Getting support for long-term effects of hormone therapy

What can happen to your bones when on hormone therapy long-term?

• Using hormone therapy for longer than 6 months can lower your bone mineral density.
• This can lead to an increased chance of osteoporosis. Osteoporosis is a condition that weakens your bones.
• This means that you may be more likely to break (fracture) your bones.

• Visit the Royal Osteoporosis Society website to learn more about osteoporosis (link opens in a new tab). They also have a section on osteoporosis in men (link opens in a new tab).  
• You are at more risk if you are:
  • Of older age
  • Taking medications such as Enzalutamide or Abiraterone with prednisolone
  • Having hormone injections such as leuprorelin (Prostap) or goserelin (Zoladex). 

What is bone mineral density?

• Bone mineral density is a measurement of how much calcium and other minerals there are in your bones.
• The lower your bone mineral density, the greater the risk of breaking your bones.

How is bone mineral density measured?

• This is usually measured using a bone density (DEXA or DXA) scan.
• This uses low doses of X-rays to see how dense (strong) your bones are.
• Visit NHS.UK or The Royal Osteoporosis Society to learn more about DEXA scans (both links open in new tabs).

What is a fracture risk (FRAX) score?

• This is a percentage that predicts the chance of you getting a fracture within the next 10 years. It considers things like:
  • Your Age
  • Medications
  • Lifestyle
  • Family history and any other medical conditions you may have. Visit the Royal Osteoporosis Society for more information (link will open in a new tab). 

What medications are available to help?

• You may be advised to start using vitamin D and calcium supplements.
• You may also be offered medications that can help to treat or delay bone mineral density loss. For example bisphosphonates.
• Bisphosphonates help to slow down the rate of bone loss. This helps to preserve the density of your bones. Visit NHS UK to learn more about bisphosphonates (this link opens in a new tab). 

What can I do to help myself?

• Lifestyle is also important. This means:
  • Keeping active
  • Keeping a healthy weight
  • Eating a healthy diet
  • Reducing your intake of alcohol
  • Giving up smoking.
• The Royal Osteoporosis Society have a page called 'Bone health for all' (This link opens in a new tab). The page has lots of information to help you keep your bones healthy.

• Hormone therapy can cause:
  • An increase in your weight especially around the tummy.
  • An increased risk of developing type 2 diabetes. Visit Diabetes UK to learn more about type 2 diabetes (link will open in a new tab).
  • The levels of cholesterol in your blood to rise.
    • Cholesterol is a fatty type substance that is found in your blood. It helps your body perform many important tasks. However, having too much cholesterol can cause problems. Visit Heart UK to learn more (link will open in a new tab).

• These issues can put some people at increased risk of developing conditions that affect the heart or blood vessels. This can include:
  • High blood pressure. Visit the British Heart Foundation to learn more about high blood pressure (link will open in a new tab).
  • Blood clots.
  • A build-up of fatty deposits inside your arteries (atherosclerosis). To learn more about atherosclerosis visit Heart UK (link will open in a new tab). 

• Your healthcare team should discuss the risks to your heart and blood vessels before you start treatment. 

• They will carry out some checks for example:
  • Your weight and waist circumference
  • Blood pressure
  • Blood tests to check your cholesterol.
• They may also ask you about any family history of heart disease.
• They use all the information they collect to calculate your cardiovascular risk. 

What can I do to help myself?

Lifestyle is important. This means:

• Keeping active. This can be something simple like:
  • Going for a walk in the park or down to the shops
  • Gardening
  • Swimming
  • Dancing

  • Playing with your children or grandchildren.

    Something that makes your heart work a little harder keeps it healthy. The NHS has exercise guidelines and workouts to help improve your fitness (The link will open in a new tab). 

• Keeping a healthy weight. Speak to your GP or practice nurse about your ideal weight. They may refer you to a dietician for extra help if necessary.
• Eating a healthy diet. The NHS have the 'Eatwell' guide. (This link opens in a new tab). This gives information about how to achieve a healthy balanced diet.
• Reducing your intake of alcohol. If you regularly drink too much alcohol you may be more at risk of:
  • Abnormal heart rhythms
  • Damage to your heart muscle
  • Heart attack or stroke
  • Pounding heart
  • High blood pressure.
• The British Heart Foundation have information about the effects of alcohol on the heart. There is also advice on how to cut down you alcohol intake. The link opens in a new tab.
• Giving up smoking. Smoking is very bad for the health of your heart. It increases the chance that you will develop heart disease. It also damages your blood vessels. Visit the British Heart Foundation (this link will open in a new tab) to learn about:
  • Smoking and its effect on the heart
  • How you can quit smoking.

• Most men who have hormone therapy will have some sexual issues.
• This can include:
  • Problems getting an erection (erectile dysfunction)
  • Penile shrinkage
  • Testicular shrinkage
  • Loss of libido (sex drive)
  • Dry orgasms. This means you may produce less or no semen (cum) when you orgasm. 

• Your healthcare team should discuss with you and your partner (if you have one) about the possible risks of sexual issues before treatment. 

  

What can I do to help myself?

• If you start to experience erectile issues whilst on treatment, you can speak to your GP.
• They can prescribe medications such as sildenafil (Viagra) or tadalafil (Cialis).
  • These can help increase blood flow to your penis.
• If these medications do not work, your GP can refer you to a sexual dysfunction service.
• They may suggest trying a vacuum erection device.

• If this does not work you may be offered Alprostadil. This comes in different forms:
  • A cream (Vitaros
  • A pellet (Muse)
  • An injection (Caverjet)

• You may also be referred to a psychosexual or relationship counsellor.

  

• For more details on all of these treatments and other support services visit our sexual problems page on the infopool (link will open in a new tab). 

• Hormone therapy causes hot sweats and fatigue for most people.
• Your healthcare team should tell you about the risks. 

• They can also discuss treatments and ways to manage these symptoms.

  What can I do to help myself?

• Visit our infopool page on managing hot sweats and fatigue with hormone therapy for more information, support and resources. 

• Some people experience breast swelling or growth when on certaim types of hormone therapy. This is called gynaecomastia. 

  

• The amount of growth will vary between men.
• You may also get some tenderness and discomfort in your breasts and nipples. This is called mastalgia. 

What causes the changes to my breasts?

• Testosterone is a male sex hormone (an androgen). It is made mainly by your testicles. A small amount of testosterone is made by your adrenal glands. These are on top of your kidneys.
• Testosterone usually helps prostate cancer to grow.
• Oestrogen is one of the main hormones in females. However, men also have a small amount of circulating oestrogen in their bodies. It influences their:
  • Sex drive
  • Ability to make sperm and get an erection.
• Your hormone therapy blocks or lowers the amount of testosterone in your body.
• This means that you will have an imbalance of testosterone and oestrogen in your body.
• Stimulation of oestrogen causes the breast tissue to grow.
• This side effect is more common with anti-androgen medications such as bicalutamide. 

What treatments are available to help?

• Tablets called tamoxifen can be helpful. These block the effects of oestrogen in your body.
• Radiotherapy to the breasts before starting treatment (or within the first month of treatment) can decrease breast growth. This is usually a single treatment.
• In some cases, surgery may be used to remove some of the breast tissue. 

Psychological issues and breast enlargement

• Some men will be more bothered than others.
• This may depend on:
  • How much your breasts have grown
  • How important your body image is to your sense of self
  • Your feelings around masculinity
  • Whether you are single or in a relationship.  
• Some men may:
  • Feel less masculine
  • Lose their sense of identity
  • Feel shame or distress.

• Always talk to your healthcare team about how you feel. They can help you to explore possible treatment options.

   

What else can I do to help myself?

• Other things that you can do include:
  • Wearing baggy clothing when out and about or going to the gym
  • Wearing a wetsuit vest if you go swimming.
  • Counselling. This may help you to come to terms with your changed body image.
  • Visit our infopool emotional and psychological support page for more information and resources. The link will open in a new tab.
• Talk to your romantic partner about how you feel about your changed body appearance. They can help you decide whether you want to try treatment. 

• Many men will put on weight around their waist whilst on hormone therapy.
• Weight gain is most likely to happen in the first year of treatment.
• This can be made worse if you are not physically active.
• You may be at more risk of developing complications such as diabetes or heart problems if you are already:
  • Overweight
  • Not very active
  • At risk of developing diabetes.
• You may also find that you lose some muscle mass and strength. This may cause you to get aches and pains in your joints and muscles. 

What can I do to help myself?

• You may not feel like exercising. However, a structured and gentle exercise programme can help you to preserve your muscle strength.

• The National Institute for Health and Care Excellence (NICE)  state that men who are starting or having hormone therapy should be offered supervised resistance (weights or bands) and aerobic exercise for at least 12 weeks. This can reduce fatigue and improve your quality of life. 

• Ask your GP about any exercise programmes available in your area. 

  

• The South East London Cancer Alliance and Guy’s Cancer Academy have information about how to keep active with a cancer diagnosis.
  • Watch a video from a physiotherapist about the benefits of exercise (the link opens in a new tab).
  • You can then work through an online module ‘Being active when you’re living with cancer’ (This link opens in a new tab).  
  • They provide information on keeping active during and after different types of treatment for cancer including hormone therapy (this link opens in a new tab).
  • There are a series of exercise videos that you can work through. You can choose from beginner and more advanced exercises.
• Clatterbridge Cancer Centre have a page on physical activity and cancer care (this link opens in a new tab).
  • This includes some bed- and chair-based videos that you can try.
• Penny Brohn offer services to any adult affected by cancer. They offer both in-person and online services. Visit their ‘move more’ page for:
  • Information about the benefits of moving more with cancer
  • The services that they offer. These include sessions on:
    • Strength and stamina
    • Yoga
    • Qi Gong.

Depression

• People on hormone therapy for prostate cancer have an increased risk of depression.
• This can be related to the physical side effects of treatment.
• It may be helpful to discuss any existing mental health issues with your healthcare team. It is helpful to do this before you start treatment.
• Visit our page on emotional and psychological health for more information and how to access support (link will open in a new tab). 

Brain fog and memory

• Hormone therapy can also affect your cognitive function.
• This means that it may affect your ability to:
  • Think straight
  • Learn new things
  • Remember things
  • Make decisions
  • Use your judgement correctly.
• For example, you may forget where you parked the car.
• This is sometimes called 'brain fog'.
• Problems can sometimes be worse if you are taking a drug called enzalutamide (Xtandi).
• There is also some research that shows that people on hormone therapy may have an increased risk of developing dementia. However, the risk is higher if you are:
  • On hormone therapy for longer than 12 months
  • Taking hormone therapy continuously.

• For most people these cognitive changes will go in the weeks and months after finishing hormone therapy.
• Before you start treatment, your healthcare team may ask you about problems you currently have with any of these issues. If they have any concerns they may:
  • Carry out a short test of your cognitive function. This can be used as a baseline.
  • Refer you to a memory clinic.
• Speak to your healthcare team if you have any concerns about your memory either before or during treatment.

What can I do to help myself?

Here are some things that you can do to help manage your brain fog and problems with your memory:

Number 1: Keep physically active. This will improve blood flow to your brain helping it work more efficiently. It will also make you more alert.

Number 2: Keep your brain active. You can try:

• Memory games
• Puzzles like crosswords, sudoku and scrabble
• Learning something new. This may be a language or a new hobby.

• There are many puzzle and memory apps you can download onto your phone or tablet. You can also use traditional board games or pen and paper. 

  

Number 3: Use memory aids. This can be as simple as keeping a to do list or shopping list. You can use a notebook or your phone or tablet. Some people find voice noted more useful. Use a calendar to record medical appointments or family events. You can use timers and alerts on your phone or tablet to help you to remember:

• To take medications
• To call someone.

Number 4: Keep a diary. This can be used to record your symptoms or your daily life:

• Symptom diary. Note down when your symptoms are worse. E.g. when you're tired or feel stressed.
• Life diary. Making a not of what you did each day can be a useful aid to recall events if you need to.

Number 5: Keep stress levels as low as possible. This is easier said then done! But stress can make remembering things more difficult. Here are some things you can do to help lower stress:

• Take up gentle exercise like yoga or Tai Chi.
• Get out in nature when you can. A walk in the park or by the sea.

• Take time to meet and talk with friends and family. You don't have to talk about your cancer. You can ask them to tell you about what they have been doing.
• Don't forget your hobbies if you have any. Take time to lose yourself doing something you enjoy. If you don't have a hobby, think about starting a new one. You could join a local club or society.
• Access emotional support or talking therapies. Visit our emotional and psychological support page for more information and resources.
• Many people find meditation or mindfulness very relaxing.
  • Penny Brohn (based in Bristol) run free, online group sessions for anyone affected by cancer. This includes friends and family. You can sign up on their website (this link will open in a new tab).  Groups cover:
    • Wellbeing
    • Resilience
    • Nutrition
    • Movement and exercise (gentle yoga, Qi Gong, move, dance, feel).

• The family caregiver alliance (based in the USA) have put together a series of eight, short, online relaxation exercises. These are audio only. You can dip in and out depending on what you need. Visit their website to access the exercises (this link will open in a new tab).They cover:
  • Deep breathing
  • Muscle relaxation
  • Mindfulness meditation
  • Guided imagery.
  • You can dip in and out depending on what you need. Visit their website to access the exercises (this link will open in a new tab).
• Penny Brohn (based in Bristol) run free, online group sessions for anyone affected by cancer. This includes friends and family. Groups cover:
  • Wellbeing
  • Resilience
  • Nutrition
  • Movement and exercise (gentle yoga, Qi Gong, move, dance feel).
  • You can sign up on their website (this link will open in a new tab).

Number 6: Cut down on alcohol. Drinking too much alcohol may affect your ability to think straight or remember things. Cancer Research UK have a page with with tips for cutting down your alcohol use (link will open in a new tab).

Number 7: Simplifying your life. Cut your day into bitesize chunks. Multitasking can be more difficult with brain fog. Divide your day into smaller, achievable tasks. This can be less overwhelming, less stressful and more satisfying.

Visit our emotional and psychological support page for more information and resources on how to manage your mental health. 

• Making changes to your diet and starting a supervised exercise programme can:
  1. Have benefits to your physical health including:
     • Maintaining a healthy weight
     • Maintaining your strength
     • Help to lower your cholesterol. You can read this article from the British Heart Foundation about exercise and cholesterol.
     • Help to maintain or lower your blood pressure.
     • Help with fatigue.
  2. Benefit your mental health.
• Smoking is bad for your health. It can negatively affect your heart, lungs and bone health. Visit Cancer Research UK for information to help you to quit smoking.
• It is a good idea to try to start these changes before starting treatment if you can.

• Before starting treatment, your healthcare team can give you advice about:
  • How to make changes to your lifestyle including:
    • Diet
    • Smoking. You can refer yourself to the NHS stop smoking services. Visit the NHS quite smoking webpage for more information.
    • Alcohol
    • Exercise.
• They may refer you to a:
  • Dietician
  • Stop smoking service
  • Supervised exercise programme.
• Penny Brohn UK (link opens in new external tab) is a UK based health and wellbeing charity that provides cancer care for:
  • Your mind
  • Body
  • Emotions
  • Heart
  • Soul
• Their services are open to anyone aged 18 and over who has a cancer diagnosis, and to people in a close supporting role. Services can be accessed online and at their centre in Bristol. They also run online group sessions.
• They have a number of online resources to help you build your cancer wellbeing. Visit their Resources section to learn more (link will open in a new tab).