Download Advanced prostate cancer Managing symptoms and getting support

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 you’re having symptoms
such as fatigue or bone pain. This is called advanced or
metastatic prostate cancer. If you are a partner or relative of
a man with advanced prostate cancer, you may also find this
booklet useful.
We describe the possible symptoms you might get and
the treatments available to help manage them. There’s also
information about emotional, practical and spiritual support.
This booklet is a general guide but everyone’s experience of
advanced prostate cancer is different. You might want to dip into
this booklet for the information that’s relevant to you. Ask your
doctor or nurse for more details about your care and the support
available to you. You can also speak to our Specialist Nurses, in
confidence, on 0800 074 8383.
he following symbols appear throughout the booklet to guide
T
you to sources of further information:
Prostate Cancer UK Specialist Nurses
Prostate Cancer UK publications
The photos in this booklet are of people personally affected by
prostate cancer. The quotes are not the words of the people in
the photos.
Specialist Nurses 0800 074 8383
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prostatecanceruk.org
Contents
About this booklet
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2
What is advanced prostate cancer?
5
What symptoms might I get?
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Treatments for advanced prostate cancer
Your health and social care professionals
Dealing with advanced prostate cancer
Relationships
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Daily life with advanced prostate cancer
Thinking about the future
More information from us
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Other useful organisations
About Prostate Cancer UK
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31
37
43
49
53
59
65
66
73
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Advanced prostate cancer: Managing symptoms and getting support
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
Specialist Nurses 0800 074 8383
prostatecanceruk.org
5
What is advanced prostate cancer?
Advanced prostate cancer is cancer that has spread outside
the prostate to other parts of the body, such as the bones. You
might hear cancer that has spread called metastatic or secondary
prostate cancer, metastases, mets or secondaries. It is still prostate
cancer, wherever it is in the body.
It’s not possible to cure advanced prostate cancer, but treatments can
keep it under control, sometimes for several years (see page 31).
If the cancer starts to grow again and cause any symptoms, there
are treatments available to help manage them.
What is palliative care?
If you have advanced prostate cancer, you may hear the term
palliative care. Palliative care aims to manage pain and other
symptoms. It also aims to provide emotional, physical, practical
and spiritual support.
Palliative care can be provided at any stage of advanced prostate
cancer and isn’t just for men in the final stages of life. Men with
advanced prostate cancer might have palliative care for many
months or years.
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Advanced prostate cancer: Managing symptoms and getting support
Where does prostate cancer spread to?
Prostate cancer most commonly spreads to the bones and lymph
nodes. It 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 other parts of the body
including the lungs and liver. Macmillan Cancer Support has more
information about cancer that has spread to the lungs and liver.
Specialist Nurses 0800 074 8383
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7
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 can tell you exactly what your outlook will be, as every cancer
is different and will affect each man differently. And not everyone wants
to know about their outlook. But some men find it helpful to discuss
their outlook so they can make plans for the future (see page 59).
Not all men with advanced prostate cancer will die from their cancer.
Hormone therapy can keep it under control, sometimes for several
years. And when hormone therapy stops working, there are other
treatments available to keep the cancer under control for longer.
It can be very difficult living with the uncertainty of cancer, but there
is support available if you need it. This includes help to manage
symptoms, and emotional and practical support.
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Advanced prostate cancer: Managing symptoms and getting support
I am now coping with the fatigue by
identifying things I really want to do,
and then being mentally determined
to do them.
A personal experience
Specialist Nurses 0800 074 8383
prostatecanceruk.org
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, but the cancer
may spread further over time, causing more symptoms. This
doesn’t always happen and not all cancer that has spread will
cause symptoms that affect you day to day. There are treatments
available to help manage your symptoms.
You might also get side effects from the treatments you are having,
or from treatments you have had in the past. Read more about
treatments on page 31.
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 or drained. It can affect your energy levels, motivation,
ability to concentrate, emotions and sex drive. Fatigue isn’t always
relieved by rest alone and many men find it difficult to cope with.
Fatigue might be caused by the cancer itself, by treatments, or
by other conditions such as anaemia (see page 24), anxiety and
depression (see page 43).
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Advanced prostate cancer: Managing symptoms and getting support
What can help?
Let your doctor or nurse know if you’re feeling very tired. They can
look into what’s causing it and look for ways to help.
There are things you can do to help manage fatigue.
• Plan your day. Do important things first and make time for rest.
• Stay active. Gentle physical activity such as walking or
swimming can help reduce tiredness. Speak to your doctor
before you make any changes to how you exercise.
• Eat well and drink plenty of fluids. If you are struggling to
eat enough and you’re losing weight, this could add to your
tiredness. Your GP can refer you to a dietitian for advice about
your diet.
• Sort out your sleep. Lots of things can help with sleep
problems, including relaxation techniques and dealing with any
worries that may be keeping you awake. Your GP can give
you advice on what could help you sleep and may sometimes
prescribe sleeping pills.
• Get support. Feeling low or anxious can make you feel tired.
• Try complementary therapies. Acupuncture, massage, yoga or
meditation may help with tiredness.
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 moving around or feel unwell.
Specialist Nurses 0800 074 8383
prostatecanceruk.org
11
Our fatigue support service
Our fatigue support service is a 10-week telephone service
delivered by our Specialist Nurses. They will ask about how
you’re feeling and try to help you find ways to manage your
fatigue. Changes might be things like gradually becoming more
active, getting back into hobbies, or changing your diet slightly.
Visit our website at prostatecanceruk.org/get-support or call
our Specialist Nurses to find out more.
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 it has spread to. But it
won’t always cause pain, and even if cancer has spread to several
places, you may only have pain in a few of these areas.
The most common cause of pain is cancer that has spread to the
bones. Bone pain is a very specific feeling. Some men describe
it as feeling similar to a toothache but in the bones, or like a dull
aching or stabbing. It can get worse with movement and can make
the bone tender to touch. Every man’s experience of bone pain
will be different. The pain may be continuous or it might come and
go. How bad it is can also vary and it could depend on where the
affected bone is.
You might get other types of pain. For example, if the cancer
presses on a nerve, this can also cause pain. This might be
shooting, stabbing, burning, tingling or numbness.
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Advanced prostate cancer: Managing symptoms and getting support
Metastatic spinal cord compression (MSCC)
Pain can also be a symptom of a more serious condition called
metastatic spinal cord compression (MSCC), see page 25.
What can help?
With the right treatment, cancer pain can usually be managed. You
shouldn’t have to accept pain as a normal part of having cancer.
If you have pain, speak to your doctor or nurse. The earlier pain is
treated, the easier it will be to control. 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:
• treatment for the cancer itself, such as hormone therapy,
chemotherapy or steroids
• treatment for the pain, such as pain-relieving drugs,
radiotherapy, or bisphosphonates (see pages 32-33)
• complementary therapies (see page 35).
Some NHS pain clinics and hospitals offer transcutaneous electrical
nerve stimulation (TENS) to help manage pain. TENS uses a
machine to send small electrical currents to nerves in your body
through pads placed on your skin. TENS might help some people
with bone pain, but we need more research into this.
Read more about ways to control pain in our Tool Kit fact sheet,
Managing pain in advanced prostate cancer.
Specialist Nurses 0800 074 8383
prostatecanceruk.org
13
Urinary problems
You might get urinary problems if the cancer has spread to areas
around the prostate, urethra and bladder.
These might include:
• problems emptying your bladder
• leaking urine (incontinence)
• blood in your urine
• kidney problems.
Urinary problems can also be caused by other things such as
infection, an enlarged prostate, or prostate cancer treatments such
as radiotherapy. If you have urinary problems, speak to your doctor
or nurse. There are lots of things that can help.
Problems emptying your bladder
If the cancer is pressing on your urethra it might cause problems
emptying your bladder fully. This is called urinary retention. There
are several things that can help.
• A catheter to drain the urine from the bladder. This is a thin tube
passed through your penis, or through your abdomen (stomach
area), into your bladder.
• Drugs called alpha-blockers. These relax the muscles around the
opening of the bladder, making it easier to urinate.
• An operation called a transurethral resection of the prostate
(TURP) to remove the area of the prostate pressing on the
urethra. But this may not be suitable for all men. Read more in
our fact sheet, Transurethral resection of the prostate (TURP).
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Advanced prostate cancer: Managing symptoms and getting support
Acute urine retention
This is when you suddenly and painfully can’t urinate – it needs
treating straight away. Acute retention isn’t very common in men
with advanced prostate cancer, but if it happens, call your doctor
or nurse, or go to your nearest accident and emergency (A&E)
department. They may need to drain your bladder using
a catheter.
Problems leaking urine
Cancer can grow into the bladder and the muscles that control
urination. This can make them weaker and could mean you leak urine
or need to urinate urgently. Ways to manage leaking urine include:
• absorbent pads and pants
• pelvic floor muscle exercises
• medicines called anti-cholinergics
• a catheter
• surgery.
Your treatment options will depend on how much urine you’re leaking.
If you find you need to rush to the toilet a lot and sometimes leak
before you get there, planning ahead and finding out where toilets
are before you go out, may help you feel more in control of the
situation. Get an ‘urgent’ card to show staff in shops, restaurants
and other public places.
You can read more about these treatments in our Tool Kit fact
sheets, Urinary problems after prostate cancer treatment
and Pelvic floor muscle exercises.
Specialist Nurses 0800 074 8383
prostatecanceruk.org
15
Metastatic spinal cord compression (MSCC)
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 25.
Blood in your urine
Some men notice blood in their urine (haematuria). This may be
caused by bleeding from the prostate. It can be alarming, but can
usually be controlled.
You might need to stop taking medicines that stop the blood
clotting, such as aspirin or warfarin. But speak to your doctor or
nurse before you stop taking any drugs. You might also be able to
have radiotherapy to stop the bleeding.
Kidney problems
The kidneys remove waste products from the blood and produce
urine. Prostate cancer may block the tubes that carry the urine from
the kidneys into the bladder (the ureters). This can cause problems
with how well your kidneys work.
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, and poor appetite.
If you have any of these symptoms tell your doctor or nurse. A
simple blood test can check how well your kidneys are working.
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Advanced prostate cancer: Managing symptoms and getting support
Treatments that can help to drain the urine from the kidneys include:
• a tube put into the kidney to drain urine into a bag outside your
body (nephrostomy)
• a tube (called a stent) put inside the ureters to allow urine to flow
from the kidney to the bladder
• radiotherapy to shrink the cancer and reduce the blockage.
Information and support
Urinary problems might affect how you feel about yourself and your
sense of independence. If you are finding it hard to deal with, speak
to your doctor or nurse for help and advice.
Your GP can put you in touch with your local NHS continence service.
This is run by specialist nurses and physiotherapists. They can give
you advice and support about treatments and products that can help.
Read more in our Tool Kit fact sheet, Urinary problems after
prostate cancer treatment, or speak to our Specialist Nurses.
The Bladder and Bowel Foundation also provides information,
including details of your local NHS continence service. You can
also visit continenceproductadvisor.org for information about
incontinence products.
Specialist Nurses 0800 074 8383
prostatecanceruk.org
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Bowel problems
Bowel problems can include:
• passing loose and watery bowel movements (diarrhoea)
• needing to rush to the toilet (rectal urgency)
• leaking from your back passage (faecal incontinence)
• difficulty emptying your bowels (constipation)
• pain around the stomach area or back passage.
Speak to your doctor or nurse if you have any of these symptoms.
There are treatments available that may help.
Men with advanced prostate cancer might get bowel problems for a
variety of reasons. Radiotherapy to treat prostate cancer can cause
bowel problems. You might get these during treatment, or they can
develop months or years later.
Pain-relieving drugs such as morphine and codeine can cause
constipation. Don’t stop taking them, but speak to your doctor
or nurse if you have any problems. They can give you medicine
to make it easier to empty your bowels (laxatives).
Becoming less mobile, changes in your diet or not drinking enough
fluids can also cause constipation.
You may also get bowel problems if prostate cancer spreads to
part of the bowel (rectum), but this isn’t common. If it happens, it
can cause symptoms including constipation, pain and bleeding.
Radiotherapy can help with the pain and bleeding.
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Advanced prostate cancer: Managing symptoms and getting support
Metastatic spinal cord compression (MSCC)
Rarely, problems emptying your bowels or having no control
over emptying them might be caused by metastatic spinal cord
compression (MSCC), see page 25.
What can help?
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 of water – 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 laxatives to help you 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
rice, pasta and bread, potatoes (without the skins), cornmeal, eggs
and lean white meat. Drink plenty of fluids, but avoid 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 in our Tool Kit fact sheet, Diet, physical activity and
prostate cancer.
Specialist Nurses 0800 074 8383
prostatecanceruk.org
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Information and support
Living with bowel problems can be distressing and, for a lot of men,
it’s not an easy thing to talk about. But remember, doctors and
nurses are used to discussing these problems and finding ways to
deal with it. You could also ask your GP to refer you to your local
continence service. Their specialist nurses can give you further
advice and support on products that can help.
Macmillan Cancer Support and the Bladder and Bowel Foundation
have more information about coping with bowel problems.
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 make your bones weaker and can lead
to a condition called osteoporosis, which can increase your risk of
bone fractures.
Read more about bone thinning and hormone therapy in our
booklet, Living with hormone therapy: A guide for men with
prostate cancer.
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.
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Advanced prostate cancer: Managing symptoms and getting support
What can help?
You might be given radiotherapy to slow down the growth of the
cancer. This can help control damage to the bones and bone pain.
Read more in our Tool Kit fact sheet, Radiotherapy for advanced
prostate cancer.
Your doctor may give you drugs called bisphosphonates to help
treat bone pain (see page 33). Sometimes they are also used to
help manage osteoporosis.
If there is an area of bone that has been badly damaged, surgery
might help to strengthen it. A metal pin or plate is put inside the
bone. Surgery isn’t suitable for all men with advanced prostate
cancer. This will depend on where the damaged bone is, and other
things such as whether you are well enough for surgery. If you have
an operation, you may have radiotherapy afterwards to help stop
the cancer growing in that area.
The National Osteoporosis Society provides more information and
support about fragile bones.
Specialist Nurses 0800 074 8383
prostatecanceruk.org
21
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 such as surgery and radiotherapy can affect
your ability to get an erection. All types of hormone therapy can
reduce your desire for sex (libido).
Because getting an erection also relies on your thoughts and
feelings, feeling low, anxious or tired can also affect your sex life.
You might lose interest in sex or not have enough energy for it.
What can help?
You can get treatment and support for sexual problems. Speak to
your GP, nurse or hospital doctor to find out more. They can offer
you treatment or refer you to a specialist service.
You can get free medical treatment for erection problems or other
sexual problems on the NHS. Some of these may help, even if your
sex drive is reduced. Tackling any worries or relationship issues as
well as having medical treatment for erection problems often
works well.
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. It’s often helpful to explore other ways of having an intimate
relationship, without having penetrative sex. Sometimes just holding
hands or cuddling can be enough.
If you have a catheter, it is still possible to have sex. Speak to
your nurse about this. The Bladder and Bowel Foundation have
information about having sex if you have urinary problems.
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Advanced prostate cancer: Managing symptoms and getting support
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.
Read more about ways to manage sexual problems in our booklet
Prostate cancer and your sex life. You may also find the
information on page 49 helpful.
Lymphoedema
If the cancer spreads to the lymph nodes it could lead to a
condition called lymphoedema – caused by a blockage in the
lymphatic system. The lymphatic system is part of your body’s
immune system, carrying fluid called lymph, around your
body. If it is blocked, the fluid can build up and cause swelling
(lymphoedema). Cancer itself can cause a blockage and so can
some treatments, such as surgery or radiotherapy.
Lymphoedema in prostate cancer usually affects the legs, but it can
affect other areas, including the penis or scrotum (which contains
the testicles). Symptoms in the affected area can include:
• swelling
• pain, discomfort or heaviness
• inflammation, redness or infection
• tight, sore skin.
Lymphoedema can affect your daily life. You might find that you are
less able to move around and it’s harder to carry out everyday tasks
like getting dressed. Some men find it knocks their confidence.
Specialist Nurses 0800 074 8383
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23
What can help?
Speak to your nurse or GP if you have any symptoms. There are
treatments that can help to manage them. Treatments aim to
reduce or stop the swelling and make you more comfortable.
They are most effective if started when symptoms first start.
If you have lymphoedema, you may be referred to a specialist
lymphoedema nurse. They can show you how to manage the
swelling and are often based in hospices.
There are a variety of treatments which might help.
• Caring for the skin, such as regular cleaning and moisturising.
It can help to keep your skin soft and reduce the chance of it
becoming cracked and infected.
• Special massage (manual lymphatic drainage) can help to
increase the flow of lymph. Your nurse might be able to show
you or your partner how to do this.
• Gentle exercise may help to improve the flow of lymph from
the affected area of the body. For example, doing simple leg
movements, similar to those recommended for long aeroplane
journeys, may help with leg lymphoedema.
• Using compression bandages or stockings can help to
encourage the lymph to drain from the affected area. Your nurse
will show you how to use them.
• Wearing supportive underwear may help control any swelling in
your penis or scrotum. Lycra cycling shorts might also help in a
similar way.
• Try to maintain a healthy weight as being overweight can make
lymphoedema harder to manage. Read more in our Tool Kit fact
sheet, Diet, physical activity and prostate cancer.
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Advanced prostate cancer: Managing symptoms and getting support
Information and support
Living with lymphoedema can be difficult. If you need more support,
speak to your specialist nurse or GP. They can provide practical and
emotional support. Your GP can also refer you to a counsellor to
help you deal with how you’re feeling.
Macmillan Cancer Support and the Lymphoedema Support
Network provide more information and can put you in touch with
local support groups.
Anaemia
Some men with advanced prostate cancer may develop a condition
called anaemia. This is when your blood can’t carry enough oxygen
to meet your body’s needs. Symptoms include feeling tired or
weak, out of breath and looking pale.
Anaemia occurs when your blood has fewer red blood cells than
usual. Red blood cells carry oxygen around the body and are made
by the bone marrow. Anaemia can happen 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.
What can help?
Speak to your doctor or nurse if you have 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 the anaemia is caused by the cancer, treating the cancer can
sometimes help.
Specialist Nurses 0800 074 8383
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25
If you have very low levels of red blood cells, you may need to
have a blood transfusion. This can be a quick and effective way of
treating anaemia.
Your doctor may recommend you take iron supplements to help with
anaemia. These can cause constipation. See page 18 for information
about managing constipation.
Macmillan Cancer Support and Cancer Research UK provide more
information about anaemia.
Metastatic spinal cord compression (MSCC)
Prostate cancer can spread to the bones of the spine. This can
lead to a condition called metastatic spinal cord compression
(MSCC). This happens when the cancer presses on the spinal cord.
This can cause problems with how the nerves in the spinal cord
carry messages to the rest of the body. This can cause a range of
symptoms which can get worse if left untreated. For example, it can
make you less able to walk and move around.
MSCC isn’t common but you need to be aware of it if you have
prostate cancer that has spread to the bones. Speak to your doctor
or nurse for more information about your risk.
MSCC can cause any of the following symptoms.
• 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.
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Advanced prostate cancer: Managing symptoms and getting support
• A narrow band of pain around your stomach area or chest which
can move towards your lower back, buttocks or legs.
• Pain that moves down your arms or legs.
• 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.
• Numbness or pins and needles in your legs, arms, fingers, toes,
buttocks, stomach area or chest, that doesn’t go away.
• 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.
Don’t wait - get it checked out
These symptoms can also be caused by other conditions. But it’s
very important to get medical advice straight away.
Don’t wait to see if it gets better and don’t worry if it’s an
inconvenient time, such as the evening or weekend. It’s very
important you have treatment as soon as possible. At its worst,
MSCC can cause paralysis. Getting treatment straight away can
lower the risk of this happening or it being permanent.
Contact your doctor or nurse, or if you can’t reach them, go to
your nearest accident and emergency (A&E) department.
Read more in our fact sheet, Metastatic spinal cord compression.
Specialist Nurses 0800 074 8383
prostatecanceruk.org
27
Hypercalcaemia
Hypercalcaemia is a high level of calcium in your blood. Calcium
is usually stored in the bones, but the cancer can cause calcium
to leak into the blood. This isn’t common in men with advanced
prostate cancer. But if it happens, it’s important that it’s treated
so it doesn’t develop into a more serious condition.
Symptoms of hypercalcaemia include:
• tiredness and lack of energy
• loss of appetite and weakness
• difficulty emptying your bowels (constipation)
• confusion
• feeling and being sick (nausea and vomiting)
• pain in your stomach area
• thirst
• needing to urinate often (frequency).
These symptoms can be quite common in men with advanced
prostate cancer and might not be caused by hypercalcaemia. Tell
your doctor or nurse if you have any of these symptoms so that
they can find the cause. They will do a blood test to check levels of
calcium in your blood. They may also do other tests and ask you
about your symptoms.
What can help?
If you have hypercalcaemia, you may have to go into hospital or a
hospice for a couple of days. You will be given fluid through a drip in
your arm. This will help to flush calcium out of your blood and bring
your calcium levels down.
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Advanced prostate cancer: Managing symptoms and getting support
Drugs called bisphosphonates are the main treatment for
hypercalcaemia. They are very effective at lowering the 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 for advanced prostate cancer.
Once your calcium levels are back to normal, you will have regular
blood tests to keep an eye on them. Tell your doctor or nurse if your
symptoms come back.
As your cancer becomes more advanced, you may get
hypercalcaemia more often, and treatment may not work
as well. Your doctors should control any symptoms you have.
Cancer Research UK provides more information
about hypercalcaemia.
Eating problems
Some men with advanced prostate cancer have problems eating,
or have a poor appetite. You might feel or be sick because of
your cancer, or as a side effect of some treatments. These can
include pain relieving drugs, chemotherapy, radiotherapy and
bisphosphonates (see pages 32-33). 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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What can help?
If you feel sick because of your treatment, your doctor can give you
anti-sickness drugs. Steroids can also increase your appetite and
are sometimes given along with other treatments.
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
sickness worse. Drink plenty of water, 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 help. 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 provide
information and support about eating problems in advanced cancer.
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Advanced prostate cancer: Managing symptoms and getting support
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
Specialist Nurses 0800 074 8383
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31
Treatments for advanced
prostate cancer
Hormone therapy
Men with advanced prostate cancer will usually have hormone
therapy, which can keep the cancer under control for many months
or years. It can also help manage the symptoms of advanced
cancer, such as bone pain. Read more about hormone therapy
in our Tool Kit fact sheet, Hormone therapy.
As with all treatments, hormone therapy may have side effects, such
as erection problems, hot flushes and fatigue. You can read more
about side effects and ways to manage them in our booklet, Living
with hormone therapy: A guide for men with prostate cancer.
Over time your cancer might start to grow again. If this happens
the cancer is no longer responding so well to the original hormone
therapy, but might still respond to other types of hormone therapy
or to other treatments. You will normally continue the first type of
hormone therapy. This is because it can still help to control the cancer,
even if isn’t working so well. Read more in our Tool Kit fact sheet,
Second-line hormone therapy and further treatment options.
If you have any symptoms, there are treatments available to help
manage them. Your treatment will depend on your symptoms,
your general health and what treatments you’ve 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 you’re offered.
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Advanced prostate cancer: Managing symptoms and getting support
Pain-relieving drugs
There are different types of pain-relieving drugs for different levels
of pain and different ways of taking them. These include tablets,
patches and injections.
Some men worry about becoming addicted to opioids like morphine.
But you might not need the strongest type of pain-relieving drugs. And
if you do need morphine, it’s unlikely you’ll become addicted to it as
your doctor will control the dose very carefully.
Your doctor or palliative care nurse will help you find what’s best
for you.
Read more in our Tool Kit factsheet, Managing pain and
advanced prostate cancer.
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.
Read more in our Tool Kit factsheet, Radiotherapy for advanced
prostate cancer.
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Bisphosphonates
Bisphosphonate drugs treat pain caused by cancer that has spread
to the bones. They 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
27) and manage osteoporosis (see page 19).
If you’re not able to have bisphosphonates, you may be able to
have a different drug called denosumab instead.
Read more in our Tool Kit factsheet, Bisphosphonates for
advanced prostate cancer.
Chemotherapy
Chemotherapy involves using anti-cancer drugs to kill cancer
cells. This shrinks the cancer and slows its growth. It doesn’t cure
prostate cancer but can help to control symptoms such as pain.
Chemotherapy can also help some men live longer.
Docetaxel is the standard chemotherapy for men with advanced
prostate cancer that is no longer responding to hormone therapy.
You will usually have the treatment every three weeks.
Read more in our Tool Kit factsheet, Chemotherapy.
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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 better ways of preventing, diagnosing, treating and
controlling illnesses. They involve people who have volunteered to
take part. There are a number of trials looking into treatments for
advanced prostate cancer.
If you would like to find out more about taking part in a clinical trial,
ask your doctor or specialist nurse. You can also find details of
prostate cancer trials on the Cancer Research UK website.
Read more in our Tool Kit fact sheet, A guide to prostate cancer
clinical trials.
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Complementary therapies
Complementary therapies may be used alongside medical
treatment. They include acupuncture, massage, yoga, meditation,
reflexology and hypnotherapy. Some people find they help them
deal with cancer symptoms and side effects such as tiredness.
Some complementary therapies have side effects or may interfere
with your cancer treatment. So make sure your doctor or nurse
knows about any complementary therapies you’re using or thinking
of trying. And make sure that any complementary therapist you see
knows about your cancer and treatments.
Some complementary therapies are available through hospices,
GPs and hospitals, as part of the overall care they provide. But if
you want to find a therapist yourself, make sure they are properly
qualified and belong to a professional body. The Complementary
and Natural Healthcare Council have advice about finding
a therapist.
Macmillan Cancer Support and Cancer Research UK have more
information about different therapies available and important safety
issues to think about when choosing a therapy.
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Advanced prostate cancer: Managing symptoms and getting support
The specialist palliative care team
identified my needs and recommended
treatments to reduce my pain.
A personal experience
Specialist Nurses 0800 074 8383
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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)
The team of health professionals or specialists involved in your care.
Your MDT is likely to include a clinical nurse specialist, oncologist,
urologist, radiologist, and a palliative care doctor or nurse. Services
vary depending on where you live.
Clinical nurse specialist (CNS)
A nurse who specialises in caring for men with prostate cancer.
They may be the health professional you see most. They provide
care and offer advice on managing prostate cancer and side
effects. They also provide emotional support.
Urologist and oncologist
A urologist is a surgeon who specialises in conditions affecting the
urinary system, including the prostate. An oncologist is a doctor
who specialises in cancer treatments other than surgery, such as
radiotherapy or chemotherapy. They both treat prostate cancer with
hormone therapy and will be in your multi-disciplinary team.
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Advanced prostate cancer: Managing symptoms and getting support
Your GP and district nurse
Your GP and district or community nurse will work with other health
professionals to co-ordinate your care and offer you support and
advice. They can also refer you to local services. They can visit you
in your home and also help support your family.
Palliative care team
This includes specialist doctors and nurses who provide treatment
to manage pain and other symptoms of advanced cancer. They
also provide emotional, physical, practical 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 not all palliative care nurses are Macmillan nurses. And Macmillan
nurses aren’t always palliative care nurses. This will depend on your
local services.
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
Specialist Nurses 0800 074 8383
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Hospices
Hospices provide a range of services to men living with advanced
prostate cancer and their families. They can provide treatment to
manage symptoms as well as emotional, spiritual, psychological
and practical support.
Hospices don’t just provide care for people at the end of their
life. Some people go into a hospice for a short time to get their
symptoms under control then go home again. For example, they
might provide bisphosphonates to treat hypercalcaemia, or give
blood transfusions for anaemia.
Some hospices have nurses who can visit you at home, and some
provide day therapy. This means you can 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 don’t need the hospice’s help at the
moment, but they have already visited us at
home, 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
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Advanced prostate cancer: Managing symptoms and getting support
Marie Curie nurses
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.
• Physiotherapists can help with mobility and provide exercises
to help improve fitness or ease pain.
• Counsellors or psychotherapists can help you and your family
work through any difficult feelings and find ways of coping.
• Dietitians can provide advice about diet if you are losing weight
or having problems eating.
• Social workers can give you advice about practical issues such
as arranging for someone to support you at home.
• Occupational therapists 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 or your GP should be able to arrange for an
occupational therapist to visit you.
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Social services
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 yourself. Their telephone number
will be in the phone book under the name of your local authority,
on their website and at the town hall.
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Advanced prostate cancer: Managing symptoms and getting support
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.
A personal experience
Specialist Nurses 0800 074 8383
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43
Dealing with advanced
prostate cancer
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. Some men having hormone therapy find that they cry a lot,
or have mood swings such as feeling upset and then angry. Men
with advanced prostate cancer might also be at risk of depression,
especially if they have symptoms such as pain or fatigue.
You may feel a wide range of emotions, including anxiety,
helplessness, anger and fear. And your emotions might change very
quickly. 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’s not how
you feel. There will be good days and bad days – make the most of
the days you feel well, and find ways to get through the bad days.
Everyone has their own way of dealing with advanced prostate
cancer. 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.
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Advanced prostate cancer: Managing symptoms and getting support
Talking about it
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.
It could be useful to speak to your nurse, doctor, GP or someone
else in your medical team. They can help you understand your
treatment and side effects, listen to your concerns, and put you in
touch with other people who can help.
Our Specialist Nurses can answer your questions and explain
your treatment options. They’ve got time to listen to any concerns
you or those close to you have about living with prostate cancer.
Everything is confidential.
It helps me to talk about it. It makes me feel
that I’m hitting back at the cancer.
A personal experience
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Talking to someone who’s been there
It can sometimes help to talk to other men living with prostate cancer.
• Our one-to-one support service is a chance to speak to
someone who’s been there and understands what you’re going
through. They can share their experiences and listen to yours.
You could talk about treatments, dealing with side effects, or tell
people about your cancer – whatever’s important to you.
• Our online community is a place to talk about whatever’s on
your mind. Anyone can ask a question or share an experience.
It’s a place to deal with prostate cancer together.
• At local support groups men get together to share their
experiences of living with prostate cancer – you can ask
questions, share worries and know that someone understands
what you’re going through. Many also welcome partners, friends
and relatives.
To find out more about any of our services visit our website at
prostatecanceruk.org/get-support or call our Specialist Nurses
on 0800 074 8383.
Counselling
Some men find talking to a professional counsellor helpful.
Counsellors are trained to listen and can help you find your own
ways to deal with things. Many hospitals and hospices have
counsellors or psychologists who specialise in helping people with
cancer – ask your doctor or nurse if this is available. Your GP can
also refer you or you can see a private counsellor. To find out more
contact the British Association for Counselling & Psychotherapy.
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Advanced prostate cancer: Managing symptoms and getting support
Sorting out problems
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 about ways to
manage them.
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).
Medicines
If you are feeling depressed or anxious, anti-depressants might
help. Speak to your GP about this. It is important that you tell
them about any other medicine or complementary therapies
you are taking.
Spiritual support
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 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.
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Information and support
Macmillan Cancer Support and Cancer Research UK both provide
information about dealing with cancer. Or ask your GP or nurse
about any local sources of support.
The charities Mind and Sane 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 on 08457 90 90 90 (open 24 hours).
It is helpful and relaxing to chat with other
men. A shared experience lets you know
that you’re not on your own.
A personal experience
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Advanced prostate cancer: Managing symptoms and getting support
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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
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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.
We are working with Relate to offer counselling sessions to
individuals, couples or family members affected by prostate cancer.
Many people find counselling a helpful way of exploring their
feelings around difficult subjects. Counselling provides time and
space to discuss difficult topics with a specialist. To find out more
visit our website at prostatecanceruk.org/get-support
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 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 help
if you need it. You could speak to your GP or nurse. If you have
friends or neighbours nearby, they may be able to help, both
practically and emotionally. See page 54 for more information about
support you can get at home.
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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/get-support
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 go to your doctor. Finding
some time to yourself can help you relax. Doing something you
enjoy can help take your mind off things. And regular exercise
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. Macmillan Cancer Support
.
have more information about caring for someone with advanced
cancer. You can also read our booklet: When you’re close to a
man with prostate cancer: A guide for partners and family.
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Advanced prostate cancer: Managing symptoms and getting support
My wife and I often 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
Specialist Nurses 0800 074 8383
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53
Daily life with advanced
prostate cancer
Advanced prostate cancer can affect whether you are able 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
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.
• Macmillan Cancer Support provides financial information and
guidance to people affected by cancer.
• Your local Citizens Advice Bureau can offer independent and
confidential advice, including help with benefits forms.
• An independent financial advisor can advise you about
your options.
• A benefits advisor at your local social services department
or hospital should be able to advise you on sources of
financial support.
• Carers UK and The Carers Trust provide information about
financial help for carers.
Find details of all these organisations on pages 66-72.
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 of your needs and
those of anyone caring for you. They can work out what services
can help, and provide information about support available in your
area. Some services may be free. Or social services may do an
assessment to work out whether you need to contribute to
paying for them. Social services can help in different ways.
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Equipment and adaptions to your home
An occupational therapist may be able to advise you about
practical things that can help make living at home easier. For
example, they may suggest making some changes to your home,
or special equipment that can help with everyday tasks. Your
social services department or your GP will be able to refer you
to an occupational therapist.
Help at home
You may be able to get help from a home care worker. Home care
workers include care assistants, who can help with housework and
shopping, and personal care assistants, who can help with tasks
like getting washed and dressed.
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:
• a sitting service, where someone stays with you for a few hours,
which allows your family member to take a break
• a short stay in a residential home to give you a change of
scenery and help you rest
• a carer who comes in for a few days to allow your family
member to take a short break away.
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Advanced prostate cancer: Managing symptoms and getting support
Not all local areas provide or pay for the same services. Speak to
your GP, nurse or local social services (see page 41) about what
practical support or respite care is available for you.
Other organisations with information about practical support and
how to access it include:
• Macmillan Cancer Support
• Age UK
• Carers UK
• NHS Choices
• Disabled Living Foundation
• Find Me Good Care.
Find details of all these organisations on pages 66-72.
Transport and travel
Transport
There are various schemes available to help with transport. These
include the Blue Badge scheme for parking, the Mobility Scheme
for help with buying or leasing a car and discounts or free travel on
public transport. Contact your local council for more details.
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.
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If you drive you don’t 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. You should tell
them if:
• your medication causes side effects likely to affect safe driving
• your doctor is concerned about your fitness to drive
• you develop any problems with the brain or nervous system
• 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 you’re properly covered.
Travel
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 more in our Tool Kit fact sheet, Travel
and prostate cancer.
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Advanced prostate cancer: Managing symptoms and getting support
Everyone’s experience of cancer, whether
or not you are the patient or the carer, is
very, very unique and I don’t think anybody
can tell you how you should behave.
A personal experience
Specialist Nurses 0800 074 8383
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59
Thinking about the future
It’s natural to find it difficult or upsetting to think about the future.
But you might find that making plans helps you feel more prepared
for what the future may hold. It can also reassure you about the
future for your family. Although it might be very hard, it is a good
idea to talk about your wishes to those close to you, and write them
down, so that they can understand what is important to you.
It also means that if you are ever in a situation where you can’t
make decisions or speak for yourself, your healthcare team should
know what you want.
Find out more about planning for the future from Dying Matters and
Compassion in Dying. 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. Planning your care can help to make
sure you get the care you want. But not everyone wants to think
about what care they want in the future, and it’s not something you
have to do.
There are lots of different ways you can plan ahead for your future
treatment and care. Making an advance decision and writing an
advance statement are two different examples of this.
Advance decisions and advance directives
In England and Wales, an advance decision to refuse treatment
allows you to record any treatments you wish to refuse in certain
circumstances. It’s used if there’s ever a time when you are unable
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Advanced prostate cancer: Managing symptoms and getting support
to make a decision for yourself, or if you can’t communicate what
you want. For example, if you were unconscious, or were being
given sedatives at the end of your life, you might decide in advance
that you wouldn’t want treatment to prolong your life.
An advance decision to refuse treatment is legally binding. This
means your doctor or nurse would have to carry out your wishes.
You can’t use an advance decision to ask for specific treatments,
or to ask for your life to be ended. If you refuse treatment within an
advance decision your doctor or nurse will still make sure you are
comfortable and free of pain.
In Scotland, you can make an advance directive to say what
treatments you would refuse, if you were unable to decide for
yourself or communicate your wishes. An advance directive isn’t
legally binding, but your doctor or nurse would need to take it into
account when making a decision on your behalf.
In Northern Ireland, advance decisions or directives aren’t legally
binding. But it’s still a good idea to record what treatments you
would refuse if you couldn’t decide yourself or communicate your
wishes. Your doctor or nurse should take this into account when
making a decision on your behalf.
It’s a good idea to put your advance decision or advance directive
in writing – then it’s clearer to your doctor or nurse, and will be
easier for them to follow. If your advance decision contains a refusal
of treatment that will keep you alive, it must be in writing.
Speak to your partner, family, doctor and nurse about what to
include. Refusing certain treatments may put your life at risk, or
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cause you discomfort. Your doctor can talk to you about this in
more detail, and help you think through the consequences of any
decision carefully. Make sure your doctor or nurse knows about it,
so that they can follow your wishes.
You can change your advance decision or advance directive at any
time. It’s a good idea to review it regularly to make sure it is still
what you want.
Advance statement
An advance statement is a general statement about anything that
is important to you in relation to your future health and wellbeing. It
can include some of the following:
• your wishes and preferences about the type of care you want
• who you would like to be asked for a decision about your care, if
you are unable to make it yourself
• where you would like to be cared for – for example, at home, in a
hospice or hospital
• where you would like to die.
An advance statement isn’t legally binding in the same way that
an advance decision is. But your doctor does have to take your
advance statement into account when making any decision on your
behalf – although it might not always be possible for them to follow
your wishes.
Even if you say in your advance statement who you would like to
make decisions on your behalf if you can’t, your doctor doesn’t
legally have to follow what that person says. The only way to give
another person the legal power to make health or care decisions
on your behalf is by making a Lasting Power of Attorney for Health
and Welfare (see page 62).
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Advanced prostate cancer: Managing symptoms and getting support
Support in making decisions
These can be very difficult decisions to think about. You don’t
have to make any decisions if you don’t want to. But if you think
about these things early on, it helps your doctor or nurse 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 understand your
wishes. If you change your mind at any time, you can change your
plans or cancel them.
Compassion in Dying, Age UK, Marie Curie Cancer Care and NHS
Choices have more information about making decisions about your
future care. You can get a free template for making an advance
decision from Compassion in Dying, and they can support you in
writing it.
Making a lasting 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 for you. In the legal paperwork,
the people you appoint are called an attorney. They should be
someone you trust, like a family member or friend.
There are two separate types of lasting power of attorney.
• A property and financial affairs lasting power of attorney covers
issues around money and property.
• A health and welfare lasting power of attorney covers decisions
about your health, personal care and welfare.
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63
Age UK and Compassion in Dying provide information about
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 from the Law Society.
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.
A personal experience
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Advanced prostate cancer: Managing symptoms and getting support
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
these 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 Age UK and the
GOV.UK website.
Macmillan Cancer Support and Marie Curie Cancer Care also
produce a booklet for people in the final stages of life and their
carers called End of life: a guide.
We have talked about the end. Now it’s done,
and we can move on to living each day as
it comes.
A personal experience
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More information from us
The Tool Kit
The Tool Kit information pack contains fact sheets that explain
how prostate cancer is diagnosed, how it’s treated and how it may
affect your lifestyle. Each treatment fact sheet also includes a list of
suggested questions to ask your doctor. Call our Specialist Nurses
for a personally tailored copy.
Leaflets and booklets
We have a range of other leaflets and booklets about prostate
cancer and other prostate problems.
To order publications:
All our publications are free and available to order or download
online. To order them:
• Call us on 0800 074 8383
• Visit our website at prostatecanceruk.org/publications
Call our Specialist Nurses
If you want to talk about prostate cancer or other prostate
problems, call our Specialist Nurses or text NURSE to 70004.
You can also email or chat online with our nurses on our website.
Visit prostatecanceruk.org/get-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.
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Advanced prostate cancer: Managing symptoms and getting support
Other useful organisations
Age UK
www.ageuk.org.uk
Advice line: 0800 169 6565
Information for older people on a range of subjects including
health, finances and lifestyle.
Bladder and Bowel Foundation
www.bladderandbowelfoundation.org
Helpline: 0845 345 0165
Information and support for all types of bladder and bowel problems.
British Association for Counselling & Psychotherapy
www.itsgoodtotalk.org.uk
Telephone: 01455 883 300
Information about counselling and details of therapists in your area.
British Red Cross
www.redcross.org.uk
A wide range of support and services, from medical-equipment
loans and home assistance, to help with transport. Find your local
Red Cross in the phonebook or online.
Cancer Research UK
www.cancerresearchuk.org
Nurse helpline: 0808 800 4040
Patient information from Cancer Research UK.
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67
Carers Trust
www.carers.org
Telephone: 0844 800 4361 Information and support for carers.
Carers UK www.carersuk.org
Advice line: 0808 808 7777
Information and advice for carers, and details of local support groups.
Citizens Advice
www.citizensadvice.org.uk
Online advice guide www.adviceguide.org.uk
Advice on a wide range of issues including financial and legal matters.
Find your nearest Citizens Advice Bureau in the phonebook or online.
College of Sexual and Relationship Therapists
www.cosrt.org.uk
Telephone: 020 8543 2707
Information about sexual and relationship therapy, and details of
accredited therapists.
Compassion in Dying
www.compassionindying.org.uk
Infoline: 0800 999 2434
Information and support on your rights to make choices about
treatment and care at the end of life. They provide free advance
decision forms and support in completing one, and information on
lasting powers of attorney for health and welfare.
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Advanced prostate cancer: Managing symptoms and getting support
Complementary and Natural Healthcare Council
www.cnhc.org.uk
Telephone: 020 7653 1971
Provides details of therapists who meet national standards.
Continence Product Advisor
www.continenceproductadvisor.org
Information on products for different continence problems, written
by health professionals.
Cruse Bereavement Care
www.crusebereavementcare.org.uk
Helpline: 0844 477 9400
Support and information for people who have been bereaved.
Disability Rights UK
www.disabilityrightsuk.org
Advice line: 0300 555 1525
Practical information guides about disability rights and benefits.
And keys for accessible toilets across the UK.
Disabled Living Foundation
www.dlf.org.uk
Helpline: 0300 999 0004
Expert advice about equipment and aids to help people live as
independently as possible.
Dying Matters
www.dyingmatters.org
Telephone: 0800 021 44 66
Information about planning for the future and advice on talking
about dying.
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69
Find Me Good Care
www.scie.org.uk/findmegoodcare
Helps people make choices about care for themselves or others in
England, including a database of services in your area.
GOV.UK
www.gov.uk
Information about UK government services, including benefits,
employment, and money matters.
Hospice UK
www.hospiceuk.org
Telephone: 020 7520 8200
Information about hospice care, including a database of hospice
and palliative care providers.
Lymphoedema Support Network
www.lymphoedema.org
Telephone: 020 7351 4480
Information and support for people with lymphoedema, including
details of support groups.
Macmillan Cancer Support www.macmillan.org.uk
Telephone: 0808 808 0000
Practical, financial and emotional support for people with cancer,
their family and friends.
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Advanced prostate cancer: Managing symptoms and getting support
Maggie’s Centres www.maggiescentres.org
Telephone: 0300 123 1801
Drop-in centres for cancer information and support. Includes an
online support group.
Marie Curie Cancer Care
www.mariecurie.org.uk
Telephone: 0800 716 146
Run hospices throughout the UK and a nursing service for people in
their own home free of charge.
Mind
www.mind.org.uk
Infoline: 0300 123 3393
Information and support for mental health issues such as
depression or anxiety.
National Osteoporosis Society
www.nos.org.uk
Helpline: 0845 450 0230
Information and support for people with fragile bones.
Relate
www.relate.org.uk
Telephone: 0300 100 1234
Information, advice and relationship counselling and sex therapy. In
Scotland, contact Relationships Scotland instead.
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Samaritans
www.samaritans.org.uk
Helpline: 0845 790 9090
Confidential, non-judgemental emotional support, 24 hours a day,
by telephone, email, letter or face to face.
Sane
www.sane.org.uk
Helpline: 0845 767 8000
Information and support for anyone affected by mental
health problems.
Sue Ryder
www.sueryder.org
Telephone: 0845 050 1953
Palliative care through homecare, hospice and residential
care services.
The Law Society
www.lawsociety.org.uk
Telephone: 020 7320 5650
Find a solicitor in England and Wales.
The Law Society of Northern Ireland
www.lawsoc-ni.org
Telephone: 028 9023 1614
Find a solicitor in Northern Ireland.
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Advanced prostate cancer: Managing symptoms and getting support
The Law Society of Scotland
www.lawscot.org.uk
Telephone: 0131 226 7411
Find a solicitor in Scotland.
Turn2us
www.turn2us.org.uk
Helpline: 0808 802 2000
Help to access money that’s available through benefits,
grants and other help.
Winston’s Wish
www.winstonswish.org.uk
Helpline: 08452 03 04 05
Practical support and guidance for bereaved children and their
families. Information about helping children when a relative is ill.
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73
About Prostate Cancer UK
Prostate Cancer UK fights to help more men survive prostate
cancer and enjoy a better life. We do this through Men United, our
movement for everyone who believes men are worth fighting for. You
can join Men United at prostatecanceruk.org/menunited
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 Health Information Team.
It was reviewed by:
• Wayne de Leeuw, Community and Outreach Team Manager,
Dorothy House Hospice, Wiltshire
• Louisa Fleure, Clinical Nurse Specialist, Guy’s Hospital, London
• Usha Grieve, Information Strategy Lead, Compassion in
Dying, London
• Hazel Parsons, Nurse Specialist (Palliative Care), Dorothy House
Hospice, Wiltshire
• Lisa Pickering, Consultant Medical Oncologist, St George’s
Healthcare Trust, London
• Jonathan Shamash, Consultant Medical Oncologist, Barts and
the London NHS Trust and Newham University Hospital NHS
Trust, London
• Prostate Cancer UK Volunteers
• Prostate Cancer UK Specialist Nurses
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Advanced prostate cancer: Managing symptoms and getting support
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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:
• £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.
• £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
0800 082 1616, visit prostatecanceruk.org/donate 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
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Follow us on Twitter: @ProstateUK
Prostate Cancer UK is a registered charity in England and Wales (1005541)
and in Scotland (SC039332). Registered company number 2653887.
2915
Call our Specialist Nurses from Mon to Fri 9am - 6pm, Wed 10am - 8pm
* Calls are recorded for training purposes only.
Confidentiality is maintained between callers and Prostate Cancer UK.
ADV/APR15
© Prostate Cancer UK January 2015
To be reviewed January 2017