2 2 Prostate cancer and your sex life About this booklet This booklet is for men who want to know how prostate cancer and its treatment can affect your sex life, how you feel about yourself and any relationships you have. It takes you through the sexual side effects you may experience and the treatment and support that is available. This booklet is for all men with prostate cancer, whether you are single or in a relationship. We hope it will be useful for you whether you are heterosexual, gay, bisexual or transgender. If you are a partner of a man with prostate cancer you may also find this booklet useful. We have listed sources of information and support at the end of this booklet. Each hospital will do things slightly differently so use this booklet as a general guide and ask your doctor or nurse for more details about the care you will receive. You can also speak to our Specialist Nurses by calling our confidential helpline. The following symbols appear throughout the booklet to guide you to sources of further information: Prostate Cancer UK Specialist Nurse helpline Prostate Cancer UK publications If you would like to know more about anything you read in this booklet, you can call our Specialist Nurses on our confidential helpline. The quotes with the photos are not the words of the people who appear.
3 Specialist Nurses prostatecanceruk.org 3 Personal stories At the back of this booklet is a DVD featuring six personal stories of men dealing with changes to their sex life during and after treatment for prostate cancer. The stories include men talking about their experiences of sexual problems after surgery, radiotherapy and during hormone therapy. The men have tried a variety of treatments for erection problems like injections, vacuum pumps and pellets. They all have different ways of dealing with the impact of these changes on their lives and relationships. This symbol appears throughout the booklet to guide you to different men s stories on the DVD. The photos in this booklet are of people personally affected by prostate cancer. The quotes with the photos are not the words of the people who appear.
4 4 Prostate cancer and your sex life
5 Specialist Nurses prostatecanceruk.org 5 Contents About this booklet How will prostate cancer affect my sex life? Focus on what to expect at an ED clinic Problems getting an erection Focus on keeping your penis active after surgery Treatments for erection problems Your desire for sex (libido) Changes in penis size Changes to ejaculation and orgasm Fertility Your thoughts and feelings Sex and your relationships Focus on sex therapy Gay and bisexual men Sex when you re single Support for partners More information from us Other useful organisations About Prostate Cancer UK Prostate cancer and my sex life: Personal stories DVD
7 Specialist Nurses prostatecanceruk.org 7 How will prostate cancer affect my sex life? Sex is an important part of life for most of us. Dealing with a diagnosis of prostate cancer and living with the side effects of treatment can have an impact on your sex life. Many men with prostate cancer say that changes to their sex lives and relationships are some of the biggest issues they have to deal with. Feeling sexual depends on how well your sexual organs, like your penis, are working. And whether other parts of the body are helping them work this includes your blood supply, nerves, brain and hormones. The way your body responds sexually also depends on your thoughts and feelings about yourself and others. You don t think you re ever going to have an erection again, you don t think you re going to be a man again really. That s the thing that worries you about the erectile side of it. However, when you get these injections and you stand there and you think it works without being crude, it s a fantastic feeling. A personal experience
8 8 Prostate cancer and your sex life Prostate cancer can affect your sex life in three overlapping ways your mind, body and relationships. Body Treatment can damage the nerves and blood vessels needed for erections. Hormone therapy reduces testosterone levels, which can affect your desire for sex. Relationships Coping with cancer can change the dynamics of your close relationships, or your thoughts about starting one. Mind The diagnosis of cancer can make you feel down or anxious, changing your feelings about sex.
9 Specialist Nurses prostatecanceruk.org 9 Having treatment for prostate cancer can affect: how you feel about yourself sexually your desire to have sex (libido) your ability to get an erection (erectile function) your ability to ejaculate and have an orgasm your sexual satisfaction your fertility the appearance of your body your relationships. But there are treatments and support that can provide some answers and ways for you to work through any problems. Penetrative sex and masturbation Many men want to know is there sex after prostate cancer treatment? Whether you can have sex or masturbate after treatment will depend on a number of things, including what type of treatment you have had, how you are feeling, and whether you already have sexual problems. This varies from man to man some men will have temporary problems with their erections, while others may never totally get back their erections without the help of treatment. Many men with prostate cancer will have sexual problems before treatment. It is normal for our sex lives to slow down as we get older and problems with erections are more common in older men. But that doesn t mean you have to put up with them. The following table is a basic guide to the type of problems you may have. For more detailed information about these treatments and their effect on sex and masturbation read our Tool Kit fact sheets.
10 Your treatment When can I have sex or masturbate? Surgery (radical prostatectomy) Surgery to remove the whole prostate gland and seminal vesicles Avoid having sex for the first six to eight weeks after open surgery Masturbation and night time erections are safe during this time With keyhole surgery you can have sex if you feel like it once your catheter is removed Radiotherapy (external beam radiotherapy) Radiotherapy using high energy X-ray beams directed at the prostate gland from outside the body As soon as you feel like it, some doctors recommend using contraception for a while after treatment find out more on page 45 If you receive anal sex wait until any bowel problems or sensitivity in this area has gone What problems might I experience? Erection problems this varies depending on whether the surgeon can spare the nerves that control erections Erections can gradually improve but not all men regain erections Your penis may become shorter No ejaculation, but you can still orgasm (dry orgasm) Infertility Erection problems can gradually develop after treatment Produce less or no semen Painful ejaculation Fertility problems
11 Your treatment When can I have sex or masturbate? Brachytherapy A type of internal radiotherapy for treating localised prostate cancer using radioactive seeds As soon as you feel like it It is rare for men to pass any implanted seeds when they ejaculate but, as a precaution, you should use a condom during sex for the first two months after treatment See page 45 for information about changes to sperm and fertility Temporary brachytherapy (also know as high dose rate brachytherapy) Internal radiotherapy is inserted into the prostate gland for a few minutes at a time No radioactive material is left in the prostate so it is safe to have sex when you feel like it See page 45 for information about changes to sperm and fertility What problems might I experience? Erection problems Ejaculating less semen Fertility problems Erection problems may gradually get worse over several years Less fluid in ejaculation or no ejaculation (can still orgasm) Fertility problems
12 Your treatment When can I have sex or masturbate? High intensity focused ultrasound (HIFU) A treatment that uses high frequency ultrasound waves to heat and destroy cancer cells You can have sex or masturbate if you feel like it once the catheter is removed Cryotherapy A treatment that uses freezing and thawing to kill the cancer cells in the prostate gland You can have sex or masturbate if you feel like it once the catheter is removed What problems might I experience? Erection problems Ejaculate less semen (can still orgasm) Fertility problems Erection problems
13 Your treatment When can I have sex or masturbate? Hormone therapy Hormone therapy controls prostate cancer by stopping testosterone reaching the prostate cancer cells. It can be given by injection, implants or tablets. Some men have surgery to remove part or all of the testicles (orchidectomy) You can have sex or masturbate whilst on hormone therapy injections or tablets After orchidectomy avoid strenuous sex for two weeks See page 39 for more information about hormone therapy and sexual function What problems might I experience? Erection problems Reduced desire for sex Changes to penis shape and size Changes to orgasm Other changes to your body weight gain, breast swelling and tenderness, hot flushes
14 14 Prostate cancer and your sex life Some common worries It is not possible to pass on cancer through sex. Having sex will not affect your prostate cancer or the success of your treatment. Erections are still safe if you have a catheter in. Getting treatment and support There are treatments and support available for sexual problems. Speak to your GP or doctor or nurse at the hospital to find out more. They can refer you to a specialist service such as an erectile dysfunction (ED) clinic. Men with prostate cancer can get free medical treatment for problems with erections or other sexual problems on the NHS. Your GP or doctor or nurse at the hospital can prescribe treatment if you want help getting erections for masturbation or sex. There is no age limit for receiving treatment but there may be a limit on how much your GP can prescribe. If you are receiving treatment from your GP and you would like treatment more regularly or treatment has not worked, go back and let your GP know. They may review your treatment or refer you to a specialist.
15 Specialist Nurses prostatecanceruk.org 15 Talking about sex It can be tricky talking about sex, but talking to your doctor or nurse will mean you can get treatment and support, and can make you feel better and more in control. The doctor or nurse treating you for prostate cancer should let you know about the side effects of treatment, including the impact on your sex life. They should ask you about your erections and sex life before, during and after treatment for prostate cancer. But, if they do not raise the subject of sex you can do this yourself, especially if you are having any sexual problems, worries or questions.
16 16 Prostate cancer and your sex life Questions to ask your doctor or nurse: How could my treatment for prostate cancer affect my sex life? How soon after prostate cancer treatment can I masturbate or have sex again? What are the treatments for erection problems and which will be best for me? What happens if the treatment does not work? Are there other treatments I can have? What treatments can I get from my local NHS?
17 Specialist Nurses prostatecanceruk.org 17 What other support is available to me? Can my partner also get support? Add your own questions here:
18 18 Prostate cancer and your sex life Focus on what to expect at an ED clinic If you have been referred to see an ED (erectile dysfunction) clinic or specialist you might see one or all of the health professionals listed on the next page. The health professionals you see will be familiar with talking about sexual problems and should put you at ease. What happens at the appointment will vary, but you will normally have a chat about your sexual function, your concerns and any other issues such as how you are feeling generally. If you have a partner, you can ask them to go with you to the appointment. The doctor or nurse may check your penis and testicles. This will be done in a private room or curtained area. You may have your blood pressure and heart rate checked, if you haven t had them measured in the past three to six months. If you have problems getting an erection, you will be able to find out more about the available treatments. The doctor or nurse may also give you a test dose of one of the treatments (see page 27 for more information) to see whether it works. Again, this will be done in a private room or curtained area.
19 Specialist Nurses prostatecanceruk.org 19 What health professionals might I see? Urologist A doctor who specialises in the urinary and reproductive systems. Urologists are also surgeons. Clinical nurse specialist (urology) A nurse who has specialist knowledge of diagnosing and treating people with prostate or bladder problems. They may also have specialist knowledge of diagnosing and treating people with erection or sexual difficulties. As well as medical treatment they can also often offer information, advice and support. Andrologist Andrologists are doctors who deal with the male reproductive system, including fertility and problems with the penis, testicles or hormones. Sex therapist Sex (or psychosexual) therapists or counsellors usually have a background in medicine, nursing or psychological therapy. They will also have had special training in the causes and treatment of sexual problems. They offer counselling and advice about sexual issues. See page 57 for more information.
20 Dealing with erection problems calls for a willingness to keep an open mind, patience and some resourcefulness. But the positive results make that so very worthwhile. A personal experience
21 Specialist Nurses prostatecanceruk.org 21 Problems getting an erection You may hear this called erectile dysfunction (ED) or impotence. This means having difficulty getting or keeping an erection, and is more likely to happen as men get older. It can have many possible causes, including treatment for prostate cancer. For detailed information on the risks of erection problems after each type of prostate cancer treatment, read our Tool Kit fact sheets. Causes of erection problems When you are sexually aroused your brain sends signals to the nerves in your penis. The nerves increase the blood flow to your penis, and fill the spongy tissues, making it stiff and giving you an erection. Anything that interferes with your nerves, blood supply, or your sexual desire (libido) can make it difficult to get or keep an erection. Treatment for prostate cancer Some treatments for prostate cancer can damage the nerves and blood vessels that are needed for an erection. Treatments that can have this effect include surgery, external beam radiotherapy, brachytherapy, high intensity focused ultrasound (HIFU) and cryotherapy. All types of hormone therapy can cause erection problems because hormone therapy can reduce your desire for sex. Other health problems Other health problems can affect your erections, including high blood pressure, diabetes, heart disease, high cholesterol, neurological conditions, other prostate problems and penis problems.
22 22 Prostate cancer and your sex life Hormone problems like low testosterone can also cause problems with erections and desire. Older men may have problems with erections or reduced desire for sex because of low testosterone levels in their body. See page 37. Other medicines A number of medicines are linked to erection problems. These include medicines for high blood pressure, high cholesterol levels, depression and anxiety, ulcers, irregular heart beat and epilepsy. If you are taking any of these drugs, do not stop taking them, but talk to your doctor or nurse about whether they may be contributing to your difficulties. Depression and anxiety Feeling low or anxious can affect your erections, because many of the physical parts of how we react sexually are influenced by how we think and feel. Getting treatment for erection problems Speak to your doctor or a nurse. They will be able to discuss possible treatments with you or make an appointment for you to see a specialist. Treatments Many of the treatments for erection problems work by improving the flow of blood to the penis. The treatments are: tablets injections pellets vacuum pump surgical implant sex therapy (see page 57).
23 Specialist Nurses prostatecanceruk.org 23 Because getting an erection also relies on your thoughts and feelings, a combined approach to erection problems often works well. Try getting some medical treatment as well as tackling any worries or relationship issues you may have. There are lots of ways to do this, so pick what works best for you. It may be talking to someone close to you, seeing your nurse or getting some counselling or sex therapy. See page 47 for more information. What is the best treatment? There is not enough evidence to say whether one treatment for erection problems is better than another in men who have had treatment for prostate cancer. The effectiveness of each treatment varies. Younger men, men who are in good overall health and men who had good erections before they had treatment for prostate cancer may be more likely to find treatment successful. But even if you don t fit into these categories, treatment may work for you. Will the treatments work if I am on hormone therapy? All types of hormone therapy may reduce your desire for sex, so treatments that only work when you have desire, such as PDE5 inhibitor tablets (see page 27) are unlikely to work. But injections, pellets, vacuum pumps and surgical implants will be able to give you an erection as they do not need you to have sexual desire to work. The treatment for erection problems you choose will depend on your own preferences. You can try one treatment but, if you find this doesn t work for you, remember that there are other options.
24 24 Prostate cancer and your sex life Stick with it Treatments for erection problems are not always a quick fix, and you often have to stick with them for a while or try different treatments to see what works best for you. Research shows that men who tried more treatments for erection problems were more likely to find one that worked. If you have had surgery then your erections may improve over time as your nerves heal. So if treatments do not work at first, it is worth giving them a try again in a few months. I tried different tablets, with no effect other than giving me headaches and a red face. I then tried the injection, which worked intermittently at first but after persevering, it now works very well every time. A personal experience. Fitting treatments into your sex life Some of the treatments for erection problems can seem artificial and you may feel like you lose the moment. With a little understanding and patience, you can overcome some of the embarrassments and difficulties. Some couples even find that they use the preparation for treatment, such as the vacuum pumps or pellets, as part of their foreplay.
25 Specialist Nurses prostatecanceruk.org 25 Your partner could come with you to any appointments and, if possible, try to use treatments with your partner in the room. It may be helpful if they know how they work. See page 52 for more information about sex and relationships. Sex therapy may help you work through changes to your sex life. Some treatments are not suitable for men with a condition called Peyronie s disease or with sickle cell trait, because they can cause a persistent and painful erection, known as a priapism. Ask your specialist team for advice if you have these conditions. Watch Paul s story Find out about trying different treatments for erection problems.
26 26 Prostate cancer and your sex life Focus on keeping your penis active after surgery Although you may not be ready or recovered enough for sex, you can still start treatment for erection problems during the weeks and months immediately after surgery. It could be a low daily dose of medication or using a vacuum pump, or sometimes both together. The idea behind this is that medication or treatment alongside masturbation encourages blood flow to the penis and makes sure that the tissue you need for erections is kept healthy. You may hear this called penile rehabilitation. You could think of it in the same way as having physiotherapy if you had injured your arm or leg. Although some research shows that starting treatment early may be beneficial for erections, we need more research to say how effective early treatment is and it may not work for every man. My nurse encouraged me to take the tablets and to masturbate even if my penis was soft, he said I shouldn t give up as it was keeping my penis active. I found that masturbating in the shower was best as I was more relaxed. A personal experience.
27 Specialist Nurses prostatecanceruk.org 27 Treatments for erection problems Tablets (PDE5 inhibitors) A group of medicines called phosphodiesterase type 5 (PDE5) inhibitors can help men get erections. These drugs are called: sildenafil (Viagra ) tadalafil (Cialis ) vardenafil (Levitra ). How well do they work? The success rate of these drugs varies. There has not been any research comparing the effectiveness of the different types of PDE5 tablets in men who have had treatment for prostate cancer, so we cannot say if one drug is better than another. How do they work? These tablets don t cause spontaneous erections, they only work if you are sexually stimulated. This means when something turns you on or arouses you, such as when you have sexual contact with your partner or sexual thoughts. They normally take 30 minutes to an hour before they start to work. If you take Viagra and Levitra it will be active in the body for around four hours and you will be able to get an erection with sexual stimulation within that time. Cialis will be active for about 36 hours, so you will have a longer window of time to have sex. The dose of drugs you have will vary. Some men start with a low dose of the drugs, but you can go up to a higher dose, depending on whether the drug works. If the maximum dose of one drug does not work, one of the other drugs may work better for you. Other men, particularly those who have had surgery (radical prostatectomy) will start on the highest dose and may gradually reduce it.
28 28 Prostate cancer and your sex life Don t give up Try each tablet at least eight times before deciding how effective it is or changing to a different one. If you have a partner, it may also take a while to get the timing right. Some of these tablets may not work as well after a big meal, particularly one that contains a lot of fatty foods. Read the patient information leaflet that comes with your tablets for more information. Cialis (tadalafil) also comes in a one-a-day version. You might prefer to take a tablet once a day if you want to have sex often or if you and your partner prefer spontaneous rather than pre-planned sex. Side effects All PDE5 inhibitors can cause some side effects including: headaches indigestion a flushed face itchiness or swelling in your nose (rhinitis) back pain. These side effects are usually mild and do not last long.
29 Specialist Nurses prostatecanceruk.org 29 You should not take PDE5 tablets if you are taking a group of heart drugs called nitrates. Nitrates are usually used to treat heart problems. If you have a heart problem or are using nitrates, discuss ways to treat your erection problems with your GP or specialist. There are other drugs that you should not take PDE5 tablets with, such as alpha blockers. Check the patient information leaflet that you get with the drugs or ask your doctor or nurse. Buying medicine on the internet Only use medicines for erection problems that have been prescribed to you by a health professional, such as your GP or doctor. Buying medicine on the internet is dangerous as the medicines can be fake and could contain ingredients that may be harmful or react with other medications you are taking. Herbal medicine Herbal medicines for erection problems, like herbal Viagra that you can buy in Chinese herbal medicines stores, can also be unsafe. Speak to your GP or a health professional before taking any herbal medication for erections.
30 30 Prostate cancer and your sex life Injections Erection problems can also be treated with a drug called alprostadil (Caverject, Caverject Dual Chamber or Viridal Duo ) injected into your penis. Spongy tissue of penis Very fine needle Injection Plunger The idea of an injection may sound alarming but many men find it is not that bad and doesn t hurt. The first time you use the drug a nurse or doctor in clinic will show you how to inject it into your your penis with a very fine needle. They will make sure you are happy giving the injection yourself before you go home. How well does it work? If you are shown how to use them properly then injections can be a successful way of treating erection problems.
31 Specialist Nurses prostatecanceruk.org 31 How does it work? The injection causes the penis to fill with blood, and you will get an erection within around 15 minutes. The erection will normally last for 30 to 40 minutes. You need to be able to see you penis to use the injection so if you have sight problems, have a big belly or have a retracted penis it may not be suitable for you. Also if you have difficulties with your hands it may be harder to use the injection. Your doctor or nurse will discuss other options with you. Side effects Some men find their penis aches for a few hours afterwards. If you have any other problems, tell your doctor or nurse. Occasionally your erection may stay beyond a comfortable length of time. This is called a priapism which is rare and affects less than one in 100 men (one per cent). If your erection does not go away, try having sex, masturbating or having a cold shower. Some doctors advise squatting or walking up and down the stairs. If the erection hasn t gone away after four hours you should go to your local hospital accident and emergency (A&E) department straight away for treatment. Getting the injection technique right is important and may need some experimentation. A personal experience
32 32 Prostate cancer and your sex life Pellets The drug, alprostadil, is also available as a small pellet, called MUSE. Applicator stem Applicator Opening or eye of penis Applicator stem Applicator Pellet Urethra How well does it work? It is not as effective as using the injections, but may be a good alternative if you do not like the idea of an injection.
33 Specialist Nurses prostatecanceruk.org 33 How does it work? You use a disposable applicator to insert the pellet into the opening or eye of the penis. It helps if your urethra (the tube you pass urine through) is already moist. So before you use MUSE, urinate and gently shake your penis several times to remove excess urine. You or your partner can then massage or stimulate your penis and help melt the pellet. If the pellet works, you should get an erection within 15 minutes, which will last between 30 and 60 minutes. Injections or pellets can be used by men who have little or no sexual desire (libido), but they work better when you have some sexual interest and stimulation. Side effects MUSE can cause some pain in the penis or testicles and dizziness in some men.
34 34 Prostate cancer and your sex life Vacuum pump This treatment for erection problems involves a pump and tube that creates a vacuum in order to make blood flow into your penis. Pump Penis Rubber ring stays on the penis Plastic cylinder How well does it work? The vacuum pump can be an effective way to get an erection. Satisfaction with the pump varies from man to man, but men who get on well with it often use it long-term. How does it work? The pump is made up of a plastic cylinder that you put your penis into and a pump that you operate by hand or battery. The pump creates a vacuum inside the tube and this makes blood flow into your penis to make it erect. You then slip a rubber ring onto the base of your penis. This stops most of the blood escaping once you remove the vacuum pump. You should only wear the ring for a maximum of 30 minutes at a time. It can take a bit of practice to get used to but some men prefer this option because it avoids using drugs and there s no limit to how often you can use it.
35 Specialist Nurses prostatecanceruk.org 35 Your nurse or doctor will show you how it works. You may also be given an instruction DVD to take home. Some men find that because the base of their penis is still soft, it moves around and can be difficult to have sex at first. You or your partner may need to guide the penis in. This can take some practice. Side effects Your penis may feel slightly cooler than usual when using a vacuum pump and the skin may look darker. I find it helps to shave the hairs around my penis before I use my vacuum pump. This makes it easier to use the ring at the base of my penis. A personal experience
36 36 Prostate cancer and your sex life Implants This involves having an operation to insert an implant into your penis. An inflatable implant Fluid Implant Pump in scrotum Implant when inflated How well do they work? Most men who have an implant tend to be satisfied with it. How do they work? You will need to have surgery to insert the implant. There are two main types of implants. The first type uses semi-rigid rods that keep the penis fairly firm all the time but allow it to be bent down when you don t want an erection. The second type is an inflatable implant in the penis, and a pump placed in your scrotum. When you squeeze the pump the implant fills with fluid (saline) which makes penis hard. Your erection will last for as long as the implant is inflated.
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