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How hormone therapy affects you

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Like all treatments, hormone therapy can cause side effects. Make sure you discuss these with your doctor or nurse before you start treatment. You can also talk to our Specialist Nurses about side effects.

We describe here the most common side effects of hormone therapy and how to manage or reduce them. It may seem like there are a lot of possible side effects, but you may not get all of them. Hormone therapy affects men in different ways. Some men have fewer side effects than others. This doesn’t mean that the treatment is any less effective.

There are treatments and support to help manage side effects. And some men find that their side effects get better or become easier to deal with.

The risk of getting each side effect depends on your type of hormone therapy and how long you take it for. If you have hormone therapy alongside another treatment, you may get side effects from that treatment as well.

Watch Bruce's story: How hormone therapy affected him.

How long will side effects last?

The side effects of hormone therapy are caused by lowered testosterone levels. Side effects will usually last for as long as you are on hormone therapy. If you stop your hormone therapy, your testosterone levels will gradually rise again and some of the side effects will reduce. This may take several months – your side effects won’t stop as soon as you finish your hormone therapy.

Surgery to remove the testicles (orchidectomy) can’t be reversed, so the side effects can’t be reversed. But there are treatments that can help reduce or manage some of the side effects.

Hot flushes

Hot flushes are a common side effect of hormone therapy and can affect men on LHRH agonists or anti-androgens. They can be similar to the hot flushes women get when they’re going through the menopause.

Up to eight out of ten men on LHRH agonists (80 per cent) get hot flushes.Some men find that their hot flushes get milder and happen less often over time,but other men find that they continue to have hot flushes for as long as they have hormone therapy.

Hot flushes can vary from a few seconds of feeling overheated to a few hours of sweating which can be uncomfortable. They are sometimes described as being mild, moderate or severe.

  • A mild hot flush could last for less than three minutes and may make you feel warmer than usual and a little uncomfortable.
  • A moderate hot flush can cause you to feel too hot. You might sweat and find you need to take off some layers of clothes.
  • A severe hot flush can make you feel very hot and sweaty and you may need to change your clothes or bedding. They can make some men feel irritable, uncomfortable and sometimes sick (nauseous).

Hot flushes might happen suddenly without warning, or they may be triggered by things such as stress, a hot drink or a change in the temperature. You may find you feel cold, shivery or washed out after having a hot flush. You might also find that you sweat at night, which can disrupt your sleep and cause tiredness.

How long the hot flush lasts is not always as important as whether it affects your everyday life. If your symptoms are mild or not bothering you then you may not need treatment. But speak to your doctor or nurse if you find your symptoms disruptive or difficult to deal with.

What can help?

There are a number of things you can do to help manage hot flushes.

Lifestyle changes

There are some lifestyle changes that may help.

  • If you smoke, try to stop. Speak to your GP for help stopping. The NHS website and QUIT also provide advice.
  • Try to stay a healthy weight. Read more about diet and physical activity.
  • Make sure you drink enough – aim for around six to eight glasses a day. Try to cut down on alcohol and drinks that contain caffeine, like tea and coffee.
  • Reduce the amount of spicy food you eat.
  • Keep your room at a cool temperature and use a fan.
  • Use light cotton bed sheets. If you sweat a lot at night, try using a cotton towel on top of your sheets which you can change easily.
  • Wear cotton clothes, especially at night.
  • Try having lukewarm baths and showers rather than hot ones.

You might find it helpful to keep a diary of your symptoms for a few weeks. This can help you work out if there are any situations, or particular drinks or foods that bring on a hot flush. The diary might also help you to decide whether to have treatment for your hot flushes.

I’m still trying to control them and work out what may cause some of them. But some days they just hit me.

- A personal experience

 

Medicines

There are medicines that may help relieve the symptoms of hot flushes and reduce how often you get them. Your doctor or nurse may suggest a medicine called medroxyprogesterone. This is a type of progesterone (man-made hormone) which may help improve hot flushes.

Other medicines that may help are a progesterone called megestrol or an an anti-androgen called cyproterone acetate. These are usually given if medroxyprogesterone doesn’t improve your hot flushes. 

A drug called gabapentinmay also be helpful but we need more research into how effective this is.

As with any drug, there is a risk of side effects from these medicines. Talk to your doctor or nurse about these before starting any treatment for hot flushes. Some medicines may not be suitable for men who have a history of high blood pressure, heart disease or strokes, or problems with their liver. Your doctor or nurse will discuss this with you.

Complementary therapies

Complementary therapies are used alongside conventional treatments, rather than instead of them. There are many different complementary therapies available which might help with hot flushes. These include acupuncture, hypnotherapy, cognitive behavioural therapy, herbal remedies and homeopathy.

It is important that you tell your doctor about any complementary therapy you are having or are thinking about having. Some complementary therapies have side effects or may interfere with your cancer treatment. You should also tell your complementary therapist about any cancer treatments you are having.

When you choose a therapist, make sure they are properly trained and belong to a professional body. The Complementary and Natural Healthcare Council will be able to give you advice about finding a therapist. Some complementary therapies are available on the NHS. Ask your hospital doctor, nurse or GP about this. Many hospices also offer complementary therapies.

Some men find that acupuncture and hypnotherapy help them deal with hot flushes, although we need more research to show whether these treatments work.

  • Acupuncture involves inserting fine sterile needles just below the skin. This shouldn’t hurt, but you might feel a tingling sensation.
  • Hypnotherapy is where a therapist talks to you and helps you go into a trance-like state where you feel very relaxed and calm. They then suggest things that might help.

A small research study found that cognitive behavioural therapy (CBT) helped women cope with hot flushes. Another small study is now looking at whether this approach could help men on hormone therapy deal with their hot flushes. CBT is a therapy that helps you manage problems by helping you to think in a positive way. You can find more information on www.nhs.uk.

Some men have found that herbal remedies can help. Herbal remedies use plants or plant extracts. However, there is no scientific evidence that these are effective. Check with your doctor that these are safe for you.

  • Sage tea, evening primrose oil and red clover are all herbal remedies.
  • Black cohosh is a herb which can be bought as a supplement. There is a small possibility that it may cause liver damage. This is rare, but you should not take it if you have ever had liver or kidney disease.

Not all herbal remedies in the UK are licensed, and the quality varies greatly. Be particularly careful about buying herbal remedies over the internet. Many are manufactured outside the UK and may not be regulated. Many companies make claims that are not based on proper research, and there may be no real evidence they work. Remember that a product is not necessarily safe because it is called ‘natural’. Some herbal remedies may artificially reduce your PSA level, making the PSA test unreliable.

Macmillan Cancer Support and Cancer Research UK have more information on complementary therapies available, and important safety issues to consider when choosing a therapy.

Changes to your sex life

Having hormone therapy affects your sex life in different ways.

  • It changes your desire for sex (libido) and may mean you have much less interest in sex.
  • It can cause problems getting and keeping an erection (erectile dysfunction).

In most cases, these effects last for as long as you are on hormone therapy.  It can take up to a year for sexual function to gradually return to normal after stopping hormone therapy. Very occasionally, some men don’t see an improvement after stopping hormone therapy. If you’ve had surgery to remove the testicles (orchidectomy), these side effects can’t be reversed.

Desire for sex (libido)

All types of hormone therapy will change your sex drive and may mean you have less interest in sex. This is because hormone therapy lowers your level of testosterone, which is what gives you your sex drive.

Testosterone is not the only thing that can affect your sex drive. Other physical and emotional factors can also affect how you feel about sex.

  • Some men describe feeling like they have lost their self-esteem and confidence, particularly around their masculinity.
  • If you are feeling depressed or anxious then you may be less interested in sex.
  • Treatment can cause tiredness and mean you have no energy for sex.
  • You might feel worried or embarrassed about physical changes after hormone therapy – such as putting on weight, changes to the size of your penis or breast swelling.

If you have a partner, their desire for sex might also change after your diagnosis and during treatment. If they are feeling anxious, they may have less interest in sex. Dealing with a cancer diagnosis and treatment can also put a strain on relationships – this can affect how you and your partner feel about sex.

Erection problems

All types of hormone therapy can cause problems getting or keeping an erection (erectile dysfunction or ED). Having less interest in sex can also play a part.

Anti-androgen tablets are less likely to cause erection problems than other types of hormone therapy. But if you have advanced prostate cancer, anti-androgens taken on their own are not as effective at controlling the cancer as other types of hormone therapy.

What can help?

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. Treatments are available to you whether you’re single or in a relationship. You can also be referred to a specialist service such as an erectile dysfunction (ED) clinic.

There are different treatments for erection problems available. Your doctor may first suggest you try tablets that belong to a group of medicines called PDE5 inhibitors (for example Viagra). Tablets, such as Viagra might not work for everyone, especially if your hormone therapy is affecting your desire for sex. But there are many other treatments that can help give you an erection without sexual desire.

Try not to be embarrassed to go and talk to your doctor or nurse. Remember that they will have talked about these problems many times before. As well as discussing the treatments available, they can also let you know about local support groups or counselling services available in your area.

If you are finding it difficult to deal with losing your desire for sex or problems with erections, intermittent hormone therapy might be an option. This involves stopping treatment when your PSA level is low and stable, and starting treatment again when your PSA starts to rise. Your sexual function may improve during your break from treatment. Speak to your doctor about this.

Changes to ejaculation and orgasm

You may notice that you produce less semen while you are on hormone therapy. You will still have feeling in your penis and you should still be able to have an orgasm, but it might feel different to before treatment. Some men have less intense orgasms when they are having hormone therapy.

Changes in penis and testicle size

Hormone therapy can make your penis shorter.It can also make your testicles smaller. Treatments for erection problems, such as using a vacuum pump, might help to keep the penis tissue healthy and in good working order, but more research is needed into this.

If you put on weight because of your hormone therapy, you might find it harder to see your penis. This could mean that you don’t aim so well when urinating. Problems with aim, or a smaller penis, mean that some men prefer to sit rather than stand when they urinate.

Dealing with these changes

Men deal with changes to their sexual function in different ways. Some men find that because they no longer have a desire for sex, it’s easier for them to come to terms with problems getting an erection. But for others, these changes can be a big loss.

If you have a partner, talking about sex, your thoughts and feelings can help you both deal with any changes. It is not always easy to talk about sex and relationships, even for a couple who have been together a long time. But it can bring you closer together and make you feel more confident about facing changes and challenges.

If you are finding it difficult to talk about sex, it might help to see a sex therapist (a psycho-sexual counsellor). They help people who are having sexual problems or experiencing difficulties in their sexual relationship. Your GP, doctor or nurse may be able to refer you to a sex therapist, but this type of therapy is not always available on the NHS. You can find a therapist yourself by contacting the College of Sexual and Relationship Therapists.  The organisation Relate provides relationship counselling and other support services.

Remember – having sex is not just about erections or penetrative sex. Men can have orgasms without an erection or ejaculating and some men get pleasure from pleasuring their partner. There’s no one way to have sex or experience sexual pleasure – have fun and experiment.

There are also other, non-sexual ways of being close. This can be as simple as holding hands or trying new activities together.

Yes we still have sex, but in different ways and with a little bit of medical intervention.

- A personal experience

Extreme tiredness (fatigue)

Hormone therapy for prostate cancer can cause extreme tiredness. Some men experience tiredness that affects their everyday life. Fatigue can affect your energy levels, your motivation and your emotions. Some men find that tiredness can come on quite suddenly, which means that you need to be careful in certain situations – for example, when you are driving. Talk to your doctor or nurse about how tiredness is affecting you. There are ways to help manage it.

Fatigue can also have other causes such as the cancer itself or other conditions, such as a reduced number of red blood cells (anaemia).

What can help?

You might find that your tiredness improves over time. And there are changes you can make to your lifestyle that could help, including:

  • being as physically active as you’re able
  • organising your day
  • planning activities for when you know you will have more energy
  • dealing with any problems sleeping
  • eating healthily
  • complementary therapies.

Some of these changes may be difficult to make, so take things gradually.

Ask your doctor or nurse about help to start a regular exercise routine. Research shows that doing exercises such as swimming or fast walking at least twice a week for 12 weeks can help men on hormone therapy to reduce their fatigue. 

Our fatigue support service is a 10-week telephone service delivered by our Specialist Nurses. It can help if you have problems with extreme tiredness. The fatigue support service can help you make positive changes to your behaviour and lifestyle, which can improve your fatigue over time.

Weight gain

Some men put on weight while they are on hormone therapy, particularly around the waist. You may find that you start to put on weight soon after starting hormone therapy.Some men find this physical change difficult, particularly if they’ve never had any problems with their weight in the past.

What can help?

Physical activity and a healthy diet can help you stay a healthy weight. But it can take a long time to lose weight that you may have put on during hormone therapy. If you are finding it difficult to lose weight, ask your doctor to refer you to a dietitian or weight loss programme.

I've made some small changes that are making a difference. I’ve got into a pattern of going out for a walk most mornings and come back feeling lighter about my day. I’m getting some exercise and I’m not quite as tired as I was.

- A personal experience

Strength and muscle loss

Testosterone plays an important role in the physical make up of men’s bodies. Compared with women, men usually have more muscle strength and less body fat. Hormone therapy can cause a decrease in muscle tissue and an increase in the amount of body fat. This can change the way your body looks and how physically strong you feel.

What can help?

Regular gentle resistance exercise may help to reduce muscle loss and keep your muscles strong.Resistance exercise includes fast walking, swimming and exercising with small weights. Speak to your doctor before you start any exercise. They may be able to refer you to a physiotherapist who can give advice and suggest a specific exercise programme for your needs. If you can’t move about easily, a physiotherapist can give you some gentle exercises to do at home.

Breast swelling and tenderness

Hormone therapy may cause swelling (gynaecomastia) and tenderness in the chest area. This is caused by the effect that hormone therapy has on the balance of the hormones oestrogen and testosterone in the body. The amount of swelling can vary from a small amount of swelling to a more noticeably enlarged breast. Tenderness can affect one or both sides of the chest and can range from mild sensitivity to ongoing pain.

For men taking anti androgen tablets (such as bicalutamide) on their own, breast swelling and tenderness is the most common side effect. If you take oestrogen tablets, you may also get breast swelling. It’s less common if you are taking an LHRH agonist or GnRH antagonist, have had surgery to remove the testicles, or are having combined hormone therapy. Most men taking a high dose of the anti-androgen bicalutamide for more than six months will get breast swelling.

What can help?

Breast swelling and tenderness can make men feel uncomfortable or embarrassed about their bodies. But there are treatments available which can help prevent or reduce these side effects. These include:

  • treating the breast area with a single dose of radiotherapy
  • tablets called tamoxifen
  • surgery to remove some of the breast tissue.

If you are about to start anti-androgens, your doctor will suggest treating the breast area with a low dose of radiotherapy. This can reduce the risk of breast swelling and tenderness. It has to be done within a month of starting hormone therapy because it won’t work once swelling has already happened. Side effects include the skin becoming red, darker or irritated, but this usually clears up in three to five weeks. You may also lose your chest hair in the area that is treated. Sometimes chest hair doesn’t grow back.

Tamoxifen tablets can be taken once a week to help prevent or treat breast swelling and tenderness in men taking anti-androgen tablets. They work by stopping the hormone oestrogen from reaching the breast tissue. Tamoxifen may be an option if radiotherapy hasn’t helped to prevent breast swelling.

You might not be able to have tamoxifen if you are taking oestrogen tablets because it may stop the oestrogens from working properly. We don’t know how tamoxifen affects other hormone treatments in the long term.

Surgery may also be used to treat breast swelling by removing painful or swollen areas of the breast. This treatment carries a risk of damage to the nipple and a loss of feeling. It’s usually only offered if other treatments aren’t able to reduce the breast swelling.

Loss of body hair

Some men find that they lose their body hair while they are on hormone therapy. This is because body hair is linked to the production of testosterone, so when testosterone is reduced, you might lose some of it. The hair should grow back if you stop hormone therapy. We need more research to show how common this side effect is.

Bone thinning

Testosterone helps to keep bones strong. Because some types of hormone therapy reduce the amount of testosterone in your body, long-term treatment may cause your bones to gradually lose their bulk. LHRH agonists, GnRH antagonists and surgery to remove the testicles (orchidectomy) can all have this effect. This can happen within 6 to 12 months of beginning treatment and the amount of bone loss may increase the longer you are on treatment. Anti-androgen and oestrogen tablets are less likely to cause bone thinning.

If bone thinning is severe, it can lead to a condition called osteoporosis. This can increase your risk of bone fractures.

Your doctor may suggest you have a type of X-ray called a DEXA scan, before you start hormone therapy. This can check for any signs of bone thinning. Some men may also need to have scans regularly during hormone therapy treatment. You can talk to your doctor about whether you might need a scan.

What can help?

Lifestyle changes

There are a number of lifestyle changes that may help to reduce your risk of bone thinning and of developing osteoporosis.

Make sure you get enough calcium and vitamin D in your diet. Calcium and vitamin D are important for strong bones. You should aim for 1200-1500mg of calcium each day. You can get calcium from dairy foods (cheese, milk and yogurt) and non-dairy foods (like tinned sardines with the bones, tofu and kale).

The main source of vitamin D is exposure to sunlight. About 15 minutes of sun exposure around the middle of the day, two or three times a week between April and September, should provide enough vitamin D for the year. You can also get it from eating oily fish such as sardines, pilchards, mackerel and salmon, as well as foods fortified with vitamin D such as breakfast cereals. You may need to take calcium and vitamin D supplements – speak to your doctor about this.

Cut down on alcohol. Drinking too much can increase your risk of osteoporosis. Government guidelines recommend that men should not regularly drink more than two units of alcohol a day.

Stop smoking.Smoking can increase your risk of osteoporosis. Speak to your GP for help stopping. The NHS website and QUIT also provide advice.

Exercise regularly. Regular exercise may help to keep you strong and prevent falls which could lead to bone fractures. Gentle resistance exercises such as walking, swimming, and using light weights can be particularly good ones to do.

Keep a healthy weight. Men who are underweight have a higher risk of bone thinning.

Read more about diet and physical activity.

If you already have osteoporosis, have a family history of osteoporosis or have had fractures in the past, talk to your doctor before you start treatment with LHRH agonists, GnRH antagonists or have surgery to remove the testicles. You should also tell your doctor about any other medicines you are taking, in case they might increase your risk of osteoporosis. The National Osteoporosis Society has more information.

Treatments to manage bone thinning

Bisphosphonates are drugs that are used to treat bone pain in men with advanced prostate cancer. They are also used to treat osteoporosis in men on hormone therapy.

Denosumab (Xgeva®) is a new drug for treating bone problems. It’s usually only available on the NHS for men on hormone therapy who have osteoporosis but who are not able to have bisphosphonates.

If you live in England and your doctor thinks it is suitable for you, they may be able to apply to get it for you. If you live in Scotland, Wales or Northern Ireland, your doctor may be able to apply for it for you, but there is no guarantee that they’ll be able to get it.

Risk of heart disease, stroke and diabetes

Evidence suggests that having hormone therapy might increase the chance of developing heart disease, stroke and diabetes. More research is needed to help us understand the link between these conditions.

Research shows that hormone therapy can cause:

  • an increase in weight, particularly around the tummy
  • an increase in cholesterol levels
  • changes in insulin.

Talk to your hospital doctor and GP about how often you should have regular health checks.

If you already have heart problems or diabetes, talk to your doctor before you start hormone therapy. They will work with you to manage these conditions.

While the risk of getting these conditions may be worrying, it’s important to remember that hormone therapy helps men to live longer by controlling your cancer.

What can help?

A healthy lifestyle can help reduce your risk of heart disease, stroke and diabetes. This includes:

  • eating a healthy diet
  • being physically active
  • limiting the amount of salt you eat
  • stopping smoking
  • cutting down on alcohol.

Read more about diet and physical activity.

Changes to your mood

Hormone therapy itself can affect your mood. You may find that you feel more emotional than usual or just ‘different’ to how you felt before. Some men find that they cry a lot. You may also find that you get mood swings, such as getting tearful and then angry. Just knowing that these feelings are caused by hormone therapy can help.

Everyone’s different – some men are surprised by the side effects and how upsetting they find them. Others have fewer symptoms or are not as worriedby them.

Some of the other side effects of hormone therapy are hard to come to terms with. Physical changes, such as putting on weight, or changes to your sex life, might make you feel very different about yourself. Sometimes men describe feeling less masculine as a result of their diagnosis and treatment.

Hormone therapy does make you quite down, it does make you quite tearful. But you learn to recognise when it’s coming on and you can do things to deal with it.

- A personal experience


If you’re starting hormone therapy very soon after being diagnosed with prostate cancer, you might still feel upset, shocked, frightened or angry as a result of your diagnosis.

Things in your day-to-day life can change because of the hormone therapy. Your role in your relationships with your partner, family and friends might change. Or you might be too tired to do some of the things you used to do.

Some men experience low moods, anxiety or depression. This could be as a direct result of hormone therapy, a response to being diagnosed with prostate cancer, or the impact of treatment and the cancer on your life.

If your mood is often very low, you are losing interest in things, or your sleep pattern or appetite has changed a lot, speak to your GP or doctor or nurse at the hospital. These can be signs of depression. There are treatments available for depression.

What can help?

Some men find their own way to cope and might not want any outside help. Others try to cope on their own because they don’t want to talk about things or are afraid of worrying loved ones. Go easy on yourself, and give yourself time to deal with your feelings.

Talking about it

Sometimes talking about how you feel can help. You might be able to get support from talking to family or friends. Or talking to your doctor or nurse might help. You could also speak in confidence to our Specialist Nurses.

You might find it helps to talk to someone who’s been there. The volunteers on our one-to-one support service have all been affected by prostate cancer. They are trained to listen and offer support over the phone. We have volunteers who have had hormone therapy and can understand what you’re going through. Call our Specialist Nurses to be put in touch with a support volunteer.

There are also support groups across the country where you and your family can meet others affected by prostate cancer.

You could join our online community where you can talk to other people with prostate cancer and their families.

There is nothing like talking to someone who has been there.

- A personal experience


Counselling

It’s sometimes difficult to talk to people close to you. Some people find it easier to talk to someone they don’t know. Counsellors are trained to listen and can help you understand your feelings and find your own answers. Your GP may be able to refer you to a counsellor or you can pay to see one yourself.  There are different types of counselling available. To find out more contact the British Association for Counselling and Psychotherapy. 

Changes to your lifestyle

There are several lifestyle changes that might help improve your mood and ease feelings of depression and anxiety. These include:

  • learning ways to relax such as yoga or meditation
  • regular physical activity
  • trying to keep up with your usual hobbies and social activities or trying some new ones – some men say that this helps them stay happy and relaxed.

You might also find it helpful to go on a course to learn ways to manage side effects, feelings and relationships. Macmillan Cancer Support, Maggie’s Centres, Self Management UKand Penny Brohn Cancer Care run free courses for people living with cancer. Ask your nurse, GP or support group if they run training days or if they invite health professionals to give talks.

Treatments for depression

If you are feeling depressed or anxious, anti-depressant medicines are one of the treatment options that may help. Men on hormone therapy can take anti-depressants.Before you start taking any anti-depressants, make sure you tell your GP, doctor or nurse at the hospital about any other medicines or complementary therapies you are taking. Let your GP know if you think you are depressed so they can help find the right treatment for you.

You and your partner

If you have a partner, they may feel worried, anxious or upset about your cancer. They might feel isolated and find it difficult to tell you how they are feeling for fear of worrying you. You can get support together. Sometimes it can also be useful to get separate support as well.

Doctors and nurses are always happy for you to bring your partner along to your appointments, and they might be able to direct you to the type of support that would suit you both. Many support groups also welcome partners. The charity Relate provides relationship counselling and other support services.

References

Updated:September 2015 | Due for Review: September 2017

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