1 Prostate cancer A guide for men who ve just been diagnosed
2 2 Prostate cancer A guide for men who ve just been diagnosed About this booklet This booklet is for men who ve recently been diagnosed with prostate cancer. Your partner, family and friends might also find it useful. We explain what prostate cancer is, the tests you may have to diagnose it, and the treatment options available. You can use this booklet as your personal guide. The blue shaded areas towards the back are for you to write down any contact details and information that might be helpful to you. There s also information about support to help you deal with the impact of cancer. Each hospital will do things slightly differently, so use this booklet as a guide to what to expect. 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 The following symbols appear throughout the booklet to guide you to sources of further information: Prostate Cancer UK Specialist Nurses Prostate Cancer UK publications Sections for you to fill in Watch men tell their own stories in our online videos:
3 Specialist Nurses Contents About this booklet... 2 What is the prostate?... 5 What is prostate cancer?... 6 How is prostate cancer diagnosed?...8 What do my test results mean?...11 What are my treatment options?...17 Choosing a treatment...19 Dealing with prostate cancer...31 List of medical words...37 More information from us...46 Other useful organisations About Prostate Cancer UK...50 Sections for you to fill in What are my test results? Who are my team members? Appointment diary... 44
4 4 Prostate cancer A guide for men who ve just been diagnosed What is the prostate? Only men have a prostate. The prostate is usually the size and shape of a walnut. It sits underneath the bladder and surrounds the urethra, which is the tube men urinate (pee) and ejaculate through. The prostate is a gland. Its main job is to make some of the semen the fluid that carries sperm. bladder urethra penis prostate gland testicle
5 Specialist Nurses
6 6 Prostate cancer A guide for men who ve just been diagnosed What is prostate cancer? Normally the growth of all cells is carefully controlled in the body. As cells die, they are replaced in an orderly fashion. Cancer can develop when cells start to grow in an uncontrolled way. If this happens in the prostate, then prostate cancer can develop. Normal cells Cancer cells growing in an uncontrolled way Prostate cancer is the most common cancer in men in the UK. Prostate cancer can grow slowly or very quickly. Most prostate cancer is slow-growing to start with and may never cause any symptoms or problems in a man s lifetime. But some men will have cancer that s more aggressive or high risk, which means it s more likely to spread and cause problems. This needs treatment to help prevent or delay it spreading outside the prostate.
7 Specialist Nurses Some men may have symptoms, such as problems going for a pee (urinating). For others, the first noticeable symptoms are from prostate cancer which has spread to their bones. If this happens, you might notice pain in your back, hips or pelvis, that wasn t there before. In the UK, about 1 in 8 men will get prostate cancer at some point in their lives. The following things might mean you re more likely to get prostate cancer. Age prostate cancer mainly affects men over the age of 50, and your risk increases with age. Family history you are two and a half times more likely to get prostate cancer if your father or brother has been diagnosed with it, compared with a man who has no relatives with prostate cancer. There is a higher chance of developing it if your relative was under 60 when he was diagnosed, or if you have more than one close relative with prostate cancer. Ethnicity Black men are more likely to get prostate cancer than men of other ethnic backgrounds. In the UK, about 1 in 4 Black men will get prostate cancer at some point in their lives. Lifestyle no one knows how to prevent prostate cancer, but a healthy diet and lifestyle may be important in protecting against it. For more information about your risk of prostate cancer, read our booklet, Know your prostate: A guide to common prostate problems.
8 8 Prostate cancer A guide for men who ve just been diagnosed How is prostate cancer diagnosed? Prostate cancer is diagnosed using a number of tests, which we describe on the following pages. You might have already had some of these, but you may need further tests to find out whether the cancer has spread and how aggressive it is. You may not need to have all of the tests described here, and you might not have them in this order. Read more about these tests in our Tool Kit fact sheet, How prostate cancer is diagnosed. PSA test The PSA test is a blood test that measures the amount of prostate specific antigen (PSA) in your blood. PSA is a protein produced by normal cells in the prostate and also by prostate cancer cells. It s normal for all men to have a small amount of PSA in their blood. A raised PSA may show that you have a problem with your prostate, but not necessarily cancer (see page 11). Read more in our booklet, Understanding the PSA test: A guide for men concerned about prostate cancer. Digital rectal examination (DRE) This is where the doctor feels your prostate through the wall of the back passage (rectum). They ll wear gloves and put some gel onto their finger to make it more comfortable. They ll feel your prostate for any hard or irregular areas and to get an idea of its size.
9 Specialist Nurses Prostate biopsy A prostate biopsy involves using thin needles to take small samples of tissue from the prostate to see if there is any prostate cancer. The doctor will put an ultrasound probe into your back passage, using a gel to make it more comfortable. The ultrasound probe scans the prostate and an image appears on a screen. A needle is then inserted through the wall of the back passage into the prostate, using the ultrasound image as a guide. Sometimes the biopsy is done by inserting the needles through the skin between the testicles and the back passage (perineum). The biopsy samples will be looked at under a microscope to check for any cancer cells. Your doctor will be sent a report, called a pathology report, with the results. The results will show: whether any cancer was found how many biopsy samples contained cancer how much cancer is present in each sample. You might be sent a copy of the pathology report. If you have trouble understanding any of it, ask your doctor to explain it. Or call our Specialist Nurses.
10 10 Prostate cancer A guide for men who ve just been diagnosed You may have the following tests to find out whether the cancer has spread outside the prostate. MRI scan MRI (magnetic resonance imaging) uses magnets to create a detailed picture of your prostate and the surrounding tissues, to see whether the cancer has spread. An MRI scan is often the first type of scan used as it s the most accurate way of looking at the prostate. CT scan A CT (computerised tomography) scan can also show whether the cancer has spread beyond the prostate, for instance to the lymph nodes. Lymph nodes are part of your immune system and are found throughout your body. Bone scan A bone scan can show whether any cancer cells have spread to the bone. A small amount of a safe radioactive dye is injected into a vein in your arm, and you ll have the scan two to three hours later. If there is any cancer in the bones, the dye will collect in these areas and show up on the scan.
11 Specialist Nurses What do my test results mean? Your doctor will use the results of all the tests you ve had to find out if the cancer has spread and if it s growing and how quickly. Ask your doctor to explain your test results if you don t understand them. PSA level The PSA test alone can t tell you whether you have prostate cancer. A raised PSA may show that you have a problem with your prostate, but not necessarily cancer. This is because a number of things can cause your PSA level to rise including age and an enlarged prostate as well as prostate cancer. Your PSA level rises as you get older and the prostate gets bigger. The following figures are a very rough guide to normal PSA levels, depending on your age: up to 3ng/ml for men in their 50s up to 4ng/ml for men in their 60s up to 5ng/ml for men in their 70s and over. Some men with a normal PSA level can have prostate cancer. A very high PSA level (for example, in the hundreds or thousands) normally means that a man has prostate cancer. The PSA test is also a good way of monitoring your prostate cancer after you ve been diagnosed or had treatment. You will have regular PSA tests as part of your care, and they can be used alongside other test results.
12 12 Prostate cancer A guide for men who ve just been diagnosed Gleason grade and Gleason score You may hear your doctor talk about your Gleason grade and your Gleason score when they ve looked at your biopsy results. Gleason grade If there are prostate cancer cells in your biopsy samples, they are given a Gleason grade. This grade 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 looked at 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 grade 1 and 2 are not cancer. Gleason score There may be more than one grade of cancer in the biopsy samples. 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 the most common and the highest grade are added together, the total is called the Gleason score. Gleason score = the most common grade + the highest other grade in the samples
13 Specialist Nurses 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). Because grade 1 and 2 are not cancer, the combined Gleason score is normally 6 or higher. So your Gleason score will normally only be between 6 (3+3) and 10 (5+5). Some men will only be told their total Gleason score and not given their Gleason grades. What does the Gleason score mean? The higher the Gleason score, the more aggressive the cancer, and the more likely it is to spread. A Gleason score of 6 usually 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.
14 14 Prostate cancer A guide for men who ve just been diagnosed Staging Staging is a way of recording how far the cancer has spread. The most common method is the TNM (Tumour-Nodes- Metastases) system. T stage (tumour) The T stage shows how far the cancer has spread in and around the prostate. This is measured with a DRE (see page 8). You might also have an MRI scan to confirm your T stage. seminal vesicle bladder T1 The cancer can t be felt or seen on scans, and can only be seen under a microscope localised prostate cancer. prostate gland T1 prostate cancer seminal vesicle bladder T2 The cancer can be felt or seen on scans but it is contained within the prostate localised prostate cancer. prostate gland T2 prostate cancer
15 Specialist Nurses bladder T3 The cancer can be felt or seen breaking through the capsule of the prostate locally advanced prostate cancer. seminal vesicle prostate gland T3a prostate cancer T3a The cancer has broken through the capsule of the prostate but has not spread to the seminal vesicles (which produce some of the fluid in semen). T3b The cancer has spread to the seminal vesicles. seminal vesicle prostate gland bladder bladder neck T4 prostate cancer T4 The cancer has spread to nearby organs, such as the neck of the bladder, back passage, pelvic wall or lymph nodes locally advanced prostate cancer.
16 16 Prostate cancer A guide for men who ve just been diagnosed N stage (node) The N stage shows whether the cancer has spread to the nearby lymph nodes. Lymph nodes are part of your immune system and are found throughout your body. The lymph nodes in your groin are near the prostate and are a common place for prostate cancer to spread to. The N stage is measured using an MRI or CT scan (see page 10). This stage will only be measured if the result is likely to affect your treatment options. NX The lymph nodes were not measured. N0 No cancer cells can be seen in the lymph nodes. N1 The lymph nodes contain cancer cells. M stage (metastases) The M stage shows whether the cancer has spread (metastasised) to other parts of the body, such as the bones. This is measured using a bone scan (see page 10). Cancer that has spread to other parts of your body is called advanced prostate cancer. This stage might not be measured if the result is unlikely to affect your treatment options. MX The spread of the cancer was not measured. M0 The cancer has not spread to other parts of the body. M1 The cancer has spread to other parts of the body. Read more about how the stage of prostate cancer is measured in our Tool Kit fact sheet, How prostate cancer is diagnosed. You can record your test results on page 39.
17 Specialist Nurses What are my treatment options? Your doctor will look at all your test results to get an overall idea of how far the cancer has spread (its stage) and how quickly it may be growing. This will help you and your doctor to discuss the best possible treatments. There are different treatment options for each stage of prostate cancer. If you have localised cancer, treatments are aimed at getting rid of it completely. And even with more advanced cancer which has spread, treatments can keep it under control, sometimes for several years. Read more about treatment options on page 21. Stages of prostate cancer Localised prostate cancer Localised prostate cancer is cancer that s contained within the prostate. You may also hear it called early prostate cancer. Many localised cancers are not aggressive and grow too slowly to cause any problems in your lifetime. But, some may grow more quickly and spread to other parts of the body. There are a number of treatments for localised prostate cancer, and there is no best treatment each one has its own pros and cons. Thinking about these will help you decide which treatment is best for you. Read more in our Tool Kit fact sheet, Localised prostate cancer.
18 18 Prostate cancer A guide for men who ve just been diagnosed Locally advanced prostate cancer Locally advanced prostate cancer is cancer that s starting to break out of the prostate, or has spread to the area just outside it. It can spread to the seminal vesicles, the neck of the bladder, back passage, pelvic wall or lymph nodes in the groin. Your treatment options will depend on how far the cancer has spread. Read more in our Tool Kit fact sheet, Locally advanced prostate cancer. Advanced prostate cancer Advanced prostate cancer is cancer that has spread from the prostate to other parts of the body. It s also called metastatic prostate cancer. Prostate cancer can spread to any part of the body, but it most commonly spreads to the bones and lymph nodes. Advanced prostate cancer can cause symptoms such as bone pain and problems urinating. There are treatments available to help manage these symptoms. It s not possible to cure advanced prostate cancer, but treatments can keep it under control, sometimes for several years. Read more in our Tool Kit fact sheet, Advanced prostate cancer.
19 Specialist Nurses Choosing a treatment Your doctor or nurse will talk you through your treatment options so that you have the information you need to choose the right treatment for you. On the next few pages you ll find a summary of the different treatment options. Some of the treatments listed here might not be suitable for you, so ask your doctor or nurse to mark the treatments that are suitable. Read more about all these treatments and their pros and cons in our Tool Kit fact sheets. You can download or order them from our website at /publications or call our Specialist Nurses. What will affect my treatment choice? Which treatment you choose may depend on several things, including: how far the cancer has spread (its stage), and how quickly it may be growing your age and general health for example, if you have any other health problems such as heart disease what each treatment involves the possible side effects of each treatment the pros and cons of each treatment, including practical things like how often you would need to go to hospital, or how far away your nearest hospital is your own thoughts and feelings about different treatments for example some men prefer to have their prostate removed, while others don t like the idea of surgery how the treatment you choose now would affect your treatment options later if your cancer comes back or spreads.
20 20 Prostate cancer A guide for men who ve just been diagnosed Each treatment has side effects. These will affect each man differently, and you might not get all the possible side effects. It s important that you think about the side effects and how you would cope with them when deciding on a treatment. We ve included some information about side effects here. You can find more detailed information in our Tool Kit fact sheets. The first treatment you have may affect which treatments you can have in the future, if you need further treatment. For example, surgery is usually not an option if you ve already had radiotherapy. Read more about this for each treatment below and speak to your doctor or nurse about this. The different treatment options can be a lot to take in, especially when you ve just been diagnosed with prostate cancer. Make sure you have all the information you need, and give yourself time to think about which treatment is right for you. Your doctor or nurse will be able to help you weigh up the pros and cons. It can be a good idea to write down any questions you might want to ask at your next appointment. And you might find it useful to have someone with you at the appointment, or to make notes to help you remember what was said. What are my treatment options? The following information describes treatments for men who have just been diagnosed with prostate cancer. Men who ve had prostate cancer for some time may have different treatments and combinations of treatment. Speak to your doctor or nurse about what treatments are suitable for you. Watch men share their stories about treatments.
21 Specialist Nurses Treatment options Localised prostate cancer Surgery (radical prostatectomy) External beam radiotherapy (EBRT) Brachytherapy (either permanent seed or temporary) Active surveillance Watchful waiting High intensity focused ultrasound (in specialist centres or as part of a clinical trial) Cryotherapy (in specialist centres or as part of a clinical trial) Locally advanced prostate cancer External beam radiotherapy with hormone therapy (and sometimes with temporary brachytherapy) Hormone therapy Watchful waiting Less commonly, surgery (radical prostatectomy) with hormone therapy and/or external beam radiotherapy Advanced prostate cancer Hormone therapy Chemotherapy Pain-relieving drugs to treat pain Radiotherapy to treat symptoms Bisphosphonates to treat bone pain
22 22 Prostate cancer A guide for men who ve just been diagnosed Surgery (radical prostatectomy) This is an operation to remove the prostate and the cancer inside it. There are several types of operation: open surgery keyhole (laparoscopic) surgery robot-assisted laparoscopic surgery. Surgery is usually only suitable for men with localised prostate cancer. In men with more aggressive cancer (with higher Gleason score), the lymph nodes around the prostate are also often removed. Surgery may also be an option for some men with locally advanced prostate cancer. This can only be used in some situations as it might not be possible to remove all the cancer cells that have spread outside the prostate. In this situation, further treatment, such as radiotherapy, may also be needed afterwards. You might be offered surgery for locally advanced prostate cancer as part of a clinical trial. After surgery, if your cancer spreads outside the prostate or comes back, you will be offered a course of radiotherapy or hormone therapy. Some men have side effects after surgery. The most common side effects are leaking urine, and difficulty getting and keeping an erection (erectile dysfunction). Side effects may improve over time, and there are treatments available to help manage them. The prostate and seminal vesicles are removed during the operation. This means that you won t be able to ejaculate any semen even if you can get an erection so you will be infertile and won t be able to have children.
23 Specialist Nurses If you re planning on having children, you may be able to store your sperm before the operation for use in IVF (in vitro fertilisation). Read more about surgery, including the side effects, in our Tool Kit fact sheet, Surgery: radical prostatectomy. External beam radiotherapy (EBRT) This treatment uses high energy X-ray beams to destroy the cancer cells from outside the body. EBRT is suitable for men with localised prostate cancer, who will often have it with hormone therapy. It s also suitable for men with locally advanced prostate cancer, and is used with hormone therapy. If you have EBRT as a first treatment for prostate cancer and your cancer comes back or spreads, you may be offered high intensity focused ultrasound (HIFU), cryotherapy or hormone therapy. Surgery is rarely an option because radiotherapy changes the prostate tissue and makes it very hard for the surgeon to remove the prostate. Some men have side effects from EBRT these include problems urinating, bowel problems such as loose or watery bowel movements (diarrhoea), problems getting and keeping an erection, and tiredness (fatigue). Side effects can develop during treatment and get better with time. But for some men they can be long-term and may develop several months or years after having radiotherapy. There are treatments available to help manage side effects. Read more about EBRT, including the side effects, in our Tool Kit fact sheet, External beam radiotherapy.
24 24 Prostate cancer A guide for men who ve just been diagnosed Brachytherapy This treatment involves putting radioactive seeds or pellets into the prostate to kill the cancer cells. There are two types of brachytherapy permanent seed brachytherapy and temporary brachytherapy. Permanent seed brachytherapy, also called low dose-rate brachytherapy, involves implanting tiny radioactive seeds into the prostate. This is an option for men with localised prostate cancer. Temporary brachytherapy, also called high dose-rate brachytherapy, is where radioactive pellets are passed into the prostate for a few minutes at a time before being removed. This treatment is less common and can be used to treat localised prostate cancer, and sometimes locally advanced prostate cancer. Brachytherapy can be used together with EBRT to give higher doses of radiation to the whole gland, as well as the area just outside it. You might have hormone therapy to shrink the prostate for a few months before starting brachytherapy. If you have brachytherapy as a first treatment for prostate cancer and your cancer comes back or spreads, you may be offered cryotherapy or hormone therapy. However, you are unlikely to be able to have high intensity focused ultrasound (HIFU) or surgery. Some men may have side effects after brachytherapy including problems urinating, problems getting and keeping an erection, and tiredness (fatigue). Men who have permanent seed brachytherapy may also get bowel problems, although these tend to be mild. Problems urinating usually start to improve after a few months. Erection problems may not happen straight after treatment but can develop over several years. There are treatments available to help manage these side effects.
25 Specialist Nurses Read more about brachytherapy, including the side effects, in our Tool Kit fact sheets, Permanent seed brachytherapy and Temporary brachytherapy. Active surveillance Active surveillance is a way of monitoring slow-growing prostate cancer. The aim is to avoid or delay unnecessary treatment in men with low risk localised prostate cancer and so avoid or delay the side effects that can be caused by treatment. Active surveillance involves monitoring your cancer with regular tests, rather than treating it straight away. The tests aim to find any changes that suggest the cancer is growing. If the tests show that your cancer might be growing, you will be offered treatment with surgery (radical prostatectomy), radiotherapy or brachytherapy, with the aim of getting rid of the cancer completely. Read more in our Tool Kit fact sheet, Active surveillance. Watchful waiting Watchful waiting is a different way of monitoring prostate cancer that isn t causing any symptoms or problems. The aim is to keep an eye on the cancer over the long term. You will only start treatment if you get symptoms, such as problems urinating or bone pain. You will then be offered hormone therapy (see page 26) to manage these symptoms. Watchful waiting involves having fewer tests than active surveillance.
26 26 Prostate cancer A guide for men who ve just been diagnosed It s generally suitable for men who have other health problems and may not be fit enough for treatments such as surgery or radiotherapy. It might also be suitable if your prostate cancer isn t likely to cause problems during your lifetime, or shorten your life. Read more in our Tool Kit fact sheet, Watchful waiting. If you re offered active surveillance or watchful waiting, make sure you re clear which one your doctor is talking about. They are quite different approaches to treatment. These terms aren t always used in the same way, and some doctors use different terms such as active monitoring and wait and see. Ask your doctor to explain exactly what they mean. Hormone therapy Prostate cancer needs the male hormone testosterone to grow. Hormone therapy works by stopping testosterone from reaching prostate cancer cells. It will treat all prostate cancer cells, wherever they are in the body. Hormone therapy won t cure prostate cancer, but it can keep the cancer under control, sometimes for several years. Hormone therapy is often used with EBRT for localised prostate cancer. It can also be used with EBRT for locally advanced prostate cancer. It s the standard treatment for advanced prostate cancer. 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.
27 Specialist Nurses The side effects of hormone therapy are caused by lowered testosterone levels. They can include: hot flushes loss of sex drive and problems getting and keeping an erection tiredness (fatigue) swelling and tenderness in the breast area (gynaecomastia) weight gain. The chances of getting each side effect depend on which type of hormone therapy you re having and how long you have it for. There are ways to manage them. Read more about hormone therapy, including the side effects, in our Tool Kit fact sheet, Hormone therapy, and our booklet, Living with hormone therapy: A guide for men with prostate cancer. High intensity focused ultrasound (HIFU) HIFU uses ultrasound to heat and destroy cancer cells in the prostate. HIFU is newer than some of the other treatments for prostate cancer, so we don t know as much about how well it works and the risk of side effects in the long term. Because of this, it s only available in specialist centres in the UK or as part of a clinical trial. HIFU might be a suitable option if you have localised prostate cancer. It can also be used to treat cancer that has started to grow again after radiotherapy. If you have HIFU as a first treatment for prostate cancer and your cancer comes back or spreads, you may be offered more HIFU, EBRT, cryotherapy or hormone therapy. However, you re unlikely to be able to have surgery.
28 28 Prostate cancer A guide for men who ve just been diagnosed You might have side effects after HIFU including problems urinating and difficulty getting and keeping an erection. Some men get a burning sensation or bleeding from the back passage. There are treatments available to help manage these side effects. Read more about HIFU, including the side effects, in our Tool Kit fact sheet, High intensity focused ultrasound (HIFU). Cryotherapy Cryotherapy uses freezing and thawing to destroy the prostate cancer cells. It s newer than some of the other treatments for prostate cancer, so we don t know as much about how well it works and the risk of side effects in the long term. Because of this, it s only available in specialist centres in the UK or as part of a clinical trial. Cryotherapy can be used to treat localised prostate cancer, and occasionally locally advanced prostate cancer. However, it s more often used to treat men whose cancer has come back after treatment with radiotherapy or brachytherapy. If your cancer comes back or spreads after cryotherapy, you may be offered more cryotherapy, EBRT, or hormone therapy. However, you re unlikely to be offered surgery. Some men have side effects after cryotherapy. The most common side effect is problems getting and keeping an erection. Some men also get urinary problems after cryotherapy. These side effects may improve over time, and there are ways to manage them. Read more about cryotherapy, including the side effects, in our Tool Kit fact sheet, Cryotherapy.
1 Urinary problems after prostate cancer treatment In this fact sheet: Prostate cancer treatment and urinary problems Problems after surgery (radical prostatectomy) Problems after radiotherapy or brachytherapy
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