Surgery: radical prostatectomy

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1 1 Surgery: radical prostatectomy In this fact sheet: How does surgery treat prostate cancer? Who can have a radical prostatectomy? What are the advantages and disadvantages? What does surgery involve? Going home What are the side effects? Dealing with prostate cancer Questions to ask your doctor or nurse More information About us This fact sheet is for men who are thinking about having surgery to treat their prostate cancer. Your partner, family or friends might also find it helpful. We describe how prostate cancer can be treated by an operation to remove the prostate gland (called a radical prostatectomy) and the possible side effects. Each hospital will do things slightly differently, so use this fact sheet as a general guide. Ask your doctor or nurse for more details about your treatment and the support available to you. You can also speak to our Specialist Nurses, in confidence, on How does surgery treat prostate cancer? The aim of surgery for prostate cancer is to remove the whole prostate gland and the cancer contained inside it. The surgeon will also take out the seminal vesicles. The prostate and seminal vesicles make some of the fluid in the semen. This means you won t be able to ejaculate after surgery. Your surgeon may also remove the nearby lymph nodes if there is a risk that the cancer has spread there. Lymph nodes are part of your immune system and are found throughout your body. The lymph nodes in your pelvic area are a common place for prostate cancer to spread to. Your surgeon should discuss this with you before your operation. There are several ways of removing the prostate. The type of operation you have will depend on what is available at your hospital and what your surgeon recommends. Keyhole surgery There are two ways of doing keyhole surgery (also called laparoscopy or minimally invasive surgery). Keyhole surgery by hand your surgeon makes five or six small cuts in your abdomen (stomach area) and removes the prostate using a thin, lighted tube with a small camera on the tip and special surgical tools. Robot-assisted surgery your surgeon uses three robotic arms (one for the camera and two for the surgical tools) to perform the operation. Your surgeon controls the robotic arms from a computer. You may hear this called the Da Vinci Robot.

2 2 Robot-assisted surgery is not available in all hospitals in the UK. If your hospital doesn t have it, they may be able to refer you to one that does. Open surgery Your surgeon makes a single cut in your stomach area to reach the prostate. This is called retropubic prostatectomy. Sometimes the cut is made in the area between the testicles and back passage (the perineum). This is called perineal prostatectomy. This isn t very common and it s not used if there is a chance the cancer has spread to the lymph nodes. Who can have a radical prostatectomy? You might be offered surgery if your cancer is contained inside your prostate (localised prostate cancer), and you are generally fit and healthy. Surgery is as effective at treating localised prostate cancer as external beam radiotherapy or brachytherapy. Surgery might be an option for some men whose cancer has spread to the area just outside the prostate (locally advanced prostate cancer). This will depend on how far the cancer has spread. Read more in our Tool Kit fact sheet, Locally advanced prostate cancer. Clinical trials There are clinical trials looking at how effective surgery is for men with locally advanced prostate cancer, and you may be offered it as part of a clinical trial. A clinical trial is a type of medical research that aims to find new and improved ways of preventing, diagnosing and treating illnesses. Read more in our Tool Kit fact sheet, A guide to prostate cancer clinical trials. You can also find details of clinical trials for prostate cancer from A radical prostatectomy is a major operation and may not be suitable for you if you have other health problems, such as heart disease, as these increase the risks of surgery (see page 4). It is uncommon for men in their late 70s or older to have a radical prostatectomy, as they are more likely to have problems during and after surgery, such as leaking urine. Overweight and obese men are also at greater risk of having problems during and after surgery. If you are overweight, your doctor may advise you to lose weight before your operation. Eating a balanced diet, cutting down on fatty and sugary foods and being active will help you lose weight gradually and healthily. A healthy diet and physical activity might also help with side effects. Read more in our Tool Kit fact sheet, Diet, physical activity and prostate cancer. Other treatments for localised prostate cancer include: active surveillance watchful waiting external beam radiotherapy brachytherapy a type of internal radiotherapy. You might also be offered high intensity focused ultrasound (HIFU) or cryotherapy. These are newer than some of the other treatments for prostate cancer, so we don t know as much about how well they work and the risk of side effects in the long term. Because of this, they re only available in specialist centres in the UK or as part of a clinical trial. Read about all these treatments in our Tool Kit fact sheets. If you have had radiotherapy as your first treatment and your cancer has started to grow again, further treatment with surgery might not be possible. There are other treatments available, read more in our booklet, Recurrent prostate cancer: A guide to treatment and support.

3 3 Unsure about your diagnosis and treatment options? If you have any questions about your diagnosis at any time, ask your doctor or nurse. They will explain your test results and talk you through your treatment options. Make sure you have all the information you need. We have more information about diagnosis and treatments in our Tool Kit. You can also talk things through with our Specialist Nurses. What are the advantages and disadvantages? The advantages and disadvantages of surgery depend on your age, general health and the stage of your cancer. Your surgeon should discuss your individual situation with you. What may be an advantage for one person might not be for someone else. If you re offered surgery, speak to your doctor or nurse before deciding whether to have it they ll be able to help you decide if it s right for you. There s a list of questions on page 13 which you might find helpful. You can also ask about any other treatments that might be available. There s usually no rush to make a decision, so give yourself time to think about whether surgery is right for you. Advantages If the cancer is completely contained inside the prostate, surgery will aim to remove all of it. The prostate is removed and sent for testing which will give a clearer picture about how aggressive the cancer is and how far it may have spread (see page 8). It is easy to measure the success of your surgery, as your PSA should drop to less than 0.1 ng/ml at six to eight weeks after the operation (see page 8). If your PSA starts to rise, you may be able to have further treatment with radiotherapy or hormone therapy (see page 8). Disadvantages There are risks in having a radical prostatectomy, as with any major operation (see page 4). You will need to stay in hospital this may be for one to seven days. If the cancer has broken out of the prostate, the surgeon may not be able to remove all of it (see page 8). There is a risk of side effects such as erection and urinary problems (see page 9). You won t be able to have children naturally after surgery (see page 10). Advantages and disadvantages of the different types of surgery There isn t much evidence at the moment to show that one type of surgery is better than another. Some studies suggest you may be less likely to have erection problems with keyhole surgery (by hand or robot-assisted) than with open surgery. Some research also suggests robot-assisted surgery may be better at removing all the cancer cells than open surgery. This might mean your cancer may be less likely to come back after robot-assisted surgery than with open surgery. But we need better research. There is not yet good evidence to show that robot-assisted surgery is any better than keyhole surgery by hand. The main advantages of keyhole surgery (by hand or robot-assisted) are that you will lose less blood, have less pain, spend less time in hospital and you will heal more quickly. Robot-assisted surgery is only available in a few hospitals in the UK and doctors need specialist equipment and training to carry it out. The main advantage of open surgery is that it s available across the UK. But you re more likely to need a blood transfusion, have a longer stay in hospital and take longer to heal.

4 4 What are the risks of surgery? A radical prostatectomy is a major operation, and as with any major surgery there are some risks. These include: bleeding and the possible need for a blood transfusion injury to nearby organs such as the bowel and nerves blood clots in the lower leg that could travel to the lung wound infection side effects such as leaking urine and erection problems (see page 9). The success of the operation and risk of side effects will depend on your surgeon s experience and skill. Your surgeon should be able to give you information about how many operations they have done, how successful these were, and the rate of side effects. Research suggests that surgeons who do at least 20 radical prostatectomies each year, and ideally more than 35 a year, have better results, including lower rates of side effects. Radical prostatectomy is a major operation which can lead to some major side effects. It was the right decision for me, but it s not right for everybody. A personal experience What does surgery involve? Before the operation A few weeks before your operation you will have a check-up at the hospital this is called a pre-op assessment. You will have blood and urine tests, an electrocardiograph (ECG) to check how well your heart is working, and a physical examination. You may also have a chest X-ray or other scans. These are to make sure you re fit enough for the anaesthetic (drugs that help you sleep during the operation). Your doctor or nurse may suggest you do pelvic floor muscle exercises for a few weeks before your operation. These may help you recover more quickly from urinary problems caused by surgery (see page 9). The exercises are described in our Tool Kit fact sheet, Pelvic floor muscle exercises. If you take drugs to thin the blood such as warfarin or clopidrogel, you may need to stop taking them a week before your operation to reduce the risk of bleeding. Speak to your doctor or nurse about this. You will go into hospital either on the day or the day before your operation. An anaesthetist, who is responsible for your anaesthetic and pain relief, will explain these. You won t be able to eat for about six hours before the operation, although you may be allowed to drink up to two hours before surgery. You may be given an enema (liquid medicine) or a suppository (a pellet) to empty the bowel. These are put inside your back passage (rectum). A nurse will prepare you for your operation. They will put elasticated knee length socks or stockings on your legs. This is to reduce the chance of blood clots forming in your legs. You will keep these on until you are moving around normally again. The operation You will have a general anaesthetic so you will be asleep during the operation and won t feel anything. Keyhole surgery by hand Your surgeon will make five small cuts (about 1cm long) in your stomach area and a slightly bigger cut (about 4-6cm long) near your belly button. Your surgeon will fill your stomach area with carbon dioxide gas. They will insert a thin tube with a small camera on the tip through one of the smaller cuts so that they can see what they are doing. Your surgeon will then insert the surgical tools through the other cuts to do the operation. The prostate is taken out through the cut near your belly button. The cuts are closed with a special type of glue or stitches.

5 5 The operation takes two to three hours. You may need a blood transfusion but this is much less likely than with open surgery. Rarely, the surgeon may need to switch to open surgery. This may happen if the operation is taking longer than expected or if there is a lot of bleeding. Robot-assisted keyhole surgery The robot-assisted operation is similar to the keyhole operation done by hand but the surgeon uses three robotic arms to do it. Your surgeon controls the robotic arms through a computer. The operation usually takes two to four hours. Open surgery Your surgeon will make a single cut (about 15-20cm long) in your stomach area below your belly button to reach the prostate. Afterwards, the cut is closed with stitches or clips. The operation takes three to four hours. You may need a blood transfusion during or after your operation. Nerve-sparing surgery There are two bundles of nerves attached to the prostate which control erections. These nerves can be damaged during the operation and cause problems with getting an erection (see page 9). If possible, your surgeon will try to save these nerves. This is called nerve-sparing surgery. But, if the cancer has spread too close to the nerves, the surgeon may need to remove one or both bundles of nerves. These nerves only control erections. They don t control feeling in the penis or the surrounding area. If the nerves are damaged or removed you won t lose any feeling and you may still be able to have orgasms. After the operation You will wake up from the operation in the recovery room. You may be given fluids to drink. Let your doctor or nurse know if you feel any pain or feel sick they can give you medicine to help with this. When your doctor or nurse is happy with your progress, you will be taken back to the ward. Catheter You ll have a thin tube (called a catheter) passed through your penis into the bladder to drain urine out of the body. The catheter will probably feel strange or uncomfortable at first and you may feel like you need to urinate but this sensation usually passes after a few hours. Most men go home with the catheter and it is removed at the hospital one to three weeks after surgery. See page 6 for more information. You ll also have a thin tube in your stomach area to drain fluid from the wound. This is usually removed 24 to 48 hours after the operation. Pain You will be given pain-relieving drugs after the operation. These should control any pain you have, but tell your doctor or nurse if you are in any pain. They will find the right type and amount of pain relief for you. The drugs are usually given into a vein in your arm or hand (intravenous). You may have a pump so that you can top up your pain relief yourself if you need to. You will be shown how to use this. After keyhole surgery, you may have some pain in your shoulders for a few days. This is caused by the carbon dioxide pumped into your stomach area. The gas irritates the nerves and this can cause the pain. Your stomach may also feel bloated and this can cause some cramping and tightness. Swelling You may have some bruising and swelling around your testicles and penis. The bruising can take several weeks to clear, but if you have a lot of swelling, tell your doctor. You may find underpants more supportive and comfortable than boxer shorts. You may also have some swelling in your face but this isn t common. Eating and drinking You will normally be allowed to eat and drink as soon as you feel able to after the operation.

6 6 Getting out of bed You will be encouraged to get out of bed and start moving around as soon as you can after the operation. Moving around reduces your risk of having a blood clot. You may also need to take daily injections for up to a month after surgery to reduce the risk of blood clots. If you need injections, your nurse will teach you how to inject yourself before you go home. You will be able to go home one to seven days after the operation, depending on your recovery and your doctor s advice. At first, moving in bed is uncomfortable and sore. But this soon gets much easier. A personal experience Going home Some men worry about going home after having lots of support in the hospital but you ll have the name of someone to contact if there s a problem. A district nurse may also visit you at home during the first few weeks. Care of your catheter Before you go home, your nurse will show you how to look after your catheter. The catheter will be attached to a bag that can be worn inside your trousers, strapped to your leg. Make sure the urine drains freely into the bag. If urine is allowed to build up in the bladder, it can put pressure on the wound and the stitches. Urine infections can be common if you have a catheter. The following tips can help lower your chances of getting a urine infection. Always wash your hands before and after handling your catheter. Wash the area near the tip of your penis with a downward movement away from the tip. Use unscented soap and water, and dry the area afterwards. Drink plenty of fluids (about 1.5 to 2 litres or 3 to 4 pints a day). Your doctor or nurse should tell you how much to drink. Eat plenty of fibre to avoid constipation as this can stop the catheter draining properly. When to call your doctor or nurse You should contact your doctor or nurse as soon as possible if you have any of the following symptoms. Your bladder feels full or you notice your catheter isn t draining urine. Your catheter leaks or falls out. Your urine contains blood clots, turns cloudy, dark or red, or has a strong smell. Your wound area becomes red, swollen or painful. You have a fever (high temperature of more than 38ºC or 101ºF). You feel sick (nauseous) or vomit. You get cramps in your stomach that will not go away. You get pain or swelling in your legs. Your doctor or nurse may ask you to come into the hospital, or they may tell you to go to your nearest accident & emergency (A&E) department.

7 7 The catheter is removed at the hospital one to three weeks after the operation. This can be uncomfortable but it shouldn t be painful. Your doctor or nurse will make sure you are able to urinate before you go home. This may mean that you are at the hospital for a few hours. You may leak urine when the catheter is removed. It s a good idea to take some absorbent (incontinence) pads and a spare pair of underpants and trousers to the hospital. Close fitting underwear can help to keep the pads in place. Men often find loose trousers most comfortable. Some hospitals will provide a few absorbent pads. You can get more from the chemist or your GP. You may also be able to order them directly from the supplier without paying VAT. Read more about leaking urine after surgery in our Tool Kit fact sheet, Urinary problems after prostate cancer treatment. Surgery support pack If you decide to have surgery, our surgery support pack might be helpful. It includes information about the operation, how to manage the side effects of surgery, as well as a small supply of absorbent pads for you to try, disposable bags for used pads, and wet wipes. The pack is designed to help you prepare for surgery, and to support you in the first couple of days after your catheter is removed. If you d like to order a surgery support pack, speak to our Specialist Nurses. Your wound After keyhole surgery, the cuts are usually closed with a type of glue or stitches that slowly dissolve as the cuts heal. If you had open surgery, the cut is usually closed with stitches or clips. These are removed after one to two weeks. The scars from your operation will fade over time. The muscles and tissues inside your body also have to heal and this may take several months. You will need to take it easy for the first couple of weeks after surgery. Gentle exercise around the home and eating a healthy diet will help your recovery. Then light exercise such as a short walk every day will help improve your fitness. Avoid climbing too many stairs, lifting heavy objects or doing manual work for eight weeks after the operation. Wait until you feel ready before you try having sex. You might find it helpful to discuss this with your partner. It is fine to masturbate (see page 9 for information about having sex after surgery). Constipation You may have no bowel movements for several days after surgery, but if this carries on you may need medicine to help empty your bowels (called a laxative). Bowel habits may take a few weeks to return to normal. It s important you don t strain. Ask your doctor, nurse or GP for advice. Eating high fibre foods (such as bran and fruit), drinking plenty of fluids, and gentle physical activity will help. Read more in our Tool kit fact sheet, Diet, physical activity and prostate cancer. When they took the catheter out, I had to put a pad on straightaway because my urine was coming out like a tap. A personal experience I was constipated and passed a lot of wind. Drinking plenty of fluids and taking a regular walk helped get things moving. A personal experience

8 8 Follow-up You will have regular check-ups after your operation (called follow-up). This is an opportunity to check how well your treatment has worked and to deal with any side effects. Your check-ups will usually start between six to eight weeks after surgery. Then they could be every three to six months. After two years, you might have a check-up once a year. But your check-ups might be more often than this, so check with your doctor or nurse. PSA test You will have a PSA test a week before your check-up, so the results are available at the appointment. This is a blood test that measures the amount of prostate specific antigen (PSA) in your blood. PSA is a protein produced by cells in the prostate and also by cancer cells. PSA tests are a very effective way of checking how well your treatment has worked. After surgery, your PSA level should drop so low that it s not possible to detect it (less than 0.1 ng/ml). A rise in your PSA level can suggest some prostate cancer cells were left behind. If this happens, your doctor will talk to you about further treatment. The prostate After your prostate is removed it is sent to a laboratory to be looked at under a microscope. This can give a clearer idea of how aggressive the cancer might be and whether it has spread. Your doctor will discuss the results with you at your first check-up. You may hear your doctor talk about positive surgical margin or negative or clear margin. These mean very different things. Positive surgical margin this means an area right on the edge of the prostate contains prostate cancer cells. It suggests that some cancer cells may have been left behind. This might mean you re more likely to need further treatment. Negative or clear margin this means the cancer cells in the prostate are surrounded by a rim of normal tissue. It suggests all the cancer was removed. Read more about follow-up in our booklet, Follow-up after prostate cancer treatment: What happens next? Further treatment If your results suggest some cancer cells may have been left behind, you might be offered radiotherapy, on it s own or with hormone therapy. You may also be able to take part in a clinical trial. Read more in our booklet, Recurrent prostate cancer: A guide to treatment and support. Going back to work The amount of time you take off work will depend on how quickly you recover and how much physical effort your work involves. If you have keyhole surgery you re more likely to get back to your usual activities more quickly than after open surgery. Ask your doctor or nurse about how much time you need to take off. Driving You will be able to sit in a car as a passenger while your catheter is still in. You may want to avoid long journeys for the first two weeks after the catheter is removed, until you are more used to dealing with any problems, such as leaking urine. There are no official guidelines for how long you should wait before driving. Speak to your doctor about when it is safe for you to drive. It should not be before you feel you can do an emergency stop comfortably. Check with your insurance company how soon after surgery you are insured to drive.

9 9 What are the side effects? Like all treatments, surgery can cause side effects. These will affect each man differently, and you might not get all the possible side effects. The most common side effects of surgery are leaking urine (urinary incontinence) and problems with getting and keeping an erection. Your risk of getting these side effects depends on your overall health and age, the stage and grade of your cancer and your surgeon s skill and experience. Worries about side effects can make you feel down. Before you have surgery, talk to your doctor or nurse about the side effects. Knowing what to expect can help you deal with them. You can also call our Specialist Nurses. Urinary problems Leaking urine Most men can t control their bladder properly when their catheter is first removed. This is because surgery can damage the muscles and nerves that control when you urinate. These include the pelvic floor muscles, which stretch below the bladder and help support it. The sphincter muscle at the opening of the bladder, which normally stops urine leaking, may also be damaged. You might just leak a few drops when you exercise, cough or sneeze (called stress incontinence). Or you might leak more and need to wear absorbent pads or pants, especially in the weeks after the operation. Leaking urine usually improves with time. Most men start to see an improvement one to six months after surgery. But some men leak urine for a year or more. This can be hard to deal with, but there are things that can help. Read more in our Tool Kit fact sheet, Urinary problems after prostate cancer treatment. Watch Paul s story on our website at prostatecanceruk.org (click Personal stories ) for his experience of leaking urine after surgery. Incontinence pads are effective at keeping urine away from the skin so that it doesn t cause irritation. They provide significant reassurance. A personal experience Difficulty urinating A few men may find it difficult to urinate after surgery (urine retention). This can be caused by narrowing of the neck of the bladder or the urethra, called a stricture. This can happen soon after surgery, or it might develop slowly over time. Some men will suddenly not be able to urinate. This is called acute urinary retention. If this happens, it is very painful and needs treating straight away. Call your doctor or nurse, or go to your nearest accident and emergency (A&E) department. They may need to drain your bladder using a catheter. Make sure they know you ve had surgery for prostate cancer. Read more in our Tool Kit fact sheet, Urinary problems after prostate cancer treatment. Sexual problems Erection problems During the operation, the nerves that control erections may be damaged or removed. This may mean that you have problems getting an erection after surgery this is called erectile dysfunction. Your surgeon may try to save these nerves (nerve-sparing surgery), but this isn t always possible (see page 5). Even if your surgeon does save the nerves, you may still have problems getting an erection. How likely you are to have erection problems depends on several things such as: your age and weight the strength of your erections before surgery

10 10 other health conditions such as high blood pressure or diabetes any medicines you take whether you smoke. After surgery, most men find it difficult to get an erection strong enough for sexual intercourse and it can take anything from a few months to three years for erections to return. Erections are often not as strong as they were before surgery and some men will never be able to get an erection without the help of treatments such as a vacuum pump or drugs. There are treatments available to help with erection problems. Your doctor may prescribe tablets called PDE5 inhibitors such as: sildenafil (Viagra ) tadalafil (Cialis ) vardenafil (Levitra ). Other treatment options include a vacuum pump, injections, gels and pellets. Your doctor may suggest that you start treatments for erection problems in the first few weeks after surgery. Even if you are not ready to start any sexual activity, some research suggests that starting treatment soon after surgery may improve your chances of getting erections later on. You may hear this called penile rehabilitation. There are specialist services available to support men with erection problems. Talk to your doctor or nurse to find out more. Read more about erection problems after surgery and ways to manage them in our booklet, Prostate cancer and your sex life. The booklet includes a DVD featuring six personal stories of men dealing with changes to their sex life after treatment for prostate cancer. You can also watch these stories on our website at prostatecanceruk.org (click Personal stories ). The side effects can be managed and there is a lot of expert help out there to get you through it. You need to ask your doctor about what services are available. A personal experience Penis shortening Some men find that their penis gets shorter after surgery. Some research suggests that taking PDE5 inhibitor tablets may help to prevent the penis getting shorter, or help it return to its normal length. Using a vacuum pump, on it s own or with a PDE5 inhibitor, may also help to prevent shortening and improve erections. Dry orgasm The seminal vesicles, which make some of the fluid in the semen, are removed during the operation. This means you won t ejaculate when you have sex or masturbate. Instead you may have a dry orgasm where you feel the sensation of orgasm but don t ejaculate. This may feel different to the orgasms you re used to. Having children After your operation, you won t be able to father a child naturally. You may want to think about storing your sperm before having surgery, so that you can use it later for fertility treatment if needed. Ask your doctor or nurse about sperm storage.

11 11 If you re a gay or bisexual man To be the active partner (the top ) during anal sex you normally need a strong erection, so erection problems can be a particular issue. You could try using a constriction ring around your penis with another treatment like PDE5 inhibitor tablets or a vacuum pump, to help keep your erection hard enough for anal sex. If you re the receptive partner ( bottom ) during anal sex a lot of the pleasure comes from the penis rubbing against the prostate. Some men who are the receptive partner during anal sex find that after surgery their experience of sex changes. With all sexual changes you may be able to find ways to work through this and find new ways of giving and receiving pleasure and keeping closeness or intimacy alive. For more information read our booklet, Prostate facts for gay and bisexual men. 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 affected by 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 people who can help too. Families can also find this a difficult time and they may need support as well. This section might also be helpful for them. How can I help myself? Everyone has their own way of dealing with prostate cancer, but you may find some of the following suggestions helpful. Find out about your treatment, so you know what to expect and what your options are. Find out about the 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 such as gentle walking can improve your mood. Think about what you eat and drink. Some men find they manage better by aiming for a healthy, balanced diet. Read more in our Tool Kit fact sheet, Diet, physical activity and prostate cancer. 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 strategies in our booklet, Living with and after prostate cancer: A guide to physical, emotional and practical issues. Get more ideas about how to look after yourself from Macmillan Cancer Support and Maggie s Centres, as well as local cancer support centres. Who can help? Your medical team It could be useful to speak to your nurse, doctor 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. Our Specialist Nurses Our Specialist Nurses can answer your questions, help explain your diagnosis and go through your treatment options with you.

12 12 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 our Specialist Nurses on from our website at prostatecanceruk.org/get-support text NURSE to I found talking to Prostate Cancer UK s Specialist Nurse tremendously helpful. A personal experience 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 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. They can share their experiences and listen to yours. You could discuss treatment options, dealing with side effects, or telling people about your cancer whatever s important to you. We have volunteers who have had surgery, and our Specialist Nurses will try to match you with a trained volunteer with similar experiences. Family members can also speak to partners of men with prostate cancer. To arrange it: call our Specialist Nurses on visit our website at prostatecanceruk.org/get-support 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. It s a place to deal with prostate cancer together. Sign up on our website at prostatecanceruk.org/get-support 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. To find your nearest support group: visit our website at prostatecanceruk.org/get-support ask your nurse call our Specialist Nurses on

13 13 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 surgery do you recommend for me and why? How many of these operations have you done and how many do you do a year? Will you try to do nerve-sparing surgery if possible? How long should I expect to be in hospital? What pain relief will I get after the operation? How soon will we know whether the operation has been successful?

14 14 How often will my PSA level be checked? What is the chance of needing more treatment after surgery? What is the risk of having urinary problems and what support can you offer me? What is the risk of having erection problems and what treatment is available to help me get erections after surgery? When will I start it? Who should I contact if I have any problems? What support can you offer me if I have long-term side effects?

15 15 More information Bladder and Bowel Foundation Helpline: Information and support for all types of bladder and bowel problems. British Association of Counselling & Psychotherapy Telephone: Information about counselling and details of therapists in your area. CancerHelp UK Nurse helpline: Patient information from Cancer Research UK. Continence Product Advisor Unbiased information on products for different incontinence problems, written by health professionals. Macmillan Cancer Support Telephone: Practical, financial and emotional support for people with cancer, their family and friends. Maggie s Centres Telephone: A network of drop-in centres for cancer information and support. Includes an online support group. Sexual Advice Association Helpline: Information about treatment for sexual problems, including erection difficulties. 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: Susan Asterling, Urology Research Nurse, Sunderland Royal Hospital, Sunderland Simon F Brewster, Consultant Urologist, Churchill Hospital, Oxford Declan Cahill, Consultant Urological Surgeon, Guy s and St Thomas NHS Trust, London Ben Challacombe, Consultant Urological Surgeon and Honorary Senior Lecturer Guy s Hospital & Kings College London, London Debbie Gray, Uro-oncology CNS, Darlington Memorial Hospital, Darlington, Co Durham Bruce Turner Uro-oncology Nurse Practitioner, Homerton University Hospital NHS Foundation Trust and Bart s Health Trust, London. Prostate Cancer UK Volunteers Prostate Cancer UK Specialist Nurses

16 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/donate or text PROSTATE to 70004*. There are many other ways to support us. For more details please visit prostatecanceruk.org/get-involved *You can donate up to 10 via SMS and we will receive 100% of your donation. Texts are charged at your standard rate. For full terms and conditions and more information, please visit prostatecanceruk.org/terms Like us on Facebook: Prostate Cancer UK Follow us on Prostate Cancer UK September 2014 To be reviewed September 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 RAD/APR15