Living With and After Prostate Cancer
Living With and After Prostate Cancer
Living With and After Prostate Cancer
Contents
About this booklet 2
Living with and after prostate cancer 5
Physical effects of prostate cancer 9
Fatigue (extreme tiredness) 10
Urinary problems 13
Bowel problems 16
Sexual problems 17
Side effects of hormone therapy 20
Pain 21
Risk of other health problems 22
Metastatic spinal cord compression (MSCC) 23
Diet and physical activity 25
Complementary therapies 31
Prostate cancer and your feelings 35
Relationships and family life 43
Support for partners, family and friends 47
Daily life and prostate cancer 51
Work 51
Money 54
Driving and public transport 56
In the home 57
More information from us 58
Other useful organisations 59
About Prostate Cancer UK 65
Helpline 0800 074 8383 prostatecanceruk.org 5
How often you see them will depend on the stage and grade of your
prostate cancer, what treatment you are having or have had in the
past, how you respond to treatment and any side effects you have.
Don’t worry about asking for help. If there’s anything bothering you,
tell your doctor or nurse. You might want to write down questions
or concerns before your appointment and take notes during
it. Some men find it helpful to have someone with them at the
appointment. It’s hard to take everything in, ask questions
and make notes all at the same time.
6 Living with and after prostate cancer
You might want to get advice from a health professional and learn
some extra skills to make it easier to manage things yourself. For
example, you and your partner or family could go on a course or a
training day about living with and after cancer.
• Macmillan Cancer Support, the Expert Patients Programme,
Maggie’s Centres and Penny Brohn Cancer Care all run free
courses for people living with cancer or long-term health problems.
• Ask your specialist nurse or local support group if they run
training days or if they invite health professionals to give talks.
• Look out for these kinds of courses at your GP surgery, local
hospital, library, adult learning centre or local community or
sports centres.
If you have prostate cancer that’s spread to other parts of the body
(advanced prostate cancer) you can read more about managing
symptoms in our booklet, Advanced prostate cancer: Managing
symptoms and getting support.
10 Living with and after prostate cancer
It’s hard to say how tired you’ll feel during and after treatment.
Some men don’t feel tired at all. Other men get so tired it affects
their everyday life.
Let your doctor or nurse know how you feel and if you’re getting very
tired. They can check what’s causing it and look for ways to help.
It could be your treatment that’s causing the fatigue, but there can
also be other causes such as the cancer itself or other conditions.
If you have a good appetite and you are eating well, following a
healthy and balanced diet should be enough for you to get all the
energy you need. If you are struggling to eat enough and you’ve
lost weight, this could add to your tiredness.
There’s more about how diet and physical activity can help on
pages 25 to 29.
12 Living with and after prostate cancer
Urinary problems
After some treatments for prostate cancer you may have problems
peeing – for example, leaking urine (incontinence) or problems
emptying your bladder (urine retention). Surgery, external beam
radiotherapy, brachytherapy, cryotherapy and HIFU, can all cause
these kinds of problems.
Some men find that urinary problems last for a few weeks or
months after treatment. Other men have urinary problems for a
number of years.
14 Living with and after prostate cancer
There are lots of things that can help with urinary problems.
Depending on the issues you’re having, ways to manage them can
include pelvic floor muscle exercises, bladder retraining, medicines
or surgery.
If you suddenly find you can’t pee (acute urinary retention) you’ll
need treatment straight away, for example at your local accident
and emergency (A&E) department. The doctor may need to drain
your bladder using a catheter. A catheter is a thin tube inserted
through your penis, or through your abdomen, into your bladder.
Acute retention can be very painful and needs urgent treatment.
Read more about managing urinary problems in our Tool Kit fact
sheet Urinary problems after prostate cancer treatment.
They should let you use their toilets without asking awkward
questions. You can order a card on our website or by calling one
of our Specialist Nurses on our helpline.
For more about managing urinary problems read our Tool Kit fact
sheets, Urinary problems after prostate cancer treatment
and Pelvic floor muscle exercises. Read more about diet and
prostate cancer in our Tool Kit fact sheet, Diet, physical activity
and prostate cancer.
Bowel problems
Radiotherapy for prostate cancer (external beam radiotherapy and
brachytherapy) can cause bowel problems for some men. Radiation
can cause the lining of the bowel to become inflamed (proctitis)
which then leads to symptoms such as loose and watery stools
(diarrhoea), and pain in the stomach area (abdomen) or back
passage. More rarely, it can cause bleeding from the back passage.
Some men find that changes to their bowel habits last for a short
time. For others, the changes are permanent. Some men develop
bowel problems months or years after treatment.
Your local continence service can assess your bowel problems and
offer advice about treatments. They can also give you support and
advice on products that can help you deal with these problems.
Ask your GP to refer you.
You may find it helpful to plan ahead and find out where toilets
are before you go out, and carry absorbent pads.
Read more in our Tool Kit fact sheet, Diet, physical activity
and prostate cancer.
Sexual problems
Prostate cancer and its treatment can have a number of symptoms
and side effects that can affect your sex life. Many men with prostate
cancer say that changes to their sex lives and relationships are
some of the biggest challenges they have to deal with.
But there are treatments and support that can provide some
answers and ways for you to work through any problems.
You can get free medical treatment for problems with erections or
other sexual problems on the NHS.
Even though your sex life might not be the same as it was before
cancer, you don’t have to give up on having pleasure, closeness
or fun together. It’s often helpful to explore other ways of having an
Helpline 0800 074 8383 prostatecanceruk.org 19
Fertility
Prostate cancer treatment can affect your sperm and ejaculation,
so you may not be able to have children naturally after treatment.
Pain
If you have cancer that has not spread outside the prostate gland
(localised prostate cancer) you are unlikely to have pain from
your cancer, although you might do after treatment. After surgery
(radical prostatectomy) some men have pain in the weeks they
are recovering, but pain-relieving drugs such as paracetamol or
codeine can help.
If you have prostate cancer that has spread outside of the prostate
gland (advanced prostate cancer) you might have some pain that
needs controlling. This is normally if the cancer has spread to the
bones. If prostate cancer grows in the bones, it weakens them and
can cause pain.
Read more about ways to control pain in our Tool Kit fact sheet,
Managing pain in advanced prostate cancer. You can read
more about managing the symptoms of advanced cancer in our
booklet, Advanced prostate cancer: Managing symptoms and
getting support.
22 Living with and after prostate cancer
Bone thinning
Long-term treatment with hormone therapy can make your bones
weaker. This can happen, for example, with luteinizing hormone-
releasing (LHRH) agonists, gonadotropin-releasing hormone
(GnRH) antagonists or surgery to remove the testicles.
If the bones are very weakened, this can lead to a condition called
osteoporosis, which can increase your risk of bone fractures.
Find out about the symptoms in our fact sheet, Metastatic spinal
cord compression (MSCC).
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Helpline 0800 074 8383 prostatecanceruk.org 25
Diet
A healthy diet will benefit your general health and reduce your risk of
medical problems such as heart disease, diabetes and other cancers.
There is also some evidence that certain foods may slow down
the growth of prostate cancer or reduce the risk of it returning after
treatment. Other foods might make your prostate cancer worse. At
the moment this evidence is limited and we need more research to
show clearly how different foods can help.
Read more about diet and prostate cancer in our Tool Kit fact
sheet, Diet, physical activity and prostate cancer.
If you’re having difficulty eating enough and you’re losing weight ask
your GP to refer you to a dietitian who can give you further advice.
A dietitian can also help if you are making big changes to your diet,
or if you have any other medical conditions that could be affected
by your diet, such as diabetes.
Helpline 0800 074 8383 prostatecanceruk.org 27
Physical activity
Physical activity is important for general health. It can help you to
keep a healthy weight by burning up spare energy which would
otherwise be stored by the body as fat. It’s not clear whether
exercise can help slow down the growth of prostate cancer, but it
can help with some of the side effects of treatment (see pages 9 to
23). It can also help you cope with feelings of anxiety or depression.
It’s safe for men with prostate cancer and those having treatment
to be physically active. It might be a good idea to speak to your
GP, nurse or hospital doctor before you start any kind of exercise
plan and get advice about exercising safely.
‘Moderate exercise’ means your heart should beat faster but you
should still be able to talk – about the level of a brisk walk.
You can get help with increasing your physical activity. Speak to
your doctor or nurse for advice about suitable exercise for you.
You could also ask to be referred to an exercise programme or a
physiotherapist for further advice.
Helpline 0800 074 8383 prostatecanceruk.org 29
Exercise safely
• Be careful to avoid falls, especially if you’re on hormone therapy
or if your cancer has spread to the bones – both can raise the
risk of fractures.
• Wear properly fitting clothing and trainers, and don’t exercise on
uneven surfaces.
• Make sure you drink enough water.
• Don’t exercise if you feel unwell, have any pain, sickness or any
other unusual symptoms. Stop if you experience any of these
while exercising.
• If you are having radiotherapy and have any skin irritation, avoid
swimming pools as the chlorine can make this worse.
Complementary therapies
Complementary therapies include a huge variety of approaches,
from diets to massage, from hypnotherapy to yoga. Some people
find that complementary therapies help them with their symptoms,
or with the emotional and day-to-day impact of their cancer,
helping them feel more in control.
Some men have found that herbal remedies can help with side
effects. Herbal remedies use plants or plant extracts.
Not all herbal remedies in the UK are licensed, and the quality
varies greatly. Be particularly careful about buying herbal remedies
over the internet. Often they 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’.
Lots of men find it useful to get some support or find ways to look
after themselves – even if their treatment has finished. Partners,
family members and friends also need support. There is no right or
wrong way to think and feel, and each person’s reaction to living
with prostate cancer will be different.
It‘s not unusual to feel worried or low if you have prostate cancer.
So if you’re feeling very down, worried or you’re finding it hard to
cope, speak to your GP, nurse or hospital doctor.
These are all normal reactions. These feelings may stay with you,
but some men find they gradually change with time.
Helpline 0800 074 8383 prostatecanceruk.org 37
You might find that making plans helps you feel more prepared
for what the future may hold, and reassured about the future for
your family.
You can read more about planning ahead and the support
available in our booklet, Advanced prostate cancer: Managing
symptoms and getting support.
Some men don’t want help from anyone else. Trying to block out
difficult emotions can be a strategy that works for some men. This
could be through doing something enjoyable as a distraction, like
physical activity.
But other men try to cope on their own because they are too
embarrassed to talk about it or afraid of worrying loved ones. They
may feel like they have to think positively and to not share any
negative feelings. Or to live up to how they think society expects
men to behave – that men can’t ask for help.
Talking about things that trouble you could help you deal with
them. One study found that men who talked about their emotions
felt better.
And for some men, carrying on with everyday activities and finding
ways to look after themselves helps boost their self-esteem. Taking
control might help you feel better about things.
Helpline 0800 074 8383 prostatecanceruk.org 39
A common worry for men with prostate cancer is how to tell their
family or friends that they have cancer. Talking is a good way to
overcome this worry, but that’s not always easy. It can be hard
to know where to start, but Macmillan Cancer Support produce
information that can help.
Online community
If you have access to the internet, join our online community, where
men and their families share their experiences of prostate cancer.
It’s free and only takes a few minutes to register. Visit our website
prostatecanceruk.org to sign up.
Health professionals
You can talk to your nurse, doctor or any other health professionals
you see about how you are feeling. You can also speak to our
Specialist Nurses on our confidential helpline.
Counselling
It’s sometimes hard to speak to those closest to you because you
don’t want to upset them or show your emotions. Some people
find it easier to talk to someone they don’t know – which is where
a counsellor might come in. They’re trained to listen and can help
you to find your own ways to deal with things. For some men,
talking to a counsellor is a good way to offload their worries.
There are different types of counselling. So if it’s not working out with
one counsellor, you could try a different approach with another.
Medicine
Sometimes anti-depressant medicine is helpful for people with
cancer who are depressed. Speak to your doctor about this. Before
you start taking anti-depressants, make sure you tell your doctor
or nurse about any other medicines or complementary therapies
you are taking. And if you take complementary therapies, let those
therapists know about any prescription drugs you’re taking.
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Helpline 0800 074 8383 prostatecanceruk.org 43
You and your family may go through some issues, such as:
• changing priorities
• interrupted plans
• side effects like tiredness
• changes to the usual roles of your relationship.
Some couples and families find that they can deal with these
issues, learn to live with them or overcome them. Different
approaches might help.
• Try not to rely only on each other – a wider support network
could include other family, friends or health professionals.
• Make sure you get some advice or help if you have practical
pressures such as with work, money or household tasks.
• Get support for any relationship or communication difficulties.
• Find ways to manage or treat your side effects.
44 Living with and after prostate cancer
Couples
As well as the issues above, prostate cancer can also have an
effect on intimacy and your sex life.
Talking about it
If you have a partner, or are starting a new relationship, try to talk
to them about how you are feeling. Talking could help you and
your partner feel better and reduce any worries you have about
what each other is thinking. Talking may also help your partner
understand more about any physical and emotional changes you
are going through.
Make sure you make time for yourself. Try to keep up with hobbies
and seeing friends. It’s important to look after your own health as
well. If you are feeling unwell, tired or down make sure that you see
your own GP. You might also find that seeing a counsellor can help
you work through any concerns.
You might need to make decisions about work and money. This
section looks at managing these and other practical issues, like
getting around and help at home.
Work
How can prostate cancer affect your working life?
You may need to take time off work for treatments. This includes
time for travelling to hospital and in some cases time to recover.
You can find out more about the law and working during and after
cancer treatment from Macmillan Cancer Support.
Helpline 0800 074 8383 prostatecanceruk.org 53
Most employers will be helpful and support you if you take time
off work and if you return. Where problems come up it might be
due to misunderstandings. However, not all employers are as
supportive as they should be. Some men say that even though
they have prostate cancer, they still ‘look okay’ so their boss
doesn’t understand that they are feeling unwell.
Know your legal rights. Find out more about the law and make
sure your boss or company is aware of it. You could also contact
your union if you are part of one. Contact Citizens Advice for
advice on your rights.
If you are self-employed or you’re looking for work, you can get
more specific information from Macmillan Cancer Support or
Disability Rights UK.
54 Living with and after prostate cancer
Money
If you’re struggling with the financial costs of cancer, or your
income has changed, you should be able to get some help.
Sick pay
If you’ve had time off work, find out if statutory sick pay and
occupational or company sick pay are relevant to you. Check your
employment contract or contact your local Citizens Advice Bureau
– their number should be in the phone book or on their website
citizensadvice.org.uk. You can get information from the official
government websites – GOV.UK and nidirect.gov.uk
Benefits
As a result of the Welfare Reform Act 2012 the benefits system will
be changing over the next few years. The organisations listed below
can give you the latest information about the help you can get.
Helpline 0800 074 8383 prostatecanceruk.org 55
The benefits you are entitled to vary depending on whether you are
working, how old you are and other factors. Find out more about
benefits and how to apply for them.
• Visit the websites GOV.UK or nidirect.gov.uk
• Contact your local Citizen’s Advice Bureau – they offer free,
independent, confidential and impartial advice. Their number
should be in the phone book or at www.citizensadvice.org.uk
• Call Macmillan Cancer Support to get advice on benefits.
Other costs
You might also be able to get help with the costs of travel to and
from hospital, and some other medical costs.
If you live in England and are having treatment for cancer, including
treatments for symptoms or side effects, you are entitled to
free prescriptions. Anyone over 60 in England also gets free
prescriptions. You’ll need to apply for a medical exemption
certificate. Ask your doctor for a FP92A form. Once you have filled
out the form, your doctor will need to sign it, and you will be sent
the certificate. You can find out more about free prescriptions at
NHS Choices. If you live in Scotland, Wales or Northern Ireland,
all prescriptions are free.
Travel insurance
Some men tell us that they find it harder to get travel insurance
because of their prostate cancer. Our Tool Kit fact sheet Travel
and prostate cancer gives tips on buying travel insurance.
Grants
Grants from other charities or organisations are available. Contact
Citizens Advice to find out which grants might be relevant to you.
56 Living with and after prostate cancer
Citizens Advice can give you free advice on how to manage your
finances. Alternatively you could consult an independent financial
adviser, who can let you know which companies offer the best
life assurance, mortgages, pensions and other financial services
for your situation.
The Motability Scheme can help you lease or buy a car if you get
certain benefits. Even if you don’t drive yourself, you can apply
for a car as a passenger and propose up to two other people as
your drivers. You could also be eligible to get help to adapt a car
you already have to make it more suitable. To find out more call
Motability on 0845 456 4566.
If you use public transport you might get discounts and free travel.
Contact your local council for more details. To find your local
council contact details:
• in England visit GOV.UK
• in Wales visit wales.gov.uk
• in Scotland visit cosla.gov.uk
• in Northern Ireland visit nidirect.gov.uk
Helpline 0800 074 8383 prostatecanceruk.org 57
In the home
Some men with prostate cancer have told us that they have
difficulty carrying out their usual activities. This could be because
of side effects, symptoms like pain, or because they are not as
mobile as they used to be.
If you think you could do with some extra help in the home, get in
touch with your GP or local council and ask about social services
(social work department in Scotland) to see if they can give you
some advice or support.
You can ask social services to assess your needs – and the
needs of your carer, if you have one. For example, this assessment
will consider:
• equipment or adaptations to your home
• help at home, for example with getting dressed, cooking
or tasks like housework or shopping
• breaks away from home for you or anyone who is caring for you.
A social worker can give you advice about practical issues such as
money, work and things to make day-to-day living easier. Your GP,
nurse or hospital doctor could also arrange for you to meet an OT
or social worker.
58 Living with and after prostate cancer
To order publications:
• Call us on 0800 074 8383
• Visit our website prostatecanceruk.org
Speak to our
Specialist Nurses
0800 074 8383*
prostatecanceruk.org
* Calls are recorded for training purposes only. Confidentiality is maintained between callers
and Prostate Cancer UK.
Helpline 0800 074 8383 prostatecanceruk.org 59
Age UK
www.ageuk.org.uk
Advice line 0800 169 6565
Information or advice for older people on a range of subjects
including health, finances and lifestyle.
CancerHelp UK
www.cancerhelp.org.uk
Nurse helpline 0808 800 4040
Cancer Research UK’s patient information resource.
Carers UK
www.carersuk.org
Advice line 0808 808 7777
Information and advice for carers, and details of local support groups.
Citizen’s Advice
www.citizensadvice.org.uk
Online advice: www.adviceguide.org.uk
Advice on a wide range of issues including financial and legal
matters. Find your nearest Citizens Advice Bureau on their website
or in the phonebook.
Diabetes UK
www.diabetes.org.uk
Helpline 0845 120 2960
Information about diabetes.
Disability Rights UK
www.disabilityrightsuk.org
Independent Living Advice Line 0845 026 4748
Practical information guides about disability rights and benefits.
And keys for accessible toilets across the UK.
GOV.UK
www.gov.uk
Information about UK government services, including benefits,
employment and money matters.
Maggie’s Centres
www.maggiescentres.org
Phone 0300 123 1801
A network of drop-in centres for cancer information and support.
Includes an online support group.
NHS Choices
www.nhs.uk
Information about treatments, conditions and lifestyle. Support for
carers and a directory of health services in England.
NHS 24
www.nhs24.com
Phone 08454 24 24 24
Health information and self care advice for people in Scotland.
Lists local NHS services including GPs and dentists.
Helpline 0800 074 8383 prostatecanceruk.org 63
NI Direct
www.nidirect.gov.uk
Government site providing information about practical and health
matters for people living in Northern Ireland.
Relate
www.relate.org.uk
Phone 0300 100 1234
Information, advice, relationship counselling and sex therapy.
In Scotland, contact Relationships Scotland instead.
Relationships Scotland
www.relationships-scotland.org.uk
Phone 0845 119 2020
Information, advice, relationship counselling and sex
therapy in Scotland.
64 Living with and after prostate cancer
Samaritans
www.samaritans.org
Helpline 0845 790 9090
Confidential, non-judgemental emotional support, 24 hours a day,
by telephone, email, letter or face to face.
Turn2US
www.turn2us.org.uk
Helpline 0808 802 2000
Help to access money that’s available through benefits, grants
and other help.
Helpline 0800 074 8383 prostatecanceruk.org 65
*You can donate up to £10 via SMS and we will receive 100%
of your donation. Texts are charged at your standard rate. For
full terms and conditions and more information, please visit
prostatecanceruk.org/terms
Speak to our
Specialist Nurses
0800 074 8383*
prostatecanceruk.org
The helpline is open Mon - Fri 9am - 5pm, plus Wed 7pm - 9pm
* Calls are recorded for training purposes only.
LWA/JUL13