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A practical guide to

understanding cancer

Understanding
womb
(endometrial)
CAnceR
Contents

Contents
About this booklet 4
What is cancer? 5
The lymphatic system 7
The womb 8
About womb cancer  9
Risk factors and causes 11
Symptoms 16
How it is diagnosed 17
Further tests 21
Staging 24
Grading 27
Treatment overview 28
Surgery 35
Radiotherapy 44
Chemotherapy 56
Hormonal treatment 62
Research – clinical trials 63
Follow-up 67
Sex and fertility 68
After treatment  73
Who can help? 78

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Understanding womb (endometrial) cancer

Your feelings 79
What you can do 83
Talking to children 84
If you are a relative or friend 86
Work 87
Financial help and benefits  88
How we can help you 90
Other useful organisations 94
Further resources  99

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Understanding womb (endometrial) cancer

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Understanding womb (endometrial) cancer

About this booklet


This booklet is about cancer of the womb (uterus).
Most womb cancers start in the lining of the
womb (the endometrium) so womb cancer is
sometimes called endometrial cancer. 

We can’t advise you about the best treatment for you.


This information can only come from your doctor, who knows
your 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 94–101 for some useful addresses and websites.

Throughout this booklet we’ve included some comments


from members of our online community (macmillan.org.
uk/community) who have been affected by womb cancer.
We hope you find these helpful.

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.

4
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 isn’t a single disease with a single cause and a single
type of treatment. There are more than 200 different kinds of
cancer, each with its own name and treatment.

Although cells in different parts of the body may look different


and work in different ways, 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 can be either benign
(non-cancerous) or malignant (cancerous). Doctors can tell
whether 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

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Understanding womb (endometrial) 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.

We have a video on our website that gives a general


overview of cancer and its treatment. You can watch
this at macmillan.org.uk/aboutcancer

6
The lymphatic system

The lymphatic system


The lymphatic system is part of the immune system – the body’s
natural defence against infection and disease. The lymphatic
system has two main roles: it helps to protect the body from
infection and it drains fluid from the tissues. 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 pelvic lymph nodes are the most likely to be affected by
cancer of the womb.

Lymphatic
tubes

Pelvic lymph
nodes

Pelvic lymph nodes

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Understanding womb (endometrial) cancer

The womb
The womb (uterus) is a muscular, pear-shaped organ where
a baby is carried during pregnancy. It sits low in the pelvis
(the area between the hips) and is supported by the pelvic floor
muscles. The lower part of the womb is called the cervix.
The cervix is joined to the top of the vagina and is sometimes
called the neck of the womb. Cancers that start in the cervix
behave differently and are treated differently from womb cancer.

We have a separate booklet called Understanding


cervical cancer.

Fallopian
tube
Ovary
Womb
Cervical
canal
Cervix
Bladder

Vagina

The position of the womb (uterus)


and the female reproductive organs

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About womb cancer

About womb cancer


About 7,700 women a year in the UK are diagnosed with
cancer of the womb. More than 90% (9 in 10) of these are in
women over 50 – womb cancer is rare in women under
35. Most womb cancers start in the lining of the womb
(the endometrium) and these cancers are usually diagnosed
early and treated successfully. There are also some other
types of womb cancer (see below), which are less common.
Like other cancers, womb cancer isn’t infectious and you can’t
pass it on to anyone else. 

Types of womb cancer

About 80% (8 in 10) of womb cancers develop from


glandular tissue in the lining of the womb (endometrium).
These cancers are called endometrial carcinomas or
sometimes endometrioid adenocarcinomas. They’re usually
diagnosed early and are often cured. 

Less common types of womb cancer are:


•• papillary serous carcinoma
•• carcinosarcoma
•• a rare type called clear cell carcinoma.

Unlike endometrial carcinomas, these types aren’t thought to


be linked with oestrogen (see page 11) and they tend to grow
more quickly. There’s another type of cancer, called a uterine
sarcoma, that starts in the muscle of the womb. This cancer
and its treatment are explained in our booklet Understanding
soft tissue sarcomas.

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Understanding womb (endometrial) cancer

10
Risk factors and causes

Risk factors and causes


The exact cause of cancer of the womb isn’t known, but there
are certain things that can increase a woman’s risk. These are
called risk factors. Having a risk factor doesn’t mean you will
get cancer, just as not having a risk factor doesn’t mean that
you won’t get it. The risk factors for womb cancer are mainly
linked with how much of the hormone oestrogen the womb
lining is exposed to.

Possible risk factors are:

Age

Like most cancers, the risk of womb cancer increases with age.

Hormonal factors­

A woman’s exposure to oestrogen and its balance with another


hormone, called progesterone, affect the risk of womb cancer.

Before the menopause, the ovaries produce oestrogen and


progesterone, which help to control the monthly cycle (periods).
This includes releasing an egg from the ovaries and making
the womb lining grow thicker to prepare for pregnancy.
When this doesn’t happen, the lining comes away as a period.
After the menopause the ovaries no longer produce hormones,
but women still produce some oestrogen in their body fat.

When there’s too much oestrogen without progesterone to


balance it, the risk of womb cancer is increased.

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Understanding womb (endometrial) cancer

Factors that influence this are:


Not having children
Women who haven’t had children, or who are unable to have
children, have a greater risk of womb cancer. Oestrogen in the
body is low during pregnancy, and the level of progesterone
is high.

Menstrual history (periods)


Longer exposure to oestrogen can affect your risk of womb
cancer. This can be affected by: 

•• starting your periods early (before 12)


•• having a late menopause (after 55)
•• having longer periods
•• having irregular periods
•• not having periods. 

Hormone replacement therapy (HRT)


Taking oestrogen-only HRT (which contains no progesterone)
or a type of HRT called tibilone can increase the risk of womb
cancer. Oestrogen-only HRT is usually only given to women who
have had an operation to remove their womb (a hysterectomy).

Weight and physical activity

Being overweight is an important risk factor for womb


cancer. After the menopause, body fat is the main source
of oestrogen. Women who are overweight may have a high
level of oestrogen. One in three womb cancers may be caused
by being overweight. There’s also some evidence that being
less physically active can increase womb cancer risk. 

12
Risk factors and causes

Genetic factors (family history) 

A very small number of womb cancers may be caused by


changes to a particular gene, which can increase the risk
of developing it. Genes store the biological information we
inherit from our parents. If there are several close relatives on
the same side of the family with bowel, breast or womb cancer,
there’s a possibility that there may be a genetic (inherited) link.
Close relatives are parents, children, sisters and brothers. 

If you’re worried about a family history of cancer, speak to your


GP, who can reassure you or refer you to a family cancer clinic.  

There are some known genetic (inherited) conditions that


can increase the risk of womb cancer. Women with hereditary
non-polyposis colorectal cancer (HNPCC) have a faulty
gene that increases the risk of bowel cancer and also of womb
cancer. Women who have this gene have a 30–60% risk of
developing womb cancer over their lifetime. They are screened
for bowel cancer and may also have tests to check for early
signs of womb cancer. 

We can send you a fact sheet about HNPCC.

Women with a rare genetic condition called Cowden


syndrome have an increased risk of benign (non-cancerous)
tumours and also of cancers, including womb cancer. But the
increase in risk is small.

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Understanding womb (endometrial) cancer

Tamoxifen

Tamoxifen is a hormonal drug used to treat breast cancer.


It can slightly increase the risk of womb cancer, usually when
it’s taken over a long period of time. But there are very clear
benefits of taking tamoxifen that far outweigh this risk.
Women taking tamoxifen always have tests done to check
any unusual vaginal bleeding. 

Other medical conditions

Some other medical conditions may cause an increase in womb


cancer risk. These include:

Thickening of the womb lining


(Endometrial hyperplasia) is a condition where the womb
lining becomes thicker. Symptoms include heavy periods and
bleeding between periods or after the menopause. When it’s
diagnosed, women have treatment and/or regular tests.

Diabetes
Diabetes, which is linked with being overweight, increases a
woman’s risk of womb cancer. There may also be a separate
link between womb cancer and insulin, a hormone that
regulates blood sugar.

Polycystic ovary syndrome (PCOS)


Women with PCOS, a condition in which cysts grow on the
ovaries, may have fertility problems, infrequent or no periods,
or may be very overweight or diabetic. These are all linked with
womb cancer risk.

14
Risk factors and causes

Uncommon ovarian cancers


Some types of ovarian cancers called granulosa and theca
cell tumours can produce oestrogen, which increases the risk
of womb cancer. 

Many of the risk factors we’ve mentioned are not


under our control, so we can’t do anything about
them. But keeping to a healthy weight and being more
physically active may help reduce a woman’s risk of
womb cancer.

Women who take the combined contraceptive pill over a long


period of time have a lower risk of womb cancer.

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Understanding womb (endometrial) cancer

Symptoms

The most common symptom of womb cancer is unusual


vaginal bleeding, for example:
•• bleeding after the menopause
•• bleeding in between periods
•• heavier periods than usual (if you haven’t been through
the menopause)
•• a watery or bloody vaginal discharge.

Less common symptoms are pain or discomfort in the pelvic


area, or pain during sex.

If you have any unusual vaginal bleeding, always see your


GP about it. There are other conditions that affect the womb,
such as fibroids (benign growths), which can also cause
unusual vaginal bleeding.

Bleeding is one of the first signs of womb cancer, and the


earlier womb cancer is picked up, the more likely it is to be
cured. Even if you’ve had a normal cervical screening test
(smear test) recently, it’s important to have any bleeding
checked. A smear test only takes cells from the neck of the
womb (the cervix) so it only occasionally picks up womb cancer.

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How it is diagnosed

How it is diagnosed
Usually you begin by seeing your GP (family doctor), who will
ask you about your symptoms. 

Your GP may do an internal vaginal examination and press


down on your tummy at the same time to feel for anything
unusual in your pelvis. This is sometimes called an internal
pelvic examination.

You might have a blood test and you may be asked to give
a sample of your urine for testing.

Your GP might arrange other tests or refer you directly to a


doctor, called a gynaecologist, who specialises in treating
conditions of a woman’s reproductive system (see page 8). 
You will usually be referred urgently (within two weeks) if
you have:
•• vaginal bleeding after the menopause
•• a lump in the pelvis that your GP can feel
•• ongoing vaginal bleeding in between your periods after
a normal pelvic examination.

At the hospital

At the hospital, your specialist will ask about your general


health, any other medical problems you have, and whether you
have any close relatives with womb or bowel cancer. You may
also be introduced to a gynaecology nurse specialist, who will
be able to give you information and support. The gynaecologist
will examine you and carry out an internal pelvic examination.

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Understanding womb (endometrial) cancer

You may also have a smear test taken if you haven’t had one
recently. After this, they’ll explain the tests you need to have.
It’s likely you’ll have some blood taken for testing, and some
of the following tests will be arranged:

Blood tests
Samples of your blood will be taken to check your general
health, the number of blood cells in your blood (blood count),
and to see how well your kidneys are working.

Trans-vaginal ultrasound
This uses sound waves to make up a picture of the inside
of your womb. It tells your specialist how thick the lining of
your womb is. A small probe with a rounded end is placed
gently in your vagina. The test can be a little uncomfortable
but shouldn’t be painful. It only takes a few minutes. If it isn’t
possible to do the scan through the vagina, it can be done
by passing a small device over the tummy (abdomen).

Biopsy
This involves taking a sample of cells or tissue from the womb
lining. The sample is examined under a microscope by an expert
doctor (a pathologist) and checked for cancer cells. If there are
cancer cells present, the biopsy results will also usually identify
the type of womb cancer it is (see page 9). Biopsies can be
carried out in a number of ways:

Aspiration biopsy You can have this done at your clinic


appointment and you won’t usually need any anaesthetic.
But some women may need to have it done another time
using a local or general anaesthetic.

Your doctor or nurse will gently put an instrument called a


speculum into your vagina to keep it open. They carefully pass

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How it is diagnosed

a fine tube (called a pipelle) through the cervix into your


womb. Then, using gentle suction, they draw some cells from
the womb lining into the tube. This might cause you to feel some
period-like cramps while it’s being done, but this usually wears
off in a few minutes. After the test, you may have light bleeding
and some mild period-like discomfort for a couple of days.

Hysteroscopy This test uses a narrow tube that allows your


doctor to examine the lining of your womb. You can have it
done as an outpatient.

Your doctor will put a speculum into your vagina, and may
inject a little anaesthetic into the cervix to make the test less
uncomfortable. You may be advised to take some painkillers
an hour before the test. After a few minutes, the doctor will
carefully pass a very thin flexible tube (hysteroscope) with
a light on the end through the vagina and cervix into your
womb. Pictures of the inside of your womb will show up on a
screen. Some clear fluid or air is put into the hysteroscope to
allow the doctor to get a better picture. Your doctor can then
take samples of tissue (biopsies) from the womb lining using
the hysteroscope.

After the test, you’ll have some vaginal bleeding for a couple
of days and some period-like cramps, which you can take
mild painkillers for.

Hysteroscopy dilatation and curettage (D&C) This small


operation is done under a general anaesthetic. It’s usually
done along with a hysteroscopy (see above) so the surgeon
can examine the womb. The surgeon stretches (dilates) the cervix
during the operation to open it, and uses a small instrument
called a curette to carefully scrape some tissue from the womb
lining. Afterwards you’ll probably have period-like pains and
some vaginal bleeding for a couple of days.
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Understanding womb (endometrial) cancer

20
Further tests

Further tests
If womb cancer is confirmed, you’ll have further tests to find
out more about the position of the cancer and whether it has
spread from where it started (see pages 24–25). For example,
a CT or MRI scan can check if the lymph nodes are swollen
or look abnormal.

CT (computerised tomography) scan

A CT scan (see photo on opposite page) 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’ll be asked not to eat or drink for at least four
hours before the 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.

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Understanding womb (endometrial) cancer

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
claustrophobic. It’s also noisy, but you’ll be given earplugs
or headphones. You can hear, and speak to, the person
operating the scanner.

22
Further tests

PET/CT scan

This is a combination of a CT scan (see page 21) and a


positron emission tomography (PET) scan.

A PET scan uses low-dose radiation to measure the activity


of cells in different parts of the body. PET/CT scans give more
detailed information about the part of the body being scanned.
You may have to travel to a specialist centre to have one.
You can’t eat for six hours before the scan, although you may
be able to drink.

A mildly radioactive substance is injected into a vein, usually


in your arm. The radiation dose used is very small. The scan
is done after at least an hour’s wait. It usually takes 30–90
minutes. You should be able to go home after the scan.

Chest x-ray

You may have an x-ray of your chest, to check your lungs.

Waiting for test results

Waiting for test results can be a difficult time. It may take from
a few days to a couple of weeks for the results of your tests
to be ready. You may find it helpful to talk with your partner,
family or a close friend. Your gynaecology specialist nurse
or one of the organisations listed on pages 94–98, can also
provide support. You can also talk things over with one of our
cancer support specialists on 0808 808 00 00.

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Understanding womb (endometrial) cancer

Staging
The stage of womb cancer describes how far the cancer has
grown and if it has spread from where it started. Knowing the
stage of the cancer is important because it affects the decisions
you and your doctor will make about treatment. Your doctor
won’t know the exact stage of the cancer until after your
operation to remove the cancer (see page 35) and when the
results of all your tests are ready.

Womb cancer is divided into four main number stages, and


some of these are sub-divided.

Stage 1
The cancer is contained in the womb. There are two stages:
•• Stage 1A – The cancer is only in the lining of the womb
or has grown no more than halfway into the muscle.
•• Stage 1B – The cancer has grown more than halfway
into the muscle wall.

Stage 2
The cancer has spread to the cervix.

Stage 3
The cancer has spread but is confined to the pelvis. There are
three stages:
•• Stage 3A – The cancer is affecting the outer covering of
the womb and/or involves the ovaries and fallopian tubes.
•• Stage 3B – The cancer has spread into the vagina and/or
into the tissue between the womb and the side wall of the
pelvis (parametrium).

24
Staging

•• Stage 3C – The cancer has spread to the pelvic lymph


nodes and/or to the lymph nodes at the back of the
tummy (abdomen).  
Stage 4
The cancer has spread to other organs in the body. There are
two stages:
•• Stage 4A – The cancer has spread to the bowel and/or
the bladder.
•• Stage 4B – The cancer has spread to the lungs, bones or
the brain (called secondary cancers or metastases).

Some other terms may be used to describe the cancer:


•• Early-stage womb cancer – This usually refers to stages
1 and 2.
•• Locally advanced womb cancer – This usually refers to
stage 3 and stage 4A womb cancers.
•• Advanced or secondary womb cancer – This is usually
stage 4B womb cancer.

If a cancer comes back after it was first treated, it’s called


recurrent cancer.  

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Understanding womb (endometrial) cancer

26
Grading

Grading
Grading is about how the cancer cells look under the
microscope compared with normal cells. The grade helps your
doctor decide if you’ll need further treatment after surgery. 
•• Grade 1 (low-grade) – The cancer cells tend to grow slowly,
look quite similar to normal cells (are ‘well differentiated’)
and are less likely to spread than higher grades.
•• Grade 2 (moderate-grade) – The cells look more
abnormal and are growing slightly quicker.
•• Grade 3 (high-grade) – The cancer cells tend to be growing
more quickly, look very abnormal (are ‘poorly differentiated’)
and are more likely to spread than low-grade cancers.

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Understanding womb (endometrial) cancer

Treatment overview
The main treatment for womb cancer is an operation to remove
the womb (hysterectomy), and the fallopian tubes and ovaries.
For some women, this may be the only treatment they need to
cure the cancer. Women who are advised by their doctor not
to have a general anaesthetic for health reasons can be treated
with radiotherapy instead of surgery. 

If the cancer has spread but is still in the pelvic area, you will
usually still have an operation to remove as much of it as
possible. This can make any treatment you have after surgery
more effective. 

Other treatments

After surgery, you may be advised to have other treatments to


reduce the risk of the cancer coming back – this is known as
adjuvant treatment. The stage and grade of the cancer helps
your specialist decide if you need further treatment. The most
common treatment is radiotherapy (see pages 44–54) to the
pelvic area. Some women are given chemotherapy (see pages
56–61) as well as radiotherapy to reduce the risk of the cancer
coming back. Sometimes chemotherapy is given on its own
instead of radiotherapy. You may also be asked if you would
like to take part in a clinical trial (see pages 63–65).

Advanced cancer

Chemotherapy, or sometimes hormonal therapy, is used


to treat cancer that has spread to other parts of the body,
such as the liver or lungs. This is known as palliative
treatment. Chemotherapy can help to shrink and control
the cancer and relieve symptoms.
28
Treatment overview

Hormonal therapy may be given when chemotherapy is no


longer working. Occasionally, an operation may be done to
remove a cancer that has spread if it is small and confined
to one part of the body.

How treatment is planned


In most hospitals, a team of specialists will meet to discuss and
to decide on the best treatment for you. This multidisciplinary
team (MDT) will include a:
•• surgeon who specialises in gynaecological cancers
(gynaecological oncologist)  
•• medical oncologist (chemotherapy specialist)
•• clinical oncologist (radiotherapy and chemotherapy
specialist) who specialises in gynaecological cancers
•• gynae-oncology nurse specialist
•• radiographer who delivers the radiotherapy
•• pathologist to advise on the type and extent of the cancer.

It may also include other healthcare professionals,


such as a dietitian, physiotherapist, occupational therapist,
psychologist or counsellor.

After the MDT meet, your specialist will discuss treatment


options with you. Remember to ask questions about anything
you don’t understand or feel worried about. You can discuss
the benefits and disadvantages of different treatments with
your specialist doctor or nurse. You can also talk to our cancer
support specialists on 0808 808 00 00.

Our booklet Making treatment decisions may be helpful.

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Understanding womb (endometrial) cancer

The benefits and disadvantages of treatment

Many people are frightened by the idea of having cancer


treatments, particularly because of the side effects that can
occur. However, these can usually be controlled with medicines.
Treatment can be given for different reasons and the potential
benefits will vary depending on your individual situation.

For most women with womb cancer, surgery is done with the
aim of curing the cancer. You may also be given additional
treatments to reduce the risk of it coming back.

If the cancer is advanced and has spread to other parts of


the body, treatment may only be able to control it, improving
symptoms and quality of life. However, for some people in this
situation, the treatment will have no effect on the cancer and
they will get the side effects without any of the benefits.

If you’ve been offered treatment that aims to cure the


cancer, deciding whether to accept it may not be difficult.
However, if a cure is not possible and the purpose of treatment
is to control the cancer for a period of time, it may be more
difficult to decide whether to go ahead. 

Making decisions about treatment in these circumstances is


always difficult, and you may need to discuss in detail with your
doctor whether you wish to have treatment. If you choose not
to have it, you can still be given supportive (palliative) care,
with medicines to control any symptoms.

30
Treatment overview

Second opinion

Your multidisciplinary team (MDT) uses national treatment


guidelines to decide on 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 feel 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. You could also prepare a
list of questions, so that you can make sure your concerns
are covered during the discussion.

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.

Before you’re asked to make any decisions, you should be


given full information about:

•• the type and extent of the treatment


•• its benefits and disadvantages
•• any significant risks or side effects
•• any other treatments that may be available.

If there’s anything you don’t understand, let the staff know


straight away so they can explain again. Some treatments are
complex, so it’s not unusual to need explanations repeated.
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Understanding womb (endometrial) cancer

It’s a good idea to have a relative or friend with you when the
treatment is explained, to help you remember the discussion.
You may also find it useful to write a list of questions before
your appointment.

People sometimes feel that hospital staff are too busy to


answer their questions, but it’s important for you to know
how the treatment is likely to affect you. The staff should
be willing to make time for your questions.

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.

You’re 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.

‘Making the decision about treatment was so


hard…My advice is talk about it as much as
you can, and ask all your questions however
silly you think they are.’
Trish

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Understanding womb (endometrial) cancer

34
Surgery

Surgery
Surgery is the main treatment for womb cancer. Your operation
will be carried out by a surgeon who is experienced in treating
gynaecological cancers. After the operation, your surgeon can
tell you more about the stage (see page 24) of the cancer. 

Hysterectomy (removing the womb)

Usually you will have a total hysterectomy, which involves


removing the womb and the cervix. The fallopian tubes
and both ovaries are also removed (called a bilateral
salpingo-oopherectomy). There are different ways in
which a hysterectomy can be carried out. Your surgeon
will advise you on which type is suitable for you.

Abdominal hysterectomy
This is the most common type of hysterectomy. The surgeon
makes a cut (incision) across your tummy (abdomen) above
the pubic hair, or sometimes downwards from your belly button
to the pubic hair.

Laparoscopic hysterectomy (or keyhole hysterectomy)


The surgeon makes small cuts in your tummy and inserts small
surgical instruments and a laparoscope (a telescope with a
camera on the end) through these. The surgeon sees pictures
on a screen and can check closely to see if the cancer has
spread. The womb and ovaries are removed through the vagina
or the cuts in the tummy. Women recover faster from this type
of hysterectomy. It involves a shorter stay in hospital, but it’s not
suitable for everyone. 

We have more information about different types of


hysterectomy in our fact sheet Having a hysterectomy.
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Understanding womb (endometrial) cancer

What else may be done?

During the operation, the surgeon will check organs nearby


to find out more about the stage (see page 24) of the cancer.
This involves putting some fluid into your tummy (abdomen)
and removing it so that it can be tested for cancer cells.
Doctors sometimes call this abdominal washing or
peritoneal washing.

Removing lymph nodes


You may have some or all of the lymph nodes (see page 7)
close to the womb (pelvic nodes) and at the back of the
tummy (para-aortic nodes) removed and checked for cancer
cells. Your surgeon will talk to you about the benefits and
disadvantages of removing some or all of the lymph nodes.

Knowing if the cancer has spread to the lymph nodes helps


your specialist decide if you need further treatment. You’ll have
lymph nodes removed if you have stage 2 or 3 womb cancer,
but if you have stage 1 cancer it may not be necessary. If your
CT or MRI scan has already shown that the cancer has spread
to the lymph nodes, the surgeon will remove them.

When the cancer has spread outside the womb


If the cancer has spread to organs close by, such as the
bladder or bowel, an operation to remove as much of the
cancer as possible is usually done. This helps to control the
cancer and may make the treatment you have after surgery
more effective. Very rarely, if the cancer is widespread in the
pelvic area, surgery to remove the bladder and the bowel,
as well as the womb, may be done. This is a major operation
called pelvic exenteration. 

Speak to one of our cancer specialists on 0808 808


00 00 for more information on pelvic exenteration. It
36
Surgery

If the cancer has spread to the liver or lungs, surgery is not


usually possible. Very occasionally, an operation to remove a
secondary tumour that’s contained in one area may be done.
But this would only be done when the cancer elsewhere in the
body is under control.

Before your operation

Before your operation, you’ll have some tests to prepare you


for surgery. These tests are usually done a few days or weeks
beforehand at a pre-assessment clinic. A member of the
surgical team and a specialist nurse will discuss the operation
with you. You’ll also be visited by the doctor who will give you
your anaesthetic (the anaesthetist). You’ll usually be admitted
to hospital on the morning of your operation.

You’ll be given special elastic stockings (TED stockings) to wear


during and after the operation to prevent blood clots forming
in your legs. Make sure you discuss any questions or concerns
that you have about the operation with your nurse or doctor.

If you smoke, try to give up or cut down before your operation.


This will help reduce your risk of chest problems, such as a
chest infection, and will help your wound to heal after the
operation. Your GP can give you advice and you may find it
helpful to read our booklet Giving up smoking.

Some hospitals follow an enhanced recovery programme,


which aims to reduce the time you are in hospital and to speed
up your recovery. It also gets you more involved in your own
care. For example, you’ll be given information about diet and
exercise before surgery and any arrangements needed for you
to go home will be put in place. Your doctor will tell you if an
enhanced recovery programme is suitable for you and if it’s
available, as not all hospitals follow this.   
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Understanding womb (endometrial) cancer

It’s a scary time when you don’t know exactly


what you’re dealing with, but I found that once
treatment started it was easier to think positive.’
Lynda

After your operation

How quickly you’ll recover will depend on the type of operation


you have and the extent of the surgery.

If you’re in an enhanced recovery programme, you’ll be


encouraged to get out of bed on the evening of the operation,
if possible. Your drip, which gives fluids into your vein, will be
removed soon after surgery and you’ll be able to start drinking
and eating again.

In the ward
After your operation, you’ll be given fluids into a vein in
your hand or arm, called a drip or an intravenous infusion.
Once you’re eating and drinking normally again, it’ll be taken
out. You’ll usually have a tube (catheter) put in during the
operation to drain urine from your bladder. This can be taken
out a few hours after your surgery, but in some cases it may
need to stay in for longer. If you have a wound drain (a fine
tube in the wound draining fluid that collects into a small
bottle), it’s usually taken out a few days after the operation.

38
Surgery

Pain
After your operation, you’ll have some pain and discomfort,
which will be controlled with painkillers. Depending on the
extent of your surgery, you may need a strong painkiller for
the first day or two after your operation.

You may be given this as injections into a muscle (given by


the nurses), or through a pump known as a patient-controlled
analgesia (PCA) pump. The pump is attached to a fine tube
(cannula), which is placed in a vein in your arm. It allows you to
release painkillers directly into your blood by pressing
a button. The machine is set so you always get a safe dose and
can’t have too much.

Some women may be given painkillers through an epidural


infusion for the first few days. A fine tube is inserted in your
back, into the space just outside the membranes surrounding
your spinal cord. A local anaesthetic and other painkilling
drugs are given by infusion (drip) into this space using an
electronic pump.

The drugs work by numbing the nerves in the operation area,


giving you continuous pain relief. It’s important to let the nurses
or doctor know if your painkillers aren’t working for you.
They can increase the dose or prescribe a different painkiller.
Painkillers can cause constipation, so you may be offered
laxatives. Let your nurse know if you have any problems going
to the toilet.

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Understanding womb (endometrial) cancer

Getting moving
After your operation, you’ll be encouraged to start moving
around as soon as possible. This is important for your recovery
as it helps prevent chest infections and blood clots. If you have
to stay in bed, the nurses will encourage you to do regular leg
movements and deep breathing exercises. A physiotherapist or
nurse can help you do these exercises.

Your wound
You’ll have a dressing covering your wound, which may be left
undisturbed for the first few days. After this, you’ll usually have
the dressings changed if there’s any leakage from the wound. 
If necessary, you can have any stitches or staples removed after
you’ve gone home. This will be done by a district nurse or at
your GP surgery.

Always let your doctor know if your wound becomes


hot, painful or starts to leak fluid – these are possible signs
of infection.  

Going home
You may be ready to go home between two and eight days
after an abdominal hysterectomy. If you’ve had laparoscopic
(keyhole) surgery, you can usually go home 1–4 days after
your operation. Your nurse will give you advice on looking
after yourself so that your wound heals and you recover well.

You’ll be given an appointment to come back to the outpatient


clinic to see the surgeon. At this appointment, your surgeon will
examine you and check the wound. You’ll be given information
about the results of the operation and you’ll be advised if you
need further treatment.

40
Surgery

When you get home

How quickly you recover will depend on the operation you’ve


had. It’s important to take things easy for a while, try to get
plenty of rest and eat well. If you’re having any problems it’s
important to contact your doctor or specialist nurse.

Physical activity
You’ll be advised to avoid strenuous physical activity or heavy
lifting for about three months after a hysterectomy and six
weeks after laparoscopic surgery. Your physiotherapist or
specialist nurse will give you advice about this. Do some light
exercise, such as walking, that you can gradually increase.
This will help you build up your energy levels and feel better.

Some women find driving uncomfortable after their operation,


so it’s probably a good idea to wait for a few weeks before
driving again. Some insurance policies give specific time limits,
so you may need to check this with your insurance company.
Don’t drive unless you feel you have full control of the car.

Hygiene
Try to have a shower or bath every day to keep your wound
clean. It’s common to have a reddish brown vaginal discharge
for up to six weeks after a hysterectomy. Use sanitary pads
rather than tampons to reduce the risk of infection.

Sex
Your surgeon will usually advise you not to have sex for at
least six weeks after your operation, to allow the wound to
heal properly. After that you’ll be able to go back to your usual
sex life. But it’s not unusual to need more time before you
feel ready, especially if you’re having other treatment as well.
There’s more information about this on pages 71–72.

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Understanding womb (endometrial) cancer

Early menopause
For younger women who haven’t reached the menopause,
a hysterectomy and removing the ovaries will bring on the
menopause. This means you will get menopausal symptoms –
you can read more about this on pages 68–72.

Possible long-term complications

Most women have no long-term complications after surgery.


But having other treatments as well as surgery may increase
the risk of problems. Rarely, women have bladder or bowel
problems after a hysterectomy because of damage to the
nerves during the operation. If you have had the pelvic
lymph nodes removed, there’s a risk of developing swelling
(lymphoedema) in one or both legs. This is a build up of
lymph fluid in the tissues. Lymphoedema isn’t common, but if
you have radiotherapy as well as surgery there’s more risk.
You can read more about lymphoedema and how you can
try to reduce the risk of getting it on pages 75–76.

Getting support

It’s not unusual to feel anxious after surgery. You may feel
your recovery is taking longer than you had expected it would,
or you may be worried about having further treatment. It’s often
helpful to talk about your feelings with your family and friends.
Your specialist nurse, our cancer support specialists or some
of the organisations listed on pages 94–98 can also give you
support. You can talk to our cancer support specialists on 0808
808 00 00 and get information about local support groups.

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Understanding womb (endometrial) cancer

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Understanding womb (endometrial) cancer

Radiotherapy
Radiotherapy treats cancer by using high-energy x-rays to
destroy the cancer cells, while doing as little harm as possible
to normal cells.

You may have radiotherapy:


•• to reduce the risk of the cancer coming back in the pelvic
area after surgery (called adjuvant radiotherapy)
•• instead of surgery (if your doctor doesn’t think a general
anaesthetic or an operation is suitable for you)
•• to try to cure a cancer that comes back at the top of the
vagina or in the pelvic area after surgery
•• to treat any cancer that wasn’t completely removed
with surgery.
Radiotherapy for womb cancer can be given externally or
internally, or as a combination of the two. Your cancer specialist
(clinical oncologist) can discuss this treatment in detail with you.

Our booklet Understanding radiotherapy has detailed


information about radiotherapy and its side effects.

44
Radiotherapy

Adjuvant radiotherapy

Your cancer specialist may talk to you about having radiotherapy


after surgery. It’s given to reduce the risk of the cancer coming
back in the pelvic area. Your specialist team looks at the stage,
the grade and type of womb cancer you have before discussing
this with you.

Some women with stage 1 cancer have a higher risk of the


cancer coming back. In this situation, your doctors may suggest
you have radiotherapy to reduce your risk. Or they may advise
that you have regular checks for signs of the cancer coming
back in the pelvis (called observation). Most women with
stage 2 or 3 womb cancer have radiotherapy after surgery.
Adjuvant radiotherapy may be given internally or externally
or as a combination of both. Some women are given
radiotherapy along with chemotherapy (see page 56).
This is called chemoradiation.

Your specialist will talk over the benefits and disadvantages of


radiotherapy in your situation. They will explain the side effects
you’re likely to get and the possible long-term effects.

Radiotherapy for symptom control


(palliative radiotherapy)

If the cancer has spread in the pelvic area or to other parts of


your body, such as the bones, you may be given radiotherapy
to shrink the cancer or to control the symptoms. This can usually
be given over about 1–5 sessions, but more may be needed
depending on your situation. If you have any side effects of
palliative radiotherapy, they will probably be mild.

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Understanding womb (endometrial) cancer

Positioning the radiotherapy machine

External radiotherapy

The treatment is given in the hospital radiotherapy department


as a series of short daily sessions. Each treatment takes
10–15 minutes, and they are usually given from Monday to
Friday, with a rest at the weekend. Your doctor will discuss
the treatment and possible side effects with you.
A course of radiotherapy for womb cancer may last up to five
weeks. It’s usually given to you as an outpatient.

External radiotherapy does not make you radioactive


and it’s perfectly safe for you to be with other people,
including children, after your treatment.

46
Radiotherapy

Planning your radiotherapy

Radiotherapy has to be carefully planned to make sure


it’s as effective as possible. It’s planned by a cancer specialist
(clinical oncologist) and it may take a few visits.

On your first visit to the radiotherapy department, you’ll be


asked to have a CT scan or lie under a machine called a
simulator, which takes x-rays of the area to be treated.

You may need to have some small marks made on your skin
to help the radiographer (who gives you your treatment)
position you accurately. These show where the rays will be
directed. These marks must stay visible throughout your
treatment, and permanent marks (like tiny tattoos) are normally
used. These are very small, and will only be done with your
permission. It may be a little uncomfortable while they are done.

Treatment sessions
At the beginning of each session of radiotherapy,
the radiographer will position you carefully on the couch,
and make sure you are comfortable. You’ll be alone in
the room during your treatment, but you can talk to the
radiographer, who will watch you from the next room.
Radiotherapy is not painful, but you have to lie still for a few
minutes during the treatment.

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Understanding womb (endometrial) cancer

Internal radiotherapy

Internal radiotherapy is sometimes called brachytherapy.


It gives a high dose of radiotherapy directly to the top of the
vagina (where the womb was) and to the area close by. The
treatment is given by placing hollow tubes (called applicators)
in the vagina. A machine, which is operated by a radiographer,
delivers a radioactive source that gives off radiation into
the correct place through the applicators. The machine is
programmed to give you the exact dose your cancer specialist
has prescribed for you. When the treatment finishes, a nurse will
remove the applicators and you will be able to go home. 

Occasionally, women who still have their womb may have


a slightly different type of internal treatment. It involves putting
a tube into the womb as well as the vagina. This is done under a
short general anaesthetic or occasionally a spinal anaesthetic.
Your doctor or nurse will explain more about what’s involved.

You can have internal radiotherapy on its own or at the end


of your external radiotherapy treatment. Internal radiotherapy
can be given in different ways, depending on the system your
hospital uses. They all work equally well. Your cancer specialist
and specialist nurse will explain more so that you know what
to expect.

You may have several short bursts of treatment, which is


called high-dose rate or fast treatment. Or you may have one
long slow treatment, called low-dose rate or slow treatment.

48
Radiotherapy

Fast treatment (high-dose rate)


This is the most common way of giving internal radiotherapy
after surgery to treat womb cancer. You can usually have
it done as an outpatient. Your doctor will carefully put a
hollow plastic or metal tube (applicator) into your vagina.
You won’t usually need any anaesthetic to have this done.
But let your nurse or doctor know if you’re worried or have
any discomfort. They can help to reassure you or give you
painkillers if you need them.

You’ll probably have a CT scan or x-ray to check the position


of the applicators. After this, a radiographer will attach
a flexible tube to the applicator. This is connected to the
machine that delivers the radioactive source into the applicators.
The radiographer and nurse will leave the room and switch on
the treatment machine. They will still be able to see you and
hear you, so if you need anything they can stop the machine
and come back in again.

The treatment only lasts a few minutes, and a nurse will gently
remove the applicators when it’s over. You’ll need to come
back and have it on different days for between two and four
treatments. You can usually have it as an outpatient.

Slow treatment (low-dose rate)


This treatment is given in the same way as the fast treatment
but much more slowly. It can be given over 12 to 24 hours,
or over a few days. You will usually have your treatment in a
room of your own or with another woman who’s having similar
treatment. Being in your own room means other people aren’t
exposed to unnecessary radiation.

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Understanding womb (endometrial) cancer

You’ll need to need to stay in bed lying down while the


applicators are in place, to make sure they stay in the correct
position. Having the applicators in and not being able to move
around can be uncomfortable but you’ll be given regular
painkillers. Let your nurse or doctor know if you’re in any pain.
You’ll also have a catheter (tube) inserted into your bladder
because you won’t be able to get out of bed to pass urine. 

The radioactive source can be withdrawn from the applicator


tubes back into the machine to allow nurses or doctors to come
in without being exposed to radiation. The nurses will come
in regularly to check the applicators, give you painkillers and
make sure you’re comfortable. You’ll have a nurse call system
at hand to allow you to contact them at any time.

You can also have some visitors (except pregnant women or


children), but only for a short time so that you can get on with
the treatment. The machine adds on the time that you’re not
being treated, so you’ll still get the same dose. A nurse will go
over all this with you beforehand so you know what to expect.

It’s a good idea to take in plenty to read, and an MP3 player


or radio to keep you occupied. There will be a television in the
room that you can watch. If you get anxious or worried during
the treatment because you’re on your own a lot of the time,
let the nurse or doctor know how you’re feeling so that they
can give you more support.

When your treatment finishes, your nurse will gently remove the
applicators and catheter and you will be able to go home. 

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Understanding womb (endometrial) cancer

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Understanding womb (endometrial) cancer

Side effects of radiotherapy

You may develop side effects over the course of your treatment.
These usually improve gradually over a few weeks or months
after treatment finishes. Your doctor, nurse or radiographer
will discuss this with you, so you know what to expect. Let them
know about any side effects you have during or after treatment,
as there are often things that can be done to help.

External radiotherapy causes more side effects than internal


radiotherapy. But many women have a combination of both
treatments. If you are only having internal treatment, the most
common side effects are to the bowel and bladder.

Skin changes
The skin in the area being treated sometimes gets dry and
irritated. Avoid using perfumed soaps or body washes during
treatment as they could irritate the skin. You’ll be given advice
on looking after your skin. Your doctor can prescribe cream
to soothe it if it becomes sore. 

You may lose some of your pubic hair. After treatment, it will
usually grow back, but may be thinner than it was before.

Bowel changes
Radiotherapy to the pelvis may irritate the bowel and cause
diarrhoea and soreness around the back passage. Your doctor
will prescribe anti-diarrhoea medicine to help control this.
Make sure you drink plenty of fluids if you have diarrhoea.
Eating a low-fibre diet may help reduce diarrhoea. This means
avoiding wholemeal bread and pasta, raw fruit, cereals and
vegetables during and for a couple of weeks after treatment.

52
Radiotherapy

Bladder changes
Radiotherapy can also irritate the bladder, which makes you
want to pass urine more often and causes a burning feeling
when you pass urine. Your doctor can prescribe medicines to
reduce these symptoms. Drinking a least two litres (three pints)
of fluid a day will also help.

Tiredness
This is a common side effect and may continue for months
after treatment is over. During treatment, you’ll need to rest
more than usual, especially if you have to travel a long way
for treatment each day. But it’s good to do gentle exercise,
such as walking, when you feel able to. Once your treatment
is over, gradually increase your activity and try to balance rest
periods with exercise such as walking. This will help build up
your energy levels.

Vaginal discharge
You may have a slight vaginal discharge after treatment has
finished. If it continues or becomes heavy, let your clinical
oncologist or specialist nurse know.

We can send you a fact sheet with more information


about the possible side effects of pelvic radiotherapy.

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Understanding womb (endometrial) cancer

Possible late effects

Radiotherapy to the pelvic area can sometimes cause


long-term side effects (late effects). However, improvements
in how radiotherapy is given have reduced the risk of some
late effects. If they do happen, there are lots of ways in which
they can be managed or treated. 

In women, radiotherapy to the pelvic area can cause vaginal


dryness and narrow the vagina, which can make having sex
or an internal examination uncomfortable. Your specialist
nurse will usually talk to you about ways of trying to prevent
narrowing (such as using vaginal dilators) and creams to treat
dryness. See pages 70–71 for more information.

Some women may develop some permanent changes to the


bowel or bladder. If this happens, symptoms generally develop
from six months to two years after radiotherapy treatment,
although in some people it may be years later. If your bowel is
affected, you may have to go the toilet more often than usual,
or you may have diarrhoea. Sometimes, the bladder shrinks
after radiotherapy and can’t hold as much, so you’ll need to
pass urine more often. The blood vessels in the bowel and
bladder can become more fragile, and if this happens you may
get blood in your urine or bowel movements. Always let your
cancer doctor or specialist nurse know if this happens so that
the bleeding can be checked out. 

Radiotherapy and surgery to remove the pelvic lymph nodes


may increase the risk of getting swelling (lymphoedema) in one,
or occasionally both, legs. This isn’t common, but you can read
about ways to reduce the risk of lymphoedema on pages 75–76.

We have a booklet called Managing the late effects


of pelvic radiotherapy in women.
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Understanding womb (endometrial) cancer

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Understanding womb (endometrial) cancer

Chemotherapy
Chemotherapy is the use of anti-cancer (cytotoxic) drugs to
destroy cancer cells. The drugs are carried in the blood and
can reach cancer cells anywhere in the body. If you have
early-stage womb cancer, you’re unlikely to need chemotherapy. 

When chemotherapy is given

Chemotherapy is sometimes offered after surgery and


radiotherapy, to reduce the risk of womb cancer coming back.
This is called adjuvant chemotherapy. There may be more risk
of the cancer coming back if it:
•• is high-grade (grade 3)
•• is a non-endometrial type (see page 9)
•• is large
•• has spread to the lymph nodes.

Your specialist will talk to you about the possible benefits and
side effects of chemotherapy, so that you can decide if it’s right
for you. In some situations, chemotherapy may be given instead
of radiotherapy after surgery. It may also be given before
surgery to shrink the cancer before removing it, or to treat
cancer that’s left behind after your operation. 

Advanced cancer

If the cancer spreads to other parts of the body, chemotherapy


can be given to help control it and relieve symptoms without
causing too many side effects. This is sometimes called
palliative treatment. Your cancer specialist or specialist nurse
will explain what it involves and the likely side effects.
56
Chemotherapy

How chemotherapy is given

You’re likely to have the chemotherapy drugs given by


injection into a vein (intravenously) or as a drip (infusion).
Occasionally, the drugs are given through a soft plastic line
called a central line into a vein in your chest or through a
thin tube inserted into your upper arm (a PICC line).
Chemotherapy is usually given as a session of treatment.
After each session, you’ll usually have a rest period of a few
weeks before the next session. This allows your body to recover
from the side effects. The chemotherapy session and the rest
period make up a cycle of treatment. Your doctor or nurse will
explain how many cycles of treatment are planned for you and
how you’ll be given your chemotherapy.

Our booklet Understanding chemotherapy has more


detailed information.

Chemotherapy drugs used

The drugs commonly used to treat womb cancer are:


•• carboplatin
•• cisplatin
•• doxorubicin
•• paclitaxel (Taxol®).
Other drugs may also be used. You may be given a
combination of two or three drugs, or just one. If you’re
having adjuvant chemotherapy, you’re more likely to have
a combination of drugs. Your doctor or specialist nurse will
explain more about the chemotherapy treatment to you.

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Understanding womb (endometrial) cancer

We have fact sheets about individual chemotherapy


drugs and combinations.

Side effects

Chemotherapy drugs can cause side effects, but many of


these can be well controlled with medicines and will usually go
away when your treatment is finished. If the cancer is causing
symptoms, chemotherapy can also make you feel better by
relieving them. Your doctor or nurse will tell you more about
what to expect. Always mention any side effects you’re having,
as there are usually ways in which they can be controlled.
The main side effects are described here, along with some
ways to control or reduce them. 

Risk of infection
While the drugs are acting on the cancer cells in your body,
they also temporarily reduce the number of white blood cells
in your blood. When these cells are reduced, you’re more likely
to get an infection.

Contact the hospital straight away and speak to a doctor


or nurse if:
•• your temperature goes above 38°C (100.4°F)
•• you suddenly feel ill, even with a normal temperature.

If necessary, you’ll be given antibiotics to treat an infection.


You’ll have a blood test before each cycle of chemotherapy to
make sure your cells have recovered. Occasionally, it may be
necessary to delay treatment if the number of white blood cells
is still low.

58
Chemotherapy

Anaemia
If the level of red blood cells in your blood is low, you may feel
tired and breathless. This is called anaemia. Anaemia can be
treated by having a blood transfusion. We have a fact sheet
about blood transfusions.

Bruising and bleeding


Chemotherapy can reduce the number of platelets in your
blood. Platelets are cells that help the blood to clot. If you
develop any unexplained bruising or bleeding, such as
nosebleeds, bleeding gums, blood spots or rashes on the skin,
contact your doctor or the hospital straight away.

Feeling sick
Some chemotherapy drugs can make you feel sick (nausea) or
be sick (vomit). Your cancer specialist will prescribe anti-sickness
(anti-emetic) drugs to prevent this. Let your doctor or nurse
know if your anti-sickness drugs are not helping, as there are
several different types you can take.

Tiredness (fatigue)
You’re likely to become tired and have to take things slowly.
Try to pace yourself and save your energy for things that you
want to do or that need doing. Balance rest with some physical
activity – even going for short walks will help increase your
energy levels.

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Understanding womb (endometrial) cancer

Poor appetite
You may lose your appetite during chemotherapy. Try to eat
frequent, small meals and ask others for help in preparing
meals. There are many ready-to-drink supplements that add
energy and protein to your diet, some of which are available
on prescription.

Sore mouth
Some chemotherapy drugs can make your mouth sore and
may cause ulcers. Keeping your mouth and teeth clean and
using mouthwashes regularly is important. Your nurse will
show you how to use these properly.

Diarrhoea
If you have diarrhoea, it can usually be controlled easily with
medicine. Let your doctor know if it’s severe or if it continues.
Try to drink 2–3 litres of fluid a day to replace lost fluid.

Hair loss
Your doctor or nurse will be able to tell you if the
chemotherapy drugs that you are going to have will cause
hair loss. Not all the drugs used to treat womb cancer have
this side effect. If your hair does fall out, it will start to grow
back again once your chemotherapy is over.

Numbness or tingling in hands or feet


This is due to the effect of some chemotherapy drugs on the
nerves and is called peripheral neuropathy. Tell your doctor
if you notice these symptoms or have difficulty carrying out
fiddly tasks. This problem usually improves slowly a few months
after treatment is over, but it can sometimes be permanent.

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Chemotherapy

Allergic reaction
Taxol may sometimes cause an allergic reaction while it’s being
given. To reduce the chance of this happening, you’ll be given
steroids before and after treatment. Signs of a reaction can
include: skin rashes and itching; a high temperature; shivering;
dizziness; a headache; and breathlessness. If you notice any of
these effects, tell your nurse or doctor straight away so it can
be treated quickly.

Risk of blood clots


Cancer can increase your risk of developing a blood clot
(thrombosis), and having chemotherapy may increase this
risk further. A blood clot may cause symptoms such as pain,
redness and swelling in a leg, or breathlessness and chest pain.
Blood clots can be very serious, so it’s important to tell your
doctor straight away if you have any of these symptoms.
Most clots can be treated successfully with drugs that thin the
blood. Your doctor or nurse can give you more information.

Although the side effects can be hard to deal with,


they usually improve gradually when treatment finishes.

We have more information about many of these side


effects and how to cope with them.

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Understanding womb (endometrial) cancer

Hormonal treatment
Hormones exist naturally in the body. They help control
how cells grow and what they do in the body. The hormones
oestrogen and progesterone can encourage cells in the
womb lining to grow. Your cancer specialist may suggest
hormonal therapy if you have advanced womb cancer or if
you have womb cancer that has come back.

The main treatment is progesterone. It may help to shrink


the cancer and control symptoms. You’re likely to have it as
a tablet, but sometimes it’s given as an injection by your GP
or practice nurse. The most common types of progesterone are:
•• medroxyprogesterone acetate (Provera®)
•• megestrol (Megace®).

Side effects

The main side effects of progesterone are:


•• an increase in your appetite
•• weight gain
•• fluid retention (for example swollen ankles)
•• feeling sick.
The side effects can be mild and you aren’t likely to get all
of them. Let your doctor or nurse know if you are having
troublesome side effects.

We have fact sheets about Provera and Megace.

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Research – clinical trials

Research – clinical trials


Cancer research trials are carried out to find new and better
treatments for cancer. Trials that are carried out on patients
are known as 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 to
reduce side effects
•• compare the effectiveness of drugs used to control symptoms
•• find out how cancer treatments work
•• see which treatments are the most cost-effective.

Trials are the only reliable way to find out if a different


operation, type of chemotherapy, radiotherapy or other
treatment is better than what is already available.

Taking part in a trial

You may be asked to take part in a treatment research trial.


There can be many benefits of doing this. Trials help to improve
knowledge about cancer and develop new treatments. You will
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 not to be as good
as existing treatments or to have side effects that outweigh
the benefits.

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Understanding womb (endometrial) cancer

If you decide not to take part in a trial, your decision will be


respected and you don’t have to give a reason. However, it can
help to let the staff know your concerns so that they can give
you the best advice. There will be no change in the way that
you’re 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 bone marrow or 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’re taking part in a trial, you may also be asked
to give other samples. These may be frozen and stored for
future use, when new research techniques become available.
These samples will have your name removed from them 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 long
time, so you are unlikely to hear the results. The samples will,
however, be used to increase knowledge about the causes of
cancer and its treatment. This research will hopefully improve
the outlook for future patients.

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Research – clinical trials

Current research

If you’ve had a total hysterectomy for womb cancer and are


due to have radiotherapy (see page 44), you may be asked to
take part in a trial called PORTEC3. This trial aims to find out
whether giving chemotherapy as well as radiotherapy after
surgery can help reduce the risk of the cancer coming back.

After surgery, half of the women in the trial will be given


radiotherapy and the other half will have a combination of both
chemotherapy and radiotherapy. Your doctor or specialist nurse
will explain more about the trial if it is appropriate for you.

Our website macmillan.org.uk/clinicaltrials has


details of databases you can search to look at trials
for womb cancer.

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Understanding womb (endometrial) cancer

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Follow-up

Follow-up
After your treatment, you’ll have regular check-ups, which
will include having an internal examination. These will be
every few months at first, but eventually you may only be
seen once a year.

Sometimes, instead of routine appointments, some women


are asked to contact their cancer specialist or nurse if they
have new symptoms or are worried about anything. If you have
any problems or new symptoms in between appointments,
it’s important to contact your cancer doctor or specialist nurse
as soon as possible. Important symptoms to be aware of
are bleeding from the vagina or back passage, and pain in
the pelvic area.

If womb cancer comes back in the same area, it can often be


treated successfully.

Many women feel worried for a while before their appointments.


This is natural, and it can help to get support from family,
friends or one of the organisations listed on pages 94–98.
You can also contact the Macmillan Support Line on
0808 808 00 00.

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Understanding womb (endometrial) cancer

Sex and fertility


Treatment for womb cancer may affect your sex life and how
you feel about yourself sexually. In this section we explain what
can be done to improve these problems. We’ve also included
information for younger women who may lose their fertility
(ability to have children).

We have a booklet called Sexuality and cancer,


which has more detailed information.

Menopausal symptoms

If you haven’t been through the menopause, a hysterectomy


that involves removing your ovaries will bring on your
menopause straight away.

Women who have radiotherapy without any surgery will also


have their menopause. This is because radiotherapy stops the
ovaries from working.

Hormone replacement therapy (HRT) isn’t usually advised after


womb cancer because it contains oestrogen. But there’s no
evidence that it increases the risk of the cancer coming back.

Some cancer specialists may prescribe HRT for women who


had early womb cancer and who are having troublesome
menopausal symptoms. This may be prescribed when other
measures haven’t worked.

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Sex and fertility

Some common symptoms of the menopause include:


Hot flushes and sweats
Low doses of antidepressant drugs can be prescribed to
reduce flushes.

Vaginal dryness (see page 71)


Non-hormonal creams and water-based lubricants help reduce
discomfort during sex.

Low sex drive


Vaginal changes (see page 70) can reduce your sex drive.
However, help to manage these changes can improve things
for many women.

Emotional symptoms
These can include mood swings, feeling anxious, and
problems with concentration and memory. Talking about
your feelings with your family, friends, doctor or nurse can
help. Some women find it helps to talk things through with
a counsellor.

Bone thinning
An early menopause can increase the risk of bone
thinning (osteoporosis).

Our booklet Bone health has helpful tips on keeping


your bones healthy.

Your doctor or specialist nurse can give you advice on how to


manage symptoms and sometimes drugs can be prescribed to
reduce hot flushes.

A number of organisations, including The Daisy Network


(see page 94), provide support to women going through
the menopause.
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Understanding womb (endometrial) cancer

Vaginal changes

Radiotherapy to the pelvis can make the vagina narrower and


less stretchy. It also reduces the natural lubrication in the vagina,
making it drier. This can make having sex or an internal medical
examination uncomfortable, so it’s important to try to keep the
vagina from narrowing. Your specialist nurse will explain more
about this and answer any questions you may have. They are
used to discussing these issues, so you needn’t feel embarrassed.

Vaginal dilators

Your hospital team may recommend you use vaginal dilators


to try to prevent the vagina from narrowing. Dilators are
tampon-shaped plastic tubes of different sizes that are used with
a lubricant. Although they are commonly used, there isn’t strong
evidence to say how effective they are. Rarely, they may cause
damage to the vagina, especially if they aren’t used correctly.
Your specialist nurse or doctor will explain how best to use
them in your particular situation.

Having regular penetrative sex, using a dildo, using a vibrator


or using lubricated fingers may also help keep the vagina from
narrowing. Even if you are having regular sex, you may still be
advised to use a dilator.

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Sex and fertility

Vaginal dryness

Different creams, gels, lubricants or pessaries (small pellets


that are put inside the vagina) can help with this. Your doctor
may recommend using vaginal oestrogen creams or pessaries,
which can be prescribed. Although your body absorbs some
oestrogen from these products, doctors think it’s too small an
amount to be harmful. Your cancer doctor will tell you if it’s
advisable for you to take these.

There are lots of products to improve vaginal dryness that you


can buy from most chemists and some supermarkets.
For example, Replens MD® cream or water-based lubricants
such as Senselle®, Astroglide®, Sylk®, Vielle® or Durex® lube.
Vaginal dryness can make you more likely to get infections,
such as thrush, so let your doctor know if you have symptoms
such as itching or soreness. 

Sex after treatment

Womb cancer, its treatments and their side effects may affect
your sex life and how you feel about yourself as a woman.
This often gradually improves after treatment, although for
some women it may take longer. Try not to think that sex is
never going to be important in your life again. There may be a
period of adjustment for you and your partner, if you have one.

Cuddles, kisses and massages are affectionate and sensual


ways of showing how much you care for someone, even if
you don’t feel like having sex. You can wait until you and your
partner feel ready – there’s no right or wrong time.

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Understanding womb (endometrial) cancer

It’s common to feel nervous about sex after cancer treatment,


but it’s perfectly safe for both you and your partner. At first it
may be easier to take more time to help you relax and for your
partner to be very gentle.

Let your doctor or nurse know if you’re having problems with


your sex life. They may be able to reassure you and offer help
and support. If you feel uncomfortable talking to your doctor
or nurse, you can call us on 0808 808 00 00. Some people
may find it helpful to talk to a sex therapist. You can contact
a therapist through The College of Sexual and Relationship
Therapists (see page 94).

Effects on fertility

Surgery and radiotherapy for womb cancer mean that you won’t
be able to have children. Although most women who have
womb cancer are older, it does occasionally affect younger
women. If your fertility is a concern for you, it’s important to
discuss it with your cancer specialist before your treatment starts.
Fertility is a very important part of many people’s lives, and not
being able to have children can seem especially hard when you
already have cancer to cope with.

Occasionally, women may have their eggs removed and stored


before having radiotherapy. This may happen if they want to
consider trying having a child through surrogacy (when another
woman carries a baby for you) in the future.

There’s more detailed information in our leaflet


Cancer treatment and fertility – information for women.

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After treatment

After treatment
After treatment, you’ll probably be keen to get back to doing
the things you did before your cancer diagnosis. But you may
still be coping with the side effects of treatment and also with
some difficult emotions (see pages 79–82). Recovery takes
time, so try not to be hard on yourself. It’s not unusual to feel
anxious and even a bit isolated at this time.

People often worry about the cancer coming back and that any
ache or pain is a sign that it has returned. It’s important to talk
over any concerns or questions that you have with your cancer
doctor, specialist nurse or GP – you don’t need to wait until
your follow-up appointments.

Our booklet Life after cancer treatment discusses how


to cope after treatment.

In this section we discuss some of the problems people face


after treatment and things that can be done to help.

Lifestyle changes

After womb cancer treatment, some women choose to make


positive lifestyle changes. Even if you had a healthy lifestlye
before being diagnosed with cancer, you may now be more
focused on making the most of your health.

Keep to a healthy weight


If you feel you need to lose weight when you’re feeling up to it,
ask your GP for advice and what your ideal weight is. 

Our booklet Weight management after cancer


treatment has some helpful tips.
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Understanding womb (endometrial) cancer

There’s some evidence that keeping to a healthy weight after


the menopause may help reduce the risk of womb cancer
coming back. It also reduces the risk of some other cancers,
heart problems and other illnesses, such as diabetes.

Here are some tips to help you lose weight:


•• only eat as much food as you need
•• eat a balanced diet with lots of fruit and vegetables
•• eat less fat and sugar
•• become more physically active.

Eat healthily
Eating healthily will give you more energy and help you recover.
Try to eat plenty of fruit and vegetables (five portions a day),
cut down on red meat and eat more chicken and fish.

There’s more information in our booklet Healthy eating


and cancer.

Get physically active


Being physically active helps keep your weight healthy,
reduce stress and tiredness, and the risk of other health
conditions. There’s some evidence that taking regular physical
activity may help to reduce the risk of womb cancer coming
back, and of getting some other cancers. It also reduces the
risk of bone thinning (osteoporosis) in women who had an early
menopause.

Your GP or cancer specialist may be able to refer you to special


exercise groups run by exercise trainers.

We have a booklet called Physical activity and cancer


treatment, which has more information.
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After treatment

Stop smoking and drink sensibly


If you’re a smoker, giving up is one of the healthiest
decisions you can make. Smoking is a major risk factor
for some cancers and heart disease.

Our booklet Giving up smoking has more information


and tips to help you quit.

It’s a good idea to stick to sensible drinking guidelines,


which recommend that women drink fewer than two units
of alcohol a day or fewer than 14 a week.

Reducing lymphoedema risk

There are things you can do to reduce your lymphoedema


risk (see page 42). This mainly involves protecting the skin on
your legs and feet. Infection can trigger lymphoedema, so it’s
important to avoid damage to the skin. If you get swelling in
your foot or leg, always get it checked by your doctor or nurse.

What you can do


•• Keep the skin clean and use moisturisers to keep it supple.
•• Clean grazes or cuts straight away and see your GP if the
area gets red, hot or swollen.
•• Use an electric razor if you want to shave your legs.
•• Wear well-fitting shoes and use nail clippers instead of
scissors to cut your toenails.
•• Cover up or use a high factor suncream (SPF 30+) on
sunny days.
•• Keep to a healthy weight.

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Understanding womb (endometrial) cancer

•• Keep physically active and avoid standing for too long in


one position.
Our booklet Understanding lymphoedema has
more detailed information.

Emotional support

It’s common to feel a range of emotions after cancer treatment


(see pages 79–82). But as you recover and get back to your
everyday life, these usually get easier to deal with. Talking to
family and friends often helps. If these feelings don’t improve
and you feel depressed, helpless or worried, let your doctor or
nurse know. Your hospital consultant or GP can refer you to a
psychologist or counsellor who specialises in helping people with
cancer. Our cancer support specialists on 0808 808 00 00 can
tell you more about counselling and about services in your area.

There may be support groups in your area where you can talk
to people in a similar situation. Or you may like to join an online
community to get and give advice and support based on your
experience. Macmillan’s online community is at macmillan.
org.uk/community

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Understanding womb (endometrial) 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.

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.

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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.

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Understanding womb (endometrial) 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.
Many cancers are curable if found at an early stage. 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.

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Your feelings

Denial

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.

Anger

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.

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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.

Resentment

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.

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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.

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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

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

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Understanding womb (endometrial) cancer

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 of 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.

86
Work

Work
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. Even if a person who had cancer in the past has been
successfully treated and is now cured, they are still covered by
the act. 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

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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.

Patients with a terminal cancer diagnosis, or whose prognosis


is poor, can claim DLA and AA under the Special Rules.

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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.

Insurance

After having cancer treatment, it can be more difficult 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 listed on page 98.

Our leaflet Getting travel insurance and our booklet


Insurance may be helpful.
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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
www.macmillan.org.uk 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.

90
How we can help you

Publications If you’d like to hear more


We provide expert, up-to-date about becoming a reviewer,
information about different email reviewing@
types of cancer, tests and macmillan.org.uk
treatments, and information
about living with and after Need out-of-hours support?
cancer. We can send you free You can find lots of information
information in a variety of on our website, macmillan.
formats, including booklets, org.uk For medical attention
leaflets, fact sheets, and audio out of hours, contact your GP
CDs. We can also provide for their out-of-hours service.
our information in Braille
and large print. Someone to talk to

You can find all of our When you or someone you


information, along with know has cancer, it can be
several videos, online difficult to talk about how
at macmillan.org.uk/ you’re feeling. You can call
cancerinformation You can our cancer support specialists
also order our information at to talk about how you feel and
be.macmillan.org.uk what’s worrying you.

Review our information We can also help you find


Help us make our resources support in your local area,
even better for people affected so you can speak face-to-face
by cancer. Being one of our with people who understand
reviewers gives you the chance what you’re going through.
to comment on a variety of
information including booklets,
fact sheets, leaflets, videos,
illustrations and website text.

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Understanding womb (endometrial) cancer

Professional help Support for each other

Our Macmillan nurses, doctors No one knows more about


and other healthcare and the impact cancer has on a
social care professionals offer person’s life than those who
expert treatment and care. have been affected by it
They help individuals and themselves. That’s why we
families deal with cancer from help to bring people with
diagnosis onwards, until they cancer and carers together in
no longer need this help. their communities and online.

You can ask your GP, hospital Support groups


consultant, district nurse You can find out about support
or hospital ward sister if groups in your area by calling
there are any Macmillan us or by visiting macmillan.
professionals available org.uk/selfhelpandsupport
in your area, or call us.
Online community
You can also share your
experiences, ask questions,
get and give support to others
in our online community
at macmillan.org.uk/
community

92
How we can help you

Financial and Find out more about the


work-related support 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
bills. Some people may have Learning about cancer
to stop working.
You may find it useful to learn
If you’ve been affected in this more about cancer and how
way, we can help. Call the to manage the impact it can
Macmillan Support Line and have on your life.
one of our cancer support
specialists will tell you about You can do this online on our
the benefits and other financial Learn Zone – macmillan.org.
help you may be entitled to. uk/learnzone – which offers
a variety of e-learning courses
We can also give you and workshops. There’s
information about your rights also a section dedicated to
at work as an employee, and supporting people with cancer
help you find further support. – ideal for people who want
to learn more about what
Macmillan Grants their relative or friend is
Money worries are the last going through.
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.

93
Understanding womb (endometrial) cancer

Other useful organisations


Gynaecological cancer Email info@cosrt.org.uk
support organisations www.cosrt.org.uk
A national specialist charity
Gynae C for sex and relationship
1 Bolingbroke Road, therapy. Has a list of qualified
Swindon SN2 2LB practitioners and clinics
Tel 01793 491 116 providing sex or relationship
Email info@gynaec.co.uk therapy in the UK. Send a
www.gynaec.co.uk stamped addressed envelope
Aims to support women for details, or visit the website.
with any form of
gynaecological cancer, The Daisy Network
their partner, family and PO Box 183,
friends. Offers confidential, Rossendale BB4 6WZ
emotional support via a Email
telephone helpline, email or daisy@daisynetwork.org.uk
letter. Also supplies information www.daisynetwork.org.uk 
about other related groups A support group for women
and organisations.  who have experienced a
premature menopause due
Sex and fertility to a medical condition or
support organisations treatment. Offers information
and has a network of women
The College of Sexual who are willing to share
and Relationship their personal experiences of
Therapists (COSRT) premature menopause.
PO Box 13686,
London SW20 9ZH
Tel 020 8543 2707

94
Other useful organisations

General cancer Offers information and


support organisations support to people with
cancer, families, friends,
Cancer Black Care and healthcare professionals.
79 Acton Lane, Runs a network of support
London NW10 8UT groups across Scotland.
Tel 020 8961 4151
(Mon–Fri, 9.30am–4.30pm) Irish Cancer Society
Email 43–45 Northumberland Road,
info@cancerblackcare.org.uk Dublin 4, Ireland
www.cancerblackcare. Cancer Helpline
org.uk 1800 200 700 (Mon–Thurs,
Offers a variety of information 9am–7pm, Fri, 9am–5pm)
and support for people Email helpline@irishcancer.ie
with cancer from ethnic www.cancer.ie
communities, their families, Operates Ireland’s only
carers and friends. freephone cancer helpline,
Welcomes people from which is staffed by nurses
different ethnic groups trained in cancer care.
including African, Asian,
Turkish and African- Maggie’s Cancer
Caribbean communities. Caring Centres
8 Newton Place,
Cancer Support Glasgow G3 7PR
Scotland (Tak Tent) Tel 0300 123 1801
Flat 5, 30 Shelley Court, Email enquiries@
Gartnavel Complex, maggiescentres.org
Glasgow G12 0YN www.maggiescentres.org
Tel 0141 211 0122 Maggie’s Centres offer free,
Email info@ comprehensive support for
cancersupportscotland.org anyone affected by cancer.
www.cancersupport You can access information,
scotland.org benefits advice, and emotional
or psychological support.

95
Understanding womb (endometrial) cancer

Tenovus Support for carers


9th Floor, Gleider House,
Ty Glas Road, Llanishen, British Red Cross
Cardiff CF14 5BD 44 Moorfields,
Freephone helpline London EC2Y 9AL
0808 808 1010 Tel 0844 871 11 11
Tel 029 2076 8850 Email
Email post@tenovus.com information@redcross.org.uk
www.tenovus.org.uk www.redcross.org.uk
Provides a variety of Provides short-term support
services to people with for vulnerable people in the
cancer and their families, UK, including therapeutic
including counselling and care, a medical equipment
a freephone cancer helpline. loan service and a transport
service.
The Ulster
Cancer Foundation Carers UK
40–44 Eglantine Avenue, 20 Great Dover Street,
Belfast BT9 6DX London SE1 4LX
Freephone helpline Tel 020 7378 4999
0800 783 3339 Advice line 0808 808 7777
Helpline email (Wed and Thurs,
infocis@ulstercancer.org 10am–12pm and 2–4pm)
Tel 028 9066 3281 Email info@carersuk.org
Email info@ulstercancer.org www.carersuk.org
www.ulstercancer.org Offers information and
Provides a variety of services support to carers. Can put
for people with cancer and people in contact with local
their families, including a free support groups. Has national
telephone helpline, which is offices for Scotland, Wales
staffed by specially trained and Northern Ireland:
nurses with experience in
cancer care.

96
Other useful organisations

Carers Scotland The National Young Carers


The Cottage, 21 Pearce Initiative works nationally
Street, Glasgow G51 3UT to promote good practice
Tel 0141 445 3070 for young carers and their
Email families. From the website you
info@carerscotland.org can search for local young
www.carersuk.org/ carers projects in the UK, and
scotland also access information for
young carers.
Carers Wales
River House, Ynsbridge Young Carers Net (YCNet)
Court, Gwaelod-y-Garth, Head Office Carers Trust,
Cardiff CF15 9SS 32–36 Loman Street,
Tel 029 2081 1370 London SE1 0EH
Email info@carerswales.org Tel 0844 800 4361
www.carersuk.org/wales Email
youngcarers@carers.org
Carers Northern Ireland www.youngcarers.net
58 Howard Street, Young Carers Net (part of
Belfast BT1 6PJ Carers Trust) provides advice
Tel 028 9043 9843 and support for young people
Email info@carersni.org aged 18 and under in the
www.carersuk.org/ UK, who help to look after
northernireland someone in their family who
has an illness, disability, drug/
Young Carers Initiative alcohol addiction or mental
(part of The Children’s health condition.
Society)
The Children’s Society, Edward
Rudolf House, Margery Street,
London WC1X 0JL
Tel 0300 303 7000
Email from the website 
www.youngcarer.com

97
Understanding womb (endometrial) cancer

Financial and Personal Finance Society –


legal advice ‘Find an Adviser’ service
42–48 High Road, South
Benefit Enquiry Line Woodford, London E18 2JP
Warbreck House, Warbreck Tel 020 8530 0852
Hill Road, Blackpool FY2 0YE Email from the website
Freephone 0800 882 200 www.findanadviser.org
Free textphone The UK’s largest professional
0800 243 355 body for independent financial
Email BEL-Customer- advisers. Use the ‘Find an
Services@dwp.gsi.gov.uk Adviser’ website to find
www.direct.gov.uk/ qualified financial advisers
disabilitymoney in your area.
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
citizensadvice.org.uk
Find advice for the UK online,
in a variety of languages,
at adviceguide.org.uk

Citizens Advice Scotland


www.cas.org.uk

98
Further resources

Further resources
Related Macmillan •• Physical activity and
information cancer treatment

You may want to order some •• Self-employment and cancer


of the resources mentioned in •• Sexuality and cancer
this booklet. These include:
•• Talking about your cancer
•• Bone health
•• Talking to children when
•• Cancer treatment an adult has cancer
and fertility – information
for women •• Understanding cancer
research trials (clinical trials)
•• Coping with fatigue
•• Understanding
•• Coping with hair loss cervical cancer
•• Getting travel insurance •• Understanding
•• Giving up smoking chemotherapy

•• Healthy eating and cancer •• Understanding


lymphoedema
•• Hello, and how are you?
•• Understanding radiotherapy
•• Help with the cost of cancer
•• Understanding soft
•• How are you feeling? tissue sarcomas
•• Life after cancer treatment •• Weight management
•• Lost for words: how to talk to after cancer treatment
someone with cancer •• Work and cancer
•• Making treatment decisions •• Working while caring
•• Managing the late effects of for someone with cancer
pelvic radiotherapy in women
99
Understanding womb (endometrial) cancer

Audio resources Macmillan Cancer Support


www.macmillan.org.uk
Our high-quality audio Find out more about living
materials, based on our with the practical, emotional
variety of booklets, include and financial effects of
information about cancer cancer. Our website contains
types, different treatments expert, accurate, up-to-date
and about living with cancer. information about cancer and
its treatments, including:
To order your free CD, •• all the information from
visit be.macmillan.org.uk our 100+ booklets and
or call 0808 808 00 00. 350+ fact sheets
Macmillan videos •• videos featuring
real-life stories from
There are many videos people affected by cancer
on the Macmillan website and information from
featuring real-life stories and medical professionals
information from health and
social care professionals. •• how Macmillan can help,
the services we offer and
Useful websites where to get support
•• how to contact our cancer
A lot of information about support specialists,
cancer is available on the including an email form
internet. Some websites to send your questions
are excellent; others have
misleading or out-of-date •• local support groups
information. The sites listed search, links to other
here are considered by nurses cancer organisations
and doctors to contain and a directory of
accurate information and information materials
are regularly updated.

100
Further resources

•• a huge online community www.nhs.uk


of people affected by (NHS Choices)
cancer sharing their The country’s biggest health
experiences, advice website, which has all the
and support. information you need to make
decisions about your health.
www.cancer.gov
(National Cancer www.nhsdirect.nhs.uk
Institute – National (NHS Direct Online)
Institute of Health – USA) NHS health information
Gives comprehensive site for England – covers
information on cancer all aspects of health,
and treatments. illness and treatments.

www.cancer.org www.nhs24.com
(American Cancer Society) (NHS 24 in Scotland)
Nationwide community-based
health organisation dedicated www.nhsdirect.wales.
to eliminating cancer. nhs.uk
(NHS Direct Wales)
www.cancerhelp.org.uk
(Cancer Research UK) www.n-i.nhs.uk
Contains patient information (Health and Social Care
on all types of cancer and in Northern Ireland)
has a clinical trials database.
www.patient.co.uk
www.healthtalkonline.org (Patient UK)
www.youthhealthtalk.org Has evidence-based
(site for young people) information leaflets on
Both websites contain a variety of medical and
information about some health topics.
cancers and have video and
audio clips of people talking www.riprap.org.uk
about their experiences. (Riprap)
A website for teenagers who
have a parent with cancer.
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Understanding womb (endometrial) cancer

Disclaimer

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.

Thanks

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:
Dr Elly Brockbank, Subspecialty Fellow in Gynae-Oncology; Dr Mary McCormack,
Consultant Clinical Oncologist; Claire Parkinson, Macmillan Gynaecology Nurse
Specialist; and the people affected by cancer who reviewed this edition.

Sources
Adjuvant chemotherapy for endometrial cancer after hysterectomy.
Cochrane Review. 2011.
Barakat R et al. Principles and Practice of Gynaecologic Oncology. 5th edition.
2009. Lippincott Williams & Wilkins.
Chemotherapy for advanced, recurrent or metastatic endometrial carcinoma.
Cochrane Review. 2009.
Endometrial cancer. ESMO Clinical Practice Guidelines for diagnosis,
treatment and follow-up. 2011.
Cochrane summaries. The effect of hormonal treatment on advanced or recurrent
endometrial cancer. http://summaries.cochrane.org/CD007926/the-effect-of-
hormonal-treatment-on-advanced-or-recurrent-endometrial-cancer (accessed 31
Jul 2012).
Referral guidelines for suspected cancer. National Institute for Health and Clinical
Excellence. 2005.

102
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
hElP with
cAncer

Share your cancer experience


Support people living with cancer by telling your story,
online, in the media or face to face.
Campaign for change
We need your help to make sure everyone gets the right support.
Take an action, big or small, for better cancer care.
Help someone in your community
A lift to an appointment. Help with the shopping.
Or just a cup of tea and a chat. Could you lend a hand?
Raise money
Whatever you like doing you can raise money to help.
Take part in one of our events or create your own.
Give money
Big or small, every penny helps.
To make a one-off donation see over.

Call us to find out more


0300 1000 200
macmillan.org.uk/getinvolved
Please fill in your Don’t let the taxman
personal details keep your money
Mr/Mrs/Miss/Other Do you pay tax? If so, your gift will
be worth 25% more to us – at no
Name
extra cost to you. All you have to
Surname do is tick the box below, and the
Address tax office will give 25p for every
pound you give.

Postcode I am a UK taxpayer and I


Phone would like Macmillan Cancer
Support to treat all donations
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Please accept my gift of £ prior to this year, and all
donations I make in the future,
(Please delete as appropriate) as Gift Aid donations, until I
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OR debit my: tax year, that is at least equal to the tax that
Visa / MasterCard / CAF Charity Charities & CASCs I donate to will reclaim on
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Macmillan Cancer Support will reclaim 25p of
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Macmillan Cancer Support and our trading
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If you’d rather donate online go to macmillan.org.uk/donate

Please cut out this form and return it in an envelope (no stamp required) to:
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27530
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.
The community supporting you online, any time.
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?


Call free on 0808 808 00 00 (Mon–Fri, 9am–8pm)
Alternatively, visit macmillan.org.uk

Hard of hearing? Use textphone


0808 808 0121, or Text Relay.
Non-English speaker? Interpreters available.
© Macmillan Cancer Support, 2012. 9th edition. MAC11656.
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.

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