A practical guide to understanding cancer

A practical guide to
understanding cancer
This booklet is one of a series of booklets on prostate cancer.
It gives information about advanced (metastatic) prostate
cancer. This is when prostate cancer has spread beyond the
prostate gland to other parts of the body.
Our information booklets on prostate cancer are:
•• Having tests for prostate cancer
•• Understanding the PSA test
•• Understanding early (localised) prostate cancer
•• Understanding locally advanced prostate cancer
•• Understanding advanced (metastatic) prostate cancer
It’s important to check with your hospital consultant
or nurse specialist that this is the right booklet for you,
and whether you need any additional information.
If you would like more information about these booklets,
you can contact our cancer support specialists on
0808 808 00 00. They will be able to send you the
booklet or booklets that contain the information you need.
About this booklet
What is cancer?
The lymphatic system
The prostate gland
Prostate cancer
Risk factors and causes
How advanced prostate cancer is diagnosed
Staging and grading
Hormonal therapy
Controlling symptoms
Complementary therapies
Research – clinical trials
Dealing with the side effects of treatment
Coping with advanced prostate cancer 69
Your feelings
If you are a relative or friend
Understanding advanced (metastatic) prostate cancer
Talking to children
What you can do
Who can help?
Financial help and benefits
How we can help you
Other useful organisations
Further resources
Your notes and questions
TNM staging
Understanding advanced (metastatic) prostate cancer
Understanding advanced (metastatic) prostate cancer
About this booklet
This booklet is about advanced (metastatic)
prostate cancer. This is when prostate cancer has
spread beyond the prostate gland to other parts
of the body.
We hope it answers some of your questions and helps you
deal with some of the feelings you may have. We’ve also listed
other sources of support and information, which we hope you’ll
find useful.
We can’t advise you about the best treatment for you.
This information can only come from your doctor, who knows
your full medical history.
If you’d like to discuss this information, call the Macmillan
Support Line free on 0808 808 00 00, Monday–Friday,
9am–8pm. If you’re hard of hearing you can use textphone
0808 808 0121, or Text Relay. For non-English speakers,
interpreters are available. Alternatively, visit macmillan.org.uk
Turn to pages 91–104 for some useful addresses and websites,
and page 105 to write down any notes or questions you want
to ask your doctor or nurse.
If you find this booklet helpful, you could pass it on to your
family and friends. They may also want information to help
them support you.
What is cancer?
What is cancer?
The organs and tissues of the body are made up of tiny
building blocks called cells. Cancer is a disease of these cells.
Cancer is not a single disease with a single cause and a single
type of treatment. There are more than 200 different types of
cancer, each with its own name and treatment.
Although cells in different parts of the body may look and work
differently, most repair and reproduce themselves in the same
way. Normally, cells divide in an orderly and controlled way.
But if for some reason the process gets out of control, the cells
carry on dividing and develop into a lump called a tumour.
Tumours are either benign (non-cancerous) or malignant
(cancerous). Doctors can tell if a tumour is benign or malignant
by removing a piece of tissue (biopsy) and examining a small
sample of cells under a microscope.
Normal cells
Cells forming a tumour
Understanding advanced (metastatic) prostate cancer
In a benign tumour, the cells do not spread to other parts of
the body and so are not cancerous. However, they may carry
on growing at the original site, and may cause a problem by
pressing on surrounding organs.
In a malignant tumour, the cancer cells have the ability to
spread beyond the original area of the body. If the tumour is
left untreated, it may spread into surrounding tissue. Sometimes
cells break away from the original (primary) cancer. They may
spread to other organs in the body through the bloodstream
or lymphatic system (see next page).
When the cancer cells reach a new area they may go
on dividing and form a new tumour. This is known as a
secondary cancer or a metastasis.
The lymphatic system
The lymphatic system
The lymphatic system is part of the immune system – the body’s
natural defence against infection and disease. It’s made up
of organs such as bone marrow, the thymus, the spleen,
and lymph nodes. The lymph nodes throughout the body
are connected by a network of tiny lymphatic tubes (ducts).
The lymphatic system has two main roles: it helps to protect
the body from infection and it drains fluid from the tissues.
Neck (cervical)
lymph nodes
lymph nodes
lymph nodes
The lymphatic system
Understanding advanced (metastatic) prostate cancer
The prostate gland
The prostate is a small gland only found in men. It’s about the
size of a walnut and gets a little bigger with age. It surrounds
the first part of the tube (urethra) that carries urine from the
bladder along the penis.
Pubic bone
Vas deferens
The male sex organs and surrounding structures
Prostate cancer
The prostate produces a thick, white fluid that mixes with
the sperm produced by the testicles to make semen. It also
produces a protein called prostate-specific antigen (PSA)
that turns the semen into liquid.
The prostate gland is surrounded by a sheet of muscle and a
fibrous capsule. The growth of prostate cells and the way the
prostate gland works is dependent on the male sex hormone
testosterone, which is produced in the testicles.
The back of the prostate gland is close to the rectum (back
passage). Near the prostate are collections of lymph nodes.
These are small glands, each about the size of a baked bean.
Prostate cancer
Prostate cancer generally affects men over 50 and is rare in
younger men. It’s the most common type of cancer in men.
Around 37,000 men in the UK are diagnosed with prostate
cancer each year.
It differs from most other cancers in the body because small
areas of cancer within the prostate are very common and may
stay dormant (inactive) for many years.
It’s thought that about half (50%) of all men over 50 may have
cancer cells in their prostate, and 8 out of 10 (80%) men over
80 have a small area of prostate cancer. Most of these cancers
grow extremely slowly and so will never cause any problems,
particularly in elderly men.
Understanding advanced (metastatic) prostate cancer
In a small proportion of men, prostate cancer can grow
more quickly and in some cases may spread to other parts
of the body.
Advanced prostate cancer
Prostate cancer is usually diagnosed in the early stages before
it starts to spread outside the prostate gland. But in some men,
the prostate cancer will be advanced when it is first diagnosed.
Advanced prostate cancer can also occur in men who have
previously been treated for early or locally advanced prostate
cancer but their cancer has come back (relapsed or recurred).
We discuss the different stages of prostate cancer in more
detail on pages 26–27.
Prostate cancer cells can sometimes spread beyond the
prostate gland. The cancer cells may travel around the body
in the bloodstream or, less commonly, the lymphatic system
(see page 7). When these cells reach a new area of the body,
they may go on dividing and form a new tumour called a
metastasis or secondary tumour.
The most common places for prostate cancer to spread are to
bones such as the spine, pelvis, thigh bone (femur) and ribs.
Usually, the cancer cells will spread to a number of different
places in the bones rather than to a single site.
Sometimes prostate cancer can affect the bone marrow. This is
the spongy material that’s found in the centre of most bones.
It’s also where the body’s blood cells are made (see page 16).
Prostate cancer can also spread to the lymph nodes,
and occasionally it may affect the lungs, brain or liver.
Risk factors and causes
This booklet covers advanced prostate cancer.
We have separate booklets about early (localised)
and locally advanced prostate cancer. To order one
of these booklets or if you’re unsure which booklet
is suitable for you, call our cancer support specialists
on 0808 808 00 00.
Risk factors and causes
Researchers are trying to find out more about the causes
of prostate cancer. Although the causes are still unknown,
there are some risk factors that are known to increase a man’s
chance of developing the disease.
This is the strongest risk factor for prostate cancer. Men under
50 have a very low risk of prostate cancer, but their risk
increases as they get older.
Some ethnic groups have a greater chance of developing
prostate cancer than others. For example, black African and
black Caribbean men are more likely to develop prostate
cancer than white men. Asian men have a lower risk of
developing it.
Understanding advanced (metastatic) prostate cancer
Risk factors and causes
Family history
Men who have close relatives (a father, brother, grandfather or
uncle) who have had prostate cancer are slightly more likely to
develop it themselves.
It’s thought that a man’s risk of developing prostate cancer
increases if:
• their father or brother developed prostate cancer at or
under the age of 60
• more than one man on the same side of the family has
had prostate cancer.
If this is the case in your family, it may indicate that a faulty
gene is present.
A specific gene linked to prostate cancer has not yet been
identified. However, research has shown that faulty genes that
are linked to a higher risk of breast cancer (called BRCA 1 and
BRCA 2) may also increase the risk of getting prostate cancer.
So, if there’s a strong family history of breast cancer on the
same side of the family (especially before the age of 40),
it could indicate that a faulty gene may be present.
Only a small number of prostate cancers (5–10%, or less than
one in ten cases) are thought to be due to an inherited faulty
gene running in the family.
If you’re concerned about your family history of
prostate cancer, we can send you our leaflet Are you
worried about prostate cancer? We also have a booklet
called Cancer genetics – how cancer sometimes runs in
families. Call 0808 808 00 00 to order these.
Understanding advanced (metastatic) prostate cancer
Men from western countries such as the UK and USA have a
higher rate of prostate cancer than men from eastern countries
such as China and Japan. It’s thought that this might be because
western diets tend to be higher in animal fat (including dairy
products) and lower in fresh fruit and vegetables. Asian men
also tend to have a higher intake of soy in their diet. Soy and
soy products contain chemicals called phyto-oestrogens.
Researchers believe these might reduce the risk of prostate
cancer, but more research is needed to confirm this.
A high intake of calcium (such as from dairy foods) may
increase the risk of developing prostate cancer. However,
it’s important not to cut dairy products out altogether, as they
provide essential calcium for healthy bones.
Research studies have looked into whether tomatoes and
tomato products (such as ketchup) may help to protect against
prostate cancer. This may be because they contain high levels
of a substance called lycopene. Studies so far have shown
mixed results and more research is needed.
Prostate cancer is often slow-growing and symptoms may not
occur for many years.
The symptoms of advanced prostate cancer may include those
that are due to an enlarged prostate gland, or those that are
due to secondary cancers elsewhere in the body.
Symptoms of an enlarged prostate gland can include:
• difficulty passing urine
• passing urine more frequently than usual, especially at night
• pain when passing urine
• blood in the urine (this is uncommon).
The symptoms due to secondary cancers will depend on where
in the body the secondary cancers are. However, there are a
few general symptoms which some men have, including being
more tired than usual, feeling generally unwell and having less
of an appetite.
Secondary cancer in the bones
The first sign of a secondary cancer in the bones is usually a
nagging ache in the affected bone. This can become painful,
making it difficult to sleep at night or to move around without
taking painkillers.
The pain is generally there day and night and is different from
other types of pain like arthritis, which is often worse early in
the morning and not there all the time.
Understanding advanced (metastatic) prostate cancer
A secondary cancer in the bone may gradually make the bone
weaker. Pain and weakness can make getting around difficult,
and a bone that is very weak may break (fracture) more easily.
If the bones in the spine are affected, this can sometimes lead
to weakness and tingling or numbness in the legs. This is due
to the cancer causing pressure on the spinal cord and is known
as malignant spinal cord compression (see pages 57–59).
It’s important to let your doctor know immediately if you have
these symptoms. We can send you a fact sheet with more
information about malignant spinal cord compression.
When bones are affected by cancer cells, extra calcium may be
released into the blood. A raised blood calcium level is called
hypercalcaemia (see pages 60–61). This can cause symptoms
such as tiredness, feeling sick (nausea), constipation, thirst,
poor appetite and confusion.
Secondary cancer in the bone marrow
Sometimes prostate cancer can spread to the bone marrow.
This is the spongy material found in the centre of our bones.
It produces the different types of blood cells in the blood,
which include:
• red blood cells, which carry oxygen around the body
• white blood cells, which help fight infection
• platelets, which help the blood to clot and prevent bleeding.
If the bone marrow is unable to produce enough blood cells
you may become anaemic, be more likely to get infections or
to have bruising or bleeding.
Other symptoms
Prostate cancer can occasionally affect other parts of the
body such as the lungs, lymph nodes, brain or liver. If you
notice any new symptoms that last for a couple of weeks or
more, you should discuss them with your cancer specialist.
It’s important to remember that any of the symptoms
mentioned here can be caused by conditions other
than cancer.
Understanding advanced (metastatic) prostate cancer
How advanced prostate
cancer is diagnosed
If you have had early or locally advanced prostate cancer in
the past, you may be attending the hospital or seeing your
GP for regular check-ups and blood tests. If you develop new
symptoms, you’ll have tests to see if the cancer has spread.
These will usually include a PSA test and a bone scan.
Other tests will depend on your symptoms.
Some men are found to have prostate cancer after being
investigated for bone pain. If you have bone pain but no other
symptoms, your GP may arrange for you to have an x-ray or
scan of the painful area. This may be an isotope bone scan,
x-ray, CT scan or MRI scan (see pages 21–23).
If these tests suggest there is a secondary cancer in the bones,
further tests will be done to find out where the cancer started.
The following tests may be done to diagnose advanced
prostate cancer.
PSA test
A sample of blood is taken to check for PSA (prostate-specific
antigen). PSA is a protein produced by the prostate and a small
amount is normally found in the blood.
Men with prostate cancer tend to have a raised level of PSA
in their blood. However, this test isn’t always reliable, as PSA
levels also get higher as men get older.
How advanced prostate cancer is diagnosed
Understanding advanced (metastatic) prostate cancer
The level of PSA can also be raised by:
• urine infections or infections of the prostate (prostatitis)
• recent prostate biopsies
• having a urinary catheter (a tube to drain urine)
• prostate or bladder surgery
• prostate massage.
In most men with advanced prostate cancer the PSA level will
usually be high. Once the cancer has been treated, the PSA
level is likely to fall. Measuring PSA levels can help to assess
the cancer and see how well treatment is working.
You might be offered a biopsy. This is when several small
samples of tissue (usually around 10) are taken from the
prostate to be looked at under a microscope.
However, some men with advanced prostate cancer may have
a very high PSA or their scan results may show that the cancer
has spread. In this case, they may start treatment without
having a biopsy. Your doctor may also decide not to do a
biopsy if you’re very ill or have certain other medical conditions.
During the procedure, a needle is passed through the wall
of the back passage (rectum) and into the prostate. This test
is often uncomfortable and can sometimes be painful.
You may be given a local anaesthetic to reduce the discomfort.
Antibiotics are also given to reduce the risk of infection.
How advanced prostate cancer is diagnosed
It’s important to drink plenty of fluids for 24 hours after this test.
For up to a few weeks afterwards, you may notice blood in your
semen during sex. You may also experience a small amount
of blood in your urine or when opening your bowels. If these
symptoms persist, speak to your doctor.
Isotope bone scan
The most common place for prostate cancer to spread to is
to the bones. A bone scan can show abnormal areas of bone.
A very small amount of a mildly radioactive liquid is injected
into a vein, usually in your arm. A scan is then taken of the
whole body. Abnormal bone absorbs more of the radioactive
substance than normal bone and shows up on the scan as
highlighted areas called hot spots.
After the injection you’ll have to wait for up to three hours
before the scan can be taken, so it’s a good idea to take a
book or magazine with you.
The level of radioactivity that is used is very small and doesn’t
cause any harm. However, you may be asked to avoid long
periods of close contact with pregnant women or children for
2–3 days after the scan. The staff at the hospital will tell you
more about this.
This scan can also detect other conditions affecting the bones
such as arthritis. This means that further tests, such as an
x-ray of the abnormal area, may be necessary to confirm
that it is cancer.
Understanding advanced (metastatic) prostate cancer
X-rays of the chest and bones are sometimes taken to check
your general health and to see if the cancer has spread to
other parts of the body.
MRI (magnetic resonance imaging) scan
This test uses magnetism to build up a detailed picture of areas
of your body. The scanner is a powerful magnet so you may be
asked to complete and sign a checklist to make sure it’s safe
for you. The checklist asks about any metal implants you may
have, for example a pacemaker, surgical clips or bone pins.
You should also tell your doctor if you’ve ever worked with metal
or in the metal industry as very tiny fragments of metal can
sometimes lodge in the body. If you do have any metal in your
body, it’s likely that you won’t be able to have an MRI scan.
In this situation, another type of scan can be used.
Before the scan, you’ll be asked to remove any metal
belongings including jewellery. Some people are given an
injection of dye into a vein in the arm, which doesn’t usually
cause discomfort. This is called a contrast medium and can
help the images from the scan to show up more clearly.
During the test you’ll lie very still on a couch inside a long
cylinder (tube) for about 30 minutes. It’s painless but can
be slightly uncomfortable, and some people feel a bit
claustrophobic. It’s also noisy, but you’ll be given earplugs
or headphones. You can hear, and speak to, the person
operating the scanner.
How advanced prostate cancer is diagnosed
CT (computerised tomography) scan
A CT scan takes a series of x-rays, which build up a
three-dimensional picture of the inside of the body. The scan
takes 10–30 minutes and is painless. It uses a small amount
of radiation, which is very unlikely to harm you and will not
harm anyone you come into contact with. You will be asked
not to eat or drink for at least four hours before the scan.
Someone having a CT scan
You may be given a drink or injection of a dye, which allows
particular areas to be seen more clearly. This may make you
feel hot all over for a few minutes. It’s important to let your
doctor know if you are allergic to iodine or have asthma,
because you could have a more serious reaction to the injection.
You’ll probably be able to go home as soon as the scan is over.
Understanding advanced (metastatic) prostate cancer
Waiting for your test results
It will probably take from several days to a couple of weeks for
the results of the tests to be ready. The results will be used by
the doctors to decide on the best treatment for you.
Waiting for test results can be a difficult time and you
may need support from your family, friends or from
one of the support organisations on pages 91–95.
You can also talk to one of our cancer support
specialists on 0808 808 00 00.
Understanding advanced (metastatic) prostate cancer
Understanding advanced (metastatic) prostate cancer
Staging and grading
The stage of a cancer is a term used to describe its size and
whether it has spread. Knowing the stage of your cancer helps
doctors decide the best treatment for you.
There are a few different staging systems for prostate cancer.
Two of the most commonly used systems are a number staging
system and the TNM staging system.
The simplified number system is described below:
• Stage 1 The cancer is very small and confined to the
prostate. It can’t be felt during a rectal examination.
• Stage 2 The cancer can be felt as a hard lump during a
rectal examination, but it’s still within the prostate gland.
• Stage 3 The cancer has started to break through the outer
capsule of the prostate gland and may be in the nearby
tubes that transport semen (seminal vesicles – see page 8).
• Stage 4 The cancer has spread beyond the prostate
gland to nearby structures such as the bladder or back
passage (rectum), or to more distant organs such as the
bones or liver.
This booklet covers advanced prostate cancer (stage 4).
We have separate booklets about early (localised)
prostate cancer (stages 1 and 2) and locally advanced
prostate cancer (stage 3).
Staging and grading
The TNM staging system is more complicated than
the number staging system. We have more detailed
information about TNM staging at the back of this
booklet if you’d like to know more – see pages 106–109.
If your doctors did a biopsy of your prostate, they will look at
a sample of the cancer cells under a microscope to find out the
grade of your cancer. Prostate cancer is graded according to
the appearance of the cancer cells. The grade gives doctors
an idea of how quickly the cancer might grow.
There are several grading systems, but the Gleason system
is the most commonly used. This system can help doctors
decide which treatment might be best, as it gives them more
information about the cancer.
The Gleason system looks at the pattern of cancer cells within
the prostate. There are five patterns, which are graded from
1–5. 1 appears very similar to normal prostate tissue whereas
5 appears very different to normal tissue.
The biopsy samples are each graded and then the two most
commonly occurring patterns are added together to get a
Gleason score of between 2–10. The lower the Gleason score,
the lower the grade of the cancer. Low-grade cancers (6 or
under) are usually slow-growing and less likely to spread.
A score of 7 is a moderate grade. High-grade tumours (8–10)
are likely to grow more quickly and are more likely to spread.
High-grade tumours are sometimes called aggressive tumours.
Prostate biopsies with a Gleason score of 2 are rare. It’s more
common to get scores from 6–10.
Understanding advanced (metastatic) prostate cancer
When prostate cancer has spread beyond the prostate gland
and is affecting other parts of the body, it can no longer be
cured. However, treatment can usually be given to control the
cancer for several years, relieve any symptoms and improve
your quality of life.
Hormonal therapy (see page 34–41) is recommended to
most men who have advanced prostate cancer. A range of
hormonal therapies are available.
Surgery to remove the prostate gland isn’t suitable for men
with advanced prostate cancer, but occasionally a transurethral
resection of the prostate (TURP) can help to relieve problems
with passing urine (see page 43–46).
Chemotherapy (see pages 46–51) may be used if hormonal
therapy is no longer able to control the cancer.
Radiotherapy (see pages 52–54) is often used to treat
bone pain.
There are other treatments available that can effectively relieve
and control any symptoms you have (see pages 55–62).
Deciding on the best treatment isn’t always straightforward and
a number of factors have to be taken into account. The most
important of these are:
• your general health
• where the cancer is and the symptoms it’s causing
• the possible benefits of treatment
• the possible side effects of treatment
• how you feel about treatment and whether you’re willing
to risk getting the side effects for the possible benefits
in controlling your cancer
• whether you’ve had treatment before and, if so,
which treatments.
We have a video on our website about treating
advanced prostate cancer. You can view it at
How treatment is planned
In most hospitals, a team of specialists will discuss the possible
treatments for your situation. This multidisciplinary team (MDT)
will include:
• a surgeon (urologist)
• a medical oncologist (specialist in chemotherapy and
other drugs for cancer)
• a clinical oncologist (specialist in radiotherapy,
chemotherapy and other drugs for cancer)
• a specialist nurse.
It may also include other healthcare professionals such as
doctors who specialise in symptom control (palliative care
doctors), a dietitian, physiotherapist, occupational therapist,
psychologist or counsellor.
Understanding advanced (metastatic) prostate cancer
Second opinion
The MDT uses national treatment guidelines to decide the most
suitable treatment for you. Even so, you may want another
medical opinion. If you feel it will be helpful, you can ask either
your specialist or GP to refer you to another specialist for a
second opinion. Getting a second opinion may delay the start
of your treatment, so you and your doctor need to be confident
that it will give you useful information.
If you do go for a second opinion, it may be a good idea to
take a relative or friend with you, and have a list of questions
ready so that you can make sure your concerns are covered
during the discussion.
Advantages and disadvantages of treatments
It’s helpful to be aware of the advantages, possible
disadvantages and side effects of the treatments before
you have them. Your doctor or specialist nurse will explain
these to you. You can then decide what is best for your situation.
The advantages and disadvantages of individual treatments
for advanced prostate cancer are highlighted in green boxes
in the relevant treatment sections on pages 34–54.
It’s important to remember that everyone reacts differently
to cancer treatment. It’s impossible for doctors to accurately
predict who will and who won’t be affected by the side
effects of each treatment, so you need to ask about the risks
beforehand and have plenty of opportunity to discuss them.
Doctors and nurses are used to people asking questions about
treatment. It may also help to discuss the options with your
cancer specialist, specialist nurse or with our cancer support
specialists on 0808 808 00 00.
You may find it helpful to make a list of questions and to take
a relative or close friend with you to help you remember the
discussion. You can use page 105 to write down any notes and
questions you have.
Remember, there are often decisions to be made about
which treatment to have, or whether to have treatment at all.
You can take as large or small a part in making those decisions
as you wish – your healthcare team can help you make the
most appropriate decision for your situation.
You can always ask for more time if you feel that you can’t
make a decision when your treatment is first explained to you.
We have a booklet called Making treatment decisions –
call us on 0808 808 00 00 to order a copy.
Understanding advanced (metastatic) prostate cancer
Giving your consent
Before you have any treatment, your doctor will explain
its aims. They will ask you to sign a form saying that you
give permission (consent) for the hospital staff to give you
the treatment.
No medical treatment can be given without your consent,
and before you are asked to sign the form you should be
given full information about:
• the type and extent of the treatment
• its advantages and disadvantages
• any significant risks or side effects
• any other treatments that may be available.
If you don’t understand what you’ve been told, let the staff
know straight away so they can explain again. Some cancer
treatments are complex, so it’s not unusual for people to need
repeated explanations.
You are also free to choose not to have the treatment. The staff
can explain what may happen if you don’t have it. It’s essential
to tell a doctor, or the nurse in charge, so they can record your
decision in your medical notes. You don’t have to give a reason
for not wanting treatment, but it can help to let the staff know
your concerns so they can give you the best advice.
Understanding advanced (metastatic) prostate cancer
Understanding advanced (metastatic) prostate cancer
Hormonal therapy
Hormonal therapy is the main treatment for men with
advanced prostate cancer. It can shrink the cancer, delay its
growth and reduce symptoms.
Prostate cancer depends on the hormone testosterone in
order to grow. Testosterone is produced by the testicles and
a small amount is also produced by the adrenal glands.
Hormonal therapies work by reducing the amount or activity
of testosterone in the body.
There are different types of hormonal therapies that can be
used to treat advanced prostate cancer. You may be offered
treatment with more than one type. If you’ve had hormone
treatment before, you may be advised to try a different type.
Hormonal therapies can be given as injections (see next page)
or tablets (see page 37). Occasionally, an operation called a
subcapsular orchidectomy (see pages 39–40) may be done
to remove the part of the testicles that produces testosterone.
Hormonal treatment works well for most men with advanced
prostate cancer, and the cancer can often be controlled for
some time. Your doctor will check how well the cancer is
responding to treatment by checking your symptoms and
examining you. Your PSA level will also be measured, as this is
usually a good guide to how effective treatment is. If the cancer
starts to grow again, your doctor may suggest you change to a
different hormonal therapy drug.
Although there are several drugs that can be used, at some
point the cancer will stop responding to hormonal therapy.
Hormonal therapy
This is known as hormone-refractory prostate cancer or
castration-refractory prostate cancer. If hormonal therapy
is no longer working, your doctor may suggest chemotherapy
(see pages 46–51) or other treatments to relieve symptoms
(palliative treatments – see pages 55–62).
Hormonal therapy injections
GnRH agonists (pituitary down-regulators)
This type of hormonal therapy ‘switches off’ the production
of testosterone by the testicles in an indirect way.
The pituitary gland is a gland in the brain that produces
hormones that control and regulate the other glands in the
body. Gonadotrophin-releasing hormone (GnRH) is a hormone
that stimulates the pituitary gland to produce a hormone
called luteinising hormone (LH), which stimulates the testicles
to make testosterone.
GnRH agonists reduce the levels of LH produced by the
pituitary gland, and this in turn lowers the level of testosterone.
These drugs are also called pituitary down-regulators.
There may be a temporary increase in testosterone levels
for the first few days of treatment, which may increase your
symptoms. This is known as tumour flare and is normal.
Your doctor may prescribe an anti-androgen tablet
(see page 37) to prevent this. If you have any problems,
let your doctor know.
Understanding advanced (metastatic) prostate cancer
Examples of this type of hormonal therapy are:
• goserelin (Zoladex®)
• leuprorelin (Prostap®)
• triptorelin (Decapeptyl®).
These are usually given as a pellet (goserelin) injected under
the skin of the tummy (abdomen), or as a liquid (leuprorelin
or triptorelin) injected under the skin or into a muscle. Injections
are usually given either monthly or every three months.
Another GnRH agonist called Vantas® (histrelin acetate)
may sometimes be used to treat advanced prostate cancer.
It’s given just once a year as an implant under the skin.
It’s approved for use in the NHS in Scotland by the SMC
(Scottish Medicines Consortium). However, it is not widely
available on the NHS in England, Wales and Northern Ireland.
GnRH antagonists
This type of hormonal therapy stops the production of
luteinising hormone by the pituitary gland and so reduces the
level of testosterone produced by the testicles. The cancer cells
then grow more slowly or stop growing altogether, and the
cancer may shrink in size. GnRH antagonists works much more
quickly than GnRH agonists and don’t cause tumour flare.
Degarelix (Firmagon®) is a GnRH antagonist. It’s usually given
as a liquid injected under the skin of the tummy every month.
Hormonal therapy
Hormonal therapy tablets (anti-androgens)
Some hormonal therapy drugs work by attaching themselves
to proteins (receptors) in the cancer cells. This blocks the
testosterone from acting on the cancer cells. These drugs are
called anti-androgens and are given as tablets. Commonly
used anti-androgens are:
• bicalutamide (Casodex®)
• flutamide (Chimax®, Drogenil®)
• cyproterone acetate (Cyprostat®).
Anti-androgen tablets can be used alone as hormonal treatment
for prostate cancer, but they can also be used before treatment
with a pituitary down-regulator (GnRH agonist) starts.
This prevents tumour flare. The tablets are usually started
two weeks before starting with the pituitary down-regulator
and continued for a week after you’ve had the injection.
Anti-androgen withdrawal response
If hormonal therapy with an anti-androgen drug has been
given for some months or years and the cancer begins to
grow again, stopping the anti-androgen drug may make the
cancer shrink for a while. This is known as an anti-androgen
withdrawal response and occurs in up to one in four men (25%)
who stop anti-androgen therapy.
Intermittent hormonal therapy
The side effects of hormonal therapy (see pages 38–39)
can influence the quality of life for some men. Intermittent
hormonal therapy aims to improve this. If you have very bad
side effects from hormonal therapy, your doctors may stop your
Understanding advanced (metastatic) prostate cancer
treatment temporarily once you have responded to treatment.
This is to reduce the side effects. Once the disease has started
to progress again, hormonal therapy is re-started.
Your PSA levels will be monitored during the time you aren’t
having treatment. The outcome of this approach to treatment is
still being researched. Your doctor can discuss the advantages
and disadvantages of it with you.
Side effects of hormonal therapy
Unfortunately, most hormonal therapies can cause erection
difficulties (impotence) and loss of sexual desire (libido) for as
long as the treatment is given. If the treatment is stopped,
the problem may resolve. Some anti-androgens are less likely
to cause impotence than others.
In some men who have hormonal therapies, the side effects
that cause the greatest problems are hot flushes and sweating.
These stop if the treatment is stopped and the testosterone
levels recover. There are medicines that can help with these side
effects – we can send you information about these.
Hormonal treatment can also make you put on weight
and feel tired, both physically and mentally. Some drugs
(most commonly flutamide and bicalutamide when given
on their own) may also cause your breasts to swell and feel
tender. Your doctors may advise a short course of low-dose
radiotherapy to your breasts before you start the drugs to try to
prevent swelling. If breast swelling does occur, a tablet called
tamoxifen may help to ease this.
Different drugs have different side effects, so it’s important
to discuss these with your doctor before you start treatment.
Hormonal therapy
Being aware of the possible side effects can make them easier
to cope with.
Advantages Hormonal therapy can shrink the cancer, delay
its growth and relieve symptoms for many months or years.
Disadvantages Hormonal therapy can cause a range of
side effects that include breast swelling, hot flushes, weight
gain, fatigue, difficulty getting and maintaining an erection
(impotence) and a lowered sex drive (libido).
We have fact sheets about individual hormonal therapy
drugs with more information about how they work
and tips on coping with possible side effects. We also
have a fact sheet called Prostate cancer and hormonal
symptoms, which you may find helpful.
Subcapsular orchidectomy
(removal of part of the testicles)
This is an operation to remove the part of the testicles that
produces testosterone. A small cut is made in the scrotum
(the sac that holds the testicles – see diagram on page 8),
and the part of the testicles that produces testosterone is
removed. After the operation the scrotum will appear smaller
than it was before.
The operation can be done under a local anaesthetic without
the need to stay in hospital overnight. Sometimes both testicles
are completely removed (bilateral orchidectomy).
Understanding advanced (metastatic) prostate cancer
Some men find the idea of this operation distressing. You may
find it helpful to talk through the procedure with your cancer
specialist, who can give you more information about what this
operation involves.
After the operation, you’ll have some pain, and swelling and
bruising of the scrotum. Other side effects that develop later
are similar to those of hormonal therapy drugs, which include
hot flushes and impotence.
Advantages A subcapsular orchidectomy is a simple
operation that avoids the use of drugs and some of the
associated side effects such as breast swelling and tenderness.
Subcapsular orchidectomy and other hormonal treatments
are equally effective.
Disadvantages Some men find the idea of this operation
difficult to cope with. As with any operation, there are risks
associated with surgery. Your cancer specialist will give you
more information about these risks and the side effects you’re
likely to have.
Other hormonal treatments
Once the cancer is no longer responding to GnRH agonists,
GnRH antagonists or anti-androgens, many men can have
further periods of remission and a good quality of life by taking
either diethylstilbestrol (Stilboestrol®) or steroids.
Stilboestrol is a man-made drug that’s very similar to the
female hormone oestrogen. It reduces the amount of
testosterone in the body and is taken as a tablet once a day.
Hormonal therapy
Side effects include loss of sex drive, loss of facial hair,
and it may also cause some breast tenderness and swelling.
Stilboestrol can also increase the risk of getting a blood clot
(deep vein thrombosis). Your doctor may prescribe drugs called
warfarin or aspirin to reduce the risk of blood clots.
Sometimes a drug called ethinylestradiol is used instead of
Stilboestrol. The side effects are similar to those of Stilboestrol.
Steroids called prednisolone or dexamethasone are also taken
as tablets. They may cause some weight gain and increase
in appetite, but are usually tolerated well. Sometimes steroids
may be given with chemotherapy. Occasionally, they can cause
mood swings, difficulty sleeping and irritability. Let your doctor
know if you get any of these side effects. Difficulty sleeping may
be helped by taking the steroids earlier in the day, but check
this with your doctor first.
A new type of hormonal therapy called abiraterone acetate
is also available. It may be used in men when other types of
hormonal therapy and docetaxel chemotherapy (see page
46) are no longer working. Abiraterone has some side effects
including a high blood pressure and tiredness. Your doctor will
be able to give you more information about this.
The National Institute for Health and Clinical Excellence
(NICE) gives advice on which new drugs or treatments should
be available on the NHS in England and Wales. The Scottish
Medicines Consortium (SMC) is an organisation similar to NICE
for the NHS in Scotland. Abiraterone is recommended for use
by NICE and the SMC.
We can send you fact sheets about Stilboestrol,
abiraterone and steroids.
Understanding advanced (metastatic) prostate cancer
Some men are offered surgery to help with their symptoms.
Your doctor will discuss the operation with you. It’s important
that you understand what it involves, the possible side effects,
and whether or not there are other treatments that may be
more appropriate for you.
Subcapsular orchidectomy
This is an operation to remove part of the testicles.
Sometimes both testicles are removed (bilateral orchidectomy).
These procedures are done to reduce the level of the male
hormone testosterone in the body. You can read more about this
in our section about hormonal therapies (see pages 39–40).
Transurethral resection of the prostate (TURP)
If you have advanced prostate cancer, it’s not beneficial to
completely remove the prostate gland. But your doctors may
suggest an operation called a transurethral resection of the
prostate (TURP) to relieve problems you may have with passing
urine. It’s carried out if part of the tumour is blocking the
tube that drains urine from the bladder (the urethra). A TURP
can’t remove all of the cancer cells and is only used to relieve
problems with passing urine.
A tube with a small camera is passed through the urethra
into the prostate. A cutting instrument attached to the tube
is then used to shave the inner area of the prostate to remove
the blockage.
Understanding advanced (metastatic) prostate cancer
A TURP can be done under a general anaesthetic or with an
epidural. An epidural temporarily numbs the lower part of your
body. It involves having an anaesthetic injected into the spine
so you can’t feel anything even though you’re awake.
After your TURP
After your operation, you’ll probably be able to get out of bed
and move around the next day. You’ll usually have a drip giving
fluid into your vein. This will be taken out as soon as you’re
drinking normally.
You’ll also have a tube (catheter) to drain fluid from your bladder
into a collecting bag. It’s normal at this stage for your urine to
contain blood. To stop blood clots from blocking the catheter,
bladder irrigation may be used. This is when fluid is passed into
the bladder and drained out through the catheter. The blood
will gradually clear from your urine and the catheter can then be
taken out. At first, you may find it difficult to pass urine without
the catheter, but this should improve. Some men find that they
have some urinary incontinence following this procedure. It can
also cause some long-term difficulty in passing urine.
Most men are able to go home after three or four days.
Occasionally, you may need to keep the catheter in for
a while after you go home. In this case, the nurse will
show you how to look after it before you leave hospital.
Arrangements can be made for a district nurse to visit
you at home to help with any problems.
You may have pain and discomfort for a few days after your
operation. You’ll be given painkillers, which are usually very
effective. If you continue to feel pain, it’s important to let the
doctor or nurse looking after you know as soon as possible,
so that a more effective painkiller can be found.
Following a TURP, about 1 in 5 men may have retrograde
ejaculation. This means that during ejaculation semen goes
backwards into the bladder instead of forwards through the
urethra in the normal way. Your urine may look cloudy after
sex because there is semen in the bladder, but this is harmless.
Advantages Having a TURP can help relieve problems with
passing urine.
Disadvantages There is a risk of urinary incontinence and
bleeding after surgery. Some men have retrograde ejaculation
after having a TURP.
Percutaneous nephrostomy and JJ stent
In some men, one or both ureters (the tubes that connect the
kidneys to the bladder) may get blocked by the prostate cancer.
In this case, your doctor may insert a tube from the kidney(s) to
a bag outside on the skin to drain your urine. This is called a
percutaneous nephrostomy. Another way to drain the urine
from the kidney(s) to the bladder is to insert a fine tube called
a JJ stent into the ureter.
Your doctor or specialist nurse can give you more information
about these procedures.
Care after an operation
If you think that you might have any difficulties coping at home
after your operation, let your nurse or social worker know when
you’re admitted to hospital so that help can be arranged before
you leave. As well as being able to offer practical advice,
Understanding advanced (metastatic) prostate cancer
many social workers are also trained counsellors who can offer
valuable support to you and your family, both in hospital and
at home. If you would like to talk to a social worker, ask your
nurse or doctor to arrange it for you.
Before you leave hospital you’ll be given an appointment
to attend an outpatient clinic for your post-operative check-up.
This is a good time to discuss any problems you may have.
Chemotherapy is the use of anti-cancer (cytotoxic) drugs to
destroy cancer cells. In advanced prostate cancer, it’s used
to treat cancer that’s no longer being controlled by hormonal
therapy (hormone-refractory prostate cancer or castrationrefractory prostate cancer – see page 35).
Chemotherapy aims to shrink and control the cancer,
and relieve symptoms, with the aim of prolonging a good
quality of life. Chemotherapy drugs are usually given by
injection into a vein (intravenously).
The most commonly used chemotherapy drug to treat prostate
cancer is docetaxel (Taxotere®). Other drugs that may be
used are:
• mitoxantrone
• paclitaxel (Taxol®)
• cabazitaxel.
Understanding advanced (metastatic) prostate cancer
Understanding advanced (metastatic) prostate cancer
Cabazitaxel is a new chemotherapy drug. It may be given to
men who have previously had chemotherapy with docetaxel.
It’s licensed for use in the UK but has not been approved by
NICE or the SMC, so it may not be widely available on the NHS.
We have fact sheets about the individual chemotherapy
drugs mentioned in this section, and their side effects.
Side effects of chemotherapy
Each person’s reaction to chemotherapy is different.
Some people have very few side effects, while others
experience more. The main side effects are described here,
along with some of the ways they can be reduced.
Low resistance to infection (neutropenia)
Chemotherapy can reduce the number of white blood cells in
the blood, which help to fight infection. White blood cells are
produced by the bone marrow. If your number of white blood
cells is low, you will be more prone to infections. A low white
blood cell count is called neutropenia. This begins a few days
after treatment. Your number of white blood cells will then
increase steadily and usually return to normal before your next
cycle of chemotherapy is due.
Contact your doctor or the hospital straight away if:
• your temperature goes above 38˚C (100.4˚F)
• you suddenly feel unwell, even with a normal temperature.
You will have a blood test before having more chemotherapy
to check the number of white blood cells. Occasionally, your
treatment may need to be delayed if your number of blood
cells (blood count) is still low.
Bruising or bleeding
Chemotherapy can reduce the production of platelets,
which help the blood to clot. Tell your doctor if you have
any unexplained bruising or bleeding such as nosebleeds,
bleeding gums, blood spots or rashes on the skin. You can
have a platelet transfusion if your platelet count is low.
Low number of red blood cells (anaemia)
Chemotherapy can reduce your number of red blood cells,
which carry oxygen around the body. A low red blood
cell count is called anaemia. This may make you feel tired
and breathless. Tell your doctor or nurse if you have these
symptoms, as you may need to have a blood transfusion if
the number of red blood cells becomes too low.
Feeling sick (nausea) or being sick (vomiting)
Chemotherapy can make you feel or be sick. Your doctor can
prescribe very effective anti-sickness (anti-emetic) drugs to
prevent, or greatly reduce, nausea or vomiting. If the sickness
isn’t controlled, or if it continues, tell your doctor. They can
prescribe a different anti-sickness drug that may be more
effective for you.
Sore mouth
Your mouth may become sore or dry, or you may notice
small ulcers in your mouth during treatment. Drinking plenty
of fluids, and cleaning your teeth regularly and gently with a
soft toothbrush, can help to reduce the risk of this happening.
Some people find sucking on ice soothing if they do get a sore
mouth. Tell your nurse or doctor if you have these problems,
as they can prescribe mouthwashes and medicine to prevent
or clear mouth infections.
Understanding advanced (metastatic) prostate cancer
Loss of appetite
Some people lose their appetite while having chemotherapy.
This can be mild and may only last a few days. If it doesn’t
improve, you can ask to see a dietitian or specialist nurse at
your hospital. They can give you advice on improving your
appetite and keeping to a healthy weight.
Hair loss
This is a common side effect of some chemotherapy drugs.
Some men find this distressing. However, there are many ways
of covering up hair loss, including wigs or hats. If you do lose
your hair, it should start to grow back within about 3–6 months
of finishing treatment.
Tiredness (fatigue)
Feeling tired is a common side effect of chemotherapy,
especially towards the end of treatment and for some weeks
after. It’s important to try to pace yourself and to get as much
rest as you need. Try to balance rest with some gentle exercise
such as short walks, which will help. If tiredness is making you
feel sleepy, don’t drive or operate machinery.
Chemotherapy can cause diarrhoea. This can usually be
easily controlled with medicine but tell your doctor if it is
severe or continues. It’s important to drink plenty of fluids
if you have diarrhoea.
Our booklet Understanding chemotherapy discusses
the treatment and its side effects in more detail.
Although side effects may be hard to deal with at the time,
they will gradually disappear once your treatment finishes.
Advantages Chemotherapy may help to control the
cancer and relieve symptoms if hormonal therapies are
no longer working.
Disadvantages Chemotherapy can cause unpleasant
side effects.
Understanding advanced (metastatic) prostate cancer
You may be offered radiotherapy if the cancer causes
symptoms, such as pain in the prostate area, or if it has
spread to other parts of the body such as the bones. In this
situation, radiotherapy can’t get rid of all the cancer cells, but it
can reduce symptoms. This is known as palliative radiotherapy.
It can take 7–10 days for the radiotherapy to start reducing the
pain, and may take up to six weeks before the full effect is felt.
Our booklet Understanding radiotherapy gives more
detail about this treatment and its side effects.
Palliative radiotherapy
If prostate cancer has spread to the bones, radiotherapy can
be given to the affected bone or area. It may be given as a
single treatment, or may be divided into a series of smaller
treatments. Many men notice that the pain eases within a couple
of days, while others may have to wait three or four weeks.
Painkillers can still be taken in the meantime if necessary.
The radiotherapy staff will explain your treatment and its
possible side effects to you beforehand.
Occasionally, if there are cancer cells in more than one area
of bone, you may be given treatment known as hemibody
irradiation. Treatment is given to a large area, either to the
top or the bottom half of the body. This type of radiotherapy
normally gives good pain relief within a few days. However,
the side effects of treatment are likely to be greater than with
radiotherapy to a smaller area.
Your doctor will prescribe anti-sickness drugs for you and you
may have a short stay in hospital. If necessary, the other half
of your body can be treated later, once the side effects have
worn off.
We have a booklet called Understanding secondary
cancer in the bone, which gives more detail about the
possible treatments available.
This treatment for secondary cancer in the bone uses a
radioactive material (isotope) called strontium-89, which is
taken up by the affected areas of bone. It’s useful if several
areas of bone are affected and are causing pain.
The isotope is given as an injection into a vein in the arm.
This can usually be done in the outpatients department.
After the injection, a small amount of radioactivity is present
in the urine, so men are advised to use flush toilets instead
of urinals to reduce the risk of anyone else being exposed to
the radiation. The hospital staff will discuss any other special
precautions with you before you go home.
The amount of radioactivity is very small, so it’s safe for you
to be with other people, including children. Most men feel
some effect from the treatment within a few weeks, although
occasionally the pain may get slightly worse before it gets better.
Understanding advanced (metastatic) prostate cancer
Radium-223 is a new treatment for secondary cancer in
the bone that also uses a radioactive material. It has had
encouraging results in clinical trials and, so far, has shown
only mild side effects.
Advantages Radiotherapy can help to relieve bone pain and
strengthen a weakened bone. The aim is to make you feel
more comfortable. Usually there are only a few side effects,
which are generally mild.
Disadvantages Pain may become slightly worse before it
gets better.
Controlling symptoms
Controlling symptoms
Advanced prostate cancer may cause unpleasant symptoms.
These may be relieved by treating the cancer itself. Sometimes
treatments work quickly and you may notice an improvement
within a few days. Other treatments may take longer to work, so
it can be a couple of weeks before you begin to feel any benefit.
Apart from treating the cancer itself, there are many other ways
to help relieve symptoms. This section talks about what options
may be available to you.
There are many different types of painkillers. They vary both
in their strength and in the way they work. Some painkillers
are better for certain types of pain, and some suit certain men
better than others. It’s often better to take painkillers regularly,
even if you’re not in pain when the next dose is due. This is
because painkillers not only relieve pain at the time, but prevent
it from coming back too.
Painkillers can be taken as tablets, liquids, or as suppositories
that are inserted into the back passage. Some are also given as
injections under the skin or patches that are applied to the skin.
It’s important to tell your doctor or nurse if the painkillers you’re
taking aren’t easing your pain. Your doctor can either change
the dose or change the painkillers to something else that will be
more effective for you.
Understanding advanced (metastatic) prostate cancer
Pain caused by prostate cancer cells in a bone can be severe.
Radiotherapy (see pages 52–54) is very good at easing this
type of pain, but can take a few weeks to work. Often drugs
containing morphine are needed while the treatment is being
planned, or while you are waiting for the radiotherapy to work.
Some men find that morphine makes them feel drowsy when
they first start taking it, but this usually only lasts for a day
or so. Taking morphine may also make some men feel sick at
first, and they may need to take an anti-sickness (anti-emetic)
tablet prescribed by their doctor for the first few doses.
It may also cause constipation (see page 60).
A number of other drugs can help to relieve pain. If pain
is due to prostate cancer cells in a bone, non-steroidal
anti-inflammatory drugs (NSAIDs) can help. These have
few side effects, but can sometimes irritate the lining of
the stomach.
Drugs called bisphosphonates can also help relieve bone pain.
Bisphosphonates such as Zoledronic Acid (Zometa®) can help
to strengthen bones and lower the risk of fractures. They can
also reduce high levels of calcium in the blood (hypercalcaemia
– see pages 60–61), as well as reduce pain. They may be given
into a vein (intravenously) in the outpatients department every
3–4 weeks.
Denosumab is a new drug that helps to protect the bones, but
it works in a different way to bisphosphonates. It may not be
widely available – your doctor can give you more information.
We can send you fact sheets about bisphosphonates
and their side effects.
Controlling symptoms
If you’re having trouble sleeping because of pain, your doctor
can prescribe sleeping tablets or a mild relaxant.
Anxiety and lack of sleep can make pain worse. For this reason,
some men also find that practising relaxation techniques helps
them feel more comfortable. A gentle massage can also help
your body relax and distract your mind from pain. It’s advisable
to have a massage from a trained massage therapist who
works with cancer patients.
Heat can also help to ease pain. A long soak in a warm bath,
a heat pack or a well-protected hot water bottle can all bring
some short-term pain relief for some men.
Being in pain can make you feel very low. It’s important to
let your doctor know if the drugs prescribed aren’t working.
Remember there are many different ways to control pain.
There are special NHS pain clinics run by doctors and nurses
who are experts in treating pain. You can ask your doctor to
refer you to a clinic if your pain is not controlled by any of the
methods mentioned here.
We can send you our booklet Controlling cancer pain,
which has more detailed information. We also have
a booklet called Controlling the symptoms of cancer,
which you may find helpful.
Malignant spinal cord compression
If the bones in the spine are affected by the cancer, it can
sometimes lead to weakness and tingling or numbness in
the legs due to pressure on the spinal nerves. This is called
malignant spinal cord compression. Some men may have pain
that comes on quickly and is different from their normal pain.
Understanding advanced (metastatic) prostate cancer
Controlling symptoms
They may also have problems passing urine or controlling
their bowels. Constipation may also become a problem.
Treatment can often prevent permanent damage to the nerves.
It’s important to contact your cancer specialist immediately if you
develop any of the symptoms mentioned here. We can send you
more information about malignant spinal cord compression.
You may find that you easily become tired and that your body is
no longer as strong and reliable as it once was, either because
of the cancer or the side effects of treatment. You may feel that
you have no strength and everything is more of an effort.
It can be difficult to adjust if tiredness makes it difficult for you
to drive or take part in your usual activities, or if you have to
walk more slowly than before. It’ll take time to get used to these
changes. You may need to rest more, and you may be unable
to do the things you once took for granted.
If you have little energy, save it for the things you really want
to do. Very often, re-organising your daily activities can be
helpful – for example, by setting aside a time to rest every day.
Practical aids such as wheelchairs can also be useful. You may
feel that by using a walking stick, frame or wheelchair you are
‘giving in’ to your illness, but they can greatly improve your life,
allowing you to move around more easily. You may find our
booklet Coping with fatigue helpful.
Sometimes the cancer or the treatment can cause anaemia,
which can make you feel tired. If this happens, you may be
given a blood transfusion, which can often give you more
energy and reduce tiredness.
Understanding advanced (metastatic) prostate cancer
Constipation can be caused by taking strong painkillers or if
you have too much calcium in your blood. It can also occur if
you lose your appetite and are not eating as much as before,
or if you are getting less exercise.
Having fibre in your diet, drinking plenty of fluids and walking
will help, but you may also need to take a medicine (laxative)
to stimulate the bowel. Your doctor will be able to prescribe
one that’s suitable for you. Your nurses can also advise you on
ways to prevent or relieve constipation.
Difficulty sleeping (insomnia)
Even though you may feel tired, it’s not uncommon to have
difficulty sleeping. You may have a lot on your mind, and this
can add to the problem.
Sleeping tablets can be helpful, and the newer types now
available are less likely to make you feel drowsy the following
day. You can also try some natural remedies like drinking
malted milk or chamomile tea before bed, a glass of brandy
or whisky in the evening, having a warm bath with soothing
bath oils, or a relaxing body massage to relieve muscle tension.
We can send you information about difficulty sleeping.
High levels of calcium in the blood (hypercalcaemia)
Prostate cancer cells in a bone may make extra calcium pass out
of the damaged bone and into the blood. High levels of calcium
in the blood can make you feel extremely tired and thirsty,
and you may pass lots of urine. Hypercalcaemia can also make
you feel sick, and some people become irritable and confused.
Controlling symptoms
Depending on your calcium level, you may be able to have
treatment as an outpatient or you may need to spend a few
days in hospital.
Your doctor will give you drugs called bisphosphonates.
These drugs are given as a drip into a vein in your arm. Each
treatment takes between 15 minutes and one hour, and can be
repeated every few weeks. They are usually effective at getting
the calcium levels back to normal. Your doctor may also ask you
to drink plenty of water. Sometimes the drip will be used to give
extra fluids into a vein in your arm (an intravenous infusion).
Weakened bones
You may need an operation if prostate cancer cells have
weakened a bone so much that there’s a risk of it breaking.
This is done under a general anaesthetic.
The surgeon will put a metal pin into the centre of the bone
and may also fix a metal plate to it. This holds the bone firmly
so it won’t break. The pin and plate can stay in permanently.
This is mainly used for the long bones in the legs, but is
sometimes used when there are secondary cancers in other
bones such as the spine. If your hip is affected, the hip joint
may be replaced.
You’ll need to stay in hospital for a week or longer after
the operation so you can fully recover. However, most men
are able to get up and start walking around a couple of days
after surgery.
This sort of operation may be done before radiotherapy is
given, if there is a chance the bone may break before the
radiotherapy has treated the cancer cells.
Understanding advanced (metastatic) prostate cancer
If your doctors feel the bone is unlikely to fracture,
bisphosphonates may be used to help strengthen the
bone and prevent it from breaking.
Complementary therapies
Some men find that complementary therapies can help
them feel stronger and more confident in dealing with
advanced prostate cancer. It’s important to tell your doctors
if you’re planning on using any complementary therapies.
They can usually be used alongside conventional treatments
and medicines.
Complementary therapies can help to improve quality of
life, and can sometimes help to reduce symptoms. Some
complementary therapies, such as meditation or visualisation,
can be done by the person with cancer themselves and can help
reduce anxiety. Other therapies such as gentle massage can be
carried out by a trained massage therapist, and relatives and
carers can be shown how to do it for you at home.
Gentle physical contact and touch can be among the most
powerful forms of support for people who are faced with
uncertainty, fear or pain, whether emotional or physical.
Many hospices and hospitals offer complementary therapies
alongside conventional care. These may include:
• aromatherapy
• colour and sound therapy
Research – clinical trials
• massage
• relaxation, visualisation or guided-imagery techniques
• acupuncture.
We can send you our booklet about cancer and
complementary therapies.
Research – clinical trials
Cancer research trials are carried out to try to find new and
better treatments for cancer. Trials that are carried out on
patients are called clinical trials. These may be carried out to:
• test new treatments such as new chemotherapy drugs,
gene therapy or cancer vaccines
• look at new combinations of existing treatments, or change
the way they are given, to make them more effective or
reduce side effects
• compare the effectiveness of drugs used to control symptoms
• find out how cancer treatments work
• find out which treatments are the most cost-effective.
Trials are the only reliable way to find out if a different type
of hormonal therapy, surgery, chemotherapy, radiotherapy or
other treatment is better than what is already available.
Understanding advanced (metastatic) prostate cancer
Taking part in a trial
You may be asked to take part in a treatment research trial,
and there can be many benefits in doing this. Trials help to
improve knowledge about cancer and develop new treatments.
You’ll be carefully monitored during and after the study.
Usually, several hospitals around the country take part in these
trials. It’s important to bear in mind that some treatments that
look promising at first are often later found to be less effective
than existing treatments or to have side effects that outweigh
the benefits.
If you decide not to take part in a trial your decision will be
respected and you do not have to give a reason. There will be
no change in the way you are treated by the hospital staff and
you’ll be offered the standard treatment for your situation.
Our booklet Understanding cancer research trials
(clinical trials) describes clinical trials in more detail.
We can send you a copy.
Blood and tumour samples
Blood and tumour samples may be taken to help make the
right diagnosis. You may be asked for your permission to use
some of your samples for research into cancer. If you take
part in a trial you may also give other samples, which may be
frozen and stored for future use when new research techniques
become available. Your name will be removed from the
samples so you can’t be identified.
The research may be carried out at the hospital where you
are treated, or at another one. This type of research takes a
Dealing with the side effects of treatment
long time, and results may not be available for many years.
The samples will be used to increase knowledge about the
causes of cancer and its treatment, which will hopefully improve
the outlook for future patients.
Our website has information about current clinical trial
databases – visit macmillan.org.uk/clinical trials
Dealing with the side effects
of treatment
Unfortunately, treatment for prostate cancer can cause
unpleasant and distressing side effects; both short- and
Sexual problems/erection difficulties
Any type of treatment can make you less interested in sex.
This is known as loss of libido and is common to many
illnesses, not just cancer. Hormonal therapy, which is the main
treatment for advanced prostate cancer, reduces testosterone
levels, which can affect your ability to get or maintain an
erection (impotence). However, the problems may not be
permanent and can sometimes be caused by anxiety rather
than the treatment.
Many men find it difficult to talk about personal subjects such
as erection problems, particularly with their doctor or other
healthcare staff. Some men also find it difficult to talk to their
partner, if they have one, for fear of rejection – but these fears
Understanding advanced (metastatic) prostate cancer
are often unfounded. Sexual relationships are built on many
things such as love, trust and common experiences. It can help
to talk to your partner about your fears and worries.
If you find the effect on your sex life difficult to deal with,
you could discuss this with your doctor. Although you may
worry that this will be embarrassing, doctors who deal with
prostate cancer are very used to talking about these issues and
will be able to give you advice. There may be practical ways to
help overcome impotence and your doctor will be able to give
you further information about these. Most hospitals also have
specialist nurses who can discuss the issues with you.
You may find it helpful to read our leaflet Cancer,
you and your partner. We also have a booklet called
Sexuality and cancer.
Urinary incontinence
Losing control of your bladder may be caused by the cancer
itself, by surgery or, rarely, by radiotherapy. A lot of progress
has been made in dealing with incontinence, and there are
several different ways of coping with the problem. You can
discuss any concerns with your doctor or nurse. Some hospitals
have medical staff who are specially trained to give advice
about incontinence. The Bladder and Bowel Foundation
(see page 91) can also offer useful information.
It‘s important to recognise that these problems don’t affect all
men. You can ask your doctor as many questions as you like
about your treatment and the possible side effects. Then you
can be better prepared to cope if problems arise.
Dealing with the side effects of treatment
You can also speak to our cancer support specialists on
0808 808 00 00.
Just Can’t Wait toilet card
If you need to go to the toilet more often, or feel that you can’t
wait when you do want to go, you can get a card to show to
staff in shops, pubs and other public places. The Just Can’t
Wait toilet card allows you to use their toilets without them
asking awkward questions. You can get the cards from the
Bowel and Bladder Foundation.
Most treatments for prostate cancer are likely to cause infertility,
which means that you’ll no longer be able to father a child.
This can be very distressing if you want to have children.
Your cancer specialist can talk to you about this before you
start treatment, and you may wish to discuss the issue with your
partner, if you have one. It’s sometimes possible to store sperm
before treatment starts. The sperm may then be used later as
part of fertility treatment.
We have information about ways of preserving
fertility in our leaflet Cancer treatment and fertility –
information for men.
Understanding advanced (metastatic) prostate cancer
Coping with advanced prostate cancer
Coping with advanced
prostate cancer
Advanced prostate cancer or its treatment may leave you
feeling tired and depressed. You may feel as though you
have less energy than you did before treatment started.
The cancer itself may cause some physical effects such as
tiredness or feeling sick (nausea). Having treatment can be
difficult and it can take a while to physically and emotionally
recover from it. Your treatment may last for months and you
may not get the chance to get back to normal until it’s complete.
In this section we’ve listed some tips, which you
may find help you cope with the effects of prostate
cancer treatment.
Your body needs extra nutrients and calories during and after
treatment for cancer. It’s important to try to keep eating well,
even if you haven’t got much of an appetite. Try eating little
and often. Make the most of ready-prepared meals if you
haven’t got the energy to cook. Our booklet The building-up
diet has some helpful tips.
Rest and activity
Both rest and activity are necessary for good health, and it’s
important to find the right balance between the two. Your body
will tell you when you need to rest, but it’s important not to stop
doing things completely, just as it’s important not to overstretch
Understanding advanced (metastatic) prostate cancer
yourself. When you’re having treatment or if you’re unwell,
you use up a lot more energy than usual. It is important to
rest and give your body time to repair itself.
When you do feel like doing things, it’s important not to do
too much. Start by setting yourself small goals such as walking
around the garden or spending a few hours a week at work.
Staying in hospital
For some men, treatment may involve a stay in hospital.
Being inactive like this, even for just a few days, may leave you
feeling physically weaker, and perhaps nervous about how you’ll
manage when you go home. It may help to spend some time
with the hospital physiotherapist and occupational therapist.
The physiotherapist can put together an exercise programme
for you and work with you to build up your muscle strength and
confidence. The occupational therapist can help you regain
your confidence to manage at home and can offer you
practical advice.
Before you go home, you and your family may wish to talk to
a Macmillan nurse, the ward sister or charge nurse, or hospital
social worker. They can help you with any immediate problems
you have. For financial advice, you can contact Citizens Advice
(see pages 95–96) or call the Benefit Enquiry Line on 0800
882 200.
Your hospital doctor or discharge planning team can ring
your GP’s surgery to let them know you’re going home.
They should also tell your GP about your condition and any
treatment that needs to be continued at home. The hospital
staff can refer you to a community palliative care nurse to
continue your care at home.
Your feelings
Your feelings
Most people feel overwhelmed when they are told they have
cancer, and have many different emotions. These are part of
the process you may go through when dealing with your illness.
Partners, family members and friends often have similar feelings
and may also need support and guidance to help them cope.
Reactions differ from one person to another – there’s no right
or wrong way to feel. We describe some of the common
emotional effects of cancer here. However, reactions vary
and people have different emotions at different times.
Our booklet How are you feeling? discusses the
emotions you may have in more detail, and has
suggestions for coping with them.
Shock and disbelief
Disbelief is often the immediate reaction when cancer is
diagnosed. You may feel numb and unable to express any
emotion. You may also find that you can only take in a small
amount of information, and so you have to keep asking the
same questions again and again. This need for repetition
is a common reaction to shock. Some people find that their
feelings of disbelief make it difficult for them to talk about their
illness with family and friends. For others it may be the main
topic of conversation as it’s the main thing on their mind.
You may find our booklet Talking about your
cancer helpful.
Understanding advanced (metastatic) prostate cancer
Fear and uncertainty
Cancer is a frightening word surrounded by fears and myths.
One of the greatest fears people have is whether they will die.
When a cancer is not curable, current treatments often mean
that it can be controlled for some time.
Many people are anxious about whether their treatment will
work and have any side effects. It’s best to discuss your
treatment and possible outcomes in detail with your doctor.
You may find that doctors can’t answer your questions fully,
or that their answers sound vague. It’s often impossible for
them to say for certain how effective treatment will be.
Doctors know roughly how many people may benefit from
a certain treatment, but they can’t predict the future for a
particular person. Many people find this uncertainty hard to live
with, but your fears may be worse than the reality. Finding out
about your illness can be reassuring. Discussing what you
have found out with your family and friends can also help.
You might find it helpful to talk to other people in your situation.
Call our cancer support specialists on 0808 808 00 00 to find
out if there’s a support group in your area. Or you can visit our
online community at macmillan.org.uk/community to chat
any time with people who know what you’re going through.
Some people find some form of spiritual support helpful at this
time, and you may like to talk to a spiritual or religious adviser.
Your feelings
Many people cope with their illness by not wanting to know
much or talk much about it. If that’s the way you feel, just let
your family and friends know that you’d prefer not to talk about
your illness, at least for the time being.
Sometimes, however, it’s the other way around. You may
find that your family and friends don’t want to talk about your
illness. They may appear to ignore the fact that you have
cancer, perhaps by playing down your worries and symptoms
or deliberately changing the subject. If this upsets or hurts you,
try telling them. Perhaps start by reassuring them that you know
why they’re doing it, but that it will help you if you can talk to
them about your illness.
People often feel very angry about their illness. Anger can also
hide other feelings, such as fear or sadness. You may direct your
anger at the people closest to you, or at the doctors and nurses
caring for you. It’s understandable that you may be very upset
by many aspects of your illness, so you don’t need to feel guilty
about your angry thoughts or irritable moods.
Bear in mind that your family and friends may sometimes think
that your anger is directed at them, when it’s really directed at
your illness. It may help to tell them this, or perhaps show them
this section of the booklet.
Understanding advanced (metastatic) prostate cancer
Blame and guilt
Sometimes people blame themselves or others for their illness,
trying to find reasons to explain why it has happened to them.
This may be because we often feel better if we know why
something has happened. In most cases it’s impossible to
know exactly what has caused a person’s cancer. So there’s
no reason for you to feel that anyone is to blame.
Understandably, you may feel resentful because you have
cancer while other people are well. These feelings may crop
up from time to time during the course of your illness and
treatment. It usually helps to discuss these feelings, rather than
keeping them to yourself.
Isolation and depression
There may be times when you want to be left alone to work
through your thoughts and emotions. This can be hard for
your family and friends, who want to share this difficult time
with you. It may help them cope if you reassure them that,
although you don’t feel like discussing your illness at the
moment, you’ll talk to them about it when you’re ready.
Sometimes, depression can stop you wanting to talk. If you
or your family think you may be depressed, discuss this with
your GP. They can refer you to a doctor or counsellor who
specialises in the emotional problems of people with cancer,
or prescribe an antidepressant drug for you.
We have a video at macmillan.org.uk/depression
that may be helpful.
If you are a relative or friend
If you are a relative or friend
Some people find it hard to talk about cancer or share their
feelings. You might think it’s best to pretend everything is fine,
and carry on as normal. You might not want to worry the person
with cancer, or you might feel you’re letting them down if you
admit to being afraid. Unfortunately, denying strong emotions
can make it even harder to talk, and may lead to the person
with cancer feeling very isolated.
Partners, relatives and friends can help by listening carefully to
what the person with cancer wants to say. It may be best not
to rush into talking about the illness. Often it’s enough just to
listen and let the person with cancer talk when they are ready.
You may find some of the courses on our Learn Zone website
helpful. There are courses to help with listening and talking,
to help friends and family support their loved ones affected by
cancer. Visit macmillan.org.uk/learnzone to find out more.
Our booklet Lost for words: how to talk to someone
with cancer has more suggestions if you have a friend
or relative with cancer.
If you’re looking after a family member or friend with cancer,
you may find our booklet Hello, and how are you? helpful.
It’s based on carers’ experiences and has lots of practical tips
and information.
We have more information about supporting
someone with cancer at macmillan.org.uk/carers
Understanding advanced (metastatic) prostate cancer
The experience of cancer may have improved your relationships
with people close to you. The support of family and friends may
have helped you cope. But cancer is stressful, and this can have
an effect on relationships. Any problems usually improve over
time, especially if you can talk openly about them.
Your partner
Some couples become closer through a cancer experience.
However, cancer can put a lot of strain on a relationship.
Problems sometimes develop, even between couples who’ve
been together for a long time. If a relationship was already
difficult, the stress of a major illness may make things worse.
Even couples that are close may not always know how their
partner is feeling. Talking openly about your feelings and
listening to each other can help you understand each other.
Our booklets Cancer, you and your partner and
Sexuality and cancer have more information that
may help.
Family and friends
Your family and friends may not always understand if you aren’t
feeling positive about getting on with things, and may not know
how big an effect treatment is having on your life. Talking about
how you feel will help them give you the support you need.
Our booklet Talking about your cancer has more
useful tips.
Understanding advanced (metastatic) prostate cancer
Understanding advanced (metastatic) prostate cancer
Talking to children
Deciding what to tell your children or grandchildren about your
cancer is difficult. An open, honest approach is usually best.
Even very young children can sense when something is wrong,
and their fears can sometimes be worse than the reality.
How much you tell your children will depend on their age
and how mature they are. It may be best to start by giving
only small amounts of information and gradually tell them
more to build up a picture of your illness.
Teenagers can have an especially hard time. At a stage when
they want more freedom, they may be asked to take on new
responsibilities and they may feel over-burdened. It’s important
that they can go on with their normal lives as much as possible
and still get the support they need.
If they find it hard to talk to you, you could encourage them
to talk to someone close who can support and listen to them,
such as a grandparent, family friend, teacher or counsellor.
They may also find it useful to look at the website riprap.org.uk
which has been developed especially for teenagers who have a
parent with cancer.
Our booklet Talking to children when an adult has
cancer includes discussion about sensitive topics.
There’s also a video on our website that may help,
at macmillan.org.uk/talkingtochildren
What you can do
What you can do
One of the hardest things to cope with can be the feeling that
the cancer and its treatment have taken over your life. This is
a common feeling, but there are lots of things you can do.
There may be days when you feel too tired to even think about
what could help. You’ll have good and bad days. If you’re
overwhelmed by these feelings, let your doctor or nurse know.
It may be that you have depression, and this is treatable so they
should be able to help.
Finding ways to cope
You may find it helps to try to carry on with life as normally as
possible, by staying in contact with friends and keeping up your
usual activities.
Or you may want to decide on new priorities in your life.
This could mean spending more time with family, going on
the holiday you’ve dreamed about or taking up a new hobby.
Just thinking about these things and making plans can help
you realise that you still have choices.
Some people want to improve their general health by eating
a more healthy diet, by getting fitter or by finding a relaxing
complementary therapy.
Understanding about the cancer and its treatment helps many
people cope. It means they can discuss plans for treatment,
tests and check-ups with their doctors and nurses. Being involved
in these choices can help give you back control of your life.
Understanding advanced (metastatic) prostate cancer
Who can help?
Many people are available to help you and your family.
District nurses work closely with GPs and make regular
visits to patients and their families at home if needed.
The hospital social worker can give you information about
social services and benefits you may be able to claim, such as
meals on wheels, a home helper or hospital fares. The social
worker may also be able to arrange childcare for you during
and after treatment.
In many areas of the country, there are also specialist nurses
called palliative care nurses. They are experienced in
assessing and treating symptoms of advanced cancer.
Palliative care nurses are sometimes known as Macmillan
nurses. However, many Macmillan professionals are nurses
who have specialist knowledge in a particular type of cancer.
You may meet them when you’re at a clinic or in hospital.
Marie Curie nurses help care for people approaching the end
of their lives in their own homes. Your GP or hospital specialist
nurse can usually arrange a visit by a palliative care or Marie
Curie nurse.
Hospices provide day care services for people with cancer,
and can often give short-term care or respite care, as well as
care for people in the last few weeks of their life.
Hospices specialise in the control of pain and other symptoms,
and in supporting the person with cancer and their family.
People can go into a hospice for a short time to have pain
or any other symptoms controlled before going home again.
Who can help
Many hospices are in pleasant grounds and are designed to
be attractive and comfortable. Many have kitchens, sitting
rooms and accommodation for relatives. Activities are provided
for people who are well enough to take part. They are smaller
and quieter than hospitals and work at a gentler pace.
There’s a video on our website about hospices.
You can view it here, macmillan.org.uk/hospices
There’s also specialist help available to help you cope with the
emotional impact of cancer and its treatment. You can ask your
hospital doctor or GP to refer you to a doctor or counsellor who
specialises in supporting people with cancer and their families.
Our cancer support specialists on 0808 808 00 00 can
tell you more about counselling and can let you know about
services in your area.
Understanding advanced (metastatic) prostate cancer
Financial help and benefits
If you’re struggling to cope with the financial effects of cancer,
help is available.
If you’re an employee and unable to work because of illness,
you may be able to get Statutory Sick Pay. This is paid by your
employer for up to 28 weeks of sickness, and if you qualify for it,
your employer can’t pay you less.
Before your Statutory Sick Pay ends, or if you are not eligible,
check whether you can claim Employment and Support
Allowance. This benefit gives financial help to people who
are unable to work due to illness or disability.
Disability Living Allowance (DLA) is for people under 65 who
have difficulty walking or looking after themselves (or both).
You need to have had these difficulties for at least three months
to qualify, and they should be expected to last for the next six
months. As part of the Welfare Reform Act 2012, DLA will be
replaced by a Personal Independence Payment for people
of working age from April 2013.
Attendance Allowance (AA) is for people aged 65 or over
who have difficulty looking after themselves. You may qualify if
you need help with personal care, such as getting out of bed,
having a bath or dressing yourself. You don’t need to have a
carer to be eligible, but you must have needed care for at least
six months.
If you’re terminally ill, you can apply for DLA or AA under the
‘special rules’. This means your claim will be dealt with quickly
and you’ll receive the benefit you applied for at the highest rate.
Financial help and benefits
Help for carers
If you are a carer, you may be entitled to financial help as well.
This may include Carer’s Allowance, which is the main state
benefit for carers, and Carer’s Credit, which helps carers build
up qualifying years for State Pension.
The benefits system can be complicated, so it’s a good
idea to talk to an experienced benefits adviser. You can
speak to one by calling the Macmillan Support Line
on 0808 808 00 00. We’ve just outlined some benefits
here, but there may be others available to you.
You can find out more about benefits from Citizens Advice,
or by calling the Benefit Enquiry Line on 0800 882 200
(or 0800 220 674 if you live in Northern Ireland). The website
direct.gov.uk (nidirect.gov.uk if you live in Northern Ireland)
also has useful information.
See our booklet Help with the cost of cancer for
more detailed information. Our video at macmillan.
org.uk/gettingfinancialhelp may also be useful.
People who have or have had cancer may find it harder to get
certain types of insurance, including life and travel insurance.
An independent financial adviser (IFA) can help you assess your
financial needs and find the best deal for you. You can find an
IFA by contacting one of the organisations on pages 96–97.
Our leaflet Getting travel insurance and our booklet
Insurance may be helpful.
Understanding advanced (metastatic) prostate cancer
You may need to take time off work during your treatment
and for a while afterwards. It can be hard to judge the best
time to go back to work, and this will depend mainly on the
type of work you do and how much your income is affected.
It’s important to do what’s right for you.
Getting back into your normal routine can be very helpful,
and you may want to go back to work as soon as possible.
It can be helpful to talk to your employer about the situation –
it may be possible for you to work part-time or job share.
On the other hand, it can take a long time to recover fully from
cancer treatment, and it may be many months before you feel
ready to return to work. It’s important not to take on too much,
too soon. Your consultant, GP or specialist nurse can help you
decide when and if you should go back to work.
Employment rights
The Equality Act 2010 protects anyone who has, or has had,
cancer. This means their employer must not discriminate against
them for any reason, including their past cancer. The Disability
Discrimination Act protects people in Northern Ireland.
Our booklets Work and cancer, Working while caring for
someone with cancer and Self-employment and cancer
have more information that may be helpful. There’s
also lots more information at macmillan.org.uk/work
Understanding advanced (metastatic) prostate cancer
How we can help you
Cancer is the toughest fight most of us will
ever face. But you don’t have to go through
it alone. The Macmillan team is with you
every step of the way.
Get in touch
Macmillan Support Line
Our free, confidential phone
Macmillan Cancer Support line is open Monday–Friday,
89 Albert Embankment,
9am–8pm. Our cancer
London SE1 7UQ
support specialists provide
Questions about cancer?
clinical, financial, emotional
Call free on 0808 808 00 00 and practical information and
(Mon–Fri, 9am–8pm)
support to anyone affected by
cancer. Call us on 0808 808
Hard of hearing?
00 00 or email us via our
Use textphone
website, macmillan.org.uk/
0808 808 0121 or Text Relay. talktous
Non-English speaker?
Interpreters are available.
Information centres
Our information and support
Clear, reliable information centres are based in hospitals,
about cancer
libraries and mobile centres,
and offer you the opportunity
We can help you by phone,
to speak with someone
email, via our website and
face-to-face. Find your nearest
publications or in person.
one at macmillan.org.uk/
And our information is free to informationcentres
everyone affected by cancer.
How we can help you
We provide expert, up-to-date
information about different
types of cancer, tests and
treatments, and information
about living with and after
cancer. We can send you free
information in a variety of
formats, including booklets,
leaflets, fact sheets, and
audio CDs. We can also
provide our information in
Braille and large print.
Need out-of-hours support?
You can find a lot of
information on our website,
For medical attention out of
hours, please contact your GP
for their out-of-hours service.
Someone to talk to
When you or someone you
know has cancer, it can be
difficult to talk about how
you’re feeling. You can call
our cancer support specialists
You can find all of our
information, along with several to talk about how you feel and
what’s worrying you.
videos, online at macmillan.
We can also help you find
support in your local area,
Review our information
so you can speak face-to-face
Help us make our resources
even better for people affected with people who understand
what you’re going through.
by cancer. Being one of our
reviewers gives you the chance
to comment on a variety of
information including booklets,
fact sheets, leaflets, videos,
illustrations and website text.
If you’d like to hear more
about becoming a reviewer,
email reviewing@
Understanding advanced (metastatic) prostate cancer
Professional help
Support for each other
Our Macmillan nurses, doctors
and other health and social
care professionals offer expert
treatment and care. They help
individuals and families deal
with cancer from diagnosis
onwards, until they no longer
need this help.
No one knows more about
the impact cancer has on
a person’s life than those
who have been affected by
it themselves. That’s why we
help to bring people with
cancer and carers together in
their communities and online.
You can ask your GP, hospital
consultant, district nurse
or hospital ward sister if
there are any Macmillan
professionals available
in your area, or call us.
Support groups
You can find out about support
groups in your area by calling
us or by visiting macmillan.
Online community
You can also share your
experiences, ask questions,
get and give support to
others in our online
community at macmillan.
How we can help you
Financial and
work-related support
Find out more about the
financial and work-related
support we can offer
Having cancer can bring extra at macmillan.org.uk/
costs such as hospital parking, financialsupport
travel fares and higher heating
Learning about cancer
bills. Some people may have
to stop working.
You may find it useful to learn
If you’ve been affected in this more about cancer and how
to manage the impact it can
way, we can help. Call the
have on your life.
Macmillan Support Line and
one of our cancer support
You can do this online on our
specialists will tell you about
the benefits and other financial Learn Zone – macmillan.org.
uk/learnzone – which offers
help you may be entitled to.
a variety of e-learning courses
and workshops. There’s
We can also give you
information about your rights also a section dedicated to
supporting people with cancer
at work as an employee, and
help you find further support. – ideal for people who want
to learn more about what
their relative or friend is
Macmillan Grants
going through.
Money worries are the last
thing you need when you have
cancer. A Macmillan Grant is
a one-off payment for people
with cancer, to cover a variety
of practical needs including
heating bills, extra clothing,
or a much needed break.
Understanding advanced (metastatic) prostate cancer
Other useful organisations
Other useful organisations
Prostate cancer
support organisations
Bladder and
Bowel Foundation
SATRA Innovation Park,
Rockingham Road,
Kettering NN16 9JH
Helpline 0845 345 0165
Email info@bladderandbowel
Provides information and
advice on a range of
symptoms and conditions
related to the bladder
and bowel, including
incontinence, constipation
and diverticular disease.
St Bartholomew’s Hospital,
London EC1A 7BE
Tel 0203 465 5766
(Mon–Fri, 9am–5.30pm)
[email protected]
Funds research into men’s
cancers, their diagnosis,
prevention and treatment.
Offers free information leaflets
and fact sheets, and runs an
enquiry service supported
by Orchid Male Cancer
Information Nurses.
Prostate Action
6 Crescent Stables,
139 Upper Richmond Road,
London SW15 2TN
Tel 020 8788 7720
[email protected]
Funds research and education
into all three prostate
diseases: benign prostatic
hyperplasia (BPH), prostate
cancer and prostatitis. Has a
lot of information about these
conditions on its website.
Understanding advanced (metastatic) prostate cancer
The Prostate Cancer
Support Federation
Mansion House Chambers,
22 High Street,
Stockport SK1 1EG
Helpline 0845 601 0766
Email info@prostatecancer
An organisation of UK
patient-led prostate cancer
support groups.
Prostate Cancer UK
Cambridge House,
100 Cambridge Grove,
London W6 0LE
Helpline 0800 074 8383
(Mon–Fri, 10am–4pm,
Wed, 7–9pm)
[email protected]
Provides information and
support to men with prostate
cancer, and their families.
A confidential helpline is
available to anyone concerned
or affected by prostate cancer.
Prostate Scotland
Gf2, 21–23 Hill Street,
Edinburgh EH2 3JP
Tel 0131 226 8157
[email protected]
A Scottish charity set up to
provide information, advice
and help on prostate health
and diseases of the prostate.
You can watch videos online
and download free leaflets
and booklets.
Sexual Advice Association
Suite 301, Emblem House,
London Bridge Hospital,
27 Tooley Street,
London SE1 2PR
Tel 020 7486 7262
Email info@
Aims to improve the sexual
health and well-being of
men and women, and to
raise awareness of how
sexual conditions affect
the general population.
Other useful organisations
General cancer
support organisations
Cancer Support
Scotland (Tak Tent)
Flat 5, 30 Shelley Court,
Cancer Black Care
Gartnavel Complex,
79 Acton Lane,
Glasgow G12 0YN
London NW10 8UT
Tel 0141 211 0122
Tel 020 8961 4151
Email info@
(Mon–Fri, 9.30am–4.30pm)
[email protected] scotland.org
Offers information and
support to people with
Offers a variety of information cancer, families, friends,
and support for people
and healthcare professionals.
with cancer from ethnic
Runs a network of support
communities, their families,
groups across Scotland.
carers and friends.
Irish Cancer Society
Cancer Focus
43–45 Northumberland Road,
Northern Ireland
Dublin 4, Ireland
40–44 Eglantine Avenue,
Cancer Helpline
Belfast BT9 6DX
1800 200 700 (Mon–Thurs,
Helpline 0800 783 3339
9am–7pm, Fri, 9am–5pm)
Email [email protected]
[email protected]
Operates Ireland’s only
Provides a variety of services
freephone cancer helpline,
for people with cancer and
which is staffed by nurses
their families, including a free trained in cancer care.
telephone helpline, which is
staffed by specially trained
nurses with experience in
cancer care.
Understanding advanced (metastatic) prostate cancer
Maggie’s Centres
1st Floor, One Waterloo Street,
Glasgow G2 6AY
Tel 0300 123 1801
Email enquiries@
Maggie’s Centres offer free,
comprehensive support for
anyone affected by cancer.
You can access information,
benefits advice, and emotional
or psychological support.
9th Floor, Gleider House,
Ty Glas Road, Llanishen,
Cardiff CF14 5BD
Freephone helpline
0808 808 1010
Tel 029 2076 8850
Email [email protected]
Provides a variety of
services to people with
cancer and their families,
including counselling and
a freephone cancer helpline.
bereavement and
emotional support
British Association
for Counselling and
Psychotherapy (BACP)
BACP House,
15 St John’s Business Park,
Lutterworth LE17 4HB
Tel 01455 883 300
Email [email protected]
www.bacp.co.uk and
Promotes awareness and
availability of counselling,
and signposts people to
appropriate services.
You can search for a
counsellor on its website.
Cruse Bereavement Care
PO Box 800,
Richmond TW9 1RG
0844 477 9400
(Mon–Fri, 9.30am–5pm)
Email [email protected]
Provides bereavement
counselling, information and
support to anyone who has
been bereaved, with a network
of branches across the UK.
Other useful organisations
PO Box 800,
Richmond TW9 1RG
Freephone helpline
0808 808 1677
(Mon–Fri, 9.30am–5pm)
Email [email protected]
RD4U is a website designed
for young people by young
people. It’s part of Cruse
Bereavement Care’s Youth
Involvement Project and
supports young people after
the death of someone close.
Premier House,
Carolina Court, Lakeside,
Doncaster DN4 5RA
Tel 0300 100 1234
Offers advice, relationship
counselling, sex therapy,
workshops, mediation,
consultations and support
face-to-face, by phone and
through the website.
Chris, PO Box 9090,
Stirling FK8 2SA
Tel 08457 90 90 90
Email [email protected]
Provides confidential
non-judgemental emotional
support, 24 hours a day for
people experiencing feelings
of distress or despair, including
those that could lead to suicide.
Financial or legal advice
and information
Benefit Enquiry Line
Warbreck House, Warbreck
Hill Road, Blackpool FY2 0YE
Freephone 0800 882 200
Free textphone
0800 243 355
Email [email protected]
Provides advice about
benefits and can also help
people complete some
disability-related claim packs.
Citizens Advice
Provides free, confidential,
independent advice on a
variety of issues including
financial, legal, housing and
employment. Find contact
details for your local office
in the phone book or at
Understanding advanced (metastatic) prostate cancer
Find advice for the UK online,
in a variety of languages,
at adviceguide.org.uk
Citizens Advice Scotland
The Law Society
113 Chancery Lane,
London WC2A 1PL
Tel 020 7242 1222
Email info.services@
Represents solicitors in
England and Wales
and can provide details
of local solicitors.
Law Society of Scotland
26 Drumsheugh Gardens,
Edinburgh EH3 7YR
Tel 0131 226 7411
[email protected]
Law Society of
Northern Ireland
96 Victoria Street,
Belfast BT1 3GN
Tel 028 9023 1614
Email [email protected]
National Debtline
(England, Wales
and Scotland)
Tricorn House,
51–53 Hagley Road,
Birmingham B16 8TP
Freephone 0808 808 4000
(Mon–Fri, 9am–9pm,
Sat, 9.30am–1pm)
A national telephone helpline
for people with debt problems.
The service is free, confidential
and independent, and the call
handlers also distribute free
self-help materials.
Personal Finance Society –
‘Find an Adviser’ service
42–48 High Road, South
Woodford, London E18 2JP
Tel 020 8530 0852
The UK’s largest professional
body for independent financial
advisers. Use the ‘Find an
Adviser’ website to find
qualified financial advisers
in your area.
Other useful organisations
Hythe House,
200 Shepherd’s Bush Road,
London W6 7NL
Helpline 0808 802 2000
(Mon–Fri, 8am–8pm)
Email [email protected]
Provides an online service to
help people in financial need
in the UK. Its website has
information about the benefits
and grants available from
both statutory and voluntary
organisations. You can often
apply for support directly from
the website.
Unbiased Ltd
117 Farringdon Road,
London EC1R 3BX
[email protected]
Helps people search for details
of local member independent
financial advisers online at
Support for carers
Carers Trust
32–36 Loman Street,
London SE1 0EH
Tel 0844 800 4361
Email [email protected]
www.carers.org and
The largest provider of
comprehensive carers support
services in the UK. Through
its network of independently
managed Carers’ Centres,
85 young carers services and
interactive websites, it currently
provides information, advice
and support services to over
400,000 carers, including
approximately 25,000
young carers.
Carers UK
20 Great Dover Street,
London SE1 4LX
Tel 020 7378 4999
Advice line 0808 808 7777
(Wed and Thurs,
10am–12pm and 2–4pm)
Email [email protected]
Offers information and
support to carers. Can put
people in contact with local
Understanding advanced (metastatic) prostate cancer
support groups. Has national
offices for Scotland, Wales
and Northern Ireland:
Equipment and advice
on living with disability
Assist UK
Carers Scotland
Redbank House,
The Cottage, 21 Pearce
4 St Chad’s Street,
Street, Glasgow G51 3UT
Manchester M8 8QA
Tel 0141 445 3070
Tel 0161 832 9757
[email protected]
[email protected]
An independent voluntary
organisation with a network
Carers Wales
of disabled living centres
River House, Ynsbridge
throughout the UK. Centres
Court, Gwaelod-y-Garth,
offer advice and a range
Cardiff CF15 9SS
of products and equipment
Tel 029 2081 1370
designed to make life easier
Email [email protected] for people who have difficulty
www.carersuk.org/wales with daily activities.
Carers Northern Ireland
58 Howard Street,
Belfast BT1 6PJ
Tel 028 9043 9843
Email [email protected]
The Blue Badge Scheme
(Department for Transport)
Allows drivers of passengers
with severe mobility problems
to park close to where they
need to go. The scheme
is administered by local
authorities that deal with
applications and issue badges.
Other useful organisations
Applications can be made
through the website and are
sent to your local authority
for a decision.
British Red Cross
44 Moorfields,
London EC2Y 9AL
Tel 0844 871 11 11
[email protected]
Provides short-term support
for vulnerable people in the
UK, including therapeutic
care, a medical equipment
loan service and a transport
service. Has offices throughout
the UK.
Support for older people
Age UK
Tavis House,
1–6 Tavistock Square,
London WC1H 9NA
Advice Line 0800 169 6565
(Daily, 8am–7pm)
Email [email protected]
Age UK provides information
and advice on anything
from health to housing on
its free national information
line and publishes impartial
and informative fact sheets
and advice guides.
Age Cymru
Ty John Pathy, Units 13/14
Neptune Court, Vanguard
Way, Cardiff CF24 5PJ
Tel 0800 169 6565
[email protected]
Age Northern Ireland
3 Lower Crescent,
Belfast BT7 1NR
Tel 0808 808 7575
Email info@ageconcernhelp
Age Scotland
Causewayside House,
160 Causewayside,
Edinburgh EH9 1PR
Tel 0845 125 9732
Email enquiries
Understanding advanced (metastatic) prostate cancer
Advanced cancer and
end-of-life care
Marie Curie Cancer Care
89 Albert Embankment,
London SE1 7TP
Freephone 0800 716 146
Tel 020 7599 7777 (England)
028 9088 2032 (NI)
0131 561 3900 (Scotland)
01495 740 818 (Wales)
Email [email protected]
Marie Curie nurses provide
free end-of-life care to people
with cancer in their own
homes, 24 hours a day,
365 days a year. There are
also Marie Curie hospices
across the UK.
Help the Hospices
Hospice House,
34–44 Britannia Street,
London WC1X 9JG
Tel 020 7520 8200
[email protected]
Provides information relevant
to living with advanced illness.
Compiles a directory of
hospice services, as well as
practical booklets. These
are all available for free
via its website.
Practical help and
information on funerals
Natural Death Centre
In The Hill House, Watley
Lane, Twyford,
Winchester SO21 1QX
Tel 01962 712 690
[email protected]
Aims to support those dying
at home and their carers,
and to help people arrange
inexpensive, family-organised,
and environmentally-friendly
Further resources
Related Macmillan
You may want to order some
of the resources mentioned in
this booklet. These include:
• Are you worried about
prostate cancer?
• Cancer and
complementary therapies
• Cancer genetics –
how cancer sometimes
runs in families
• Hello, and how are you?
• Help with the cost of cancer
• How are you feeling?
• Insurance
• Lost for words: how to talk
to someone with cancer
• Making treatment decisions
• Self-employment
and cancer
• Sexuality and cancer
• Talking about your cancer
• Talking to children when
an adult has cancer
• The building-up diet
• Cancer treatment and
fertility – information
for men
• Understanding cancer
research trials
(clinical trials)
• Cancer, you and
your partner
• Understanding
• Controlling cancer pain
• Understanding radiotherapy
• Controlling the symptoms
of cancer
• Understanding secondary
cancer in the bone
• Coping with fatigue
• Work and cancer
• Getting travel insurance
• Working while caring for
someone with cancer
Understanding advanced (metastatic) prostate cancer
Other booklets in this series: Macmillan videos
• Having tests for
prostate cancer
• Understanding the PSA test
• Understanding early
(localised) prostate cancer
• Understanding locally
advanced prostate cancer
To order, visit be.macmillan.
org.uk or call 0808 808 00
00. All of our information
is also available online
at macmillan.org.uk/
To order the fact sheets
mentioned in this booklet,
call 0808 808 00 00.
Audio resources
Our high-quality audio
materials, based on our
variety of booklets, include
information about cancer
types, different treatments
and about living with cancer.
To order your free CD,
visit be.macmillan.org.uk
or call 0808 808 00 00.
There are many videos
on the Macmillan website
featuring real-life stories and
information from health and
social care professionals.
There’s a video about
living with prostate cancer
at macmillan.org.uk/
Useful websites
A lot of information about
cancer is available on the
internet. Some websites
are excellent; others have
misleading or out-of-date
information. The sites listed
here are considered by nurses
and doctors to contain
accurate information and
are regularly updated.
Macmillan Cancer Support
Find out more about living
with the practical, emotional
and financial effects of
cancer. Our website contains
expert, accurate, up-to-date
information about cancer
and its treatments, including:
Further resources
• all the information from
our 100+ booklets and
350+ fact sheets
• videos featuring
real-life stories from
people affected by cancer
and information from
medical professionals
• how Macmillan can help,
the services we offer and
where to get support
• how to contact our cancer
support specialists,
including an email form
to send your questions
• local support groups
search, links to other
cancer organisations
and a directory of
information materials
• a huge online community
of people affected by
cancer sharing their
experiences, advice
and support.
(National Cancer
Institute – National
Institute of Health – USA)
Gives comprehensive
information on cancer
and treatments.
(American Cancer Society)
Nationwide community-based
health organisation dedicated
to eliminating cancer.
(Cancer Research UK)
Contains patient information
on all types of cancer and
has a clinical trials database.
(site for young people)
Both websites contain
information about some
cancers and have video and
audio clips of people talking
about their experiences.
Understanding advanced (metastatic) prostate cancer
(Macmillan Cancer Voices)
Enables people who have or
have had cancer, and those
close to them such as family
and carers, to speak out about
their experience of cancer.
(Health and Social Care
in Northern Ireland)
The official gateway to
health and social care
services in Northern Ireland.
(Patient UK)
Has evidence-based
(NHS Choices)
information leaflets on
This is the country’s biggest
a variety of medical and
health website and gives all the health topics.
information you need to make
decisions about your health.
Developed especially
(NHS Direct Online)
for teenagers who have
NHS health information
a parent with cancer.
site for England – covers
all aspects of health,
illness and treatments.
(NHS 24 in Scotland)
nhs.uk (NHS Direct Wales)
Your notes and questions
Your notes and questions
You could use these pages to write down any questions you
want to ask your doctor or nurse, and then to write down the
answers you receive.
Understanding advanced (metastatic) prostate cancer
TNM staging
Two of the most commonly used staging systems
are a numbered staging system (see page 26)
and the TNM staging system. The TNM system
is more detailed and is described below.
T stands for Tumour
Doctors put a number next to the ‘T’ to describe the size and
spread of the cancer.
T1 – The tumour is within the prostate gland. It is too small to
be detected during a rectal examination, but may be picked
up through tests such as a PSA test, a biopsy or a transurethral
resection of the prostate gland (TURP) – an operation to make
passing urine easier by removing part of the prostate gland.
There are generally no symptoms with T1 tumours.
T2 – The tumour is still within the prostate gland but is large
enough to be felt during a digital rectal examination, or it
shows up on an ultrasound scan. Often there are no symptoms.
The T2 stage is divided into three further parts:
T2a – The tumour is only in one half of one of the two lobes
that make up the prostate gland.
T2b – The tumour is in more than one half of one of the
lobes in the prostate gland.
T2c – The tumour is in both lobes of the prostate gland.
Understanding advanced (metastatic) prostate
TNM staging
T1 and T2 tumours are known as early (localised)
prostate cancer.
T3 – The cancer has begun to spread through the capsule that
surrounds the prostate gland. The T3 stage is divided into two
further parts:
T3a – The tumour has broken through the capsule but is not affecting the surrounding structures.
T3b – The tumour has spread into the glands that produce semen (seminal vesicles). These are very close to the prostate gland and sit just underneath the bladder.
T3 tumour
T2 tumour
Prostate gland
T1 tumour
This diagram compares the size of
T1, T2 and T3 tumours in the prostate gland
Understanding advanced (metastatic) prostate cancer
T4 – The tumour has started to spread into nearby parts of the
body such as the bladder or rectum.
T3 and T4 tumours are known as locally advanced
prostate cancer because the cancer has started to
spread outside the prostate gland and may be invading
surrounding structures.
If the cancer has spread to other parts of the body, it’s known
as metastatic, secondary, or advanced prostate cancer.
T4 tumour
This diagram shows a T4 tumour that has started to
spread from the prostate gland into surrounding structures
TNM staging
At the hospital you might also see the letters ‘N’ and ‘M’.
N stands for Nodes
This describes whether there are any lymph nodes near the
prostate gland that have cancer in them. The ‘N’ may have an
‘X’ or a number written next to it, which gives extra information
about the nodes that were examined:
NX – The lymph nodes were not examined.
N0 – The lymph nodes were examined but no cancer was found.
N1 – Cancer was found in the lymph nodes.
M stands for Metastasis
Metastasis means that the cancer has spread to other parts
of the body, such as the bones.
The ‘M’ may have a number written next to it, which gives extra
information about where the cancer has spread to:
M0 – The cancer has not spread to other parts of the body.
M1 – The cancer has spread to another part of the body,
such as the bones, lung or liver.
Our cancer support specialists on 0808 808 00 00
can tell you more about TNM staging. It’s also
important to talk to your doctor for detailed
information about your situation.
Understanding advanced (metastatic) prostate cancer
We make every effort to ensure that the information we provide is accurate and up
to date but it should not be relied upon as a substitute for specialist professional
advice tailored to your situation. So far as is permitted by law, Macmillan does
not accept liability in relation to the use of any information contained in this
publication, or third-party information or websites included or referred to in it.
Some photographs are of models.
This booklet has been written, revised and edited by Macmillan Cancer Support’s
Cancer Information Development team. It has been approved by our medical editor,
Dr Terry Priestman, Consultant Clinical Oncologist.
With thanks to: Jason Alcorn, Clinical Nurse Specialist; Wendy Ansell,
Clinical Nurse Specialist; Mr Gnanapragasam, Consultant Urologist;
Dr Stephen Harland, Medical Oncologist; Dr Stephen Mangar, Consultant Clinical
Oncologist; Dr Lisa Pickering, Consultant Medical Oncologist; and the people
affected by cancer who reviewed this edition.
National Institute for Health and Clinical Excellence (NICE). Prostate cancer:
Diagnosis and treatment. www.nice.org.uk (accessed July 2011).
NCCN Clinical Practice Guidelines in Oncology: Prostate Cancer. 2011.
Hanks, et al. Oxford Textbook of Palliative Medicine. 4th Edition. 2010.
Oxford University Press.
Kirby, et al. Prostate Cancer – Principles and Practice. 2006. Lippincott, Williams
and Wilkins.
Cancer Research UK. www.cancerresearchuk.org (accessed July 2011).
UpToDate. www.uptodate.com (accessed July 2011).
Can you do something to help?
We hope this booklet has been useful to you. It’s just one of our
many publications that are available free to anyone affected by
cancer. They’re produced by our cancer information specialists
who, along with our nurses, benefits advisers, campaigners and
volunteers, are part of the Macmillan team. When people are
facing the toughest fight of their lives, we’re there to support
them every step of the way.
We want to make sure no one has to go through cancer alone,
so we need more people to help us. When the time is right for you,
here are some ways in which you can become a part of our team.
5 ways
you can someone
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Share your cancer experience
Support people living with cancer by telling your story,
online, in the media or face to face.
Campaign for change
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Cancer is the toughest fight most of us
will ever face. If you or a loved one has
been diagnosed, you need a team of
people in your corner, supporting you
every step of the way. That’s who we are.
We are the nurses and therapists helping you through
treatment. The experts on the end of the phone.
The advisers telling you which benefits you’re entitled to.
The volunteers giving you a hand with the everyday
things. The campaigners improving cancer care.
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The fundraisers who make it all possible.
You don’t have to face cancer alone.
We can give you the strength to get through it.
We are Macmillan Cancer Support.
Questions about living with cancer?
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Alternatively, visit macmillan.org.uk
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© Macmillan Cancer Support, 2012. 3rd edition. MAC11686.
Next planned review 2014. Macmillan Cancer Support, registered
charity in England and Wales (261017), Scotland (SC039907) and
the Isle of Man (604).
Printed using sustainable material. Please recycle.