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A practical guide to understanding cancer
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About this booklet 1
About this booklet
This booklet is about cancer of the womb (uterus).
Womb cancer usually starts in the lining of the
womb (the endometrium) so it’s 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 116–121 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.
Some of their names have been changed.
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.
Contents 3
Contents
The womb and womb cancer
5
Diagnosing womb cancer
19
Treating womb cancer
31
After your treatment
75
Your feelings and relationships
93
Work and financial support
103
Further information
109
The womb and
womb cancer
What is cancer?
6
The lymphatic system
8
The womb
10
About womb cancer 11
Risk factors and causes
13
6 Understanding womb (endometrial) cancer
What is cancer?
Cancer starts in cells in our body. Cells are tiny building blocks
that make up the organs and tissues of our bodies. They divide to
make new cells in a controlled way. This is how our bodies grow,
heal and repair. Cells receive signals from the body telling them
when to divide and grow and when to stop growing. When a cell
is no longer needed or can’t be repaired, it gets a signal to stop
working and die.
Cancer develops when the normal workings of a cell go wrong
and the cell becomes abnormal. The abnormal cell keeps dividing
making more and more abnormal cells. These eventually form a
lump (tumour). Not all lumps are cancerous. Doctors can tell if a
lump is cancerous by removing a small sample of tissue or cells
from it. This is called a biopsy. The doctors examine the sample
under a microscope to look for cancer cells.
Normal cells
Cells forming a tumour
The womb and womb cancer 7
A lump that is not cancerous (benign) may grow but cannot
spread to anywhere else in the body. It usually only causes
problems if it puts pressure on nearby organs.
A lump that is cancer (malignant) can grow into nearby tissue.
Sometimes, cancer cells spread from where the cancer first
started (the primary site) to other parts of the body. They can
travel through the blood or lymphatic system (see page 9).
When the cells reach another part of the body, they may begin
to grow and form another tumour. This is called a secondary
cancer or a metastasis.
8 Understanding womb (endometrial) cancer
The lymphatic system
The lymphatic system helps to protect us from infection and
disease. It also drains lymph fluid from the tissues of the body
before returning it to the blood. The lymphatic system is made
up of fine tubes called lymphatic vessels that connect to groups
of lymph nodes throughout the body.
Lymph nodes (sometimes called lymph glands) are small and
bean-shaped. They filter bacteria (germs) and disease from the
lymph fluid. If you have an infection, for example a sore throat,
the lymph nodes close by often swell as they fight it.
Sometimes, cancer can spread through the lymphatic system.
If the cancer cells spread outside of the womb, they are most
likely to affect the pelvic lymph nodes.
The womb and womb cancer 9
Pelvic lymph nodes
Lymph
nodes
in the
pelvis
Bladder
Urethra
Lymph
nodes
in the
groin
Womb
Cervix
Vagina
10 Understanding womb (endometrial) cancer
The womb
The womb (uterus) is a muscular, pear-shaped organ where a
baby is carried during pregnancy. It is low in the pelvis (the area
between the hips) and is supported by the pelvic floor muscles.
The womb (uterus) and reproductive organs
Ovary
Bladder
Fallopian
tube
Womb
(uterus)
Cervix
Vagina
The ovaries, where eggs are produced, are on either side of the
womb. The fallopian tubes connect the womb to the ovaries.
The lining of the womb is called the endometrium and the lower
part of the womb is called the cervix.
The cervix is at 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.
Our booklet Understanding cervical cancer explains more.
The womb and womb cancer 11
About womb cancer
About 8,500 women a year in the UK are diagnosed with womb
cancer. It is more common in women over 40 and rare in women
under 35. Most womb cancers start in the lining of the womb
(the endometrium). These cancers are usually diagnosed early
and treated successfully. Womb cancer isn’t infectious and you
can’t pass it on to anyone else.
Types of womb cancer
About 95% (95 in 100) of womb cancers develop from glandular
tissue in the 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 of womb cancer
aren’t thought to be linked with oestrogen (see pages 13–14).
They also tend to grow more quickly.
Uterine sarcoma is another type of cancer that starts
in the muscle of the womb. It’s explained in our
booklet Understanding soft tissue sarcomas.
The womb and womb cancer 13
Risk factors and causes
The exact cause of womb cancer isn’t known. But there are
certain things that can increase a woman’s risk of developing it.
These are called risk factors. Having a risk factor doesn’t mean
you will get cancer, and not having a risk factor doesn’t mean that
you won’t get it. Most risk factors are linked to how much of the
hormone oestrogen the womb lining is exposed to.
Age
The risk of womb cancer increases with age.
Hormonal factors
Before the menopause, the ovaries produce the hormones
oestrogen and progesterone. These help to control your periods.
After the menopause, the ovaries no longer produce hormones,
but women still produce some oestrogen in their body fat.
A woman’s exposure to oestrogen and how this is balanced with
progesterone, affect the risk of womb cancer. When there is too
much oestrogen without progesterone to balance it, the risk of
womb cancer is increased.
Longer exposure to oestrogen can affect your risk of womb
cancer. Factors that influence this are:
•• Starting your periods early (before 12).
•• Having a late menopause (after 55).
•• Having longer periods.
14 Understanding womb (endometrial) cancer
•• 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 (Livial®). Oestrogen-only HRT
is usually only given to women who have had an operation to
remove their womb (a hysterectomy).
•• Not having children, or being unable to have children.
Oestrogen in the body is low during pregnancy, and the level of
progesterone is high.
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 very
overweight (obese). There’s also some evidence that being less
physically active can increase womb cancer risk.
Genetic factors (family history)
A very small number of womb cancers may be caused by changes
to a particular gene. 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 link. Close relatives are
parents, children, sisters and brothers.
The womb and womb cancer 15
If you’re worried about a family history of cancer, speak to your
cancer doctor or GP. They can decide if you should be referred
to a family cancer clinic.
There are some genetic conditions that can increase the risk
of womb cancer. Women with Lynch syndrome, also known
as hereditary non-polyposis colorectal cancer (HNPCC),
have an altered gene that increases the risk of bowel cancer
and womb cancer. Women with 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 information about
Lynch syndrome.
Women with a rare genetic condition called Cowden syndrome
have an increased risk of benign (non-cancerous) tumours and
also some cancers. This includes womb cancer, but the increase
in risk is small.
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.
Always tell your doctor if you are taking tamoxifen and have
any unusual vaginal bleeding.
16 Understanding womb (endometrial) cancer
Other medical conditions
Some other medical conditions may cause an increased risk
of womb cancer.
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 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 where 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.
Uncommon ovarian cancers
Some types of ovarian cancers called granulosa and theca
cell tumours can produce oestrogen. This increases the risk
of womb cancer.
We can’t control many of these risk factors. But keeping to
a healthy weight and being more physically active may help
reduce the risk of womb cancer.
Diagnosing
womb cancer
Symptoms20
How it is diagnosed
21
Staging27
Grading29
20 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, which can also cause unusual vaginal bleeding.
Bleeding is usually the first sign 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 recently,
it’s important to have any bleeding checked. A routine cervical
screening test only takes cells from the neck of the womb (the
cervix), so it only occasionally picks up womb cancer.
Diagnosing womb cancer 21
How it is diagnosed
Usually, you begin by seeing your GP, 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 may arrange other tests or refer you directly to a
gynaecologist – a doctor who specialises in treating conditions
of a woman’s reproductive system.
You will usually be referred urgently (within two weeks) for a clinic
appointment 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.
22 Understanding womb (endometrial) cancer
The gynaecologist will examine you and carry out an internal
pelvic examination. You may also have a smear test taken if you
haven’t had one recently. After this, they’ll explain any more tests
you need to have.
Blood tests
Samples of your blood may be taken to check your general
health, the number of blood cells in your blood (blood count)
and to see how well your kidneys and liver 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 your womb
lining. A doctor called a pathologist will look at the sample
under a microscope. If there are cancer cells present, the biopsy
results will also usually identify the type of womb cancer it is
(see page 11). Biopsies can be done in several different ways.
Aspiration biopsy
You can have this done at your clinic appointment and you won’t
usually need any anaesthetic. Some people may need to have it
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 a fine tube (called a
pipelle) through the cervix into your womb.
Diagnosing womb cancer 23
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.
Outpatient hysteroscopy
You can have this test in an outpatient clinic. Your doctor or nurse
will pass a very thin flexible tube (hysteroscope) with a light on the
end through the vagina and cervix into your womb.
They may place a speculum in your vagina, and inject a small
amount of anaesthetic into the cervix. This helps to open it up
a little and allows the hysteroscope into your womb. You may
be advised to take some painkillers an hour before the test.
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 or nurse to get a better picture. A sample of tissue (biopsy)
from the womb lining is taken.
After the test, you’ll have some vaginal bleeding and period-like
cramps for a couple of days. You can take mild painkillers to
help with this.
Hysteroscopy dilatation and curettage (D&C)
This small operation is done under a general anaesthetic.
A hysteroscopy (see above) is usually done at the same time
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 take some tissue
from the womb lining. Afterwards, you’ll probably have periodlike pains and some vaginal bleeding for a couple of days.
24 Understanding womb (endometrial) cancer
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 27–28).
CT (computerised tomography) scan
A CT scan takes a series of x-rays, which build up a threedimensional picture of the inside of the body. The scan takes 10–
30 minutes and is painless. It uses a small amount of radiation,
which is very unlikely to harm you and will not harm anyone you
come into contact with. You will be asked not to eat or drink for at
least four hours before the scan.
Someone having a CT scan
Diagnosing womb cancer 25
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.
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. This will ask about any metal implants you may have,
such as a pacemaker.
You should also tell your doctor if you’ve ever worked with
metal or in the metal industry as very tiny fragments of metal
can sometimes lodge in the body. If you do have any metal in
your body, it’s likely that you won’t be able to have an MRI scan.
In this situation, another type of scan can be used.
Before the scan, you’ll be asked to remove any metal belongings
including jewellery. Some people are given an injection of dye
into a vein in the arm, which doesn’t usually cause discomfort.
This is called a contrast medium and can help the images from
the scan to show up more clearly.
During the test, you’ll lie very still on a couch inside a long
cylinder (tube) for about 30 minutes. It’s painless but can be
slightly uncomfortable, and some people feel a bit claustrophobic.
It’s also noisy, but you’ll be given earplugs or headphones.
You can hear, and speak to, the person operating the scanner.
26 Understanding womb (endometrial) cancer
PET/CT scan
This is a combination of a CT scan (see page 24) 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
This uses x-rays to take a picture of your chest, to check your
lungs and heart.
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 specialist nurse or one of the organisations
listed on pages 116–119, can also provide support. You can also
talk things over with one of our cancer support specialists on
0808 808 00 00.
Diagnosing womb cancer 27
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 pages 38–47) and when the results of
all your tests are ready. Womb cancer is divided into four main
stages. Some of these stages 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.
28 Understanding womb (endometrial) cancer
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).
•• Stage 3C – The cancer has spread to the pelvic lymph nodes
and/or to the lymph nodes at the back of the tummy.
Stage 4
The cancer has spread to other organs in the body:
•• 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 your doctor or nurse may use to describe the
cancer are:
•• 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.
•• Recurrent cancer – This refers to a cancer that has come back
after it was first treated.
Diagnosing womb cancer 29
Grading
Grading is about how the cancer cells look under the microscope
compared with normal cells. Knowing the grade helps your doctor
to decide if you need further treatment after surgery.
Grade 1 (low-grade or well-differentiated) – The cancer cells
look similar to normal cells and usually grow slowly and are less
likely to spread.
Grade 2 (moderate-or intermediate-grade) – The cancer cells
look more abnormal and are slightly faster growing
Grade 3 (high-grade or poorly differentiated) – The cancer
cells look very different from normal cells and grow more quickly.
‘It can sometimes take a long time for things to sink in
and you are bound to have your ups and downs.’
Kaz
Treating
womb cancer
Treatment overview
32
Surgery38
Radiotherapy 48
Chemotherapy62
Hormonal treatment
70
Research – clinical trials
71
32 Understanding womb (endometrial) cancer
Treatment overview
The main treatment for womb cancer is an operation to remove
the womb (hysterectomy), 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 may be treated
with radiotherapy or drugs 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 48–61) to the pelvic
area. Some women are given chemotherapy (see pages 62–69)
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 71–73).
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.
Treating womb cancer 33
Chemotherapy can help to shrink and control the cancer.
It can also help to relieve symptoms.
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 (MDT)
In most hospitals, a team of specialists will talk to you about the
treatment they feel is best for your situation. This multidisciplinary
team (MDT) will include:
•• a surgeon who specialises in gynaecological cancers
(gynaecological oncologist)
•• a medical oncologist (chemotherapy specialist)
•• a clinical oncologist (radiotherapy and
chemotherapy specialist)
•• a gynae-oncology nurse specialist
•• radiologists who help to analyse x-rays and scans
•• pathologists who advise on the type and extent of the cancer.
It may also include other healthcare professionals, such as a
dietitian, physiotherapist, occupational therapist (OT), psychologist
or counsellor.
The MDT will take a number of factors into account when
advising you on the best course of action. These will include your
general health, the type and size of the tumour, and whether it
has begun to spread.
34 Understanding womb (endometrial) cancer
The benefits and disadvantages of treatment
Many people are frightened at 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 upon 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 benefit.
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.
Treating womb cancer 35
Second opinion
Your multidisciplinary team (MDT) uses national treatment
guidelines to decide the most suitable treatment for you.
Even so, you may want another medical opinion. If you feel it
will be helpful, you can ask either your specialist or GP to refer
you to another specialist for a second opinion. Getting a second
opinion may delay the start of your treatment, so you and your
doctor need to be confident that it will give you useful information.
If you do go for a second opinion, it may be a good idea to
take a relative or friend with you, and have a list of questions
ready, so that you can make sure your concerns are covered
during the discussion.
Giving your consent
Before you have any treatment, your doctor will explain its
aims. They will usually ask you to sign a form saying that you
give permission (consent) for the hospital staff to give you the
treatment. No medical treatment can be given without your
consent, and before you are asked to sign the form you should
be given full information about:
•• the type and extent of the treatment
•• its advantages and disadvantages
•• any significant risks or side effects
•• any other treatments that may be available.
If you don’t understand what you’ve been told, let the staff know
straight away, so they can explain again. Some cancer treatments
are complex, so it’s not unusual to need repeated explanations.
36 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 are also free to choose not to have the treatment. The staff
can explain what may happen if you don’t have it. It’s essential
to tell a doctor or the nurse in charge, so they can record your
decision in your medical notes. You don’t have to give a reason
for not wanting treatment, but it can help to let the staff know
your concerns so they can give you the best advice.
‘Making decisions about treatment
was so hard. My advice is to talk
about it as much as you can, and ask
all your questions no matter how silly
you think they are.’
Trish
Treating womb cancer 37
38 Understanding womb (endometrial) cancer
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 pages 27–28) of the cancer.
Removing the womb (hysterectomy)
Usually, you will have a total hysterectomy. This involves removing
the womb and the cervix. The fallopian tubes and both ovaries
are also removed (called a bilateral salpingo-oopherectomy).
A hysterectomy can be carried out in different ways. Your surgeon
will advise you on which type of hysterectomy is suitable for you.
Laparoscopic hysterectomy (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). This allows the surgeon to see pictures
on a screen.
The womb and ovaries are removed through the vagina and then
the top of the vagina is sewn up. Women recover faster from this
type of hysterectomy and it involves a shorter stay in hospital.
But it’s not suitable for everyone.
Treating womb cancer 39
Abdominal hysterectomy
The surgeon makes a cut (incision) across your tummy above the
pubic hair, or sometimes downwards from your belly button to the
pubic hair.
We have more information about different types
of hysterectomy.
What else may be done
During your operation, the surgeon will check organs nearby to
find out more about the stage (see page 27–28) of the cancer.
This includes putting some fluid into your tummy (abdomen),
then removing it so that it can be tested for cancer cells.
Doctors sometimes call this abdominal or peritoneal washing.
Removing lymph nodes
You may have some or all of the lymph nodes (see page 9)
close to the womb (pelvic nodes) and at the back of the tummy
(para-aortic nodes) removed. This allows them to be checked for
cancer cells. Your surgeon will talk to you about the benefits and
disadvantages of removing lymph nodes.
Knowing if the cancer has spread to the lymph nodes helps your
specialist decide if you need further treatment.
40 Understanding womb (endometrial) cancer
When the cancer has spread outside the womb
If the cancer has spread to organs close by, such as the bladder
or bowel, you’ll usually have an operation to remove as much
of the cancer as possible. 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 support specialists on
0808 808 00 00 for more information on
pelvic exenteration.
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. This would
only be done if the cancer elsewhere in the body is under control.
Treating womb cancer 41
Before your operation
Before your operation, you will 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.
Make sure you tell them any questions or concerns that you have.
You’ll usually be admitted to hospital the morning of your
operation. The doctor who gives you your anaesthetic
(the anaesthetist) will normally visit you.
You’ll be given special elastic stockings (TED stockings) to wear
during and after the operation to prevent blood clots forming
in your legs. 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. It will also help your wound to heal
after the operation.
Your GP can give you advice and you may find it
helpful to read our booklet on Giving up smoking.
Some hospitals follow an enhanced recovery programme.
This aims to reduce the time you spend in hospital, speed up
your recovery and involve you more in your own care.
For example, you may be given information about diet and
exercise before surgery, and any arrangements needed for
you to go home may be put in place. Your doctor will tell
you if an enhanced recovery programme is suitable for you
and if it’s available.
42 Understanding womb (endometrial) cancer
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.
Back in the ward
After your operation, you’ll be given fluids into a vein in your
hand or arm. This is called a drip or an intravenous infusion.
Once you’re eating and drinking normally again, it’s taken out.
You’ll usually have a tube (catheter), which is 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 people it may
need to stay in for longer. If you have a wound drain (a fine tube
in the wound draining fluid into a small bottle), it’s usually taken
out after a few days.
Treating womb cancer 43
Pain
After your operation, you’ll have some pain and discomfort,
which should 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 painkillers 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.
You 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. Tell your nurse if you have any problems going
to the toilet.
44 Understanding womb (endometrial) cancer
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 signs of infection.
‘If something doesn’t feel right after your operation,
go to your doctor immediately. They will be more
than happy to see and help you. It’s better to catch
something like an infection early, than let it get hold.’
Joan
Getting moving
After your operation, you’ll be encouraged to start moving about
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.
Treating womb cancer 45
Going home
If you’ve had laparoscopic (keyhole) surgery, you can usually go
home 1–4 days after your operation. You may be ready to go
home between 2–8 days after an abdominal hysterectomy. 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. They will examine you and check the
wound. You’ll also be given information about the results of the
operation and advised if you need further treatment.
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.
‘It’s really important to not overdo
things and allow yourself time to
heal. I took things slowly, followed the
advice from health professionals about
not lifting anything heavy and took
gentle exercise everyday. To start with,
that was a walk to the end of the road
and I found that very quickly I built up
my strength.’
Daloni
46 Understanding womb (endometrial) cancer
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. Try to 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.
It’s probably a good idea to wait for a few weeks before driving
again. Some insurance policies give specific time limits, so 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. This allows the wound to heal
properly. After that, you’ll be able to return 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 78–82.
Treating womb cancer 47
Early menopause
For younger women who haven’t reached the menopause,
a hysterectomy and removing the ovaries will cause the
menopause. This means you will get menopausal symptoms.
You can read more about this on pages 79–80.
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 page 88.
Getting support
It’s not unusual to feel anxious after surgery. You may feel
your recovery is taking longer than you expected or you may
be worried about having further treatment. It’s often helpful
to talk about your feelings with your family and friends.
Your nurse specialist, our cancer support specialists or some of the
organisations listed on pages 116–119 can also give you support.
You can contact our cancer support specialists on 0808 808 00
00 to talk, or for information about local support groups.
48 Understanding womb (endometrial) cancer
Radiotherapy
Radiotherapy uses high-energy x-rays to destroy 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, or you have
decided against having surgery)
•• 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.
Treating womb cancer 49
50 Understanding womb (endometrial) cancer
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 will look 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 pages 62–69).
This is called chemoradiation.
Your specialist will talk to you about 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.
Treating womb cancer 51
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 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.
External radiotherapy
The treatment is given in the hospital radiotherapy department
as a series of short daily sessions. Each treatment takes 10–15
minutes. They are usually given from Monday–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 is safe for you to be with other
people, including children, after your treatment.
52 Understanding womb (endometrial) cancer
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 some small marks made on your skin to help
the radiographer (who gives you your treatment) position
you accurately and to show where the rays will be directed.
These marks must stay visible throughout your treatment, and
permanent marks (like tiny tattoos) are usually used. These are
extremely 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 will have to lie still
for a few minutes during the treatment.
Radiotherapy planning
Treating womb cancer 53
54 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 (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 tubes. 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 tubes 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
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.
Treating womb cancer 55
High-dose rate (fast treatment)
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 2–4 treatments.
You can usually have it as an outpatient.
Low-dose rate (slow-treatment)
Slow treatment is only rarely used. It is given in the same way as
the fast treatment, but much more slowly. It can be given over
12–24 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.
56 Understanding womb (endometrial) cancer
You’ll need to need to stay lying down in bed while the
applicators are in place. This helps them 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 applicators
back into the machine to allow nurses or doctors to come in
without being exposed to radiation. The nurses will regularly
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 visitors (except pregnant women or children),
but only for a short time so that you can continue 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 discuss 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, tell the nurse or doctor 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.
Treating womb cancer 57
58 Understanding womb (endometrial) cancer
Side effects of radiotherapy
You may develop side effects over the course of your treatment.
These usually disappear 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.
There are often things that can be done to help.
It's not unusual to feel worse before you start to feel better.
Some people can find this a very difficult time and they may feel
low or even depressed for a while. The clinical oncologist can
advise you about what to expect.
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 wash 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.
Treating womb cancer 59
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.
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 at least two litres (three pints) of fluid a day
will also help.
‘It’s important to realise that side effects
vary from person to person. I had some
diarrhoea, but not continuous, and
some nausea. This was managed with
medication. Get plenty of rest and drink
plenty of water.’
Mary
60 Understanding womb (endometrial) cancer
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 more information about the
possible side effects of pelvic radiotherapy.
Possible late effects
Radiotherapy to the pelvic area can sometimes cause longterm 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.
Radiotherapy to the pelvic area can cause vaginal dryness and
narrow the vagina. This 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 81–82
for more information.
Treating womb cancer 61
Some women may develop 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 tell your cancer doctor or specialist
nurse 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 page 88.
We have a booklet called Managing the late effects
of pelvic radiotherapy in women.
62 Understanding womb (endometrial) cancer
Chemotherapy
Chemotherapy uses 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
•• 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.
We have a booklet called Understanding
chemotherapy.
Treating womb cancer 63
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.
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).
‘I found I was cold during the chemo sessions so I
treated myself to a big wrap to keep myself warm.
The hospital will have blankets, but this was my luxury.’
Jackie
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.
64 Understanding womb (endometrial) cancer
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.
We have information 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.
Treating womb cancer 65
Risk of infection
Chemotherapy can reduce the number of white blood cells,
which help fight infection. If the number of your white blood
cells is low, you'll be more prone to infections. A low white
blood cell count is called neutropenia.
Always contact the hospital immediately on the 24-hour contact
number you've been given if:
•• You develop a high temperature – this may be over 37.5°C
(99.5°F) or over 38°C (100.4°F) depending on the hospital's
policy. Follow the advice that you have been given by your
chemotherapy team.
•• You suddenly feel unwell, even with a normal temperature.
•• You feel shivery and shaky.
•• You have any symptoms of an infection such as a cold,
sore throat, cough, passing urine frequently, diarrhoea.
If necessary, you'll be given antibiotics to treat any infection.
You'll have a blood test before each cycle of chemotherapy
to make sure your white blood cells have recovered.
Occasionally, your treatment may need to be delayed if the
number of your white blood cells is still low.
Anaemia
Chemotherapy may reduce the number of red bloods cells
(haemoglobin) in your blood. A low level of red blood cells is
known as anaemia, which can make you feel very tired and
lethargic. You may also become breathless.
Anaemia can be treated with blood tranfusions. This should help
you to feel more energetic and ease the breathlessness.
66 Understanding womb (endometrial) cancer
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 (nauseated)
or possibly be sick (vomit). Your cancer specialist will prescribe
anti-sickness (anti-emetic) drugs to prevent this. Tell your doctor
or nurse if your anti-sickness drugs are not helping as there are
several different types you can take. We have information about
nausea and vomiting.
Tiredness (fatigue)
You’re likely to become tired and need to take things slowly.
Try to pace yourself and save your energy for things that you want
or need to do. Balance rest with some physical activity – even just
going for short walks will help increase your energy levels.
Our booklet Coping with fatigue has more
helpful tips.
Poor appetite
Some people lose their appetite while they’re having
chemotherapy. This can be mild and may only last a few
days. If you don’t feel like eating during treatment, you could
try replacing some meals with nutritious drinks or a soft diet.
If it doesn’t improve, you can ask to see a dietitian.
Treating womb cancer 67
68 Understanding womb (endometrial) cancer
Sore mouth
Your mouth may become sore (or dry), or you may notice small
ulcers during treatment. Some people find that sucking on ice
may be soothing. Drinking plenty of fluids, and cleaning your
teeth regularly and gently with a soft toothbrush, can help to
reduce the risk of this happening. Tell your nurse or doctor if you
have any of these problems, as they can prescribe mouthwashes
and medicine to prevent or clear mouth infections.
Diarrhoea
Some chemotherapy drugs can cause diarrhoea. This often starts
several days after treatment. If you’re taking chemotherapy tablets
or capsules at home, it's important to let your doctor or nurse
know if you have diarrhoea as your treatment may need to be
interrupted. Medicine can be prescribed to help. It’s important to
drink plenty of fluids if you have diarrhoea.
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
Some chemotherapy drugs can affect the nerves in your hands
or feet. This can cause tingling or numbness, a sensation of pins
and needles, or muscle weakness (called peripheral neuropathy).
It’s important to let your doctor know if this happens. They may
need to change the chemotherapy drug if it gets worse.
Usually, peripheral neuropathy gradually gets better when
chemotherapy is over but sometimes it’s permanent.
Treating womb cancer 69
Allergic reaction
Paclitaxel 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. However, most
clots can usually be successfully treated with drugs to thin the
blood. Your doctor or nurse can give you more information
about blood clots.
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.
70 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.
Treating womb cancer 71
Research – clinical trials
Cancer research trials are carried out to try to find new and better
treatments for cancer. Trials that are carried out on patients are
known as clinical trials. These may aim to:
•• test new treatments, such as new chemotherapy drugs or
targeted therapies
•• look at new combinations of existing treatments, or change the
way they are given to make them more effective and reduce
side effects
•• compare the effectiveness of drugs used to control symptoms
•• find out how cancer treatments work
•• find out which treatments are the most cost-effective.
Trials are the only reliable way to find out if a different type of
surgery, chemotherapy, hormone therapy, radiotherapy, or other
treatment is better than what is already available.
72 Understanding womb (endometrial) cancer
Taking part in a trial
You may be asked to take part in a treatment research trial.
There can be many benefits in 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.
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.
Treating womb cancer 73
Blood and tumour samples
Blood and tumour samples may be taken to help make the right
diagnosis. You may be asked for your permission to use some
of your samples for research into cancer. If you take part in a
trial you may also give other samples, which may be frozen and
stored for future use when new research techniques become
available. Your name will be removed from the samples so you
can’t be identified.
The research may be carried out at the hospital where you
are treated, or at another one. This type of research takes a
long time, and results may not be available for many years.
The samples will be used to increase knowledge about the
causes of cancer and its treatment, which will hopefully
improve the outlook for future patients.
Our website macmillan.org.uk/clinicaltrials has
details of the databases you can search to look at
trials for womb cancer.
After your
treatment
Follow-up76
Sex and fertility
78
Well-being after treatment 83
Who can help?
90
76 Understanding womb (endometrial) cancer
Follow-up
After your treatment, you’ll have regular check-ups, including 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
•• 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. It can help to get support from family, friends or
one of the organisations listed on pages 116–119.
You can also contact the Macmillan Support Line on
0808 808 00 00.
After your treatment 77
78 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).
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 should gradually improve 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.
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.
After your treatment 79
Tell your doctor or nurse 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 116).
Our booklet Sexuality and cancer – information for
women has more detailed information.
Menopausal symptoms
If you haven’t been through the menopause, a hysterectomy
that involves removing your ovaries will cause the menopause
straight away.
Women who have radiotherapy without any surgery will also
have their menopause. This is because radiotherapy stops
the ovaries from working. Some common symptoms of the
menopause include:
Hot flushes and sweats
Low doses of antidepressant drugs can be prescribed to
reduce flushes.
Vaginal dryness
Non-hormonal creams and water-based lubricants help reduce
discomfort during sex.
80 Understanding womb (endometrial) cancer
Low sex drive
Vaginal changes (see opposite page) can reduce your sex drive.
However, getting 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.
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.
A number of organisations, including the Daisy Network
(see page 117), provide support to women going through
the menopause.
After your treatment 81
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. Don’t feel
embarassed – they are used to discussing these issues.
Vaginal dilators
Your hospital team may recommend you use vaginal dilators to
try to prevent the vagina from narrowing. Dilators are tamponshaped 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, a vibrator or
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.
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.
82 Understanding womb (endometrial) cancer
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. Let your
doctor know if you have symptoms such as itching or soreness.
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, talk to 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 to have a child through surrogacy in the future.
Surrogacy is when another woman carries a baby for you.
There’s more detailed information in our leaflet
Cancer treatment and fertility – information
for women.
After your treatment 83
Well-being 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 page 89). 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.
84 Understanding womb (endometrial) cancer
Lifestyle changes
After treatment, some women choose to make positive lifestyle
changes. Even if you had a healthy lifestyle before being
diagnosed with womb 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. They can tell you what your ideal
weight is.
Our booklet Weight management after cancer
treatment has some helpful tips.
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
•• be more physically active.
After your treatment 85
86 Understanding womb (endometrial) cancer
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.
Be physically active
Being physically active helps keep your weight healthy,
and reduces stress, 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 professional trainers.
We have a booklet called Physical activity and cancer
treatment, which has more information.
After your treatment 87
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.
These recommend that women drink fewer than two units of
alcohol a day, or fewer than 14 units a week.
88 Understanding womb (endometrial) cancer
Reducing lymphoedema risk
There are things you can do to reduce your lymphoedema risk.
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.
•• Keep physically active and avoid standing for too long in
one position.
Our booklet Understanding lymphoedema has more
detailed information.
After your treatment 89
Emotional support
It’s common to feel a range of emotions after cancer treatment
(see pages 94–97). 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, tell your doctor or nurse.
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 services in your area.
‘Just because the treatment is successful doesn’t mean
you can just forget and move on easily. Sometimes
it can be easier to talk to someone removed from
the situation.’
Sue
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
90 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 services in your area.
After your treatment 91
Your
feelings and
relationships
Your feelings
94
What you can do
98
If you are a relative or friend
99
Talking to children
101
94 Understanding womb (endometrial) cancer
Your feelings
It’s common to feel overwhelmed by different feelings when
you’re told that you have cancer. We talk about some of these
here. Partners, family and friends may also have some of the
same feelings.
You might have different reactions to the ones we describe here.
There is no right or wrong way to feel. You’ll cope with things
in your own way. Talking to people close to you or other people
affected by cancer can often help.
Shock and disbelief
You may find it hard to believe it when your doctor tells you that
you have cancer. It’s common to feel shocked and numb. You may
not be able to take in much information and find that you keep
asking the same questions again and again.
At first, you might find it hard to talk to family and friends about
the cancer. This usually gets easier as the shock wears off and it
becomes more real to you. You may find you can’t think or talk
about anything but the cancer. This is because your mind is trying
to process what you’re going through.
Fear and anxiety
People can be very anxious or frightened about whether treatment
will work and what will happen in the future. This uncertainty can
be one of the hardest things to cope with. It can help to try to
focus on what you can control.
Your feelings and relationships 95
You may want to find out more about the cancer, its treatment
and how to manage side effects. It can also help to talk about
your feelings and to take time to do things that are important to
you and that you enjoy.
Doctors often know roughly how many people can benefit from
a type of treatment. But they can’t be sure what will happen to an
individual person. Although they may not be able to answer your
questions fully, they can usually talk through any problems with
you and give you some guidance.
Avoidance
Some people cope by not wanting to know very much about the
cancer and by not talking about it. If you feel like this, let you
family and friends know that you don’t want to talk about it right
now. You can also tell your doctor if there are things you don’t
want to know or talk about yet.
Occasionally, this avoidance can be extreme. Some people may
not believe that they have cancer. This is sometimes called being
in denial. It may stop them making decisions about treatment.
If this happens, it’s very important for them to get help from
their doctor.
Sometimes, avoidance is the other way around. Family and
friends may seem to avoid you and the fact that you have cancer.
They may not want to talk about it or they might change the
subject. This is usually because they are also finding the cancer
difficult to cope with, and they may need support too. Try to let
them know how this makes you feel and that talking openly with
them about your illness will help you.
96 Understanding womb (endometrial) cancer
Anger
You may feel angry about your illness and sometimes resent other
people for being well. These are normal reactions, especially
when you feel frightened, stressed, out of control or unwell.
You may get angry with the people close to you. Let them know
that you are angry at your illness and not at them. Finding ways
to help you relax and reduce stress can help with anger. This can
include talking about or writing down how you feel, gentle
exercise, breathing or relaxation therapy, yoga or meditation.
Guilt and blame
Some people feel guilty or blame themselves or others for the
cancer. You may try to find reasons for why it has happened to
you. Most of the time, it’s impossible to know exactly what has
caused a person’s cancer. Over time, several different factors may
act together to cause a cancer. Doctors don’t fully understand all
of these factors yet. Instead, try to focus on looking after yourself
and getting the help and support you need.
Feeling alone
Some people feel alone because they don’t have enough support.
Family and friends may live far away, have other commitments
or feel uncomfortable because of their own fears about cancer.
Try to let your family and friends know how you feel and how
they could support you more.
If you need more support, you can call the Macmillan Support
Line free on 0808 808 00 00 and talk to one of our cancer
support specialists. Our website can help you find out about
local support groups – visit macmillan.org.uk/supportgroups
Your feelings and relationships 97
You can also talk to other people going through the same thing
on our online community at macmillan.org.uk/community
It’s normal to have times when you want to be left alone to sort
out your feelings. But if you find you’re avoiding people a lot of
the time, then try to talk to your doctor or nurse.
If you need more help
These feelings can be very difficult to cope with and sometimes
people need more help. This happens to lots of people and
doesn’t mean you’re not coping.
If you feel anxious, panicky or sad a lot of the time, or think
you may be depressed, talk to your doctor or nurse. They can
refer you to a doctor or counsellor who can help. They may also
prescribe medicine to help with anxiety or an antidepressant drug.
Our booklet How are you feeling? The emotional
effects of cancer has some suggestions to help you
cope with your feelings.
98 Understanding womb (endometrial) cancer
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, but 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.
Your feelings and relationships 99
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 to just listen
and let them talk when they are ready.
You may our Learn Zone website helpful. There are courses to
help to help friends and family support their loved ones affected
by cancer. Visit macmillan.org.uk/learnzone to find out more.
Our booklet Lost for words – how to talk to someone with
cancer has more suggestions if you have a friend or relative
with cancer.
If you’re looking after a family member or friend with cancer,
you may find our booklet Looking after someone with cancer
helpful. It’s based on carers’ experiences and has lots of practical
tips and information.
We have more information about supporting
someone with cancer at macmillan.org.uk/carers
100 Understanding womb (endometrial) cancer
Your feelings and relationships 101
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 has more infomation. There’s also a video on
our website that may help, at macmillan.org.uk/
talkingtochildren
Work and
financial
support
Work104
Financial help and benefits
105
104 Understanding womb (endometrial) cancer
Work
You may need to take time off work during your treatment and for
a while afterwards. Judging the the best time to go back to work
can be hard. 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 might be useful to talk to your employer about your situation.
They may be able to arrange part-time hours or a 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.
There’s also lots more information at macmillan.
org.uk/work
Work and financial support 105
Financial help and benefits
If you are struggling to cope with the financial effects of cancer,
help is available.
If you cannot work because you are ill, you may be able to get
Statutory Sick Pay. Your employer will pay this for up to 28
weeks of sickness. If you qualify for it, they cannot pay you less.
Before your Statutory Sick Pay ends, or if you do not qualify
for it, check whether you can get Employment and Support
Allowance (ESA). This benefit is for people who cannot work
because they are ill or disabled.
There are two different types of ESA:
•• contributory – you can get this if you have made enough
national insurance contributions
•• income-related – you can get this if your income and savings
are below a certain level.
Since October 2013, a new benefit called Universal Credit has
started replacing income-related ESA in England, Scotland and
Wales. This benefit is for people who are looking for work or on
a low income. Personal Independence Payment (PIP) is a new
benefit for people under 65 who find it difficult to walk or look
after themselves (or both).
You must have had these difficulties for at least three months,
and they should be expected to last for the next nine months.
Since April 2013, PIP has started to replace a similar older benefit
called Disability Living Allowance in England, Scotland and Wales.
106 Understanding womb (endometrial) cancer
Attendance Allowance (AA) is for people aged 65 or over
who find it difficult to look after themselves. You may qualify if
you need help with things like getting out of bed, having a bath
or dressing yourself. You don’t need to have a carer, but you
must have needed care for at least six months.
If you are terminally ill, you can apply for PIP, DLA or AA under
the ‘special rules’. This means your claim will be dealt with quickly
and you will get the benefit you applied for at the highest rate.
Help for carers
Carers Allowance is a weekly benefit that helps people who look
after someone with a lot of care needs. If you don’t qualify for
it, you can apply for Carer’s Credit. This helps you to build up
qualifying years for a State Pension.
More information
The benefits system can be hard to understand, so it’s a good
idea to talk to an experienced welfare rights adviser. You can
speak to one by calling the Macmillan Support Line on 0808 808
00 00. We’ve just listed some benefits here, but there may be
others you can get.
You can find out about state benefits and apply for them online
at gov.uk (England, Wales and Scotland) and nidirect.gov.
uk (Northern Ireland). These websites have information about
financial support, your rights, employment and independent living.
Work and financial support 107
You can also get information about these issues from the relevant
Department for Work and Pensions helplines (see page 120) or
Citizens Advice (see page 120). In Northern Ireland, you can call
the Benefit Enquiry Line Northern Ireland on 0800 220 674.
Our booklet Help with the cost of cancer has more
detailed information. You might also find our video
at macmillan.org.uk/gettingfinancialhelp useful
Insurance
People who have, or have had, cancer may find it hard to get
certain types of insurance, including life and travel insurance.
A financial adviser can help you look at your needs and find the
best deal for you. You can find a financial adviser by contacting
one of the organisations on page 120.
Our booklets Insurance and Getting travel insurance
may also be helpful.
Further
information
About our information
111
Other ways we can help you
113
Other useful organisations
116
110 Understanding womb (endometrial) cancer
Further information 111
About our information
We provide expert, up-to-date information
about cancer. And all our information is free
for everyone.
Order what you need
Other formats
You may want to order more
We also provide information
leaflets or booklets like this one. in different languages and
Visit be.macmillan.org.uk or
formats, including:
call us on 0808 808 00 00.
•• audiobooks
We have booklets on different
cancer types, treatments and
side effects. We also have
information about work,
financial issues, diet, life after
cancer and information for
carers, family and friends.
•• Braille
All of our information is also
available online at macmillan.
org.uk/cancerinformation
There you’ll also find videos
featuring real-life stories
from people affected by
cancer, and information
from health and social
care professionals.
Find out more at macmillan.
org.uk/otherformats
If you’d like us to produce
information in a different
format for you, email us at
cancerinformationteam@
macmillan.org.uk or call
us on 0808 808 00 00.
•• British Sign Language
•• Easy Read booklets
•• large print
•• translations.
112 Understanding womb (endometrial) cancer
Help us improve
our information
We know that the people
who use our information are
the real experts. That’s why
we always involve them in
our work. If you’ve been
affected by cancer, you can
help us improve our
information.
We give you the chance to
comment on a variety of
information including booklets,
leaflets and fact sheets.
If you’d like to hear more
about becoming a reviewer,
email reviewing@macmillan.
org.uk You can get involved
from home whenever you like,
and we don’t ask for any
special skills – just an interest
in our cancer information.
Further information 113
Other ways we can help you
At Macmillan, we know how a cancer
diagnosis can affect everything, and we’re
here to support you. No one should face
cancer alone.
Talk to us
If you or someone you know
is affected by cancer, talking
about how you feel and sharing
your concerns can really help.
Macmillan Support Line
Our free, confidential phone
line is open Monday–Friday,
9am–8pm. Our cancer support
specialists can:
•• help with any medical
questions you have about
your cancer or treatment
•• help you access benefits and
give you financial advice
•• be there to listen if you need
someone to talk to
•• tell you about services that
can help you in your area.
Call us on 0808 808 00 00
or email us via our website,
macmillan.org.uk/talktous
Information centres
Our information and support
centres are based in hospitals,
libraries and mobile centres.
There, you can speak with
someone face to face.
Visit one to get the information
you need, or if you’d like a
private chat, most centres
have a room where you can
speak with someone alone
and in confidence.
Find your nearest centre
at macmillan.org.uk/
informationcentres or call
us on 0808 808 00 00.
114 Understanding womb (endometrial) cancer
Talk to others
Online community
Thousands of people use our
No one knows more about the
online community to make
impact cancer can have on your friends, blog about their
life than those who have been
experiences and join groups
through it themselves. That’s
to meet other people going
why we help to bring people
through the same things.
together in their communities
You can access it any time
and online.
of day or night. Share your
experiences, ask questions,
Support groups
or just read through people’s
Whether you are someone
posts at macmillan.org.uk/
living with cancer or a carer,
community
we can help you find support
The Macmillan
in your local area, so you
healthcare team
can speak face to face with
people who understand.
Our nurses, doctors and
Find out about support groups
other health and social care
in your area by calling us or
professionals give expert care
by visiting macmillan.org.uk/
and support to individuals and
selfhelpandsupport
their families. Call us or ask
your GP, consultant, district
nurse or hospital ward sister
if there are any Macmillan
professionals near you.
‘Everyone is so supportive on the online community,
they know exactly what you’re going through. It can
be fun too. It’s not all just chats about cancer.’
Mal
Further information 115
Help with money worries
Having cancer can bring extra
costs such as hospital parking,
travel fares and higher heating
bills. If you’ve been affected in
this way, we can help.
Financial advice
Our financial guidance
team can give you advice
on mortgages, pensions,
insurance, borrowing
and savings.
Help accessing benefits
Our benefits advisers can
offer advice and information
on benefits, tax credits, grants
and loans. They can help you
work out what financial help you
could be entitled to. They can
also help you complete your
forms and apply for benefits.
Macmillan Grants
Macmillan offers one-off
payments to people with
cancer. A grant can be
for anything from heating
bills or extra clothing to a
much-needed break.
Call us on 0808 808 00 00
to speak to a financial guide or
benefits adviser, or to find out
more about Macmillan Grants.
We can also tell you about
benefits advisers in your area.
Visit macmillan.org.uk/
financialsupport to find out
more about how we can help
you with your finances.
Help with work and cancer
Whether you’re an employee,
a carer, an employer or are
self-employed, we can provide
support and information to help
you manage cancer at work.
Visit macmillan.org.uk/work
Macmillan’s My
Organiser app
This free mobile app
can help you manage
your treatment, from
appointment times
and contact details,
to reminders for when
to take your medication.
Search ‘My Organiser’
on the Apple App
Store or Google Play
on your phone.
116 Understanding womb (endometrial) cancer
Other useful organisations
There are lots of other organisations that can give
you information or support.
Gynaecological cancer
support
Gynae C
1 Bolingbroke Road,
Swindon SN2 2LB
Tel 01793 491116
Email [email protected]
www.gynaec.co.uk
Aims to support women with
gynaecological cancer, as well
as their partner, family and
friends. Offers confidential,
emotional support through a
telephone helpline, email or
letter. Also supplies information
about other related groups
and organisations when
appropriate. Gynae C cannot
offer medical advice.
Sex and fertility support
The College of Sexual and
Relationship Therapists
(COSRT)
PO Box 13686,
London SW20 9ZH
Tel 020 8543 2707
Email [email protected]
www.cosrt.org.uk
A national specialist charity
for sex and relationship
therapy. Has a list of qualified
practitioners and clinics
providing sex or relationship
therapy in the UK. Send a
stamped addressed envelope
for details, or visit the website.
Further information 117
Daisy Network: Premature
Menopause Support Group
PO Box 183,
Rossendale BB4 6WZ
Email
[email protected]
www.daisynetwork.org.uk
A support group for women
who have premature
menopause due to early
ovarian failure. The website
gives information about premature menopause and
related issues. Also has a
live forum where members
can talk to each other and
share experiences.
Women’s Health Concern
4–6 Eton Place,
Marlow SL7 2QA
Tel 01628 478 473
Email [email protected]
www.womens-healthconcern.org
A charity providing help
and advice to women on a
wide variety of gynaecological,
urological and sexual health
conditions. Offers information
by email, in print and
online. Has a wide range
of fact sheets.
If you have a question for
a nurse or medical adviser,
you can submit it through
their email advice service:
www.womens-healthconcern.org/help/email.html
The charity depends on private
donations and grants to carry
out their work. They ask for a
donation of £5, payable online,
to cover the costs of this service.
118 Understanding womb (endometrial) cancer
General cancer
support organisations
Cancer Black Care
79 Acton Lane,
London NW10 8UT
Tel 020 8961 4151
Email
[email protected]
www.cancerblackcare.org.
uk
Offers information and
support for people with cancer
from ethnic communities, their
friends, carers and families.
Cancer Focus
Northern Ireland
40–44 Eglantine Avenue,
Belfast BT9 6DX
Tel 0800 783 3339
(Mon–Fri, 9am–1pm)
Email
[email protected]
www.cancerfocusni.org
Offers a variety of services
to people affected by cancer,
including a free helpline,
counselling and links to
local support groups.
Cancer Research UK
Angel Building,
407 St John Street,
London EC1V 4AD
Tel 0300 123 1022
www.cancerhelp.org.uk
Has patient information on
all types of cancer and has
a clinical trials database.
Cancer Support Scotland
The Calman Centre,
75 Shelley Road,
Glasgow G12 0ZE
Tel 0800 652 4531
Email info@
cancersupportscotland.org
www.cancersupport
scotland.org
Runs cancer support
groups throughout Scotland.
Also offers free complementary
therapies and counselling to
anyone affected by cancer.
Macmillan Cancer Voices
www.macmillan.org.uk/
cancervoices
A UK-wide network that enables
people who have or have
had cancer, and those close
to them such as family and
carers, to speak out about their
experience of cancer.
Further information 119
Maggie’s Centres
2nd Floor Palace Wharf,
Rainville Road,
London W6 9HN
Tel 0300 123 1801
Email
[email protected]
www.maggiescentres.org
Provides information about
cancer, benefits advice,
and emotional or
psychological support. Penny Brohn Cancer Care
Chapel Pill Lane,
Pill, Bristol BS20 0HH
Tel 01275 371 100
(Mon–Fri, 9.30am–5pm)
Email
[email protected]
www.pennybrohn
cancercare.org
Offers a combination of
physical, emotional and
spiritual support, using
complementary therapies
and self-help techniques.
Riprap
Pauline Hutchinson,
University of Sheffield,
Sykes House office,
St Luke’s Hospice,
Little Common Lane,
Sheffield S11 9NE
www.riprap.org.uk
Developed especially for
teenagers who have a
parent with cancer.
Tenovus
Head Office,
Gleider House,
Ty Glas Road,
Cardiff CF14 5BD
Tel 0808 808 1010
(Mon–Sun, 8am–8pm)
www.tenovus.org.uk
Aims to help everyone get
equal access to cancer
treatment and support.
Funds research and provides
support such as mobile
cancer support units, a free
helpline, an ‘Ask the nurse’
service on the website and
benefits advice.
120 Understanding womb (endometrial) cancer
Financial or legal
advice and information
Department for Work
and Pensions (DWP)
Disability Living Allowance
Benefit Enquiry Line
Helpline 0345 712 3456
Northern Ireland
Textphone 0345 722 4433
Tel 0800 220 674
Personal Independence
(Mon–Wed and Fri, 9am–5pm, Payment Helpline
Thu, 10am–5pm)
0345 850 3322
Textphone 0800 243 787
Textphone 0345 601 6677
www.nidirect.gov.uk/
Carer’s Allowance Unit
money-tax-and-bfits
0345 608 4321
Provides information and advice Textphone 0345 604 5312
about disability benefits and
www.gov.uk/browse/benefits
carers’ benefits.
Manages state benefits in
England, Scotland and Wales.
Citizens Advice
You can apply for benefits
Provides advice on a variety
and find information online
of issues including financial,
or through its helplines.
legal, housing and employment
issues. Find details for your
GOV.UK
local office in the phone book
www.gov.uk
or on one of these websites:
Has comprehensive information
about social security benefits
England and Wales
and public services.
www.citizensadvice.org.uk
Personal Finance Society –
Scotland
‘Find an Adviser’ service
www.cas.org.uk
www.findanadviser.org
Use the website to find qualified
Northern Ireland
financial advisers in your area.
www.citizensadvice.co.uk
You can also find advice online
in a range of languages at
adviceguide.org.uk
Further information 121
Support for carers
Carers Trust (Princess Royal
Trust for Carers in Scotland)
32–36 Loman Street,
London SE1 0EH
Tel (England)
0844 800 4361
Tel (Scotland)
0300 123 2008
Tel (Wales)
0292 009 0087
Email [email protected]
www.carers.org and
www.youngcarers.net
Provides support, information,
advice and services for people
caring at home for a family
member or friend. You can
find details for UK offices
and search for local support
on the website.
Carers UK
Tel (England, Scotland,
Wales) 0808 808 7777
Tel (Northern Ireland)
028 9043 9843
(Wed–Thu, 10am–12pm
and 2–4pm)
Email
[email protected]
www.carersuk.org
Offers information and
support to carers across the UK.
Can put people in contact with
support groups for carers in
their area.
You can search for more organisations on our
website at macmillan.org/organisations,
or call us on 0808 808 00 00.
122 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 Senior Medical
Editor, Professor David Luesley, and Chief Medical Editor, Dr Tim Iveson, Consultant
Medical Oncologist. With thanks to: Dr Elly Brockbank, Sub speciality Fellow in
Gynae-Oncology; Professor Stephen Chan, Consultant Oncologist; Claire Parkinson,
Macmillan Gynaecology CNS. Thanks also to the people affected by cancer who
reviewed this edition, and those who shared their stories.
Sources
We’ve listed a sample of the sources used in this publication below. If you’d like further
information about the sources we use, please contact us at bookletfeedback@
macmillan.org.uk
Endometrial cancer. ESMO Clinical Practice Guidelines for diagnosis, treatment and
follow-up. 2013.
Endometrial carcinoma: pretreatment evaluation, staging, and surgical treatment.
Uptodate. 2014 (accessed online October 2014).
Fertility sparing treatments in gynaecological cancers. Royal College of Obstetricians
and Gynaecologists. February 2013.
Referral guidelines for suspected cancer. National Institute for Health and Care
Excellence. 2005.
Uterine (womb) cancer: Cancer statistics. Cancer Research UK. November 2014.
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
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Or just a cup of tea and a chat. Could you lend a hand?
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More than one in three of us will get cancer.
For most of us it will be the toughest fight we
ever face. And the feelings of isolation and
loneliness that so many people experience
make it even harder. But you don’t have to
go through it alone. The Macmillan team
is with you every step of the way.
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 there for you online,
any time. The supporters who make it all possible.
Together, we are all Macmillan Cancer Support.
For cancer support every step of the way,
call Macmillan on 0808 808 00 00
(Mon–Fri, 9am–8pm) or visit macmillan.org.uk
Hard of hearing? Use textphone
0808 808 0121, or Text Relay.
Non-English speaker? Interpreters available.
Braille and large print versions on request.
© Macmillan Cancer Support, April 2015. 10th edition. MAC11656.
Next planned review 2017. Macmillan Cancer Support, registered
charity in England and Wales (261017), Scotland (SC039907) and the
Isle of Man (604). Printed using sustainable material. Please recycle.