting for your results. You may feel that you have no control over what’s going to happen to you. The waiting period might also feel unreasonably long and the future may feel very uncertain. There is no right or wrong way to deal with these feelings. Some people find it helps to carry on with normal activities as much as possible. Continuing with everyday life, such as going to work, can be a welcome distraction from worrying. Others may feel they simply cannot concentrate on anything else. It might be helpful to divide your day into different activities, for example, you could meet a friend for lunch or do one of your favourite things, such as going to the cinema or visiting a museum. This can provide a distraction from thoughts around a possible cancer diagnosis, make you feel more in control, and reduce feelings of uncertainty. Some men look for more information about prostate cancer during this time. Searching for information can help you feel more in control while you wait for your results. However, if you’re not certain of the diagnosis, some information can be confusing and upsetting. It may be more helpful to wait until a diagnosis is made before looking for more information. However, if you decide to find out more, it’s a good idea to make sure the information is from a reliable source. There are some useful websites with reliable, user-friendly information listed on pages 51–53. 19 Having tests for prostate cancer Try talking to a family member or close friend. Many people find that their fears and worries are reduced simply by telling someone else about them. ‘Offloading’ in this way can be a relief and you may find that you feel better afterwards. Some people prefer to talk to someone outside their circle of family and friends. You may find it helpful to speak to one of our cancer support specialists on 0808 808 00 00. If you struggle to sleep during this time, simple breathing and relaxation exercises may be useful in reducing anxiety, stress and any muscle tension you have. Many people find this relaxing, and experience a sense of calm when using these simple methods. Almost everyone can learn relaxation techniques; you could do this at home using a CD or podcast. 20 Your test results Your test results Once the test results are back you will have an appointment with your specialist to discuss them. Some men will be told they don’t have cancer, but their specialist might discuss any treatment needed for their symptoms. Others won’t need any treatment. Some men will be told they have cancer, which may mean they need to have some further tests (see pages 22–26). The results from these tests will help the doctors plan treatment. Other men won’t need these tests, so instead their specialist will discuss what treatment is best for them. During the appointment your doctor will outline the different treatment options, what they involve and any potential side effects. It may be helpful to take someone with you to this appointment to help you remember the discussion. You might also like to write down any questions you have. Pages 32–34 give some examples of questions you may want to ask. There’s also space for you to write down your own questions, or for you to make notes from the discussion to refer to later. Some men with prostate cancer are given a choice of two or more treatments. This is because sometimes treatments are thought to be equally effective and there is no clear benefit of having one treatment over another. In this situation, doctors offer men a choice of treatments. This is because some men with prostate cancer may have a preference over which treatment they want in terms of what the treatment involves and the possible side effects. You may find our free booklet Making treatment decisions helpful. Call 0808 808 00 00 to order a copy. 21 Having tests for prostate cancer If you are diagnosed with prostate cancer If your specialists are certain you have cancer, they may want to carry out further tests to find out more about the stage and grade of your cancer (see pages 27–28). The stage gives information about the size and extent of the cancer. The grade gives information about whether the cancer is a slow- or fast-growing type. Knowing the stage and grade of the cancer helps doctors plan the best treatment for you. Further tests Although the following tests can be used to help diagnose, stage or grade prostate cancer, you may not need to have all of them. The advantages and disadvantages of each test should be explained to you before you agree to have any of them. Your doctor will be able to tell you how and when you will get the results. The tests may include more blood tests, as well as any of the following: Isotope bone scan The bones are the most common place for prostate cancer to spread to. A bone scan can show up 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 22 If you are diagnosed with prostate cancer substance than the normal bone does, 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 children or pregnant women for a while after the scan. This is usually a requirement for 2–3 days, but the staff at the hospital will give you more information. 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. X-rays A chest x-ray and x-rays of the 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. An MRI scan may show whether the cancer has spread into the tissues around the prostate gland or into the lymph nodes near the prostate (see pages 8–9). 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. 23 Having tests for prostate cancer 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. MRI scans can also sometimes be used to help men decide whether to have a repeat biopsy. This usually happens when biopsies have been negative for cancer, but other factors, such as a high PSA level or particular symptoms, suggest that there may still be a risk of prostate cancer. The MRI scan can guide doctors to areas of the prostate that may have cancer in them so they can take biopsies more precisely. This is sometimes known as prostate mapping and is not widely available on the NHS or across the UK. You can speak to your doctor or nurse about whether prostate mapping might be helpful for you. 24 If you are diagnosed with prostate cancer 25 Having tests for prostate cancer 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. 26 Staging and grading Staging and grading Staging The stage of a cancer is a term used to describe its size and whether it has spread. There are a few different staging systems for prostate cancer. Two of the most commonly used systems are a numbered staging system and the TNM staging system. A simplified numbered staging system is described below: • Stage 1 The cancer is very small and confined within 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 is 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). • 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. Using the numbered staging system described above, stages 1 and 2 are known as early (localised) prostate cancer. Stage 3 is known as locally advanced prostate cancer, and stage 4 is known as advanced (metastatic) prostate cancer. 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 54–57. 27 Having tests for prostate cancer Grading The grade of a cancer gives an idea of how quickly it might grow. Prostate cancer is graded according to the appearance of the cancer cells when the biopsy sample is looked at under the microscope. 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 graded 1 or 2 are rare. It’s more common to get scores from 6–10. 28 Talking to healthcare staff Talking to healthcare staff Having an appointment with a doctor about cancer treatment can feel overwhelming. Many people find that after this appointment they can remember very little about what was said. Others find they have more questions once they’ve had some time to think about things. This is common and you may like to get in touch with your doctor or nurse to go over things again. Most conversations with your doctors and nurses will probably go smoothly. However, some people occasionally feel as though they’re not getting the information they need. Here are some tips for talking to healthcare staff: • Ask your doctors and nurses to use simple language and to explain medical terms. If they use words you don’t understand, ask them to explain them to you. Sometimes they may forget that you’re not as familiar with medical terms as they are. • Use your own words. Although your doctors or nurses may use medical terms, you don’t have to. It’s okay to use your own words to describe the problem. In fact, using medical terms that you only partly understand might cause problems, as the healthcare professionals may think you know more than you do. • If you’re embarrassed, say so. We all find certain medical symptoms and problems embarrassing and they’re often the kind of personal matter we don’t want to talk about with someone else. So when you do start talking about something you find embarrassing, you could say something like, ‘I’m sorry, this is a bit embarrassing to talk about, but ...’ 29 Having tests for prostate cancer 30 Talking to healthcare staff • Try to think of the most important questions you definitely want to ask before you meet with your doctor. • Write down the important points on a piece of paper that you can take with you. Every healthcare professional knows how difficult it is to understand and remember information, particularly when it’s serious and about you. Nobody will mind you writing things down or making a list of questions you want to ask beforehand. Some people are happy for you to record the discussion, so that you can listen to it later. You can also ask your medical team for a copy of any letters summarising the details of your discussion with them. • Make sure you understand what’s been said. Once your doctor or nurse has answered your questions, it’s a good idea to summarise their answers and say something like, ‘So you’re saying that ...’ or, ‘If I’ve got that right, you mean that ...’ This makes it clear what you’ve understood, and can encourage your doctor or nurse to explain things more clearly if necessary. • Ask for simple explanations. If you don’t understand what you’ve been told, it’s fine to ask the person to explain again more simply. • Remember, you’ll have other chances to ask questions. You can always make another appointment to ask your questions if you don’t cover everything in the first discussion, or if you’re given surprising news that changes the questions you wanted to ask. You may also be given a phone number for a specialist nurse you can phone if you’ve forgotten to ask a question, or if you don’t understand something. 31 Having tests for prostate cancer Asking questions Here are some suggested questions you may want to ask your healthcare team. There’s also some spare note paper on pages 34–35. 1. What tests do I need? 2. When will I get the test results? 3. Do I have prostate cancer? 4. Do I need more tests? 5. Do I need to see any other doctors? 6. What are the treatment options? 32 Asking questions 7. What are the risks and benefits of each treatment? 8. What does the treatment involve? 9. What are the side effects of treatment? 10. How will you know if the treatment has worked? 11. What are the chances of the cancer coming back? 12. If my cancer does come back, can I have more treatment? 13. Will I come back for check-ups and, if so, how frequently? 14. What can I do to help myself? 33 Having tests for prostate cancer 15. Who should I call if I need help between appointments? 16. What will happen if I decide not to have treatment? Other notes 34 Other notes 35 Having tests for prostate cancer 36 If you are a relative or friend If you are a relative or friend Some families find it difficult to talk 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 who’s having tests for cancer, or you might feel you’re letting them down if you admit to being afraid. Unfortunately, denying strong emotions like this can make it even harder to talk, and may lead to the person having these tests feeling very isolated. Partners, relatives and friends can help by listening carefully to what their loved one wants to say. Don’t rush into talking about the illness. Often it’s enough just to listen and let that person talk when they are ready. 37 Having tests for 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. 38 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. 39 Having tests for prostate cancer Professional help Support for each other Our Macmillan nurses, doctors and other healthcare 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 40 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 Macmillan Grants their relative or friend is Money worries are the last going through. 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. 41 Having tests for prostate cancer 42 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 info@bladderandbowel 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 info@orchid-cancer.org.uk 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 info@prostateaction.org.uk www.prostateaction.org.uk Funds research and education into all three prostate diseases: benign prostatic hyperplasia (BPH), prostate cancer and prostatitis. Has information about these conditions on the website. 43 Having tests for prostate cancer The Prostate Cancer Charity Cambridge House, 100 Cambridge Grove, London W6 0LE Helpline 0800 074 8383 (Mon–Fri, 10am–4pm, Wed, 7–9pm) Email info@prostate-cancer.org.uk www.prostate-cancer. org.uk Provides information and support to men with prostate cancer, and their families. A confidential helpline is available for anyone concerned or affected by prostate cancer. The Prostate Cancer Support Federation Mansion House Chambers, 22 High Street, Stockport SK1 1EG Helpline 0845 601 0766 Email info@prostatecancer federation.org.uk www.prostatecancer federation.org.uk An organisation of UK patient-led prostate cancer support groups. 44 Prostate Cancer Support Scotland Gf2, 21–23 Hill Street, Edinburgh EH2 3JP Tel 0131 226 8157 Email info@prostatescotland.org.uk 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. The Sexual Advice Association Suite 301, Emblem House, London Bridge Hospital, 27 Tooley Street, London SE1 2PR Tel 020 7486 7262 Email info@ 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 Black Care 79 Acton Lane, London NW10 8UT Tel 020 8961 4151 (Mon–Fri, 9.30am–4.30pm) Email info@cancerblackcare.org.uk www.cancerblackcare. org.uk Offers a variety of information and support for people with cancer from ethnic communities, their families, carers and friends. Welcomes people from different ethnic groups including African, Asian, Turkish and AfricanCaribbean communities. Cancer Support Scotland (Tak Tent) Flat 5, 30 Shelley Court, Gartnavel Complex, Glasgow G12 0YN Tel 0141 211 0122 Email info@ cancersupportscotland.org www.cancersupport scotland.org Offers information and support to people with cancer, families, friends, and healthcare professionals. Runs a network of support groups across Scotland. Irish Cancer Society 43–45 Northumberland Road, Dublin 4, Ireland Cancer Helpline 1800 200 700 (Mon–Thurs, 9am–7pm, Fri, 9am–5pm) Email helpline@irishcancer.ie www.cancer.ie Operates Ireland’s only freephone cancer helpline, which is staffed by nurses trained in cancer care. Maggie’s Cancer Caring Centres 8 Newton Place, Glasgow G3 7PR Tel 0300 123 1801 Email enquiries@ maggiescentres.org www.maggiescentres.org Maggie’s Centres offer free, comprehensive support for anyone affected by cancer. You can access information, benefits advice, and emotional or psychological support. 45 Having tests for prostate cancer Tenovus 9th Floor, Gleider House, Ty Glas Road, Llanishen, Cardiff CF14 5BD Freephone helpline 0808 808 1010 Tel 029 2076 8850 Email post@tenovus.com www.tenovus.org.uk Provides a variety of services to people with cancer and their families, including counselling and a freephone cancer helpline. The Ulster Cancer Foundation 40–44 Eglantine Avenue, Belfast BT9 6DX Freephone helpline 0800 783 3339 Helpline email infocis@ulstercancer.org Tel 028 9066 3281 Email info@ulstercancer.org www.ulstercancer.org Provides a variety of services for people with cancer and their families, including a free telephone helpline, which is staffed by specially trained nurses with experience in cancer care. 46 Counselling and emotional support British Association for Counselling and Psychotherapy (BACP) BACP House, 15 St John’s Business Park, Lutterworth LE17 4HB Tel 01455 883 300 Email enquiries@bacp.co.uk 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 the website. Other useful organisations 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 BEL-CustomerServices@dwp.gsi.gov.uk www.direct.gov.uk/ disabilitymoney Provides advice about benefits and can also help people complete some disabilityrelated 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 citizensadvice.org.uk Find advice for the UK online, in a variety of languages, at adviceguide.org.uk The Law Society 113 Chancery Lane, London WC2A 1PL Tel 020 7242 1222 Email info.services@ 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 lawscot@lawscot.org.uk www.lawscot.org.uk Law Society of Northern Ireland 96 Victoria Street, Belfast BT1 3GN Tel 028 9023 1614 Email info@lawsoc-ni.org www.lawsoc-ni.org Citizens Advice Scotland www.cas.org.uk 47 Having tests for prostate cancer 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) Email from the website www.nationaldebtline.co.uk A national 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 Email from the website 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. 48 Turn2Us Hythe House, 200 Shepherd’s Bush Road, London W6 7NL Helpline 0808 802 2000 (Mon–Fri, 8am–8pm) Email info@turn2us.org.uk 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 contact@unbiased.co.uk www.unbiased.co.uk Helps people search for details of local member independent financial advisers online at unbiased.co.uk Other useful organisations Support for 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 info@carersuk.org www.carersuk.org Offers information and support to carers. Can put people in contact with local support groups. Has national offices for Scotland, Wales and Northern Ireland: Carers Scotland The Cottage, 21 Pearce Street, Glasgow G51 3UT Tel 0141 445 3070 Email info@carerscotland.org www.carersuk.org/ scotland Carers Wales River House, Ynsbridge Court, Gwaelod-y-Garth, Cardiff CF15 9SS Tel 029 2081 1370 Email info@carerswales.org www.carersuk.org/wales Carers Northern Ireland 58 Howard Street, Belfast BT1 6PJ Tel 028 9043 9843 Email info@carersni.org www.carersuk.org/ northernireland Equipment and advice on living with disability Assist UK Redbank House, 1 Portland Street, Manchester M1 3BE Tel 0161 238 8776 Email general.info@assist-uk.org www.assist-uk.org An independent voluntary organisation with a network of disabled living centres throughout the UK. Centres offer advice and a range of products and equipment designed to make life easier for people who have difficulty with daily activities. 49 Having tests for prostate cancer 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. 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 information@redcross.org.uk 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. 50 Further resources Related Macmillan information We hope this booklet has helped you understand more about tests for prostate cancer. If you’ve been diagnosed with prostate cancer and need more information and support, we have the following booklets: • Making treatment decisions • Understanding early (localised) prostate cancer • Understanding locally advanced prostate cancer • Understanding advanced (metastatic) prostate cancer Your doctor or specialist nurse can advise which of these would be most useful for you. We also have information on different treatments and all aspects of living with cancer. Further resources Visit our website at macmillan.org.uk or call the Macmillan Support Line on 0808 808 00 00 for more information. 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. 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: • 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 51 Having tests for prostate cancer • a huge online community of people affected by cancer sharing their experiences, advice and support. www.healthtalkonline.org www.youthhealthtalk.org (site for young people) Both websites contain information about some cancers and have video and www.cancer.gov audio clips of people talking (National Cancer about their experiences of Institute – National Institute cancer and its treatments. of Health – USA) Gives comprehensive www.macmillan.org.uk/ information on cancer cancervoices and treatments. (Macmillan Cancer Voices) A UK-wide network that www.cancer.org enables people who have or (American Cancer Society) have had cancer, and those Nationwide community-based close to them such as family health organisation dedicated and carers, to speak out about to eliminating cancer. It aims their experience of cancer. to do this through research, education and advocacy. www.nhs.uk (NHS Choices) www.cancerhelp.org.uk NHS Choices is the online (Cancer Research UK) ‘front door’ to the NHS. It is Contains patient information the country’s biggest health on all types of cancer and website and gives all the has a clinical trials database. information you need to make decisions about your health. 52 Further resources www.nhsdirect.nhs.uk (NHS Direct Online) NHS health information 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) www.n-i.nhs.uk (Health and Social Care in Northern Ireland) www.patient.co.uk (Patient UK) Provides people in the UK with good-quality information about health and disease. Includes evidence-based information leaflets on a wide variety of medical and health topics. Also reviews and links to many health and illnessrelated websites. www.riprap.org.uk (Riprap) Developed especially for teenagers who have a parent with cancer. 53 Having tests for prostate cancer TNM staging Two of the most commonly used staging systems are a numbered staging system (see page 27) 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. 54 TNM staging 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 55 Having tests for 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 56 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 A 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. 57 Having tests for prostate cancer Disclaimer We make every effort to ensure that the information we provide is accurate but it should not be relied upon to reflect the current state of medical research, which is constantly changing. If you are concerned about your health, you should consult a doctor. Macmillan cannot accept liability for any loss or damage resulting from any inaccuracy in this information or third-party information, such as information on websites to which we link. We feature real-life stories in all of our articles. Some photographs are of models. Thanks This booklet has been 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: Professor Mark Emberton, Professor of Interventional Oncology; Debra Gray, Uro-oncology Nurse Specialist; Anne Jackson, Macmillan Urology Nurse Specialist; Professor Jonathon Waxman, Consultant Oncologist; and the people affected by cancer who reviewed this edition. Sources Cancer Research UK. www.cancerresearchuk.org (accessed July 2011). UpToDate. www.uptodate.com (accessed July 2011). Hogle W. Prostate Cancer. 2009. Oncology Nursing Society. Pagana K, Pagana T. Mosby’s Manual of Diagnostic and Lab Tests. Mosby Elsevier. Transperineal template biopsy and mapping of the prostate. October 2010. National Institute for Health and Clinical Excellence (NICE). Vlaeminck-Guillem V, et al. Urinary Prostate Cancer 3 Test: Towards the age of reason? 2010. Urology. 75: 2. National Institute for Health and Clinical Excellence (NICE). Prostate cancer: Diagnosis and treatment. www.nice.org.uk (accessed February 2008). 58 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. 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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. 1st edition. MAC13704. 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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