1. health and fitness
2. disease
3. cancer

Advanced prostate cancer
Managing symptoms
and getting support
2
Advanced prostate cancer: Managing symptoms and getting support
About this booklet
This booklet is for you if you have prostate cancer that
has spread to other parts of the body and are experiencing
symptoms such as bone pain. This is called advanced
prostate cancer. If you are a partner or relative of a man with
advanced prostate cancer, you may also find it helpful. We
describe the possible symptoms you might experience, and
treatments for advanced prostate cancer. You can also find
information about emotional, practical and spiritual support.
This booklet is a general guide but everybody’s experience
of advanced prostate cancer is different. You may find it helpful
to dip into this booklet for the information that is relevant to you.
If you would like more detailed information you can speak to your
doctor or nurse at the hospital or your GP. You can also speak to
our Specialist Nurses by calling our confidential helpline.
The following symbols appear throughout the booklet to guide
you to sources of further information:
Prostate Cancer UK Specialist Nurse helpline
Prostate Cancer UK publications
If you would like to know more about anything you read
in this booklet, you can call our Specialist Nurses on our
confidential helpline.
Helpline 0800 074 8383
prostatecanceruk.org
What is palliative care?
If you have advanced prostate cancer, you may hear
the term palliative care. Palliative care aims to relieve pain
and other symptoms. It also provides men with emotional,
physical, practical and spiritual support to help deal with
advanced prostate cancer.
Palliative care can be provided at any stage of advanced
prostate cancer. It is not just for men in the final stages
of life. Men with advanced prostate cancer might have
palliative care for many months or years.
The photos in this booklet are of people personally affected
by prostate cancer. The personal experience quotations we
use are not always attributed to the photos they accompany.
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Advanced prostate cancer: Managing symptoms and getting support
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prostatecanceruk.org
Contents
About this booklet
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What is advanced prostate cancer?
What symptoms might I get?
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Treatments for advanced prostate cancer
Your health and social care professionals
Coping emotionally
Relationships
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Daily life with advanced prostate cancer
Thinking about the future
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Medical terms used in this booklet
More information from us
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Other useful organisations
About Prostate Cancer UK
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7
11
31
37
43
49
53
59
62
64
65
73
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What is advanced prostate cancer?
Advanced prostate cancer is cancer that has spread from
the prostate to other parts of the body, most commonly
the bones. You might also hear it called metastatic prostate
cancer. Advanced prostate cancer is not curable. But there
are treatments that can keep the cancer under control for
many months or years (see page 31).
If the cancer starts to grow again and cause symptoms, there
are treatments available that can control these symptoms.
Dad’s cancer had spread to his bones when
he was diagnosed. He lived life to the full
for over five years before any symptoms
bothered him.
A personal experience
7
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Advanced prostate cancer: Managing symptoms and getting support
Where does prostate cancer spread to?
Prostate cancer can spread to any part of the body, but most
commonly to the bones and lymph nodes. Prostate cancer can also
spread to, or press on, the tube that carries urine through the penis
(urethra), the bladder, the tubes that carry urine from the kidneys to
the bladder (ureters) and part of the bowel (rectum).
spine
lymph
nodes
kidneys
ureter
lymph
vessel
bladder
bones
urethra
prostate
gland
More rarely, prostate cancer may spread to the lungs, liver and
brain. Macmillan Cancer Support has more information about
cancer that has spread here.
You might hear the cancer that has spread described as secondary
prostate cancer, metastases or secondaries.
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What is my outlook?
Many men want to know how successful their treatment is likely
to be in controlling their cancer. This is sometimes called your
outlook or prognosis. No one will be able to tell you exactly what
your outlook is, as every cancer is different. And not everyone
wants to know about their outlook. But if you do, speak to your
doctor. They can talk to you about your individual situation.
Some people find it helpful to discuss their outlook so that they can
make plans for the future. You can read more about this on page 59.
Although it’s not possible to cure advanced prostate cancer,
hormone therapy might control it for many months or years.
And when hormone therapy stops working, there are other
treatments available to keep the cancer under control.
There are also treatments to help manage symptoms,
including radiotherapy and drugs to treat bone pain called
bisphosphonates (see page 31).
It can be very difficult living with the uncertainty of cancer, but there
is support available if you need it. This includes:
t help to manage symptoms (see page 11)
t emotional support (see page 43)
t practical support (see page 53).
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Advanced prostate cancer: Managing symptoms and getting support
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What symptoms might I get?
The symptoms you have will depend on where the cancer has
spread to. You might get only a few symptoms, and there are
usually treatments available to manage them. But the cancer may
spread further over time, causing more symptoms. However, this
doesn’t always happen and not all cancer that has spread will
cause symptoms that affect you day to day.
Fatigue (extreme tiredness)
Fatigue is a range of feelings from tiredness to exhaustion, which
makes it hard to carry out your daily activities. You may feel weak,
lethargic, knackered or drained. It can affect your energy levels,
motivation, ability to concentrate, emotions and sex drive. Many
men find it difficult to cope with. And it is not always relieved by
rest alone.
Fatigue might be caused by the cancer itself, by treatments,
or by other conditions such as anaemia. (See page 22 for more
information about anaemia.) Anxiety and depression (see page 43)
can also cause fatigue.
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Tell your doctor or nurse if you are having problems with fatigue.
Depending on the cause, fatigue can be managed, for example,
by controlling pain.
There are also changes you can make to your lifestyle that could
help. These include:
t being physically active
t organising your day
t planning activities for when you know you will have more energy
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Advanced prostate cancer: Managing symptoms and getting support
t dealing with any problems sleeping
t eating healthily
t complementary therapies.
Some of these changes may be difficult to make, so take things
gradually. For example, it can be difficult to be more active if you
are having problems with mobility or feel unwell.
We have a telephone support service called Get back on track
that can help with managing fatigue. Find out more on our website
at prostatecanceruk.org. You can also speak to our Specialist
Nurses by calling our confidential helpline. Macmillan Cancer
Support also produce a booklet called Coping with fatigue.
Pain
Pain is a common problem for men with advanced prostate
cancer. The cancer can cause pain in the areas that it has spread
to. For example, if prostate cancer spreads to the bones, it can
damage the bones, causing pain. But it won’t always cause pain,
and even if cancer has spread to several places, there might only
be pain in a few of these areas.
You might get other types of pain. For example, if the cancer
presses on a nerve, this can cause pain. This pain might be
shooting, stabbing, burning, tingling or numb. If cancer has spread
to the lymph nodes, it might make them swollen and uncomfortable.
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Pain can also be a symptom of a more serious condition called
metastatic spinal cord compression (MSCC). See page 23 for
more about MSCC.
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8IBUDBOIFMQ
With the right treatment, pain can usually be relieved or reduced.
You should not have to accept pain as a normal part of having
cancer. And the earlier the pain is treated, the easier it will be to
control it, so tell your GP or doctor or nurse at the hospital as
soon as possible. Different types of pain are treated in different
ways. To find the right way to deal with it, you might have a pain
assessment and be referred to a palliative care specialist.
Treatments to control pain include:
t treatment for the prostate cancer itself, such as
hormone therapy, chemotherapy or steroids
t treatment for the pain, such as pain-relieving drugs,
radiotherapy or drugs called bisphosphonates which
treat bone pain
t complementary therapies.
These treatments are described in the next section of this booklet.
You can also read more about pain, how it is assessed and treated
in our Tool Kit fact sheet, Pain and advanced prostate cancer.
Five sessions of radiotherapy on my hip
over one week magic-ed all the pain away
for more than a year, allowing me to lead
a normal life again.
A personal experience
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Advanced prostate cancer: Managing symptoms and getting support
Urinary problems
You might get urinary problems if the cancer has spread to areas
around the prostate, urethra and bladder (the urinary system).
These might include:
t problems emptying your bladder
t leaking urine
t blood in your urine
t kidney problems.
Urinary problems can also be caused by other things such
as an infection or previous treatments for prostate cancer.
Speak to your doctor or nurse if you have any of the symptoms
described below so they can investigate the cause and find the
right treatment. If your symptoms are not causing you problems,
you may not need treatment.
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If the cancer is pressing on the urethra, causing it to narrow, you
might have problems emptying your bladder fully. This is called
urinary retention.
You may need to use a catheter to drain the urine. A catheter is a thin
tube that is inserted through your penis, or through your abdomen,
into your bladder. Men often worry about having a catheter inserted,
but it should not be painful and your nurse will show you how to look
after it. Read more about catheters in our Tool Kit fact sheet, Urinary
problems after prostate cancer treatment.
Some men may have an operation called a transurethral resection
of the prostate (TURP). A TURP widens the urethra, which makes
it easier to pass urine. You can read more in our fact sheet,
Transurethral resection of the prostate (TURP). An operation
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may not be appropriate for all men. Speak to your doctor or nurse
about whether it might be right for you.
If you are suddenly unable to pass urine (acute retention) you
should get treatment straight away – for example, at a hospital
accident and emergency (A&E) department. The doctor may
need to drain your bladder using a catheter. Acute retention is
extremely painful and needs urgent treatment. Otherwise urine
will build up in the bladder and may cause infection, bladder
stones or problems with your kidneys.
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If the cancer has grown into the bladder or any of the muscles
that control urination, it can weaken them, and you might leak
urine (incontinence) or need to urinate urgently.
If you leak urine there are things that can help. These include:
t incontinence products such as absorbent pads
t pelvic floor muscle exercises to strengthen the muscles that
control urination
t medicines called anti-cholinergics, such as solifenacin
succinate (Vesicare®)
t a catheter.
You can read more about these treatments in our Tool Kit fact
sheets, Urinary problems after prostate cancer treatment
and Pelvic floor muscle exercises.
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Rarely, problems emptying your bladder or having no control
over when you empty it may be caused by a condition called
metastatic spinal cord compression (MSCC). See page 23 for
more about MSCC.
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Advanced prostate cancer: Managing symptoms and getting support
#MPPEJOZPVSVSJOF
Some men notice blood in their urine (haematuria). This may be
caused by bleeding from the prostate. This can be alarming, but
it can usually be controlled.
You might need to stop taking medicines that prevent the blood
clotting, such as aspirin or warfarin. But speak to your GP or
hospital doctor or nurse before you stop taking any medication.
You might also be able to have surgery or radiotherapy to stop
the bleeding.
,JEOFZQSPCMFNT
The kidneys remove waste products from the blood and produce
urine. If prostate cancer spreads to the nearby lymph nodes or the
bladder, it can cause problems with how well your kidneys work.
Between three and sixteen out of one hundred men with advanced
prostate cancer (3 to 16 per cent) develop kidney problems.
Kidney problems can lead to high levels of waste products in your
blood. This can cause a serious condition called kidney failure.
Symptoms of severe kidney problems include tiredness and lack
of energy, feeling sick, swollen ankles and feet from fluid retention,
and poor appetite. If you have any of these symptoms tell your
GP or hospital doctor or nurse as they could also be caused by
something else.
There are treatments available that can help to drain the urine from
the kidneys, including:
t a tube inserted into the kidney to drain urine into a bag outside
your body (nephrostomy)
t a tube (called a stent) inserted to allow urine to flow from the
kidney to the bladder
t radiotherapy to shrink the cancer and reduce the blockage.
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Urinary problems might affect your self-esteem and sense of
independence. If you are finding it hard to deal with, speak to
your nurse or GP for help and advice.
Your GP can put you in touch with your local NHS continence
service. The service is run by specialist nurses and physiotherapists.
They can give you advice and support about treatments and
products to help.
For more about managing these problems, read our Tool Kit
fact sheet, Urinary problems after prostate cancer treatment,
or speak to our Specialist Nurses on our confidential helpline.
The Bladder and Bowel Foundation also provides information,
including details of your local NHS continence service.
Bowel problems
Bowel problems can include passing loose and watery stools
(diarrhoea), needing to rush to the toilet (rectal urgency), leaking
stools (faecal incontinence), difficulty emptying your bowels
(constipation) or pain around the stomach area (abdomen) or back
passage. Speak to your doctor or nurse at the hospital or your GP
if you have any of these symptoms. There are treatments available
that may help.
Men with advanced prostate cancer might develop bowel problems
for a variety of reasons. Radiotherapy to treat prostate cancer
can cause bowel problems. You might get these problems during
treatment, or they might develop months or years later.
Pain-relieving drugs such as morphine and codeine can cause
constipation. Don’t stop taking these drugs, but do speak to your
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Advanced prostate cancer: Managing symptoms and getting support
GP if you notice these side effects. They should give you a medicine
to make it easier to empty your bowels (a laxative). Read more in
our Tool Kit fact sheet, Pain and advanced prostate cancer.
Constipation can also be caused by becoming less mobile,
changes in your diet or not drinking enough.
Prostate cancer can spread to part of the bowel (rectum) but this
is uncommon. If this does happen, it can cause a blockage in the
bowel which causes symptoms including constipation, pain and
bleeding. Radiotherapy can help with the pain and bleeding.
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Rarely, problems emptying your bowels or having no control
over emptying them might be caused by metastatic spinal
cord compression (MSCC). See page 23 for more about MSCC.
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Lifestyle changes
If you are having problems with constipation, a diet with plenty
of high fibre foods can help. These include fruit and vegetables,
wholemeal bread, wholegrain breakfast cereals and porridge. Drink
plenty – aim for about two litres (eight glasses) a day. If possible,
gentle exercise such as going for a walk can also help.
Depending on the cause of your constipation, your GP or nurse may
prescribe you laxatives so it’s easier for you to empty your bowels.
If you are having problems with diarrhoea, cutting down on
fibre in your diet for a short time may help. Low fibre foods
include white bread, white rice and pasta, potatoes (without
the skins) and cornmeal. Drink plenty of fluids, but avoid
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alcohol, coffee and fizzy drinks. Avoiding spicy food and
reducing the amount of dairy products, such as milk and
cheese, may also help.
Read more about diet in our Tool Kit fact sheet, Diet, physical
activity and prostate cancer.
Information and support
Living with bowel problems can be distressing. Some men feel
isolated or too embarrassed to talk about their problems. But
remember that GPs and nurses see many men about these kinds
of issues, and they can give advice and support. You could also
ask your GP to refer you to your local continence service. Their
specialist nurses will be able to give further advice and support to
help you deal with things.
Macmillan Cancer Support and the Bladder and Bowel Foundation
provide more information about bowel problems and treatments
that can help.
Broken bones (fractures)
The most common place for prostate cancer to spread to is
the bones. The cancer can damage bones, making them
weaker and increasing your risk of broken bones (fractures).
Some types of hormone therapy can also cause bone thinning
which increases your risk of broken bones.
Read more about the bone thinning caused by hormone therapy
and ways to reduce your risk in our booklet, Living with hormone
therapy: A guide for men with prostate cancer.
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Advanced prostate cancer: Managing symptoms and getting support
Damage to the bones can make it difficult or painful to move
around. If you’re used to being active, this can be hard to accept.
The information on page 54 might be helpful.
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If there is an area of bone that has been badly damaged,
surgery might help to strengthen it. A metal pin or plate is
inserted into the bone to stabilise the affected area. This is
done under general anaesthetic. Whether surgery is appropriate
will depend on where the damaged bone is, and other factors
such as whether you are well enough for surgery. If you do have
an operation, you may have radiotherapy afterwards to help
prevent the cancer growing in that area.
Some doctors give drugs called bisphosphonates to reduce the
risk of broken bones. Bisphosphonates are also used to treat bone
pain. Read more in our Tool Kit fact sheet, Bisphosphonates.
The National Osteoporosis Society provides more information and
support about fragile bones.
Sexual problems
Coping with advanced prostate cancer and living with the
side effects of treatment can have an impact on your sex life.
Treatments for prostate cancer, including hormone therapy,
surgery and radiotherapy, can cause problems getting and
keeping an erection (erectile dysfunction). Hormone therapy may
also reduce your desire for sex (libido), and there is no treatment
to improve your libido while you are on hormone therapy. Because
sex is also about how we think and feel, feeling low or anxious
can affect your erections and desire for sex.
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If you are feeling very tired this can also affect your sex life.
You might lose interest in sex or not have enough energy for it.
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If having sex is important to you or your partner, then you can still
try treatment even if your sex drive is reduced.
You could try to find creative ways around these problems – such
as trying sex in a different position, where you do not have to move
around much. Or you might prefer to have sexual contact for just
a few minutes at a time and take breaks. Sometimes just holding
hands or cuddling can be enough.
If you have a catheter (see page 14), it is still possible to have
sex. Speak to your nurse about your options. The Bladder and
Bowel Foundation have information about having sex if you have
urinary problems.
If you are in a relationship you may need to have time alone
together, whatever your situation. If you are in a hospital, hospice
or have carers coming to your house, make sure they know when
you need some private time together.
There are treatments and support available for sexual problems.
Speak to your GP or doctor or nurse at the hospital to find
out more. They can refer you to a specialist service such as
an erectile dysfunction (ED) clinic. Read more in our booklet
Prostate cancer and your sex life. You may also find the
information on page 49 helpful.
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Advanced prostate cancer: Managing symptoms and getting support
Anaemia
Some men with advanced prostate cancer may develop a condition
called anaemia. Symptoms of anaemia include tiredness, lack of
energy (lethargy), breathlessness and looking pale.
Anaemia is when blood has fewer red blood cells than usual.
Red blood cells are made by the bone marrow. They carry oxygen
around the body. Anaemia can be caused when your bone marrow
is damaged – either by the prostate cancer or by treatment such as
chemotherapy or radiotherapy.
Sometimes anaemia is caused by a lack of iron in your diet. This
might be a risk if you have problems eating.
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Speak to your GP or doctor or nurse at the hospital if you have any
of the symptoms of anaemia. You will have a blood test to check
your red blood cell levels. The right treatment will depend on what’s
causing your anaemia.
If you have very low levels of red blood cells, you may need to have
a blood transfusion. Blood is given through a tube (drip) into a vein
in your arm. The transfusion will increase the number of red blood
cells and can be a quick and effective way of treating anaemia.
Occasionally, your doctor may recommend that you take
iron supplements to help with anaemia. However, these
can cause constipation. See page 17 for information about
managing constipation.
Macmillan Cancer Support and CancerHelp UK provide more
information about anaemia.
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Metastatic spinal cord compression (MSCC)
Prostate cancer can spread to the bones of the spine (vertebrae).
This can lead to a complication called metastatic spinal cord
compression (MSCC). This happens when the cancer presses on
the spinal cord. MSCC is not common and we don’t know how
many men with prostate cancer develop it. But if it does happen,
you need to get treatment as soon as possible as it is a serious
condition. Speak to your doctor or nurse for more information
about your risk.
MSCC can cause any of the following symptoms.
t Pain or soreness in your lower, middle or upper back or neck
which is severe or different from usual pain. The pain might get
worse when you cough, sneeze, lift or strain, or go to the toilet.
It might get worse when you are lying down and it might wake
you at night or stop you from sleeping.
t A narrow band of pain around your tummy or chest which can
move towards your lower back, buttocks or legs.
t Pain that moves down your arms or legs.
t Weakness in your arms or legs, or difficulty standing or
walking. You may feel unsteady on your feet or feel like
your legs are giving way. Some people say they feel clumsy.
t Numbness or pins and needles in your legs, arms, fingers, toes,
buttocks, stomach area or chest, that does not go away.
t Problems controlling your bladder or bowel. You might be unable
to empty your bladder or bowel, or you might have no control
over emptying them.
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Advanced prostate cancer: Managing symptoms and getting support
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These symptoms can also be caused by other conditions,
but it is still important to get urgent medical advice in case
you do have MSCC.
Read more about MSCC and how it is treated in our fact sheet,
Metastatic spinal cord compression.
Hypercalcaemia
Hypercalcaemia is an increase in the amount of calcium in your
blood. Calcium is usually stored in the bones, but the cancer can
cause too much of it to be released into the blood. Hypercalcaemia
is not common in men with advanced prostate cancer. About
one man in a hundred (one per cent) get it. But if you do develop
hypercalcaemia, it’s important that it’s treated, otherwise it will
gradually get worse and may develop into a serious condition.
Symptoms of hypercalcaemia include:
t tiredness (fatigue) and lack of energy (lethargy)
t loss of appetite
t weakness
t difficulty emptying your bowels (constipation)
t confusion
t feeling and being sick (nausea and vomiting)
t pain in your stomach area (abdomen)
t thirst
t needing to pass urine frequently.
These symptoms can be quite common in men with advanced
prostate cancer and might not be caused by hypercalcaemia.
Tell your hospital doctor or nurse or your GP if you have any of
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these symptoms so that they can find the cause. They will do a
blood test to check the amount of calcium in your blood. They
may also do other tests and ask you about your symptoms.
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If the tests show that you have hypercalcaemia, you may have
to go into hospital or sometimes a hospice for a couple of days
to get your calcium levels down to normal. You will be given fluid
through a drip in your arm. This will help to flush excess calcium
out of your blood.
Medicines called bisphosphonates are the main treatment for
hypercalcaemia. They are very effective at reducing the levels of
calcium in your blood. They will usually start to work in two to four
days. If your blood calcium levels are still high, you may be given
another dose of bisphosphonates after a week. Read more in our
Tool Kit fact sheet, Bisphosphonates.
Once the levels of calcium in your blood have returned to normal,
you will have regular blood tests to keep an eye on them. Tell your
doctor or nurse if any of the symptoms of hypercalcaemia return.
If your cancer is very advanced, it may not be possible to bring the
levels of calcium in your blood back to normal. Your doctors should
make you as comfortable as possible by controlling any symptoms
you may have.
CancerHelp UK provides more information about hypercalcaemia.
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Advanced prostate cancer: Managing symptoms and getting support
Lymphoedema
Lymphoedema is caused by a blockage in part of the body’s
immune system called the lymphatic system. This is made up
of lymph nodes (sometimes called lymph glands) and a network
of lymph vessels – the tubes which carry fluid called lymph
around the body (see diagram on page 8). If the lymphatic system
is blocked or damaged, the fluid can build up in the body’s tissues
and cause swelling. This is lymphoedema.
Some of the lymph nodes are in the groin and pelvic area – near
the prostate. If prostate cancer spreads to this area, it can damage
the lymphatic system. The cancer might spread to the lymph
nodes or to surrounding tissues and press on the lymph vessels.
The lymphatic system can also be affected by some treatments
for prostate cancer, such as surgery or radiotherapy. You may
be at greater risk of lymphoedema if you have had surgery or
radiotherapy on the lymph nodes.
Symptoms include:
t swelling in the affected area or limb, for example in the leg
t pain and discomfort in the affected area
t tight, sore skin which may crack and become infected.
Lymphoedema in prostate cancer usually affects the legs,
but it can affect other areas, including the penis or scrotum
(that contains the testicles).
Lymphoedema can affect your daily life. You might find that you are
less able to move around and that it’s harder to carry out everyday
tasks like dressing. Some men find it knocks their confidence.
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8IBUDBOIFMQ
Speak to your nurse or GP if you have any of the symptoms
of lymphoedema. There are treatments available to manage it,
although they cannot cure it. Treatments aim to reduce or stop
the swelling and make you more comfortable. They are most
effective if started at an early stage.
If you are diagnosed with lymphoedema, you may be referred to a
specialist lymphoedema nurse. They can show you how to manage
the swelling and provide advice and emotional support. They are
often based in hospices.
There are a variety of treatments which might help.
t Caring for the skin, such as regular cleaning and moisturising,
helps to keep the skin soft and reduces the risk of infection.
t Avoiding any damage to the skin, such as sunburn or cuts,
reduces the risk of infection.
t Special massage (manual lymphatic drainage) can help to
increase the flow of lymph. Your lymphoedema nurse might be
able to show you or your partner how to do this.
t Gentle exercise may help to improve the flow of lymph.
t Using compression bandages or compression stockings can
help to encourage the lymph to drain from the affected area.
Your lymphoedema nurse will show you how to use them.
t Wearing special underwear may support and control the swelling
if you have lymphoedema in your penis or scrotum. Lycra cycling
shorts might also help in a similar way.
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Advanced prostate cancer: Managing symptoms and getting support
t Try to maintain a healthy weight as being overweight can make
lymphoedema harder to manage. Read more about a healthy
weight in our Tool Kit fact sheet, Diet, physical activity and
prostate cancer.
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Living with lymphoedema can be difficult. If you need more support,
speak to your specialist nurse, GP or lymphoedema nurse. They
can provide practical and emotional support. Your GP can also refer
you to a counsellor to help you deal with how you are feeling.
Macmillan Cancer Support and the Lymphoedema Support
Network provide more detailed information about lymphoedema.
They can put you in touch with local support groups where you can
meet other people with experience of lymphoedema.
Eating problems
Some men with advanced prostate cancer have difficulties eating,
or have a poor appetite. You might feel or be sick (nausea or
vomiting) because of your cancer or as a side effect of some
treatments, including opioid pain relief (for example, morphine),
chemotherapy, radiotherapy and bisphosphonates. Worrying
about things can also affect your appetite.
Problems eating or loss of appetite can lead to weight loss and can
make you feel very tired and weak.
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If you feel sick because of your treatment, your doctor can give you
anti-sickness medication. Steroids can also increase your appetite
and are sometimes given along with other treatments.
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29
Try to eat small amounts regularly. If the smell of food is putting you
off, try to avoid strong smelling foods and if possible, ask someone
else to cook your food. Try to eat when you feel less sick, even if
these are not your usual mealtimes. Fatty and fried foods can make
nausea worse. Drink plenty, but drink slowly and try not to drink too
much before you eat.
Tell your doctor if you are losing weight. They can refer you to a
dietitian, who can provide advice about high calorie foods and any
supplements that might be helpful. It can be upsetting for your
family to see you losing weight, and they may need support to help
you with eating.
Macmillan Cancer Support and Marie Curie Cancer Care both
provide information and support about eating problems in
advanced cancer.
30
Advanced prostate cancer: Managing symptoms and getting support
Helpline 0800 074 8383
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31
Treatments for advanced
prostate cancer
Men with advanced prostate cancer are usually offered hormone
therapy, which can keep the cancer under control for many
months or years. But over time your cancer might start to grow
again. If this happens, the cancer is no longer responding to the
original hormone therapy, but might still respond to other types
of hormone therapy or to other treatments. Read more about this
in our Tool Kit fact sheet, Second-line hormone therapy and
further treatment options.
You may also be offered treatments to relieve symptoms and
reduce any pain.
Your treatment will depend on your symptoms, your general health
and what treatments you have already had. A combination of
different treatments is often useful.
All treatments can cause side effects, and you may want to think
about the advantages and disadvantages of any treatment that
you are offered.
You can read more about the treatments described on the next
pages in our Tool Kit fact sheets.
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Advanced prostate cancer: Managing symptoms and getting support
Hormone therapy
Hormone therapy shrinks the cancer wherever it is in the body,
slowing its growth. This helps to reduce or prevent symptoms.
As with all treatments, hormone therapy may have side effects,
such as erection problems, hot flushes and fatigue. You can read
more about hormone therapy, including ways to manage side
effects, in our booklet, Living with hormone therapy:
A guide for men with prostate cancer.
Pain-relieving drugs
There are different types of pain-relieving drugs, including:
t mild pain-relieving drugs such as paracetamol, or
non-steroidal anti-inflammatory drugs such ibuprofen
t weak opioids such as codeine which provide moderate
pain relief
t stronger opioids such as morphine.
Some men worry about becoming addicted to opioids like
morphine. If you are taking morphine to relieve pain, addiction is
unlikely. You might not need the strongest type of pain-relieving
drugs, and the dose will be carefully controlled by your doctor.
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33
Radiotherapy
Radiotherapy can shrink the cancer. It’s used to manage symptoms
such as pain, blood in your urine or discomfort from swollen lymph
nodes. It’s also used to treat metastatic spinal cord compression.
If you are having radiotherapy to relieve pain, it may be a week or
more after treatment before your pain starts to improve. You might
even experience an increase in pain during, and for a few days
after, treatment but this should soon improve. It usually takes a few
weeks for radiotherapy to have its full effect.
Bisphosphonates
Bisphosphonate drugs treat pain caused by cancer that
has spread to the bones. They can bind to damaged areas
of bone and slow down the breakdown of bone. This helps
to strengthen the bone and relieve pain. They are also used
to treat hypercalcaemia (see page 24).
Chemotherapy
Chemotherapy involves using anti-cancer (cytotoxic) drugs to kill
cancer cells. This shrinks the cancer and slows its growth. It does
not cure prostate cancer but can help to control symptoms such
as pain.
34
Advanced prostate cancer: Managing symptoms and getting support
Clinical trials
Clinical trials are a type of medical research study that aims to
find new and improved ways of treating an illness. They test new
medicines and procedures on people in a controlled way. There
are a number of trials that are looking into treatments for advanced
prostate cancer. You can find details of prostate cancer trials on the
CancerHelp UK website.
Complementary therapies
Some people find that complementary therapies help them
with cancer symptoms. They can also help you cope emotionally
and feel more in control. There are many different types of
complementary therapy including acupuncture, massage,
reflexology, hypnotherapy and relaxation techniques.
Many hospices offer these.
Complementary therapies are used alongside conventional
treatments, rather than instead of them. 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.
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35
When you choose a therapist, make sure they are properly trained
and belong to a professional body. Organisations such as the
Complementary and Natural Healthcare Council will be able to give
you advice about finding a therapist. Macmillan Cancer Support
and CancerHelp UK provide more information on the different types
of complementary therapy available and important safety issues to
consider when choosing a therapy.
Keeping your own record of treatment and
medication can be very useful. Out-of-hours
and A&E staff may not be able to access your
medical notes.
A personal experience
36
Advanced prostate cancer: Managing symptoms and getting support
Helpline 0800 074 8383
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37
Your health and social
care professionals
You might see a range of different professionals to help manage
your symptoms and offer emotional and practical support. Some
may have been treating you since your diagnosis. Others provide
specific services or specialise in palliative care.
Your multi-disciplinary team (MDT)
This is the team of professionals involved in your care. Exactly
who you see depends on the support you need, but your MDT
might include an oncologist, a urologist, a clinical nurse specialist
or Macmillan nurse, and a palliative care doctor or nurse.
Services vary depending on where you live.
Your GP and district nurse
Your GP (general practitioner) and district or community nurse will
work with other health professionals to co-ordinate your care and
offer you support and advice throughout your treatment. They can
also refer you to local services. They can visit you in your home and
also help support your family.
Specialists
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You might still see a consultant urologist or consultant oncologist
at the hospital. Urologists are surgeons who specialise in the
treatment of diseases of the urinary system. Oncologists specialise
in treating cancer with treatments other than surgery, such as
chemotherapy or radiotherapy.
38
Advanced prostate cancer: Managing symptoms and getting support
$MJOJDBMOVSTFTQFDJBMJTUT
Clinical nurse specialists (CNS) are nurses who provide care and
advice in managing prostate cancer and side effects, along with
emotional support. For example, you might see a urology clinical
nurse specialist at the hospital.
Specialist palliative care services
1BMMJBUJWFDBSFUFBNT
These teams include professionals such as specialist palliative
care nurses and doctors. They provide treatment to manage pain
and other symptoms of advanced cancer. They can also offer
emotional and spiritual support for you and your family. They
work in hospitals and hospices, but they might be able to visit
you at home. Your hospital doctor, nurse or GP can refer you
to a palliative care team.
You might hear your palliative care nurse called a Macmillan nurse.
But Macmillan nurses aren’t always palliative care nurses. This will
depend on your local services.
The specialist palliative care consultant
was part of the palliative care team that
my oncologist had recommended. She was
able to identify my needs and recommended
medications that meant they were able to
minimise the pain.
A personal experience
Helpline 0800 074 8383
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39
)PTQJDFT
Hospices provide a range of services including treatment to
manage symptoms, emotional and spiritual support, practical
and financial advice and support for families.
Hospices don’t just provide care for those at the end of
their life. Some people go into a hospice for a short time
to get their symptoms under control before going home again.
For example, they might provide treatment with bisphosphonates
for hypercalcaemia or give blood transfusions for anaemia.
Some hospices have nurses who can visit you at home,
and some provide day therapy, such as complementary therapy
or lymphoedema care. This lets you use their services while still
living at home.
Your GP, doctor or district nurse can refer you to a hospice service.
Find out more from Help the Hospices, Marie Curie Cancer Care
and Sue Ryder.
We are not in the position of needing the
hospice’s specific help at the moment, but
they have already visited us at home twice,
and we have been there. The nurse is there
for my husband. I had some counselling too
and this has helped us get back on our feet.
A personal experience
40
Advanced prostate cancer: Managing symptoms and getting support
.BSJF$VSJFOVSTFT
Marie Curie nurses provide nursing care to people in the last
few months or weeks of life. They visit people at home and
often provide care overnight. They also offer practical advice
and emotional support to you and your family. They help to give
partners and family members a break so that they are able to
rest. Your district nurse can arrange a Marie Curie nurse for you.
Services vary depending on where you live. In some areas, a
hospice may provide this care rather than Marie Curie nurses.
Other professionals who can help
Your doctor, nurse or GP can refer you to these professionals.
t Physiotherapists provide advice about exercises to help
improve mobility and fitness.
t Counsellors or psychotherapists can help you work through
any difficult feelings and find ways of coping.
t Dietitians can provide advice about diet if you are losing weight
or having problems eating.
t Social workers at your local social services department can
give you advice about practical issues.
t Occupational therapists (OT) can provide advice and
access to equipment and adaptations to help with daily
life. For example, help with dressing, eating, bathing or
using the stairs. Your social services department should
be able to arrange for an OT to visit you.
Helpline 0800 074 8383
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41
4PDJBMTFSWJDFT
There are a range of support services which your local council
might be able to provide through its social services department.
What’s available varies from place to place, but can include
practical and financial advice and access to emotional support.
Your GP might be able to refer you to some services, and some
may be linked to hospital departments. You can also contact your
local social services department directly. Their telephone number
will be in the phone book under the name of your local authority,
on their website and at the town hall.
He went into the hospice for a few days
to sort out his pain relief properly. It gave
me the opportunity to just take stock of
what was going on.
A personal experience
42
Advanced prostate cancer: Managing symptoms and getting support
Helpline 0800 074 8383
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43
Coping emotionally
Living with advanced prostate cancer can be hard to deal with
emotionally as well as physically. Symptoms and treatments can be
draining and make you feel unwell. And some treatments, including
hormone therapy, can make you feel more emotional and cause low
moods. Research suggests that men with prostate cancer might
also be at risk of depression.
You may feel a wide range of emotions, including anxiety,
helplessness, anger and fear. Your emotions could change very
quickly – you might have good days and bad days. All these are
very normal ways to feel. But if you are feeling very down or worried,
do speak to your GP or nurse – there are things that can help.
What can help?
There is no ‘right way’ to deal with your feelings. Give yourself time.
Don’t put yourself under pressure to be positive if that is not how
you feel.
Some men want to find their own way to cope and don’t want any
outside help. Other men try to cope on their own because they are
uncomfortable talking about how they feel or are afraid of worrying
loved ones. But there is support available if you need it.
Not everyone wants or needs the same kind of support, but have
a look at the information here to see if there is anything you might
find useful.
44
Advanced prostate cancer: Managing symptoms and getting support
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A lot of men find that talking about how they feel can help. Some
men get support from talking to their family and friends. But not
everyone will want to share their feelings with those close to them.
You might find it easier to talk to someone else.
You may find talking to your doctor or nurse helpful. You can also
speak to our Specialist Nurses on our confidential helpline.
5BMLJOHUPTPNFPOFXIPTCFFOUIFSF
It can sometimes help to talk to someone who knows what you’re
going through. Our support volunteers are all personally affected by
prostate cancer and are trained to listen and offer support over the
telephone. Our volunteers include men with prostate cancer, their
partners and other family members. Call our confidential helpline
and ask to be put in touch with a support volunteer.
There are also prostate cancer support groups throughout the
country where you and your family can meet other people affected
by prostate cancer. Find details of your nearest group on our
website at prostatecanceruk.org or ask your nurse.
If you have access to the internet, you can join our online
community where you can talk to other men with prostate cancer
and their families. Find it on our website at prostatecanceruk.org
Helpline 0800 074 8383
prostatecanceruk.org
45
$PVOTFMMJOH
Some men find talking to a professional counsellor helpful. They can
help you understand your feelings and find ways to deal with them.
Your GP or nurse can put you in touch with a counsellor. Some
hospices also provide counselling. You can also find a counsellor
yourself. The British Association for Counselling and Psychotherapy
has information about counsellors in your area.
4PSUJOHPVUQSPCMFNT
If there is something in particular that is worrying you, then tackling
this can help. For example, if you are having trouble with symptoms
or side effects, speak to your doctor or nurse. If you are worrying
about the future, then making plans – such as thinking about your
future care – might help you feel more in control (see page 59).
.FEJDJOF
If you are suffering from anxiety or depression, anti-depressants
might help. Speak to your GP about this. It is important that you tell
them about any other medicine or complementary therapies that
you are taking.
$PNQMFNFOUBSZUIFSBQJFT
Some men find complementary therapies helpful in dealing with
advanced prostate cancer (see page 34). They might help you
manage symptoms or side effects and so feel more in control,
or help with anxiety. For example, relaxation techniques may help
you deal with worries, or relax you so that you can sleep better.
46
Advanced prostate cancer: Managing symptoms and getting support
4QJSJUVBMTVQQPSU
You might begin to think more about spiritual beliefs as a result
of having advanced prostate cancer. Beliefs are not necessarily
religious, but might help you to make sense of life or your cancer.
You may find that your beliefs offer you great comfort or support.
Or you might start to question your current beliefs.
It is important that you get spiritual support if you need it. This
could be from your friends or family, or from your religious leader
or faith community. If you have any religious practices that are
important to you, such as a special diet or prayer time, tell your
doctor or nurse. Most hospitals and hospices will have a chaplain
who can talk to you about your concerns, whatever your religion,
or even if you are not religious.
.PSFJOGPSNBUJPO
Macmillan Cancer Support and CancerHelp UK both provide
information about coping emotionally with cancer. Or ask your
GP or nurse about any local sources of support.
The charities Mind and Sane both provide information and support
for people who are struggling with depression and anxiety.
Samaritans offer a confidential listening service, allowing you to talk
through your feelings. You can phone them on 08457 90 90 90.
Helpline 0800 074 8383
prostatecanceruk.org
I really do think it helps to be positive,
to have a positive frame of mind; and if
you’ve got a partner or a friend that you
can share it with it’s just vital really, I think.
A personal experience
It helps me to talk about it. It makes me feel
that I’m hitting back at the cancer.
A personal experience
47
48
Advanced prostate cancer: Managing symptoms and getting support
All these pages move on
one to make space for
LHP image
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49
Relationships
Having cancer can often bring you closer to your partner, family or
friends. But the pressure of advanced cancer can also put a strain
on relationships.
The cancer and your treatment might mean that your partner or
family need to do more for you, such as running the home or caring
for you. These changing roles can sometimes be difficult for both
you and your family to deal with. You might not feel comfortable
becoming more dependent, and they might have problems coping
or feel very tired.
Some people may be unsure how to act with you and might find
it difficult to talk about your cancer. They could be worried about
upsetting you or becoming upset themselves. Sometimes it can
help if you let them know whether you want to talk about it or not.
As a family, we’ve been able to be ever
so open about it – if anything I think it’s
probably brought us closer together, rather
than not talking about it and burying our
heads in the sand.
A personal experience
50
Advanced prostate cancer: Managing symptoms and getting support
What can help?
Talking to those close to you can help everyone deal with tensions.
But sometimes talking is not that easy. If you’d like help with
problems in a relationship, your nurse or GP can put you in touch
with a counsellor, and your local hospice may have a family support
team. You could also try contacting organisations such as Relate or
the College of Sexual and Relationship Therapists.
Talking to children
It can be difficult to talk to children or grandchildren about
your cancer. It is usually best to be honest with them. Children
can often sense that something is wrong even if they don’t
understand it, and keeping things from them might only make
them worry more. You could ask your GP or specialist nurse for
advice. The charities Macmillan Cancer Support and Winston’s
Wish have more information about talking to children about cancer.
If you live alone
Dealing with advanced prostate cancer can be hard at times,
particularly if you live on your own. Don’t be afraid to ask for
support if you need it. If you are finding it hard, speak to your
GP or nurse. If you have friends or neighbours nearby, they
may be able to help, both practically and emotionally.
Joining a local support group can also be a good way of
meeting people with similar experiences. For details of your
nearest support group, ask your doctor or nurse or visit our
website at prostatecanceruk.org
Helpline 0800 074 8383
prostatecanceruk.org
Are you supporting someone with prostate cancer?
If someone close to you has advanced prostate cancer you
might be able to offer him a great deal of support, but it is likely
that you will need help and support as well. You may find some
of the information on pages 43-47 helpful.
It is important that you look after yourself. Try to get enough rest,
and if you feel unwell make sure you visit your doctor. Finding
some time to yourself can help you relax. Doing something you
enjoy can help take your mind off things. And regular physical
activity can be a good way of relieving stress.
Don’t be afraid to ask for help if you need it. Friends or family
might be able to help out, and support is also available from
social services and voluntary organisations.
My wife and I frequently say that
‘we have cancer’ not just me. We are
in this together and her welfare is vital
in our treatment plan.
A personal experience
51
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Advanced prostate cancer: Managing symptoms and getting support
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53
Daily life with advanced
prostate cancer
Advanced prostate cancer can affect your ability to work or carry
out everyday tasks. Whatever your situation, there is advice and
support available.
Diet and physical activity
A healthy diet and being physically active might help you feel
more in control of your health. A healthy lifestyle can also help
with some of the side effects of treatment – for example, in
managing your weight if you are on hormone therapy. If you do
make any changes to your lifestyle, do it gradually and go easy
on yourself. Read more in our Tool Kit fact sheet, Diet, physical
activity and prostate cancer.
Work and money
The symptoms of advanced prostate cancer and the side effects
of treatments can make it more difficult for you to work. You
might decide to reduce your working hours, or stop working
altogether. If your partner is caring for you, they might not be
able to work as much.
A lot of men with cancer and their partners worry about how they
will cope financially. It is a good idea to get some advice about
your individual circumstances. Depending on your situation, you
may be entitled to sick pay if you are still employed, or to take early
retirement. There may also be benefits you are entitled to claim.
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Advanced prostate cancer: Managing symptoms and getting support
The following organisations offer more information.
t Macmillan Cancer Support provides financial information and
advice to people affected by cancer.
t Your local Citizens Advice Bureau can offer independent and
confidential advice, including help with benefits forms.
t An independent financial advisor can advise you about
your options.
t A benefits advisor at your local social services department
or hospital should be able to advise you on sources of
financial support.
t The Benefits Enquiry Line provides advice and information on the
range of benefits available.
t Carers UK provides information about financial help for carers.
Find details of all these organisations on pages 65-71.
At home
You might find everyday tasks more difficult. If you need extra help,
speak to your GP or get in touch with your local social services
department for advice (see page 41).
Social services can carry out an assessment to identify your needs
and those of anyone caring for you and how they can help. Useful
support might include:
t equipment or adaptations to your home
t help at home, for example with getting dressed, cooking,
housework or shopping
t breaks away from home (respite care – see opposite) for you
or anyone who is caring for you.
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55
Social services may ask an occupational therapist to advise you
about practical things that can help you remain as independent as
possible. Your GP can also refer you to an occupational therapist.
Other organisations with information and advice about practical
support and how to access it include:
t Macmillan Cancer Support
t Age UK
t Carers UK
t Disabled Living Foundation, who provide advice and information
about equipment.
Find details of all these organisations on pages 65-71.
Respite care
If your cancer means that you need ongoing care from your
partner or a family member, respite care allows them to have
a break. A professional will take over your care for a short time.
There are different types of respite care:
t a sitting service, where someone stays with you for a few hours,
which allows your family member to take a break
t a short stay in a residential home to give you a change of
scenery and help you rest
t a carer who comes in for a few days to allow your family
member to take a short break away.
Speak to your GP, nurse or local social services (see page 41)
about what respite care is available for you.
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Advanced prostate cancer: Managing symptoms and getting support
Transport and travel
5SBOTQPSU
There are various schemes available to help with transport,
including the Blue Badge scheme for parking and discounts
on public transport. Read more about these in our booklet,
Living with and after prostate cancer: A guide to physical,
emotional and practical issues. If you are having trouble
getting around, ask your nurse or GP about local transport
services. For example, the British Red Cross offer
a door-to-door transport service.
If you drive you do not need to tell the Driver and Vehicle Licensing
Agency (DVLA) – or the Driver and Vehicle Agency (DVA) if you live
in Northern Ireland – that you have prostate cancer. However, you
should tell them if:
t your medication causes side effects likely to affect safe driving
t your doctor is concerned about your fitness to drive
t you develop any problems with the brain or nervous system, or
t you can only drive vehicles with special adaptations or certain
types of vehicle.
If you are not sure whether any of these apply to you, speak
to your doctor. You can find out more from the GOV.UK website.
You should also tell your insurance company about your prostate
cancer to make sure that you are properly covered.
Helpline 0800 074 8383
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5SBWFM
Holidays can be a great way to relax. Having advanced prostate
cancer should not stop you going away, but there are things you
might want to consider. Read our Tool Kit fact sheet, Travel and
prostate cancer, for information about travelling.
Everyone’s experience of cancer,
whether or not you are the patient, or the
carer or whatever, is very, very unique
and I don’t think anybody can tell you how
you should behave.
A personal experience
57
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Advanced prostate cancer: Managing symptoms and getting support
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59
Thinking about the future
It’s natural to find it difficult and upsetting to think about the future.
But 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. Although it might be very hard, it is a good idea to talk
to those close to you about your wishes so that they can help make
sure they are carried out.
You can find out more from Dying Matters. Macmillan Cancer
Support and Marie Curie Cancer Care also provide information
about what will happen in the last few weeks and days of life.
Thinking about your future care
Think about what care you would like to receive in the future. This is
called advance care planning. It can include some of the following:
t your wishes and preferences about the type of care you want
t whether you would refuse treatment in specific circumstances
t who you would like to be asked for a decision about your care,
if you are unable to make it yourself
t where you would like to be cared for – for example, at home,
in a hospice or hospital
t where you would like to die.
These can be very difficult decisions to think about. You don’t have
to make any decisions if you don’t want to. But it can be helpful to
think about these things early on as it helps your doctor or nurse
to plan your care according to your wishes. They will discuss these
issues with you and keep a record of your decisions. You can
also talk to your family about what you want, and help them to
understand your preferences. If you change your mind at any time
then you can change your plans or cancel them.
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Advanced prostate cancer: Managing symptoms and getting support
It might not always be possible for doctors to follow your wishes,
but they should always take them into consideration.
Age UK, Marie Curie Cancer Care and NHS Choices have more
detailed information about making decisions about your future care.
Making a power of attorney
A lasting power of attorney is a legal document. It lets you appoint
someone to make decisions on your behalf if you are unable to –
for example, if you are unconscious. You can appoint one or more
people to make decisions about your care and welfare, and/or your
finances and property. In the legal paperwork, they are called an
attorney. They should be someone you trust, like a family member
or friend.
Age UK provide advice and information on making a lasting power
of attorney. You can find more information and the forms you need
to fill in from the GOV.UK website.
Making a Will
By making a Will you can make sure that your property and
possessions will be passed on according to your wishes. If you
die without making a Will, the state will decide who inherits your
property. You don’t need a solicitor to make a Will, but using one
makes sure that the correct legal processes are followed and
your Will is valid.
Age UK and Macmillan Cancer Support have more information about
making a Will. You can find a solicitor through the Law Society.
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61
Dad had already thought about his Will, but
he decided to update it and talked to us all
about it. I think that helped him feel in control
of the situation.
Personal experience
Making a funeral plan
Some people want to be involved in decisions about their
own funeral, such as whether they will be buried or cremated,
or what music and readings to have. Some people take comfort
in making the plans. But other people prefer not to think
about this.
If you do want to think about your funeral, you could discuss
your wishes with your family, or write them down for them.
Some people include instructions for their funeral in their will.
You can get more information about planning a funeral from
AgeUK and the GOV.UK website.
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Advanced prostate cancer: Managing symptoms and getting support
Medical terms used in this booklet
"OBFNJB
A condition where there is a lower level than normal of red blood
cells in the blood. This can cause symptoms including tiredness,
lack of energy and shortness of breath.
#MPPEUSBOTGVTJPO
A procedure where blood is given through a tube in your vein.
Blood transfusions may be given to treat anaemia.
$BUIFUFS
A thin tube used to drain urine from the bladder. This can be a tube
through the penis (urethral catheter) or a tube through the abdomen
(suprapubic catheter).
&SFDUJMFEZTGVODUJPO
Difficulty getting or keeping an erection. Erectile dysfunction may
be a side effect of some treatments for prostate cancer, including
hormone therapy. You can read more in our booklet, Living with
hormone therapy: A guide for men with prostate cancer.
)ZQFSDBMDBFNJB
A condition where the amount of calcium in the blood increases.
Calcium is usually stored in the bones. Prostate cancer that has
spread to the bones may cause too much calcium to be released
into the blood.
Helpline 0800 074 8383
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63
-ZNQIOPEFTMZNQIHMBOET
Part of the lymphatic system, which forms part of the body’s
immune system. The lymph nodes are connected by a network
of lymph vessels, the tubes which carry a fluid called lymph around
the body. There are lymph nodes in the pelvis and groin which are
common places for prostate cancer to spread to.
-ZNQIPFEFNB
A condition caused by a blockage or damage to the lymphatic
system (see lymph nodes) which prevents lymph draining properly.
This may cause a build up of fluid which causes swelling. In men
with prostate cancer, the swelling is usually in the legs, but may
also be in the groin. The damage may be caused by the cancer
itself, or some treatments such as surgery or radiotherapy.
1FMWJDnPPSNVTDMFT
The pelvic floor muscles sit below the bladder and bowel.
They support the bladder, and help to control when you pass
urine. The muscles can become weak, for example following
a radical prostatectomy or if they are damaged by prostate
cancer that has spread. This can lead to problems controlling
when you pass urine.
3FDUVN
The last part of the bowel before the anus. Also called the
back passage.
6SFUISB
The tube which drains urine from the bladder, through the
penis and out of the body.
64
Advanced prostate cancer: Managing symptoms and getting support
More information from us
5IF5PPM,JU
The Tool Kit information pack contains fact sheets that explain
how prostate cancer is diagnosed, how it is treated and how
it may affect your lifestyle. Each treatment fact sheet also includes
a list of suggested questions to ask your doctor.
-FBnFUTBOECPPLMFUT
Other leaflets and booklets about prostate cancer and other
prostate problems can be ordered free of charge from Prostate
Cancer UK.
5PPSEFSQVCMJDBUJPOT
tCall us on 0800 074 8383
tVisit our website prostatecanceruk.org
$BMMPVS4QFDJBMJTU/VSTFT
If you want to talk about prostate cancer or other prostate
problems, call our Specialist Nurses in confidence. You can
also email the nurses using the contact form on our website.
Visit prostatecanceruk.org and click on ‘support’.
Speak to our
Specialist Nurses
0800 074 8383*
prostatecanceruk.org
*
Calls are recorded for training purposes only. Confidentiality is maintained between callers
and Prostate Cancer UK.
Helpline 0800 074 8383
prostatecanceruk.org
Other useful organisations
"HF6,
www.ageuk.org.uk
Advice line: 0800 169 6565
Information for older people on a range of subjects including
health, finances and lifestyle.
#FOFmU&ORVJSZ-JOF
www.gov.uk
Freephone: 0800 882 200
Advice and information about benefits for disabled
people and carers.
#MBEEFSBOE#PXFM'PVOEBUJPO
www.bladderandbowelfoundation.org
Helpline: 0845 345 0165
Information and support for all types of bladder and
bowel problems.
#SJUJTI3FE$SPTT
www.redcross.org.uk
Phone: 0844 871 1111
A wide range of support including lending medical equipment,
assistance at home and help with transport.
#SJUJTI"TTPDJBUJPOGPS$PVOTFMMJOHBOE1TZDIPUIFSBQZ
www.itsgoodtotalk.org.uk
Phone: 01455 883300
Information about counselling and details of therapists
in your area.
65
66
Advanced prostate cancer: Managing symptoms and getting support
$BODFS)FMQ6,
www.cancerresearchuk.org/cancer-help
Helpline: 0808 800 4040
Cancer Research UK’s patient information website provides
information about living with cancer.
$BSFST5SVTU
www.carers.org
Phone: 0844 800 4361
Provides information and support for carers.
$BSFST6,
www.carersuk.org
Adviceline: 0808 808 7777
Information and advice for carers, and details of local support groups.
$)"/(&
www.changepeople.co.uk
Phone: 0113 388 0011
Easy read information for people with learning disabilities, including
information about cancer and palliative care.
$JUJ[FOT"EWJDF
www.citizensadvice.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 phone book.
$PMMFHFPG4FYVBMBOE3FMBUJPOTIJQ5IFSBQJTUT
www.cosrt.org.uk
Phone: 020 8543 2707
Information about sexual and relationship problems,
and details of accredited therapists.
Helpline 0800 074 8383
prostatecanceruk.org
$PNQMFNFOUBSZBOE/BUVSBM)FBMUIDBSF$PVODJM$/)$
www.cnhc.org.uk
Phone: 020 3178 2199
Details of complementary therapy practitioners who meet national
standards of competence and practice.
$SVTF#FSFBWFNFOU$BSF
www.crusebereavementcare.org.uk
Helpline: 0844 477 9400
Support and information for people who have been bereaved.
%JTBCJMJUZ3JHIUT6,
www.disabilityrightsuk.org
Phone: 020 7250 3222
Practical information guides about disability rights and benefits.
%JTBCMFE-JWJOH'PVOEBUJPO
www.dlf.org.uk
Helpline: 0845 130 9177
Expert and impartial advice about equipment and aids to help
people live as independently as possible.
%ZJOH.BUUFST
www.dyingmatters.org
Phone: 08000 21 44 66
Information about planning for the future and advice
on talking about dying.
GOV.UK
www.gov.uk
Information about UK government services, including benefits,
employment and money matters.
67
68
Advanced prostate cancer: Managing symptoms and getting support
)FMQUIF)PTQJDFT
www.helpthehospices.org.uk
Phone: 020 7520 8200
Information about hospice care, including a database of hospice
and palliative care providers in the UK.
5IF-BX4PDJFUZ
www.lawsociety.org.uk
Phone: 020 7320 5650
Find a solicitor in England and Wales.
5IF-BX4PDJFUZPG4DPUMBOE
www.lawscot.org.uk
Phone: 0131 226 7411
Find a solicitor in Scotland.
5IF-BX4PDJFUZPG/PSUIFSO*SFMBOE
www.lawsoc-ni.org
Phone: 028 9023 1614
Find a solicitor in Northern Ireland.
-ZNQIPFEFNB4VQQPSU/FUXPSL
www.lymphoedema.org
Phone: 020 7351 4480
Provides information and support for people with lymphoedema,
including details of support groups.
.BDNJMMBO$BODFS4VQQPSU
www.macmillan.org.uk
Helpline: 0808 808 00 00
Information about cancer, along with practical, emotional and
financial support for people with cancer, family and friends.
Helpline 0800 074 8383
prostatecanceruk.org
69
.BHHJFT$FOUSFT
www.maggiescentres.org
Phone: 0300 123 1801
A network of drop-in centres for cancer information and support.
Includes an online support group.
.BSJF$VSJF$BODFS$BSF
www.mariecurie.org.uk
Phone: 0800 716 146
Runs hospices throughout the UK and provides a nursing service
for patients in their own home.
.JOE
www.mind.org.uk
Infoline: 0300 123 3393
Information and support for mental health issues such as depression
or anxiety.
/BUJPOBM*OTUJUVUFGPS)FBMUIBOE$MJOJDBM&YDFMMFODF/*$&
www.nice.org.uk
Phone: 0845 003 7780
Guidelines for care and treatments on the NHS in England and
Wales. Including specific guidelines for prostate cancer, metastatic
spinal cord compression and supportive and palliative care.
/BUJPOBM0TUFPQPSPTJT4PDJFUZ
www.nos.org.uk
Helpline: 0845 450 0230
Information and support to people with fragile bones.
70
Advanced prostate cancer: Managing symptoms and getting support
/)4
www.nhs24.com
Phone: 08454 242424
A self-help guide, and directory of health services in Scotland.
/)4$IPJDFT
www.nhs.uk
Information about conditions, treatments and lifestyle, support for
carers, and a directory of health services in England.
3FMBUF
www.relate.org.uk
Phone: 0300 100 1234
Information, advice and relationship counselling.
3FMBUJPOTIJQT4DPUMBOE
www.relationships-scotland.org.uk
Phone: 0845 119 2020
Information, advice and relationship counselling in Scotland.
4BNBSJUBOT
www.samaritans.org
Helpline: 08457 90 90 90
Confidential, non-judgemental emotional support, 24 hours a day.
4BOF
www.sane.org.uk
Helpline: 0845 767 8000
Information and advice to anyone affected by mental
health problems.
Helpline 0800 074 8383
prostatecanceruk.org
71
4FYVBM"EWJDF"TTPDJBUJPO
www.sda.uk.net
Helpline: 0207 486 7262
Advice about problems with sex, including information for
people with cancer.
4VF3ZEFS
www.sueryder.org
Phone: 0845 050 1953
Provides palliative care through homecare, hospice and residential
care services.
5VSOVT
www.turn2us.org.uk
Helpline: 0808 802 2000
Helps people access money available to them through benefits,
grants and other sources.
8JOTUPOT8JTI
www.winstonswish.org.uk
Helpline: 08452 03 04 05
Offers practical support and guidance to children who have suffered
bereavement and their families, including information about helping
children when a relative is ill.
72
Advanced prostate cancer: Managing symptoms and getting support
Notes
Helpline 0800 074 8383
prostatecanceruk.org
73
About Prostate Cancer UK
Prostate Cancer UK fights to help more men survive prostate cancer
and enjoy a better life. We support men by providing vital information
and services. We find answers by funding research into causes and
treatments and we lead change, raising the profile of all prostate
diseases and improving care. We believe that men deserve better.
At Prostate Cancer UK, we take great care to provide up-to-date,
unbiased and accurate facts about prostate diseases. We hope
these will add to the medical advice you have had and help you
to make decisions. Our services are not intended to replace
advice from your doctor.
References to sources of information used in the production of this
booklet are available at prostatecanceruk.org
This publication was written and edited by:
Prostate Cancer UK’s Information Team.
It was reviewed by:
t Wayne de Leeuw, Community and Outreach Team Manager,
Dorothy House Hospice Care, Winsley, Bradford-on-Avon
t Louisa Fleure, Clinical Nurse Specialist, Guys Hospital, London
t Clare Littlewood, Macmillan Consultant, Palliative Medicine,
St. Helens & Knowsley Teaching NHS Trust, Merseyside
t Hazel Parsons, Dorothy House Nurse Specialist (Palliative Care),
Dorothy House Hospice, Winsley, Bradford-on-Avon
t Anne-Marie Raftery, Macmillan Clinical Nurse Specialist in
Palliative Care, The Christie NHS Foundation Trust, Manchester
t Cathryn Woodward, Consultant Clinical Oncologist, West Suffolk
Foundation Trust, Bury St Edmunds
t Prostate Cancer UK Volunteers
t Prostate Cancer UK Specialist Nurses
74
Advanced prostate cancer: Managing symptoms and getting support
Helpline 0800 074 8383
prostatecanceruk.org
75
Donate today – help others like you
Did you find this information useful? Would you like to help others
in your situation access the facts they need? Every year, 40,000
men face a prostate cancer diagnosis. Thanks to our generous
supporters, we offer information free to all who need it. If you
would like to help us continue this service, please consider
making a donation. Your gift could fund the following services:
t£10 could buy a Tool Kit – a set of fact sheets, tailored to
the needs of each man with vital information on diagnosis,
treatment and lifestyle.
t£25 could give a man diagnosed with prostate cancer
unlimited time to talk over treatment options with one of our
specialist nurses.
To make a donation of any amount, please call us on
020 8222 7666, visit prostatecanceruk.org/donations or text
PROSTATE to 70004*. There are many other ways to support us.
For more details please visit prostatecanceruk.org/get-involved
*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
Prostate Cancer UK is a registered charity in England and Wales (1005541) and in
Scotland (SC039332). Registered company number 2653887.
824
5IFIFMQMJOFJTPQFO.PO'SJBNQNQMVT8FEQNQN
* Calls are recorded for training purposes only.
Confidentiality is maintained between callers and Prostate Cancer UK.
ADV/JAN13
© Prostate Cancer UK January 2013
To be reviewed January 2015