- 14 min read
The impact of prostate cancer on loved ones and carers
When you are the partner, family member, carer or friend of someone diagnosed with prostate cancer, you will also feel the impact of the disease. You may find yourself dealing with mixed feelings of fear, anxiety, anger, depression and loss. Many partners, families and friends say they feel as though they are on an emotional rollercoaster. You may also experience changes to your lifestyle and relationships, and there may be decisions that need to be made around work, finances and new roles and responsibilities.
This section of the toolkit will help you understand what the man with prostate cancer is experiencing and how you can support him. It will also help you to manage the changes in your life that occur as he faces the challenges of prostate cancer.
How can you be supportive?
How involved you are in your loved one’s treatment and experience depends on his needs, your relationship and how much you can do. Each situation is different.
To support him, you can help by:
- Asking him how you can best support him
- Being available to talk with him
- Listening to him
- Helping with bathing, dressing and grooming
- Doing household jobs such as washing, ironing and vacuuming
- Preparing meals
- Providing transport
- Coordinating appointments
- Waiting in waiting rooms
- Talking to doctors and others on their healthcare team, if needed
- Picking up prescriptions
- Keeping family and friends up to date
- Providing emotional and spiritual support
- Doing paperwork
- Administering medication
- Keeping track of symptoms and their general condition
- helping them keep their ‘My Wellbeing Plan’ up to date
Being part of the decision making
You may want to take an active part in decisions about his care. If you are his partner, his decisions will affect you as well. He has the right to say who can be involved in his cancer experience. But you can support him in his decision-making by finding out as much information as you can about the different treatments available.
Helping him to be organised and stay on top of appointments
An important job for you is to help him to be organised. You can keep track of all the information that different health professionals need (for example, referrals, letters, X-rays, pathology samples) for each consultation.
The My Wellbeing Plan is a resource that helps keep track of this information. You can help him keep it up to date and add appointments to his and/or calendars or diaries.
Follow the link to learn more: Your Wellbeing Plan
Before appointments, you can help him to think about and note down the questions they want to ask and the points he wants clarified. Because of what he may be feeling, he may find it difficult to remember and understand information given to him. It can be useful for you to make notes or ask for written information that you can look and discuss with him later.
Talking to his healthcare team
If you are his partner, some doctors may want to speak to you together, while others may prefer to only speak to the person with prostate cancer. But it is up to him to decide who he wants to join him when consulting with his doctors. Because of doctor–patient confidentiality, he has the right to say who should know details about his condition and how much they should know. You will not have access to his medical information if he doesn’t give permission.
If he would like you to be with him, ask him to inform his healthcare team. If you are both meeting with a doctor, you may need to ensure that they address their comments to him rather than to you as a support person.
How do you support him when he is having treatment and experiencing side effects?
All prostate cancer treatments have some side effects. Hormone therapy, for example, can cause a range of side effects such as weight gain, loss of muscle mass and strength, breast swelling and thinning of the bones. It may also affect memory and concentration and can increase depression and anxiety.
You can learn more about side effects from different prostate cancer treatments by following this link: side effects of treatment.
You can also support him to follow a healthy lifestyle that will help to minimise his side effects. Follow the below links to learn more about different ways that you can help him to stay healthy and manage some of these side effects:
Effects on sexual function and intimacy
While this toolkit uses male pronouns, we acknowledge that people assigned male at birth who identify as members of the LGBTQIA+ community are also impacted by prostate cancer.
Changes in sexual function can affect both the man with prostate cancer and their partners. He may experience changes in sexual function, orgasm, body image, penis size and fertility after treatment. He may also lose interest in sex, or it may change the way he sees himself or the way you see each other.
If you are his partner, you may both feel exhausted and worried, and sex and intimacy may be put on the back burner. It’s difficult to feel sexy when you are feeling run down. You may also feel less intimate with him due to his prostate cancer.
However, you may also feel
- closer to him
- that your relationship has become more honest and caring
- as though you now truly know and understand him
Major issues surrounding sexuality and intimacy will be equally important whether you are heterosexual or a person who is LGBTIQA+. If you are a person who is LGBTIQA+, it is important to feel that your sexuality is respected and included in your discussions with your healthcare professionals.
Follow the links below to understand what your partner may be experiencing and find out ways to talk about sex and intimacy and how to support him and your relationship.
You can also talk to your healthcare team about being referred to a professional (for example, psychologist or sex therapist) or a service that specialises in sexuality matters and/or to help him manage his feelings and perceptions about changes to his body image, penis size or orgasms during or after treatment.
Effects on bladder and bowel function
Treatment for prostate cancer can affect bladder and bowel function. Follow the links below to learn more about these side effects and how you can help, including by encouraging him to do any recommended exercises or to seek advice from his healthcare team, when appropriate.
Fatigue during or after treatment
Energy levels may drop because of treatment. Find out about treatment and fatigue and how you can support and encourage them to better manage and cope with feeling tired by following the below links:
Looking after yourself
As his partner, family member, carer or friend, you may have or feel greater demands placed on you. Research has found that people who provide care often experience higher levels of distress than cancer patients themselves. This can happen when you set high expectations for yourself. The physical and emotional demands of caring can be high. You need to look after yourself or these demands can wear you down. The care you give to yourself is as important as the care you give to the person you’re caring for – it helps you to care.
You may also face many challenges around balancing your home and work life:
- You may have to look after the running of the household on your own, while also dealing with the demands of supporting him physically and emotionally
- If you are working during his treatment and recovery period, you may need time off to accompany him to treatments and appointments – it may be useful to check if you can take time off work to provide care and support:
- If you are an employee, your employer should have a clear leave entitlement policy
- If you are self-employed, try to arrange your work so it fits in with the demands of providing support and care
- Other life changes and issues may be causing you concern
Ways that you can look after yourself include:
Ask for and accept help
Some partners and families say that they feel as though they can’t ask for help because they don’t want to impose on others’ busy lives. Sometimes, families can feel as though they are the only ones who know how to properly look after the person they’re caring for.
Others say that they feel as though they have failed in some way if they can’t manage it all by themselves. But asking for and accepting help is actually a sign of strength. It means you are being realistic and proactive in managing the situation.
Having a clear idea about what needs to be done, and how long it will take, may help you accept others’ offers of assistance more often.
Develop your coping skills
Think of occasions when you were faced with a difficulty or challenge:
- What did you do?
- What strategies did you use to help you cope?
- What worked?
- What didn’t work?
- What helped you?
- What didn’t help you?
- Who is in your support network – partner, family, friends and professionals?
- What did they do that helped or didn’t help?
Although these difficult or challenging occasions might not be cancer related, understanding the ways you dealt with them successfully in the past could be useful.
Debrief and talk to others
Talk with people you trust such as your family, another carer or close friends. Talking about your reactions to a situation can be a ‘release’ so you don’t have to ‘bottle up’ your feelings. Allowing yourself to talk about how you’re feeling is not a sign that you’re not coping, it can help you manage your experience better.
Joining a PCFA support group specifically for prostate cancer where families are welcome to attend can be a useful way of getting support from people in a similar situation.
For specific carer support, counselling, carer information and services, call Carer Gateway on 1800 422 737.
Take time out
Managing stress and taking time out from caring to do something you enjoy is an important part of your caring role. It allows you to recharge your energy, to keep a sense of who you are as a person and to feel better about yourself. All these things then benefit the person you care for because you feel calmer, more in control and less stressed.
Caring for yourself should be holistic: look after yourself physically, mentally, emotionally and socially, and express your needs and concerns.
Taking time out to relax doesn’t have to be complicated, time consuming or expensive. Try to give yourself time out each day.
Some things you may like to try are:
- listening to your favourite music
- reading a book or magazine
- doing some gardening or going for a walk
- sitting in a favourite place with a cup of tea/coffee
- cooking
- taking up a hobby
There may be times when you need support or time out for a longer period. Talk to your GP or healthcare team about arranging respite care services if needed.
Look after your own physical health
You may often forget or neglect to keep a check on your own health and wellbeing and may tend to downplay your own health needs when you notice you are not feeling well. You can acknowledge that you are not feeling well, without having to compare your symptoms to how another person is feeling. It is purely a statement about how you are feeling. Not ‘better than’, not ‘worse than’.
To look after your own health:
- Make sure you’re getting enough sleep
- Do some physical activity every day
- Eat a healthy, balanced diet
- Minimise alcohol
- Have regular health checks
Managing your feelings or emotions
During the prostate cancer experience, you may feel a mixture of emotions, including feeling:
- Rejected
- Alone
- Love
- Joy
- Sad
- Scared
- Frustrated
- Appreciated or unappreciated
- Guilty for wanting sex/intimacy
- Angry
- Afraid that they will hurt the person they care for
- They have no attraction for the person they care for
All these emotions are normal. Whatever you are feeling, or have felt, chances are that others in your position have been through the same sorts of feelings. The man with prostate cancer may also have similar feelings.
Some partners and families have found it useful to keep a diary of their cancer experience. Seeing things written down often helps to gain some distance from your problems, or to see them in a new light.
Some of the benefits of keeping a diary include:
- You have a record of your experience – the ups, the downs
- It may help to give you some perspective, for example, reading what you wrote yesterday may help you see that today is a better day
- Writing in your diary gives you time for yourself
- It may help you ‘get out’ some of the worries or frustrations you may be feeling.
- It may help you realise and acknowledge some of your feelings
If you’re feeling angry or frustrated
It is common for partners, carers and families to feel angry, frustrated and resentful at:
- Extra responsibilities they now have
- Family members who do not pull their weight
- Friends who don’t make contact
- Their partner or the person they’re caring for and the situation
- The cancer interrupting their plans for the future
- The changes to everyday life
- Not being listened to by health professionals
- Having to be the carer
Anger is often linked to other negative emotions or may be a response to them. You may also be feeling sad, hurt, frightened or disappointed
Research has shown that men and women may express their anger in different ways. Men often find it easier to express the anger rather than the feelings underneath such as feeling sad or hurt, weak or vulnerable. For women, anger may get buried under frustration or sadness. Letting your anger ’explode’ only increases anger levels and aggression. But holding your anger inside can be just as bad and has been linked to anxiety and depression. If anger is expressed in a controlled way, you can start to look at some of the things that are making you angry. Make a list of them. If you know what makes you angry, you may be able to avoid some situations, or do something different when they happen.
Some ways to handle anger or frustration include:
- Notice the warning signs of anger in your body (for example, tense jaw, heart beating faster, feeling hot, shaking, feeling out of control)
- Take time out
- Step outside the room and go for a walk
- Try relaxation techniques like controlled breathing
- Talk to your doctor or a counsellor about ways to manage your feelings
If you’re feeling fearful and/or worried
Cancer and caring for someone with prostate cancer can be frightening.
You may feel afraid of:
- Doing the wrong thing
- Being left alone with the person you care for
- Being responsible for giving medications
- Dealing with new people and situations
- Not knowing what to do
- Dealing with the failing health of the person you care for
- Being faced with the possibility that the person you care for may die
- The uncertainty of what will happen next
Often learning more about prostate cancer can help you feel more in control. You can also then focus and prioritise the things that you can control. Ask your healthcare team for advice and assistance.
If you’re feeling guilty
Feeling guilty is one of the most common emotions that partners, carers, and families report feeling. You may feel guilty about:
- Not doing a good job at being a carer
- Feeling angry or resentful
- Wanting a break from caring
- Feeling well and healthy while the person you care for is sick
- Discovering material, physical, and emotional limits
- Being embarrassed for the person they care for
When supporting a person with prostate cancer, you may also reach your physical, emotional, and material limits. Sometimes the man with prostate cancer may need some residential care. It’s important to try to not feel guilty when this happens, it might help to remember that they are receiving the care that they need,
When dealing with your feelings, it can be useful for you to recognise your limits, acknowledge the uncertainties you face, recognise the burden that caring has placed upon you, and seek and accept assistance when it is needed.
You can manage guilt by:
- Recognising it and saying it out loud (’I feel guilty for…’)
- Look for the causes of guilt
- Seek and accept help – talk to a trusted friend, family member, prostate cancer support group member, psychologist, counsellor or your doctor.
- Do not use the words ’SHOULD’ or ’MUST’ – they can make you feel more guilty
There are professionals and services such as home care, home nursing and ‘Hospital in the Home’ that can help. Respite care can be helpful as it enables partners and families to maintain their health, emotional and physical strength when providing support and care. Talk to your GP or healthcare team about services that may be available to you.
Don’t feel guilty if the person you’re caring for requires more support. This may be related to the cancer or his need for further treatment, not your caring capability.
If you’re feeling lonely
Isolation and loneliness are common feelings that partners and families report. These feelings may arise because family and friends may not contact often enough. Some people just do not know how to talk to you and the person with prostate cancer about what is happening. You may feel too busy to socialise or take time out for yourself. Even if you have a lot of help, you may still feel as though no one really understands what you are going through.
You can manage your loneliness by:
- Keeping in touch with family and friends more regularly – this can be in person, through phone calls or emails and social media sites
- Accept help from others
- Invite people over to visit
- Join a PCFA prostate cancer support group so that you are around other people who know exactly what you are going through
If you’re feeling stressed
Caring for someone with prostate cancer can be stressful at times. Throughout the cancer experience, your needs and concerns may change. Lots of different emotions may arise, which add to or cause more stress. You may have to adjust to changes in your lifestyle or find that you are taking on more responsibility. Some people can find the role overwhelming. Some days it may feel as though the need is so great that you can’t possibly get it all done or that you have not done enough.
Symptoms of stress may include:
- Trouble sleeping
- Headaches
- Heart problems
- Emotional signs and symptoms such as feeling tired, unwell or over-sensitive
If high stress levels continue for a long time, you may experience exhaustion and burnout.
Ways to manage stress include:
- Exercising regularly, even if it’s just a walk around the block – you can exercise with friends or join a gym
- Learning meditation and other relaxation techniques
- Doing something you find relaxing, such as listening to music, reading a book
- Talking to someone, join a prostate cancer support group, talk to a psychologist or social worker
- Rest and try to get enough sleep
- Eat proper meals that are nutritious and limit alcohol and other drugs
- Take time out
- Be kind to yourself
- Speak to your healthcare team or doctor about ways to manage your stress levels
If you’re feeling anxious
Everyone feels anxious from time to time, but some people may experience these feelings more often. Sometimes it may be hard to know how much is too much. Caring can be a difficult role and there are many stresses and worries that you may face. Anxiety among people who provide care is common. Some research has found that about half of all families experience anxiety.
Some signs of anxiety include:
- avoiding situations
- racing heart
- restlessness
- trembling or shaking
- difficulties with concentration or sleep
If you feel really anxious, or if it has lasted for a long time, speak to a member of your healthcare team. Anxiety disorders can be treated by medication and/or by talking to a psychologist or counsellor.
If you’re feeling depressed
Feeling sad and down are all normal emotions. They usually only last for a short period of time and may only have a slight impact on your life.
Depression is an emotional, physical and thinking state that’s severe and lasts for a long period of time. It usually interrupts a person’s life to a significant extent.
Depression among people who provide care is common and some research has found that about one-quarter of all families suffer from depression.
Some warning signs of depression are:
- Feeling sad or empty
- Feeling irritable or frustrated
- Feeling helpless and/or hopeless
- Having problems concentrating
- Losing confidence in yourself
- Feeling guilty and/or worthless
- Worrying all or most of the time
- Having problems sleeping
- Losing interest in things that you used to find enjoyable
- Noticing a change in your appetite
- Feeling more physical health problems, like pain or fatigue
- Having thoughts of wanting to die
Depression is a serious illness and treatments are available that can help. Talk to your doctor or a member of your healthcare team.
Some ways to manage feeling down, include:
- Try to do at least one thing that you enjoy every day
- Improve your sleeping patterns
- Do not lie around in bed – get up as soon as you wake up
- Try to manage your stress before it gets too much
- Catch up with friends – either in person, or on the phone
- Do some relaxation
- Do some exercise
If you are feeling distressed call a PCFA Nurse on 1800 22 00 99 or if you need urgent help, call Lifeline on 13 11 44 or Beyond Blue on 1300 22 46 36
Key Points
- As the partner, family member, carer or friend of someone diagnosed with prostate cancer, you will also feel the impact of the disease on your life, your emotions, your day to day living and your ability to cope
- There are many ways you can support him during his experience of prostate cancer, treatment and possible side effects
- You also need to look after your own livelihood and find ways to manage your work-life balance and support your own wellbeing
- It’s important to understand that your feelings and emotions are normal and to find ways to manage these so you can stay healthy
- Your healthcare team, doctor, friends, famiily, other carers and suppport groups can be good places to talk things out and to seek help and resources
