Download Understanding Primary Bone Cancer

A practical guide to
understanding cancer
Understanding
Primary
bone cancer
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Understanding primary bone cancer
Contents
About Understanding primary bone cancer
4
What is cancer?
6
The bones
8
Types of primary bone cancer 9
Causes and risk factors
12
Symptoms
15
How bone cancer is diagnosed
16
Further tests
22
Grading and staging
26
Treatment
28
Surgery
37
Chemotherapy
53
Radiotherapy
60
Research – clinical trials
66
After treatment
69
Your feelings
70
If you are a relative or friend
74
Talking to children
76
What you can do
78
Who can help?
79
Financial help and benefits
81
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Work
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How we can help you
86
Other useful organisations
90
Further resources
102
Questions you might like to ask your doctor or nurse
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About Understanding
primary bone cancer
This is a booklet about primary bone cancer.
We hope it answers some of your questions and
helps you deal with some of the feelings you may
have. We’ve also listed other sources of support
and information, which we hope you’ll find useful.
Bone cancers can be primary or secondary cancers. The two
are quite different and this booklet is only about primary bone
cancer. Your doctor will tell you whether your cancer started in
a bone (primary bone cancer) or started elsewhere in your body
and spread to the bones (secondary bone cancer). Secondary
bone cancer is much more common than primary bone cancer,
and your treatment will depend on where the cancer started.
We have a separate booklet about secondary bone
cancer, which we can send you.
Some types of primary bone cancer can affect children and
young adults. This booklet has been written for parents of
children with bone cancer, as well as for teenagers and adults
who have the disease.
We have written a booklet with the Children’s Cancer and
Leukaemia Group (CCLG) called A parent’s guide to children’s
cancer, which discusses cancer in children. We also have fact
sheets about osteosarcoma and Ewing’s sarcoma in children.
We can send you free copies of these.
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There’s further information about primary bone cancer on our
Teen Info on Cancer website (TIC) for teenagers and young
people, at click4tic.org.uk
We can’t advise you about the best treatment for you or your
child. This information can only come from your doctor, who
knows your full medical history.
If you’d like to discuss this information, call the Macmillan
Support Line free on 0808 808 00 00, Monday–Friday,
9am–8pm. If you’re hard of hearing you can use textphone
0808 808 0121, or Text Relay. For non-English speakers,
interpreters are available. Alternatively, visit macmillan.org.uk
Turn to pages 90–105 for some useful addresses and websites.
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.
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What is cancer?
The organs and tissues of the body are made up of tiny
building blocks called cells. Cancer is a disease of these cells.
Cancer is not a single disease with a single cause and a single
type of treatment. There are more than 200 different types of
cancer, each with its own name and treatment.
Although cells in different parts of the body may look different
and work in different ways, most repair and reproduce
themselves in the same way. Normally, cells divide in an orderly
and controlled way. But if for some reason the process gets out
of control, the cells carry on dividing, and develop into a lump
called a tumour. Tumours can be either benign (non-cancerous)
or malignant (cancerous). Doctors can tell whether a tumour
is benign or malignant by removing a piece of tissue (biopsy)
and examining a small sample of cells under a microscope.
Normal cells
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In a benign tumour, the cells do not spread to other parts of
the body and so are not cancerous. However, they may carry
on growing at the original site, and may cause a problem by
pressing on surrounding organs.
In a malignant tumour, the cancer cells have the ability to
spread beyond the original area of the body. If the tumour
is left untreated, it may spread into surrounding tissue.
Sometimes cells break away from the original (primary)
cancer. They may spread to other organs in the body through
the bloodstream or lymphatic system.
The lymphatic system is part of the immune system − the body’s
natural defence against infection and disease. It’s made up
of organs such as bone marrow, the thymus, the spleen and
lymph nodes.
The lymph nodes throughout the body are connected by a
network of tiny lymphatic tubes (ducts). The lymphatic system
has two main roles: it helps to protect the body from infection
and it drains fluid from the tissues. When the cancer cells reach
a new area they may go on dividing and form a new tumour.
This is known as a secondary cancer or a metastasis.
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The bones
The human body is made up of more than 200 bones of
different shapes and sizes. Bones are made of living cells
called osteocytes, osteoclasts and osteoblasts. These cells
are bound together by a hard, calcium-like material. This makes
bone strong and rigid. Bones are hollow and filled with a spongy
material called bone marrow, which makes blood cells.
Skull
Clavicle
Scapula
Ribcage
Humerus
Spinal column
Sacrum
Radius
Ulna
Pelvis
Femur
Fibula
Tibia
The human skeleton
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The joints of the bones are covered in cartilage – a tough,
flexible material rather like gristle. Because cartilage is more
elastic than bone, it allows the bones to move freely at the
joints. It also cushions the bones at the joints to stop them
rubbing against each other.
The bones have several important functions. The skeleton gives
the body rigid support and the joints act as levers so that the
body can move. The bones also protect organs in the body –
for example, the ribs protect the heart and lungs. Bones also
store some of the body’s essential minerals, especially calcium.
Types of primary bone cancer
Primary bone cancer is rare. About 600 people are diagnosed
with it in the UK each year. It can occur at any age and is slightly
more common in men than women. There are several different
types. If your cancer is not one of those described here, contact
our cancer support specialists on 0808 808 00 00. They will
be able to give you more information about it.
Osteosarcoma (also called osteogenic sarcoma)
Osteosarcoma is the commonest type of primary bone cancer.
It’s most common in teenagers, young adults and adults in
their 60s, but people of any age can be affected.
It can occur in any bone, but is most likely to develop around
the knee, in the thigh bone (femur), in the shin bone (tibia) or in
the upper arm (humerus).
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Ewing’s sarcoma
Ewing’s sarcoma is named after the surgeon who first described
it. This type of bone cancer is also more common in teenagers
and young adults, but can occur at any age. It’s more likely to
occur in young children than osteosarcoma is.
Any bone can be affected, but the pelvis, thigh bone (femur) and
shin bone (tibia) are the most common sites. It’s also possible for
Ewing’s sarcoma to start in the soft tissues of the body. This is
called extraosseous Ewing’s sarcoma (‘extra’ means outside,
‘osseous’ means bone), or soft tissue Ewing’s sarcoma.
Chondrosarcoma
Chondrosarcoma is usually a slow-growing tumour and is
most common in middle-aged people.
The cancer starts in cartilage cells (see page 9), although it
can also grow within a bone or on its surface. The most common
places in the body for it to develop are the upper arm (humerus)
or thigh bone (femur), but it can occur in other bones such as
the ribs, pelvis or shoulder blade (scapula).
Spindle cell sarcoma
Spindle cell sarcoma is a rare type of bone cancer. It is similar
to osteosarcoma, but tends to occur in adults over the age of 40.
It’s extremely rare in people under 20.
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There are four types of spindle cell sarcoma:
Malignant fibrous histiocytoma, which is most likely to affect
a bone in the leg, especially around the knee joint or in the arm.
Fibrosarcoma, which is most likely to affect the thigh
bone (femur).
Leiomyosarcoma, which usually occurs in the thigh bone
(femur), shin bone (tibia) or upper arm bone (humerus).
Undifferentiated sarcoma of the bone, which may arise
from any bone but usually affects the arm and leg (limb)
bones or the pelvis.
The four types of spindle cell sarcoma are treated in a similar
way to osteosarcoma.
Chordoma
This is an extremely rare cancer, which tends to be slow growing.
It starts in the bones of the spine, either in the bottom of the
spine (the sacrum) or in the neck. It can occur at any age, but is
more common in people in their 40s and 50s.
Angiosarcoma
Angiosarcoma can occur at any age, but it is very rare.
Angiosarcomas can affect any bone. They can develop in more
than one bone at the same time, or in more than one place in
a single bone.
We can send you further information about the types of
bone cancer mentioned in this chapter.
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Causes and risk factors
The exact causes of primary bone cancer are unknown, and for
most people with bone cancer it’s not clear why it has developed.
Research into possible causes is going on all the time. As many
bone cancers occur in teenagers and young people, it’s thought
that they may be related in some way to changes that happen
when bones are growing.
There are some factors that are known to increase a person’s
risk of developing primary bone cancer:
Previous radiotherapy
People who’ve had high doses of radiotherapy to an area that
includes the bones have a slightly increased risk of developing
cancer in one of these bones. This is a very small risk and most
people who have radiotherapy never develop primary bone
cancer. If it does occur, it’s usually about 10–20 years after
having radiotherapy.
Some types of non-cancerous (benign) bone conditions
Having certain benign bone conditions can increase your risk
of developing particular types of bone cancer.
Paget’s disease of the bone can increase the risk of
developing osteosarcoma. Paget’s disease of the bone is a
non-cancerous condition that causes enlarged and deformed
bones. It mainly affects people over 60.
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A non-cancerous bone tumour called osteochondroma
(or chondroma) can sometimes develop into chondrosarcoma.
People with hereditary multiple exostoses (HME) have an
increased risk of developing chondrosarcoma. HME is a rare
condition that causes bony lumps to grow, most commonly in
the arm or leg bones. It often starts in childhood and is usually,
but not always, inherited.
Inheriting a faulty gene
Most bone cancers are not caused by an inherited faulty gene,
but people with certain genetic conditions have an increased
risk of developing bone cancer.
People who have an inherited condition known as Li-Fraumeni
syndrome have an increased risk of osteosarcoma. Children
who have retinoblastoma, a rare type of eye cancer caused
by an inherited faulty gene, also have an increased risk of
developing osteosarcoma.
Injuries
Sometimes, if people discover they have a primary bone cancer
after a knock to their bone, they think that the injury caused
the cancer to develop. There isn’t clear evidence that injury to a
bone can cause bone cancer, but an injury may draw attention
to a bone cancer that’s already there.
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Symptoms
The most common symptoms of primary bone cancer are:
Pain or tenderness in the area of the tumour – This may
start as an ache that doesn’t go away. It may be made worse
by exercise or feel worse at night when the muscles are relaxed.
In children this symptom may be mistaken for a sprain or
‘growing pains’. If a child or teenager has bone pain that
persists during the night then it’s always best to have this
checked out by their GP.
Swelling around the affected area of bone – The swelling
may not show up until the tumour is quite large. It isn’t always
possible to see or feel a lump if the affected bone is deep
within the body tissues.
Reduced movement – If the cancer is near a joint, this can
make it more difficult to move the joint and it can affect the
movement of the whole limb. If the affected bone is in the leg,
it may cause a limp. If the tumour is in the spine, it may press on
nerves, causing weakness or numbness and tingling in the limbs.
Broken bone – Bone cancer is sometimes discovered when a
bone that has been weakened by cancer breaks spontaneously or
after a minor fall or accident. This is called a pathological fracture.
General symptoms in the body – These may include
tiredness, a high temperature or sweats and weight loss.
These symptoms are uncommon but sometimes occur in people
with Ewing’s sarcoma.
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Many of these symptoms can be caused by other conditions
that are more common than bone cancer. Because of this, it
sometimes takes a long time for bone cancer to be diagnosed.
Anyone with bone pain that lasts longer than a few weeks
with no obvious cause should be referred to a bone specialist
(orthopaedic doctor).
How bone cancer
is diagnosed
Usually you begin by seeing your family doctor (GP). They will
examine you and arrange any tests or x-rays that may be
necessary. Your GP may refer you to a local surgeon who
specialises in bone diseases (an orthopaedic surgeon), or to
a bone cancer specialist or bone tumour treatment centre
(sarcoma unit).
If tests suggest that you may have a primary bone tumour,
you should always be referred to a specialist hospital or bone
tumour treatment centre. This is important because some
tests for diagnosing bone tumours, particularly taking a bone
sample (bone biopsy), need to be done by a person with
specialist experience.
Children may be referred to a children’s (paediatric) hospital
for some of their care. Teenagers may be referred to a teenage
cancer unit. These units have specialist doctors with experience
in diagnosing and treating young people with cancer. They also
have a team of people to help support teenagers.
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The specialist at the hospital or bone treatment centre will ask
you about your symptoms. They will also want to know about
your general health and any previous medical problems.
They will examine the affected area to check for any swelling
or tenderness. You’ll usually have a blood sample taken to
check your general health and you will have some of the
following tests:
Bone x-rays
Bone x-rays may help to show whether the cancer has started
in the bone (primary bone cancer), or has spread into the
bone from a cancer elsewhere in the body (secondary bone
cancer). Sometimes, how the bone looks on an x-ray can help
the doctor diagnose which type of bone cancer it is. This is
often the case for osteosarcoma. However, other tests will still
be needed before the doctor can definitely say whether it’s a
primary or secondary bone cancer and what type of cancer it is.
Bone scan
This test looks at all the bones in the body. It shows up any signs
of cancer in any other bones away from the main tumour.
A small amount of a radioactive substance is injected into
a vein in your hand or arm. Abnormal bone absorbs more
radioactivity than normal bone, so these areas are highlighted
and picked up by the scanner as ‘hot spots’. The level of
radioactivity used in the scan is very small and doesn’t cause
any harm to your body.
You will need to wait for 2–3 hours between having the
injection and the scan, so you may want to take a magazine,
book or MP3 player with you to help pass the time.
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If ‘hot spots’ do show up on a bone scan, it isn’t always clear
whether they’re caused by cancer or by other conditions,
such as arthritis. Sometimes a CT scan (see page 22) or MRI
scan (see below) may help the doctors decide whether the
changes seen on a bone scan are caused by bone cancer or
by another condition.
MRI (magnetic resonance imaging) scan
An MRI scan is used to assess the extent of the primary tumour
so that the doctors can plan the best treatment. Some centres
may do an MRI scan of the whole skeleton instead of a bone
scan. This is to check for signs of cancer in any other bones
away from the main tumour.
An MRI scan uses magnetism to build up a detailed picture of
areas of your body. The scanner is a powerful magnet so you
may be asked to complete and sign a checklist to make sure
it’s safe for you. The checklist asks about any metal implants
you may have (for example a pacemaker, surgical clips or bone
pins). You should also tell your doctor if you’ve ever worked
with metal or in the metal industry, as very tiny fragments of
metal can sometimes lodge in the body. If you do have any
metal in your body, you probably 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 their 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.
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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.
During the scan you’ll be able to hear and speak to the person
operating the scanner.
Bone sample (bone biopsy)
A sample of bone is needed to diagnose bone cancer. This is
because x-rays and bone scans can’t always show whether a
tumour is non-cancerous or cancerous and, if it is cancerous,
the exact type of bone cancer it is.
A bone biopsy is a specialised test and should only be done
by a radiologist or surgeon with specialist expertise in bone
cancers. There are two ways of taking a bone biopsy:
Core needle biopsy
In a core needle biopsy, the doctor uses a special needle to
take a sample from the bone. Before the biopsy, the doctor will
give you an injection of local anaesthetic into your skin and
around your bone to numb it. They will then put the biopsy
needle into the bone to take the sample. You may have several
samples taken.
If the doctor can’t feel the bone lump or it’s deep within the
body, the doctor may use an ultrasound or CT scanner (see
page 22) to help them guide the needle into the right place.
You will usually be awake during a core needle biopsy,
although you may be given a sedative to make you feel more
relaxed and drowsy. Sometimes, particularly in children,
the biopsy is done under a general anaesthetic.
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For most people, a core needle biopsy will show whether
the lump is a cancer. However, sometimes it doesn’t provide
enough cells to give a clear diagnosis. In this situation a
surgical biopsy is needed.
Surgical biopsy
This type of biopsy is done less often than a core needle biopsy.
The surgeon uses a surgical knife (scalpel) to open the area and
remove a sample from the lump. If the lump is small enough,
all of it may be removed. A surgical biopsy may be done under
a local or a general anaesthetic. This depends on your age,
the size of the tumour and how deep it is within your body.
Once taken, the bone sample or samples are sent to a
specialist doctor (pathologist). The pathologist can tell whether
the tumour is a cancer or not by examining the cells from the
bone samples under a microscope. If it is a cancer, your doctors
may arrange for further tests on the sample to find out which
type of bone cancer it is.
Waiting for test results
It may take 2–3 weeks for you to get the results of all your
tests. This can be a worrying time for you, but it’s important
that the doctors make an accurate diagnosis. It may help to
talk about your worries with a partner, relative or close friend.
You may also find it helpful to call our cancer support
specialists free on 0808 808 00 00, or one of the support
organisations listed on pages 90–101.
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Further tests
If your tests show that you have bone cancer, the doctor may
want to do some further tests to see whether the cancer has
spread outside the bone. Tests may also be arranged to see
how well your kidneys, heart and other organs are working,
as these may be affected by any treatment that you have.
The tests may include any of the following:
Chest x-ray
In primary bone cancer the most common place for the cancer
to spread to is the lung. A chest x-ray can show whether the
lungs have been affected.
CT (computerised tomography) scan
A CT scan can also be used to check whether a cancer has
spread to the lungs.
A CT scan takes a series of x-rays, which build up a
three-dimensional picture of the inside of the body. The scan
takes 10–30 minutes and is painless. It uses a small amount
of radiation, which is very unlikely to harm you and will not
harm anyone you come into contact with.
You will be asked not to eat or drink for at least four hours
before the scan.
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
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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.
Someone having a CT scan
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Bone marrow sample
This test is only needed if you have, or are likely to have,
Ewing’s sarcoma. Very occasionally, a Ewing’s sarcoma can
spread to the bone marrow, which is the spongy material
inside bones where blood cells are made.
Taking a bone marrow sample
A small sample (biopsy) of bone marrow is taken from the hip
bone. Adults will be given a local anaesthetic injection into the
area around the bone to numb it. Children will usually have a
general anaesthetic. The doctor will then pass a special needle
through the skin into the bone. When the needle is in position,
the doctor will draw a small liquid sample from the bone marrow
into a syringe. You may feel some discomfort when this is being
done but it should only last for a few seconds. You can be given
painkillers if you need them.
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The test is usually done in the outpatient department and
takes about 10–15 minutes.
Sometimes a small core of marrow is needed (a trephine
biopsy). This procedure takes a few minutes longer.
A special type of needle is passed through the skin to the
bone marrow. The needle has a tip that can cut out a
sample of the bone marrow. You may feel bruised after
the test and have an ache for a few days. This can be
eased with mild painkillers.
Your bone marrow samples will be sent to a laboratory to be
looked at under a microscope. It may take 7–10 days to get
the results.
Other tests
If you’re going to have chemotherapy (see page 53), you will
also have tests to check your kidneys, heart and hearing.
Some chemotherapy drugs can affect how well you hear highpitched sounds. So you may have hearing tests (audiograms)
before and during your course of chemotherapy.
To check how well your kidneys are working, you may have a
small amount of mildly radioactive liquid injected into a vein
in your hand or arm. The radioactive liquid will be carried
through your kidneys then passed out in your urine. A few
hours after the injection, a nurse will take blood samples
from you. These will show how well your kidneys are working.
You may also have an electrical trace taken of your heartbeat
(an ECG), an ultrasound scan of your heart (echocardiogram)
or a MUGA (multiple-gated acquisition) scan. A MUGA scan
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Understanding primary bone cancer
shows the movement of the heart and is used to assess heart
function. If you need a MUGA scan your doctors will give you
more information about it.
Grading and staging
Knowing the stage and grade of the cancer helps the doctors
decide on the most appropriate treatment for you.
Grading
Grading describes the appearance of the cancer cells under a
microscope. The grade gives an idea of how quickly the cancer
may develop. The most common grading system for bone
cancer uses two grades: low-grade and high-grade.
Low-grade means that the cancer cells look very similar to
normal bone cells. They are usually slow-growing and are less
likely to spread.
In high-grade tumours the cells look very abnormal. They’re likely
to grow more quickly and are more likely to spread. All Ewing’s
sarcomas are high-grade.
Staging
The stage of a cancer describes its size and whether it has
spread. The stages of bone cancer are also based on the
grade of the cancer.
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There are two different staging systems used for bone cancer.
This is the Enneking staging system, which is commonly used
to stage bone cancers:
Stage 1
The cancer is low-grade and hasn’t spread beyond the
bone. Stage 1 is further divided into:
• Stage 1A The cancer is low-grade and is still completely
inside the bone it started in. The cancer may be pressing
on the bone wall and causing a swelling, but it has not
grown through it.
• Stage 1B The cancer is low-grade and has grown through
the bone wall.
Stage 2
The cancer is high-grade and hasn’t spread beyond the
bone. Stage 2 is further divided into:
• Stage 2A The cancer is high-grade and is still completely
inside the bone it started in.
• Stage 2B The cancer is high-grade and has grown through
the bone wall.
Stage 3
The bone cancer may be any grade and has spread to other
parts of the body, such as the lungs.
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Treatment
The treatments used for primary bone cancer are surgery,
chemotherapy and radiotherapy. Most people will need a
combination of different treatments.
Surgery is a very important part of treatment and is used to
remove the tumour in the bone.
See page 37 for more information about having surgery to
treat primary bone cancer.
Chemotherapy is used as part of the treatment for most
osteosarcomas and spindle cell sarcomas. Nearly all Ewing’s
sarcomas are treated with chemotherapy.
It’s often given before surgery (neoadjuvant chemotherapy)
and after surgery (adjuvant chemotherapy). Giving
chemotherapy before surgery helps to shrink the tumour,
making it easier to remove. After surgery, chemotherapy
is given to destroy any cancer cells that may have been
left behind.
See page 53 for more information about having chemotherapy
to treat primary bone cancer.
Radiotherapy may be used to treat some types of bone tumour.
It is usually given after surgery or chemotherapy. It may also be
used in situations where surgery isn’t possible.
Radiotherapy is particularly effective in treating Ewing’s
sarcoma. It’s less effective in the treatment of osteosarcoma,
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chrondosarcoma and spindle cell sarcoma, so it isn’t often
used for these types of bone tumour. However, it can be
helpful in certain circumstances.
See page 60 for more information about having radiotherapy
to treat primary bone cancer.
Specialist treatment centres
Your treatment will usually be planned and given in sarcoma
treatment centres (sometimes called sarcoma units).
This will either be one hospital or a group of hospitals that are
close to each other and that work together. Sarcoma treatment
centres specialise in treating people with primary bone tumours
and soft tissue sarcomas.
Because primary bone cancer is rare and there are only a
small number of sarcoma treatment centres in the UK,
you may need to travel quite a long distance to reach one.
However, sometimes it’s possible to have chemotherapy and
radiotherapy treatments at a hospital closer to home. In this
situation these treatments will be planned and given by a
specialist cancer doctor (oncologist) who will work closely with
the doctors at the sarcoma treatment centre.
A team of specialists called a multidisciplinary team (MDT) will
meet to discuss which treatments are best for your situation.
The specialists in the team will have expert knowledge about
bone cancer.
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The MDT will include:
• a surgeon who specialises in bone cancers
• a radiologist (a doctor who reads and interprets x-rays
and scans)
• a pathologist (a doctor who examines samples from
the tumour to see if it’s a cancer and which type it is)
• a medical oncologist (a chemotherapy specialist)
• a clinical oncologist (a specialist in radiotherapy
and chemotherapy)
• a paediatric oncologist (a doctor who specialises in
treating children with cancer) if appropriate
• a key worker, who will be your main contact and will
make sure you get help and support throughout your
treatment – this may be a specialist nurse or other
healthcare professional, such as a physiotherapist.
The team may also include other healthcare professionals, such
as an occupational therapist, dietitian, psychologist or counsellor.
Teenagers and young adults (TYA)
Some hospitals have teenage cancer units (sometimes called
TYA units), which are specially designed for teenagers and
young adults. Other hospitals may have special wards or
areas for you if you’re a teenager with cancer. There may be
video games, DVDs and music to help you feel more at home.
You may have access to a computer so that you can do some
of your school or college work if you feel well enough.
There may also be education specialists who can stay in touch
with your school or college and support your learning needs
while you’re having treatment.
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Most wards for teenagers allow someone to stay with you. This is
usually your parent or guardian but can also be a partner, friend
or other family member, as long as they’re over 16 and are well.
In some hospitals there isn’t a special ward for teenagers with
cancer, so you are treated on an adult cancer ward. The staff
on the adult cancer wards will still be able to look after your
needs, although the facilities may not be the same as those on
a unit specially designed for teenagers.
Children’s cancer centres
If your child has a bone cancer, they will be treated in a
hospital, or a part of a hospital, that specialises in diagnosing
and treating children’s cancers. These are sometimes called
principal treatment centres.
These are relaxed and friendly places, and they aim to give you
and your child as positive an experience as possible. You’re likely
to get to know the staff well. Almost all children’s wards have
facilities where parents can stay.
There will also be support staff such as play therapists in the
hospital. Play therapists use play to help children cope with
the experience of being ill. Children’s cancer centres also have
teachers and most have education departments. Teachers at
the hospital will contact teaching staff at your child’s school to
make sure that they can continue their education whenever they
feel well enough. It’s even possible for children to take exams in
the hospital if needed.
If your child isn’t able to go back to school soon after they go
home, tutoring can often be arranged with the local education
authority. The person responsible for your child’s schooling
while they are in hospital will be able to organise this for you.
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How treatment is planned
The MDT will take a number of factors into account when
advising you on the best course of action for your treatment,
including your age, general health, the type and size of the
tumour, and whether it has begun to spread.
If two treatments are equally effective for your type and stage
of cancer, your doctors may offer you a choice of treatments.
Sometimes people find it hard to make a decision. If you’re
asked to make a choice, make sure that you have enough
information about the different options, what is involved and
the possible side effects, so that you can decide on the right
treatment for you.
Many people with primary bone cancer will also be offered
the opportunity to take part in a research trial (see page 66).
These research trials help doctors find new and better treatments
for people who have primary bone cancer. If your doctor thinks
you are suitable for a clinical trial they will discuss this with you.
Remember to ask questions about any aspects of your treatment
that you don’t understand or feel worried about. It may help to
discuss the benefits and disadvantages of each option with your
cancer specialist, key worker or nurse specialist, or with our
cancer support specialists on 0808 808 00 00.
If you do have any questions about your treatment, don’t be
afraid to ask your doctor or nurse. It often helps to make a list of
questions and to take a relative or close friend with you.
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Understanding primary bone cancer
The benefits and disadvantages of treatment
Many people are frightened by the idea of having cancer
treatments, particularly because of the side effects that can occur.
However, these can usually be controlled with medicines.
Treatment can be given for different reasons, and the potential
benefits will vary depending upon your individual situation.
In people with early-stage bone cancer, treatment is often
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 at a more advanced stage, the 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 upon the cancer and they will get the side
effects without any of the benefit.
If you’ve been offered treatment that aims to cure your 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.
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Understanding primary bone cancer
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. If you’re a parent and your child is under 16 and
needs treatment for bone cancer, the doctor will ask you or
your child to sign the consent form. The law about children
consenting to treatment is very complicated, so do discuss any
concerns you have with the doctor.
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 it again. Some cancer
treatments are complicated, so it’s not unusual for people to
need repeated explanations.
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.
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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.
Second opinion
Your multidisciplinary team 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 your 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.
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Surgery
There have been major improvements in surgical treatments
for bone cancer. In the past, it was often necessary to remove
(amputate) the limb if cancer was found. But now, it’s usually
possible just to remove the affected part of the bone and
replace it with a specially designed metal fitting (endoprosthesis),
or with a bone from another part of the body (bone graft). If the
cancer affects a bone in or near a joint, the whole joint can
often be replaced with an artificial one.
These operations, called limb-sparing surgery, have made
it possible for many people to avoid amputation. They are
only carried out in specialist hospitals, so your doctor should
refer you to one of these hospitals to see whether this type of
operation would be possible for you.
Unfortunately, it isn’t always possible to avoid an amputation.
Sometimes an amputation may be needed to ensure the
cancer has been completely removed. It may also be necessary
if your mobility would be better after an amputation than with
limb-sparing surgery.
The type of surgery you have will depend on a number of factors.
Your surgeon will discuss the different types of surgery in detail
with you before any decision is made about your treatment.
Limb-sparing surgery
Before surgery, your doctor will explain the procedure to you
to make sure that you fully understand what is involved. You will
be given the opportunity to ask any questions you may have
about how the surgery might affect you. You may find it helpful
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Understanding primary bone cancer
to talk to someone who has had the same operation. The medical
staff or your key worker may be able to arrange this for you.
Some hospitals have a counsellor you can talk to about your
feelings and any worries you may have before the operation.
Some people like to see the replacement part or endoprosthesis
(often just called a prosthesis) that will be used during their
operation. If you would like to do this, your surgeon or key
worker can usually arrange it for you.
A physiotherapist will talk to you before your operation and
may give you some exercises to do before surgery, to help
strengthen your muscles.
If you’ve had neoadjuvant chemotherapy (see page 28), it usually
takes a couple of weeks or so before your blood cell levels get
back to normal and you’re ready to have your operation.
After your operation
At first your limb will be firmly bandaged, or you may have
a splint in place to keep it still. This will give the bone graft,
or artificial joint or bone, time to start joining firmly onto the
rest of the bone in the limb. You will probably also have a tube
(drain) coming out of your wound. This will drain excess fluid
and blood into a small container attached to the other end of
the tube. Drains are usually taken out after 3–4 days. You will
also have stitches or staples to close the wound. These are
usually taken out about 10–14 days after the operation.
Eating and drinking For the first few hours after your operation
you probably won’t feel like eating or drinking much, so you’ll
be given fluids into a vein in your hand or arm. This is called a
drip or intravenous infusion. A nurse will take it out once you
begin eating and drinking again.
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Pain You will have some pain and discomfort after your operation,
which will be controlled with painkilling drugs. To start with,
you’ll probably need a strong painkiller such as morphine.
Morphine may be given to you as tablets, as injections into a
muscle given by the nurses, or through a special pump known
as a patient controlled analgesia pump (PCA pump). If you
have a PCA pump it will be attached to a fine tube (cannula),
which is placed in a vein in your arm. You can control the pump
yourself using a handset that you press when you need more of
the painkiller. It’s fine to press the handset whenever you have
pain, as the pump is designed so that you can’t give yourself
too much painkiller. If you find you need to press the handset a
lot, tell the nurses in case you need a higher dose. You will be
shown how to use this type of pump.
Some people may have a different method of pain relief called
an epidural infusion. A fine tube is inserted through your
back into the area just outside the membranes around your
spinal cord, called the epidural space. A local anaesthetic and
other painkilling drugs are given by infusion (drip) into this
space using an electronic pump. The anaesthetic drugs work by
numbing the nerves in the operation area and reducing pain.
It’s important to let the nurses know if your painkillers don’t
seem to be working so that they can either increase the dose
or put you on a different painkiller.
Physiotherapy Physiotherapy is a very important part of your
recovery. It helps you regain muscle strength and get good
movement back in your limb. A physiotherapist will come to
see you soon after your operation and show you some
exercises to do. These exercises keep the muscles in the limb
strong and supple, so that as soon as it’s strong enough you
can use it normally.
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Understanding primary bone cancer
Once you’re able to get up and around, the physiotherapist will
give you more exercises to do. These can be hard work, but it’s
important to keep going with them as they will help you recover.
You may need to continue to have physiotherapy as an outpatient
for some time after your operation.
Physiotherapy exercises
Going home You’ll usually be able to go home once your wound
has healed and you can move around safely. For most people
this is about 7–10 days after the operation. Most people recover
well after their surgery and are able to move around quite
soon. Some people take longer to recover and need extra help.
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Understanding primary bone cancer
Before you go home, the staff will talk to you about your home
situation. If you live alone or have several stairs to climb, you may
need some help to manage at home (see page 47). If you have
any worries about going home, make sure you discuss them
with the nursing staff so that help can be organised.
Living with limb-sparing surgery
After limb-sparing surgery people are often able to do most
of the things they could before, including taking part in
exercise and sports. But, depending on which limb was
affected, there may be some things you can’t do or that you
find more difficult. Your surgeon can explain to you the
particular risks of the operation you’re having, how well the
limb will work afterwards and the risk of possible complications
such as infection.
Knee joint When the knee joint is replaced, the new joint
normally works very well. It’s fine for you to go swimming or
cycling after surgery, but your doctor might advise you against
doing high-impact sports like hockey, football, tennis or rugby.
This is because of the risk of damaging or loosening the joint.
Some people find that, years after their surgery, their prosthetic
knee joint may loosen or cause pain. If this happens, further
surgery will be needed.
Hip joint Replacement of the hip joint is usually very successful.
Young people will have good strength in the new hip, but older
people will usually need to use a walking stick. This is because
their joint and muscles may not be as strong as they were before
the operation. Hip replacements may also loosen and some
people will need to have further surgery within 10 years of
having the hip replaced.
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Understanding primary bone cancer
Shoulder joint People who have a shoulder replacement can
normally move their arm around very well below shoulder
height. However, they’re usually not able to raise their arm
above shoulder height. It’s uncommon for a shoulder joint
prosthesis to loosen. These generally last for many years and
cause few problems.
Infection
With any prosthesis, the main problem that can occur is infection.
If the prosthesis gets infected it will need to be taken out and
replaced. The area needs to be cleaned completely with
antibiotics before a new replacement joint can be put in.
Bone grafts
Where limb-sparing surgery is on a straight part of a bone,
it may be replaced by a piece of bone taken from another area
of the body. This is known as a bone graft. The main problem
that can occur with these operations is an infection in the
replacement bone.
Children and teenagers
If you have a prosthesis put into your limb while you’re still
growing, it will need to be lengthened as the leg or arm grows.
Some types of prosthesis are lengthened during further surgery,
while other types can be lengthened without needing an
operation. Your specialist or key worker will explain how the
prosthesis will be lengthened. There’s a limit to how much a
prosthesis can be lengthened, so younger children will need to
have their original prosthesis replaced with a longer one when
they’re older.
If a bone graft is used, this may also mean that the limb doesn’t
grow normally and so further surgery may be needed to keep
the limb the same length as the unaffected limb.
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Amputation
It’s not always possible to use limb-sparing surgery, and
occasionally removing (amputating) the whole limb may be
necessary. This is often because the cancer has spread from
the bone into the surrounding blood vessels. An amputation
may also be needed after limb-sparing surgery if there’s an
infection in the bone that persists despite treatment, or if the
cancer comes back in the bone.
The preparation for amputation is similar to that for limbsparing surgery (see pages 37–38). You should also be given
psychological support before and after the operation, as facing
an amputation can feel overwhelming (see the information
about living with an amputation on pages 49–50).
The medical staff looking after you will be able to offer help
and support. It may also be helpful to talk to someone who
has had the same operation and can give you practical advice
and encouragement. The hospital staff may be able to arrange
this for you. You may also want to speak to one of the support
organisations listed on pages 90–105.
After your operation
You probably won’t feel like eating or drinking much for the first
few hours after your operation, so you’ll be given fluids into a
vein in your hand or arm. This is called a drip or intravenous
infusion. A nurse will take it out once you begin eating and
drinking again.
You may also have an oxygen mask on when you first wake up.
Some people will have a tube in their bladder (catheter) to drain
urine into a bag until they are up and moving around.
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Understanding primary bone cancer
The part of your body that has been operated on will be
covered with bandages or a plaster cast to control swelling.
There will be a tube (drain) coming from your wound to drain
off excess blood and fluids into a small container. This will
usually be taken out after 3–4 days. You will also have stitches
or staples to close the wound, which are usually taken out
about 10–14 days after the operation.
Pain You may have some discomfort for a few days after your
operation. To start with you may be given morphine by an
intravenous PCA pump, or you may have an epidural infusion
(see page 40). It’s important to let the nurses know if you’re still
in pain so that they can adjust your painkillers.
Phantom pain After your surgery you may have pain that
feels as if it’s coming from the part of the limb that has been
amputated. The pain often feels like a cramping, stabbing or
burning sensation and is a form of nerve pain known as
phantom pain. Most people find that phantom pain gets better
with time and eventually goes away, but some people find that
the pain can persist long-term.
There are a number of different types of drug that can be
given to relieve phantom pain. They include painkillers such as
morphine, and other medications such as antidepressants and
anticonvulsants that work by reducing nerve pain. Your doctor
will be able to advise you on the best painkillers to take if you
have phantom pain.
Physiotherapy A physiotherapist will visit you a day or so after
your operation. They will show you how to do exercises to keep
the muscles around the amputated limb strong and supple,
making it easier to work an artificial limb.
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Understanding primary bone cancer
You will be encouraged and helped to move around as soon as
possible after the operation. If you’ve had an arm amputated,
you will be able to get up and move around once your pain is
controlled and you have recovered from the anaesthetic. If you’ve
had a leg amputated, your physiotherapist will show you how
to move around in bed and transfer to a chair. You’ll probably
be moving around with crutches or in a wheelchair within a
few days.
Once you’re moving around more, you will go to the hospital
gym for physiotherapy. This is a very important part of your
recovery. Your physiotherapist will give you different exercises to
do as your wound heals and you gain strength. If you’re going
to be fitted with an artificial limb you’ll also be taught how to
use this to help you regain independence in everyday activities.
Occupational therapy You will see an occupational therapist
soon after your operation. Their aim is to help you become
as independent as possible in everyday activities. They may
suggest different ways of doing things, or aids or equipment
that you can use.
Going home You’ll be able to go home once your wound
has healed. If you need physiotherapy after you go home,
the physiotherapist will make arrangements for you to have
this. If you don’t live close to the hospital where you had your
operation, you’ll be able to go to a physiotherapist nearer
to you.
Sometimes people need alterations made to their homes to
make it safer for them to move around and to help them be
more independent. The occupational therapist will work with
social services to arrange these for you if they’re needed.
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Artificial limb (prosthesis)
Following an amputation, most people are fitted with an artificial
limb known as a prosthesis. Many different types of artificial
limb are available. There are lower limbs adapted for walking,
swimming, riding a bike and playing sports, and upper limbs
adapted for playing golf, swimming and so on.
One of the team looking after you will discuss limb-fitting with
you and explain what’s involved. The remaining part of your
amputated limb will take a few months to shrink to its final
size and shape, so you won’t be measured and fitted with a
permanent prosthesis until this happens.
In the meantime, if you’ve lost a lower limb you’ll normally
be measured and have a fitting for a temporary prosthesis
about 4–6 weeks after your operation. This usually happens
at a limb-fitting centre, so you may have to travel to get to one.
About two weeks after this you’ll get your temporary prosthesis
and be ready to learn how to use it in physiotherapy. About six
months after surgery you’ll be fitted with a long-term prosthesis.
The timing varies from person to person.
People who’ve lost an upper limb don’t have a temporary
prosthesis. They are usually ready to be fitted with a long-term
prosthesis about three months after their operation.
The staff at the limb-fitting centre will be able to show you
the different types of prosthesis and explain how they work.
They will talk over your needs, and help you to choose the
best types of prosthesis for your situation. For example, if you
swim you may want an additional prosthesis that you can wear
in water.
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Your emotions
Losing an arm or a leg can feel like a bereavement. You’ll need
time to grieve for your loss and to start to cope with the emotional
and practical difficulties this type of surgery can bring.
You may find it helpful, either before or after your operation,
to talk to someone who has had an amputation. The doctor or
nurses on your ward may be able to arrange this.
Even if you thought you were prepared for losing a limb,
you may still feel shocked and distressed after the operation.
You’ll be used to what your body looks like and it can be hard
to come to terms with such a major change. The sense of
looking different from other people can seriously affect your
self-confidence and make you afraid of how other people
might react.
These are very strong emotions and you’ll need time and help
to come to terms with them. The staff on the ward will know
this and will help you as much as they can. They can also make
suggestions to help you cope with people’s reactions.
Other people’s reactions
You may be frightened of other people’s responses to your
amputation. You may feel worried about what your partner,
family or friends will say or think, and whether you’ll be able
to cope with their reactions.
Although this fear is very real, it’s often worse than the reality.
Try to focus on the fact that the people who love you do so
because of who you are and not how you look. The qualities
you are loved for are not removed by an amputation. Be open
about your fears. Given the chance, most people will be very
keen to reassure you that they still love you.
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As you become more used to the way you look, you will
become more confident about dealing with the reactions of
people you don’t know as well. Some people find it helpful
to get out and about as soon as possible after the operation,
while others may take longer. It’s important to do things in
your own time. You may also want to take someone with you
at first to offer support. You may find that other people don’t
even notice your amputation, especially if you are wearing an
artificial limb.
You may feel different about yourself sexually and worry that
you aren’t as sexually attractive. This can be distressing no
matter what your age and whether you have a partner or not.
Many people find it helpful to discuss their feelings with their
partner, a close friend or counsellor.
We have information on relationships, sexuality and cancer that
we can send you if you think it may be helpful.
Call our cancer support specialists on 0808 808 00 00
for details of support groups or counselling services in
your area. Support groups can give both practical and
emotional advice and help to stop you feeling as if you
have to cope alone.
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Surgery if the bone cancer has spread to the lungs
If a bone cancer spreads to the lungs it may still be possible to
cure it with an operation to remove the part of the lung that’s
affected. This operation is called a thoracotomy. It shouldn’t
affect your breathing as it’s still possible to breathe properly if
part of a lung, or even a whole lung, is removed.
When deciding whether this type of operation is possible,
the surgeon will consider several factors including the type
of primary bone cancer, the number of secondary cancers in
the lungs, their size and where they are in the lungs. They will
also take into account your age and general health, as this is a
major operation. Sometimes a course of chemotherapy is given
first. This can help shrink the secondary cancers and may make
an operation possible.
Other treatments if surgery isn’t possible
Occasionally it’s not possible to remove a bone tumour using
surgery. This is more likely to happen if the tumour is in a bone
deep within the body such as the pelvis, or in a bone that can’t
be easily removed without causing serious disability, such as a
bone in the spine. In these situations other treatments such as
chemotherapy or radiotherapy will be used instead.
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Chemotherapy
Chemotherapy is the use of anti-cancer (cytotoxic) drugs to
destroy cancer cells. The drugs work by disrupting the growth
of cancer cells.
Chemotherapy is an important part of the treatment for most
osteosarcomas, spindle cell sarcomas and Ewing’s sarcomas.
Chemotherapy is usually given before you have surgery
or radiotherapy. When given before surgery, it can shrink
the tumour and make it easier to remove. It can also reduce
symptoms such as pain and reduce the chances of the
cancer spreading.
If you have an osteosarcoma or Ewing’s sarcoma, you will also
have chemotherapy after surgery or radiotherapy. This is to
destroy any remaining cancer cells that may have spread to
other parts of the body. It’s given because tiny amounts of
cancer may be present, especially in the lungs, that are too
small to be detected by a scan.
Before having chemotherapy you will have tests to check your
hearing and how well your heart, liver and kidneys are working.
The results are normally available after a few days. Your doctor
will discuss them with you.
You may be offered chemotherapy treatment as part of a clinical
research trial (see page 66). Clinical trials are important because
they can help to improve the way that bone cancer is treated.
Your doctor or research nurse can discuss any relevant trials
with you.
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How chemotherapy is given
Your doctors will discuss your chemotherapy treatment plan
with you.
Chemotherapy drugs are usually given by injection into a vein
(intravenously). Sometimes, to make this easier and to avoid
you having frequent injections, a fine plastic tube called a
central line can be put into a vein in your chest. The line is put
in under a general or local anaesthetic.
1 Central line
is inserted into
your chest here
2 The line is
tunnelled under
your skin
1
2
3
The heart
3 The line comes
out here
A central line
Instead of a central line, a tube may be put into a vein in the
crook of your arm. This is known as a PICC line (peripherally
inserted central catheter line).
A tube with an injectable port just under the skin can also be
used. This is known as an implantable port.
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The line is threaded
through the vein
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Understanding primary bone cancer
The heart
The line comes
out just below
your elbow
Position of a PICC line
Syringe
Skin
Port
Needle
An implantable port
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Chemotherapy is usually given as a series of sessions of
treatment. Each session usually lasts a few days and is followed
by a rest period. The session of chemotherapy and the rest
period is known as a cycle of treatment. A series of cycles
makes up a course of treatment. The number of cycles you
have will depend on the type of bone cancer you have and
how well it is responding to the drugs.
Chemotherapy will usually mean spending a few days in hospital.
Sometimes it may be given to you as an outpatient. In this
situation it’s given continuously into a vein through a central
line or PICC line. The dose is controlled by a small portable pump.
We have fact sheets about central lines, PICC lines and
implantable ports, and there is more detailed information
about them in our booklet Understanding chemotherapy.
Side effects of chemotherapy
Chemotherapy can sometimes cause unpleasant side effects.
Any side effects that occur are usually temporary and can often
be well controlled with medicines. The main side effects are
described here, with tips on ways to avoid or reduce them.
Lowered resistance to infections (neutropenia)
Chemotherapy can temporarily reduce the production of white
blood cells in your bone marrow, making you more prone
to infection.
This effect can begin about seven days after treatment has
been given, and your resistance to infection usually reaches its
lowest point about 10–14 days after chemotherapy. Your white
blood cells will then increase steadily and will usually return to
normal before your next cycle of chemotherapy is due.
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You should contact your doctor or the hospital straight away if:
• your temperature goes above 38˚C (100.4˚F)
• you suddenly feel unwell, even with a normal temperature.
You will have a blood test before having more chemotherapy
to make sure that your white blood cells have recovered.
Occasionally your treatment might need to be delayed if your
blood count is still low. Sometimes an additional drug called
G-CSF may be given to help your bone marrow make white
blood cells more quickly and so reduce the risk of infection.
We can send you a fact sheet on G-CSF.
Anaemia
If the level of red blood cells in your blood is low, you may feel
tired and breathless. This is called anaemia. Anaemia can be
treated by having a blood transfusion.
Bruising and bleeding
Chemotherapy can reduce the production of platelets,
which help the blood to clot. Having low numbers of platelets
increases your chance of bleeding, and this can affect people
in different ways. Tell your doctor or the hospital straight
away if you have any unexplained bruising or bleeding, such
as nosebleeds, bleeding gums, blood in your urine or stools,
blood spots or rashes on the skin. You may need to have a
platelet transfusion.
Feeling sick
Some of the drugs used to treat primary bone cancer may
make you feel sick (nauseated) and sometimes actually be sick
(vomit). Your doctor can prescribe anti-sickness (anti-emetic)
drugs to prevent or greatly reduce nausea and vomiting. If the
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sickness continues, tell your doctor so they can prescribe other
anti-sickness drugs that may be more effective.
Sore mouth
Some chemotherapy drugs can make your mouth sore and
cause mouth ulcers. Regular mouthwashes are important and
your nurse will show you how to use these properly. If you don’t
feel like eating during treatment, talk to your nurse or ask to
see a dietitian for advice. Our booklet Diet and cancer has
some useful tips on coping with eating problems.
Hair loss
Some chemotherapy drugs can cause temporary hair loss.
This can be very upsetting. Your doctor or nurse will be able to
tell you if the drugs you’re having are likely to cause hair loss.
If you lose your hair during chemotherapy, you can often cover
your head by wearing wigs, hats or scarves. Hospital inpatients
are entitled to a free wig from the NHS, and your doctor or
nurse will be able to arrange for a wig specialist to visit you.
People being treated as outpatients may have to pay for
their wigs.
If you lose your hair due to chemotherapy, it will grow back
over a few months once your treatment is finished.
Tiredness
Chemotherapy affects everyone differently. Some people are
able to lead a fairly normal life during their treatment, but many
people find they become very tired and have to take things
much more slowly. Feeling tired all the time can be very
frustrating and difficult to cope with, especially for people who
normally have a lot of energy.
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Try to cut down on any unnecessary activities and give yourself
time to rest. You may want to ask family and friends to help you
with things that you haven’t got the energy to do, for example
doing the housework or walking the dog.
The tiredness will ease once the chemotherapy is over, but it
can often be three or four months until you feel back to normal,
and for some people it can take longer.
We can send you more information about all these side
effects of chemotherapy.
Fertility
Your ability to become pregnant or father a child may be
affected by some of the chemotherapy drugs used to treat
bone tumours. It’s important to discuss fertility with your doctor
or nurse before starting treatment, as it may be possible for
men to store sperm, and for women to store embryos or eggs.
Some women who have chemotherapy have an earlier
menopause than they would otherwise have done. This means
they no longer have as many years of fertility left. Your doctor
can tell you if you may be affected in this way.
Changes in hearing
Some chemotherapy drugs can affect your ability to hear
high-pitched sounds. You may also have ringing in your ears
(tinnitus). This usually gets better when the treatment ends,
although for some people it may be permanent. Tell your
doctor if you notice any loss of hearing or tinnitus.
Although all these side effects may be difficult to cope
with, most of them will disappear once your treatment
is over.
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Contraception during chemotherapy
It’s not advisable to become pregnant or father a child while
having any of the chemotherapy drugs used to treat bone
tumours, as they may harm the developing baby. You can
discuss this with your doctor or chemotherapy nurse.
Our booklet Understanding chemotherapy discusses
chemotherapy and its side effects in detail. We can send
you a copy. We also have fact sheets about individual
chemotherapy drugs and their particular side effects.
Radiotherapy
Radiotherapy treats cancer by using high-energy rays that
destroy the cancer cells while doing as little harm as possible
to normal cells.
Radiotherapy works well for Ewing’s sarcoma and is often given
together with chemotherapy and surgery. If surgery to remove
the tumour is not possible, radiotherapy may be used as the
main treatment.
If the tumour is in your spine or pelvis, radiotherapy may be
used if your doctor thinks surgery to the area might cause
a disability. Sometimes before the start of radiotherapy,
the surgeon will carry out an operation to place a water-filled
balloon into the pelvis. The balloon moves the organs in the
pelvis out of the way of the radiotherapy beam. This protects
them from any damage the radiotherapy may cause.
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Radiotherapy isn’t often used to treat osteosarcoma, spindle cell
sarcoma or chondrosarcoma, because these types of bone cancer
aren’t very sensitive to radiation. However, radiotherapy may
sometimes be used instead of surgery, if surgery isn’t advisable.
Occasionally, radiotherapy may be given after surgery to
destroy any cancer cells that remain in the surrounding tissues,
or to reduce the chance of the cancer coming back.
How radiotherapy is given
Treatment is usually given in the hospital radiotherapy department,
every weekday, with a rest at the weekend. How long your
treatment takes will depend on the type and size of the cancer,
but it will normally be a few weeks. Your doctor will discuss
your treatment with you beforehand.
Planning your treatment
To make your radiotherapy as effective as possible, it must be
carefully planned. On your first few visits to the radiotherapy
department you’ll usually be asked to have a CT scan (see
page 22), which will take images of the area to be treated.
The planning will be done by a clinical oncologist and medical
physicist or radiographer, and may take up to a few visits.
Marks may be drawn on your skin to help the radiographer,
who gives you your treatment, to position you accurately.
They also show where to direct the rays. These marks must stay
visible throughout your treatment, but they can be washed off
once it is over. Often two or more tattoo marks are also made
on the skin. These are permanent, but they are the size of a
pinpoint and will only be done with your permission. It’s a little
uncomfortable while the tattoo is being done, but it’s a good
way of making sure that treatment is directed accurately.
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At the beginning of your radiotherapy you’ll be told how to look
after the skin around the area to be treated.
Positioning the radiotherapy machine
Before each session of radiotherapy the radiographer will
position you carefully and make sure that you’re comfortable.
Treatment only takes a few minutes. During treatment you’ll
be left alone in the room, but you can talk to the radiographer
who will be able to see you from the next room. Radiotherapy is
not painful, but you do have to lie still for a few minutes while it
is being given.
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Side effects of radiotherapy
Side effects following radiotherapy treatment will depend on
the area being treated. The side effects can be mild or more
troublesome, depending on the strength of the radiotherapy
dose and the length of your treatment. The radiotherapist will
be able to advise you about what to expect. Some general side
effects include tiredness, feeling sick, sore skin and hair loss in
the area being treated.
Radiotherapy doesn’t make you radioactive. It’s safe
for you to be with other people, including children,
throughout your treatment.
Tiredness
Radiotherapy can make you tired so you may need more rest
than usual, especially if you have to travel a long way for
treatment every day.
Feeling sick
Nausea can usually be effectively treated by anti-sickness
drugs (anti-emetics). Your doctor can prescribe them for you.
If you don’t feel like eating, speak to your nurse or ask to see
a dietitian for advice. Our booklet Diet and cancer has some
helpful hints on how to eat well if you’re feeling sick.
Skin reaction
Some people develop a skin reaction while having radiotherapy.
If this affects you, it will normally happen after 3–4 weeks.
People with pale skin may find that the skin in the treatment area
becomes red and sore or itchy. People with darker skin may find
that their skin becomes darker and can have a blue or black
tinge. Your radiographers will be looking out for these reactions,
and you should let them know if you notice any soreness or
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change in skin colour. They will be able to give you advice on
how to look after your skin in the area being treated.
Hair loss
Radiotherapy can make your hair fall out in the area being
treated. It may grow back after treatment is over, but for some
people the hair loss is permanent. This depends on the total
dose of radiotherapy that is given. Your doctor can tell you
whether your hair is likely to grow back after treatment.
All these side effects should disappear gradually once
your course of treatment is over, but it’s important to let
your doctor know if they continue. We have a booklet
called Understanding radiotherapy, which gives more
detail about this treatment and its side effects.
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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 be carried out to:
• test new treatments, such as new chemotherapy drugs,
gene therapy or cancer vaccines
• look at new combinations of existing treatments, or change
the way they are given, to make them more effective or
reduce side effects
• compare the effectiveness of drugs used to control symptoms
• find out how cancer treatments work
• find out which treatments are the most cost-effective.
Trials are the only reliable way to find out whether a different
type of surgery, chemotherapy, radiotherapy or other treatment
is better than what is already available.
Taking part in a trial
You may be asked to take part in a treatment research trial,
and 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 to be less effective
than existing treatments, or to have side effects that outweigh
the benefits.
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If you decide not to take part in a trial, your decision will be
respected and you do not have to give a reason. There will be
no change in the way you are treated by the hospital staff and
you’ll be offered the standard treatment for your situation.
Our booklet Understanding cancer research trials
(clinical trials) describes clinical trials in more detail.
Blood and tumour samples
When you’re being diagnosed with primary bone cancer,
many blood and tumour samples may be taken. 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’re
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.
Current research
As bone cancers are rare, trials are usually organised by
specialists from many countries working together, and may
take years to complete. Clinical trials for osteosarcoma and
Ewing’s sarcoma are especially important, so that more people
can be cured of them. Your hospital doctor will be able to tell
you whether there are any trials such as the Euro-Ewing 99 trial
(see page 68) that may be suitable for you.
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Euro-Ewing 99 trial
If you have Ewing’s sarcoma you may be asked to take part
in the Euro-Ewing 99 trial. People with a Ewing’s sarcoma are
usually treated with chemotherapy first, followed by surgery,
radiotherapy and more chemotherapy. The Euro-Ewing 99 trial
is looking at using different combinations of chemotherapy and
high-dose treatment with a stem cell transplant. Your doctor or
specialist nurse will explain the different treatments if this trial
is appropriate to you. We have a booklet called Understanding
high-dose treatment with stem cell support, which we can send
you free.
Our website macmillan.org.uk has information about
current clinical trial databases.
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After treatment
Follow-up
After your treatment is completed, you’ll have regular check-ups
and possibly blood tests, scans or x-rays to check your lungs for
any signs of cancer. These will probably continue for several years.
Many people find that for a while they get very anxious before
the appointments. This is natural. It may help to get support
from family, friends or one of the organisations listed on pages
90–102 during this time.
If you have any problems, or notice any new symptoms between
check-ups, let your doctor know as soon as possible.
For people whose treatment is over apart from regular
check-ups, our booklet Life after cancer treatment gives
useful advice about keeping healthy and adjusting
to life after treatment. We also have booklets about
exercise, diet, giving up smoking and your feelings
after treatment.
What if the cancer comes back?
For many people with early-stage bone cancer, it will never
come back after treatment.
If the cancer does come back in the lungs or in a bone,
an operation to remove all of the cancer may sometimes
be possible. This would be done to try to cure the cancer.
Chemotherapy may be given before and after the operation.
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If it isn’t possible to cure the cancer, treatments such as
chemotherapy and radiotherapy may be given to control the
cancer for as long as possible and to help relieve any symptoms.
Your feelings
Most people feel overwhelmed when they are told they have
cancer and experience many different emotions. These are part
of the process that people go through while dealing with their
illness. Partners, family members and friends often have similar
feelings and may also need support and guidance to cope.
Reactions differ from one person to another – there is no
right or wrong way to feel. We describe some of the common
emotional effects here. However, reactions vary and people
have different emotions at different times.
Our booklet How are you feeling? discusses the feelings
you may experience and has advice on how to cope
with them.
Shock and disbelief
Often disbelief is the immediate reaction when cancer is
diagnosed. You may feel numb and unable to express any
emotion. You may also find that you can take in only a small
amount of information and so you have to keep asking the
same questions again and again, or you need to be told the
same bits of information repeatedly. This need for repetition is
a common reaction to shock.
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Some people find that their feelings of disbelief make it difficult
for them to talk about their illness with family and friends.
For others it may be the main topic of conversation as it’s the
main thing on their mind.
We have a booklet called Talking about your cancer
that you may find helpful. We can send you a copy.
Fear and uncertainty
Cancer is a frightening word surrounded by fears and myths.
One of the greatest fears people have is that they will die.
Many cancers are curable if caught at an early stage. When a
cancer is not curable, current treatments often mean that it can
be controlled for years.
People also worry about the symptoms of cancer such as pain.
In fact, some people with cancer have no pain at all. If you do
have pain or other symptoms, there are many medicines and
other ways to help relieve them or keep them under control.
Our booklets Controlling cancer pain and Controlling the
symptoms of cancer describe these methods.
Many people are anxious about whether their treatment will
work and how to cope with possible side effects. It’s best to
discuss your individual treatment and possible outcomes in
detail with your doctor.
You may find that doctors can’t answer your questions fully,
or that their answers sound vague. It’s often impossible for
them to say for certain how effective treatment might be.
Doctors know approximately how many people will benefit
from a certain treatment, but they can’t predict the future for
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a particular person. Many people find this uncertainty hard to
live with.
Uncertainty about the future can cause a lot of tension, but your
fears may be worse than the reality. Finding out about your
illness can be reassuring. Discussing what you have found out
with your family and friends can also help to relieve some of
the worry.
Denial
Many people cope with their illness by not wanting to know
much or talk much about it. If that’s the way you feel, then just
explain that you’d prefer not to talk about your illness, at least
for the time being.
Sometimes, however, it’s the other way around. You may find
that your family and friends don’t want to talk about your illness.
They may appear to ignore the fact that you have cancer,
perhaps by playing down your anxieties and symptoms or
deliberately changing the subject. If this upsets or hurts you,
try telling them. Perhaps start by reassuring them that you do
know what is happening and that it will help you if you can talk
to them about your illness.
Anger
People often feel very angry about their illness. Anger can hide
other feelings, such as fear or sadness. You may direct your
anger at the people who are closest to you and at the doctors
and nurses who are caring for you.
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It’s understandable that you may be very upset by many aspects
of your illness, so you don’t need to feel guilty about your angry
thoughts or irritable moods. Bear in mind that your relatives and
friends may sometimes think that your anger is directed at them,
when it’s really directed at your illness. It may help to tell them this,
or perhaps you could show them this section of the booklet.
Blame and guilt
Sometimes people blame themselves or others for their illness,
trying to find reasons to explain why it has happened to them.
This may be because we often feel better if we know why
something has happened. In most cases it’s impossible to
know exactly what has caused a person’s cancer. So there’s no
reason for you to feel that anyone is to blame.
Resentment
Understandably, you may feel resentful because you have cancer
while other people are well. These feelings may crop up from
time to time during the course of your illness and treatment.
Relatives too can sometimes resent the changes that your illness
makes to their lives. It usually helps to discuss these feelings,
rather than keeping them to yourself.
Withdrawal and isolation
There may be times when you want to be left alone to sort out
your thoughts and emotions. This can be hard for your family
and friends who want to share this difficult time with you. It may
make it easier for them to cope if you reassure them that,
although you don’t feel like discussing your illness at the moment,
you will talk to them about it when you’re ready.
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Sometimes depression can stop you wanting to talk. If you
or your family think you may be depressed, discuss this with
your GP. They can refer you to a doctor or counsellor who
specialises in the emotional problems of people with cancer,
or prescribe an antidepressant drug for you.
If you are a relative or friend
Some families find it difficult 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 are letting them down
if you admit to being afraid. Unfortunately, denying strong
emotions like this 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. Don’t rush into
talking about the illness. Often it’s enough just to listen and let
the person with cancer talk when they’re ready.
Our booklet Lost for words is written for the relatives
and friends of people with cancer. It looks at some of
the difficulties people may have when talking about
cancer and suggests ways of overcoming them.
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Talking to children
Deciding what to tell your children or grandchildren about your
cancer is difficult. An open, honest approach is usually best.
Even very young children can sense when something is wrong,
and their fears can sometimes be worse than the reality.
How much you tell your children will depend on their age and
how mature they are. It may be best to start by giving only
small amounts of information and gradually tell them more to
build up a picture of your illness.
Children often feel that they are somehow to blame for your
illness, and may feel guilty for a long time. Whether they
show it or not, they will need to be reassured that your illness
is not their fault. They may also want reassurance about
what they are told by friends and other people, as they may
misunderstand what they hear.
Very young children are usually concerned with what is
happening in the present, and they don’t often worry about
what will happen later. They usually need only simple
explanations of why you need to go into hospital or are not
your usual self. They may ask the same question again and
again, which can be difficult to deal with when you’re already
coping with the cancer and its effects. Slightly older children
may understand better with a story about ‘good cells’ and ‘bad
cells’. Most children of about 10 years and over can grasp
fairly complicated explanations.
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Children of any age may worry that you are going to die.
If your cancer is likely to be cured, or controlled for a long
time, it’s important to tell them this. If the cancer is advanced
it is helpful to sensitively prepare the child for your death.
Obviously this can be a very difficult thing to do and you may
need help and support.
Our booklet Talking to children when an adult has cancer
includes discussion about sensitive topics. We can send
you a copy.
We also have a video that you may find useful on our
website at macmillan.org.uk/talkingtochildren
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.
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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 and that
you have lost control. Many people feel this way, but over time
they usually find things to do that can help them cope.
It’s common to have times when you feel too tired and helpless
even to think about what could help. You’ll have good and bad
days, and it’s important for you and your family to realise this.
Let your doctor or nurse know if you’re overwhelmed by these
feelings. You may have depression, which they should be able
to treat.
For some people it’s important to try to live life as normally
as possible. This can include staying in touch with friends and
trying to carry on with your usual activities.
An experience of cancer may help some people decide on
new priorities in their lives. This may mean spending more
time with family, going on a holiday, or taking up a new hobby.
Just thinking about these things and making plans can help you
realise that you still have choices.
Getting more information about your treatment
Understanding the cancer and its treatment helps many people
to cope. It helps you discuss plans for treatment, tests and
check-ups with your doctors and nurses, and means you can
play a real part in the decisions that are made. Being involved
in these choices builds confidence and can help give you back
control of your life.
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Finding ways to cope
Some people may decide to improve their general health
by eating a healthier diet or by getting fitter. Finding a
complementary therapy that helps you to relax can be a
positive way of managing some of the symptoms of your illness.
We have booklets called Diet and cancer, Physical activity
and cancer and Cancer and complementary therapies,
which we can send you.
Who can help?
Many people are available to help you and your family.
Different people can offer support in the community.
District nurses work closely with GPs and, if needed, they can
make regular visits to patients and their families at home.
A social worker can give you information about social services
and other benefits you may be able to claim while you are
ill. For example, you may be entitled to Meals on Wheels,
a home helper or money to help with hospital transport fares.
The social worker may also be able to help arrange childcare
during and after treatment and, if necessary, help with the cost
of childminders.
Some people need more than advice and support. You may
find that the impact of cancer leads to depression, feelings of
helplessness or anxiety. There is specialist help available to
help you cope with these emotions. Often it’s easier to talk to
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someone who is not directly involved with your illness. You can
ask your hospital consultant or GP to refer you to a counsellor
who specialises in the emotional problems of people with
cancer, and their relatives.
Our cancer support specialists on freephone 0808 808 00 00
can tell you more about counselling and let you know about
services in your area.
Some hospitals have their own emotional support services,
with specially trained staff. Nurses may have had training in
counselling and can also give advice about practical problems.
Some people find comfort in religion at this time, and it may
help them to talk to a local minister, hospital chaplain or other
spiritual or religious adviser.
In many areas of the country there are also specialist nurses
called palliative care nurses. They’re experienced in assessing
and treating your symptoms, and they can offer you support
from when you’re diagnosed with cancer. They can also visit
you at home and support you and your family. Some palliative
care nurses are linked to the local hospice. Your GP can usually
arrange for you to be seen by a specialist nurse at home.
Palliative care nurses are sometimes referred to as Macmillan
nurses. However, many Macmillan professionals are nurses
who have specialist knowledge about a particular type of
cancer. You may see them when you’re at a clinic or in hospital.
Marie Curie nurses help to care for people who are having
treatment to control their symptoms and want to stay in their
own homes. They provide nursing care during the day and
overnight. The district nurse usually decides whether to request
a Marie Curie nurse.
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Financial help and benefits
If you are employed and unable to work, your employer can
pay you Statutory Sick Pay (SSP) for a maximum of 28 weeks.
If you are still unable to work after this period, you may be able
to claim Employment and Support Allowance (ESA).
There are two parts to ESA: a contributory part, which is
dependent on how much national insurance you have paid,
and a means-tested part, which is dependent on your income
and savings. You may get either or both parts.
ESA is paid at a basic rate for the first 13 weeks. During this
time you’ll have to take part in a work capability assessment
and attend a work-focused interview. After the 13-week period
you’ll be assessed and placed into one of two groups. If you
are found to have limited capability for work you’ll be placed
in the support group, and if you are found not to have limited
capability for work you’ll be placed in the work-related
activity group.
If you’re receiving radiotherapy or intravenous (by injection
into a vein) chemotherapy, you will automatically be assessed
as having limited capability for work and will be placed in the
support group. People in the work-related activity group will
have to attend five more work-focused interviews, which aim to
help them get back into work.
An additional payment will be paid to anyone in the support
group and a small additional payment will be paid to anyone
in the work-related activity group.
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If you are self-employed you can claim ESA as long as you
have paid the correct level of National Insurance contributions.
People who have not paid these may qualify for ESA under the
means-tested route.
If you are ill and not able to claim, remember to ask your GP
for a medical certificate for the period of your illness. If you are
in hospital, ask your doctor or nurse for a certificate to cover
the time that you are an inpatient. This is necessary if you need
to claim a benefit.
You may qualify for Disability Living Allowance (DLA) if you are
under 65, or for Attendance Allowance (AA) if you are over 65.
There is a fast-track claim for people who may not live longer
than six months. People who claim under this ‘special rule’
need to get their doctor to complete a form for either benefit.
It’s impossible to tell exactly how long someone may live
and many people with advanced cancer may be entitled to
this benefit. Special rules payments of AA and the DLA care
component are reviewed after three years.
Information about benefits and financial help
For more information about benefits and financial support
please call us on 0808 808 00 00. You may also find our
booklet Help with the cost of cancer useful.
You can find out more about benefits from your local
Citizens Advice or by calling the Benefit Enquiry Line on
0800 882 200. You can also visit the Department for Work
and Pensions website at dwp.gov.uk
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Direct payments
If your assessment shows that you need care from social services,
you may be entitled to get direct payments from your local
authority. This means that you are given payments to organise
social services yourself, rather than the local social services
paying for and organising them for you. You can get more
information about direct payments from the Department of
Health website at dh.gov.uk or from your local authority.
Insurance
After having treatment for cancer, it can be more difficult to
get life or travel insurance. An Independent Financial Adviser
(IFA) can help you with life insurance and can find the best
deal for your particular situation. You can find a local IFA by
referral from family or friends, looking in your phone book,
or by contacting the Personal Finance Society or Unbiased Ltd.
See page 96 for details.
We can send you more information about travel and
cancer. We also have a booklet about getting travel
insurance, which has a list of companies who offer
insurance to people with medical conditions including
cancer. This information is also on our website.
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Work
You may need to take time off work during your treatment,
and for a while afterwards. It can be hard to judge the best time
to go back to work or whether to go back at all. Your decision
is likely to depend mainly on the type of work you do and how
much your income is affected. Your consultant, GP or specialist
nurse can help you decide when and if you should go back to
work. It’s important to do what is 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.
Many people find that going back to work as soon as they feel
strong enough gives them a chance to put their worries to one
side by becoming involved with their job and colleagues again.
It can help to talk to your employer about the situation – it may
be possible for you to work part-time or job share.
On the other hand, it can take a long time to recover fully from
cancer treatment, and it may be many months before you feel
ready to return to work. It’s important not to feel pressurised
into taking on too much, too soon. If you have a disability
caused by the cancer, your employer can get specialist help to
enable you to work.
Our booklets Work and cancer and Self-employment
and cancer give information about employment rights,
disability rights and financial issues for people with
cancer. We also have a booklet called Working while
caring for someone with cancer.
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How we can help you
Macmillan Cancer
Support
89 Albert Embankment,
London SE1 7UQ
General enquiries
020 7840 7840
Questions about living
with cancer? Call free
on 0808 808 00 00
(Mon–Fri, 9am–8pm)
Alternatively, visit
macmillan.org.uk
Hard of hearing?
Use textphone 0808 808 0121,
or Text Relay.
Non-English speaker?
Interpreters available.
Macmillan Cancer Support
improves the lives of people
affected by cancer. We are a
source of support: providing
practical, medical, emotional
and financial help. We are a
force for change: listening to
people affected by cancer
and working together to
improve cancer care locally
and nationally.
86
We have a wide variety of
services and activities that
might be of help and interest.
Clear, reliable
information
We provide expert, up-to-date
information about cancer –
the different types, tests and
treatments, and living with
the condition.
We can help you by phone,
email, via our website and
publications, or in person.
And our information is free
to all – people with cancer,
families and friends, as well
as professionals.
Just call and speak to one of
our cancer support specialists.
Or visit one of our information
and support centres – based
in hospitals, libraries and
mobile centres – and speak
with someone face-to-face.
Need out-of-hours support?
Our phone service is open
Monday–Friday, 9am–8pm.
At any time of day, you can
find a lot of information on
our website, macmillan.
org.uk, or join our online
community at macmillan.org.
uk/community For medical
attention out of hours, please
contact your GP for their
‘out-of-hours’ service.
The following organisations
can offer immediate
information and support:
Understanding primary bone cancer
Someone to talk to
When you, or someone close
to you, has cancer, it can be
difficult sometimes to talk
about how you’re feeling.
You can call our cancer
support specialists to talk
about how you feel and
what’s worrying you.
Alternatively, we can help you
find support in your local area,
so you can speak face-to-face
with people who understand
what you’re going through.
NHS Direct 0845 4647
www.nhsdirect.nhs.uk
NHS Scotland
08454 24 24 24
www.nhs24.com
Samaritans 0845 790 9090
www.samaritans.org
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Understanding primary bone cancer
Professional help
You can find people affected
by cancer who meet in
Our Macmillan nurses, doctors your area to support each
and other health and social
other by calling us or by
care professionals offer expert visiting macmillan.org.uk/
treatment and care. They help selfhelpandsupport
individuals and families deal
You can also share your
with cancer from diagnosis
experiences, ask questions
onwards, until people decide
and get support from others
they no longer need this help. by heading to our online
community at macmillan.org.
You can ask your GP, hospital uk/community
consultant, district nurse or
hospital ward sister if there
Review our information
are any Macmillan
Help us make our resources
professionals available in
even better for people affected
your area, or call us.
by cancer. Being one of our
reviewers gives you the chance
Support for each other
to comment on a variety of
information including booklets,
No one knows more about
fact sheets, leaflets and
the impact cancer has on a
website text.
person’s life than those who
have been affected by the
disease themselves. That’s why
we help to bring people with
cancer and carers together in
their communities and online.
88
Understanding primary bone cancer
Financial and
work-related support
Helping you to
help yourself
Having cancer can bring extra
costs such as hospital parking,
travel fares and higher heating
bills. Some people may have
to stop working.
Many people affected by
cancer want to take control of
their lives again and regain
their independence. We help
you do this by providing
opportunities to learn how
to manage the impact cancer
can have on your life.
If you’ve been affected in this
way, we can help. All you
need to do is call our helpline
and one of our specialists will
tell you about the benefits and
other financial help you may
be entitled to.
We can also give you
information about your
rights as an employee, and
help you find further support.
You can do this online through
our Learn Zone – macmillan.
org.uk/learnzone – which
offers a variety of courses
and information.
We produce booklets on
specific cancers and treatments
to help you manage the
disease and side effects.
And we provide a variety
of face-to-face training that
offers practical advice to help
you help yourself.
89
Understanding primary bone cancer
Other useful organisations
Bone cancer and related
support organisations
Association for Children
with Upper Limb
Deficiency (REACH)
PO Box 54, Helston,
Cornwall TR13 8WD
Tel 0845 1306 225
Email [email protected]
www.reach.org.uk
Provides support and
information to the families
and carers of children
with upper limb deficiency.
Branches across the country
provide the opportunity for
families to meet locally.
throughout Britain and Ireland.
Promotes research into the
causes and treatment of
primary bone cancer, and in
particular of osteosarcoma
and Ewing’s sarcoma.
Limbless Association
Jubilee House, 3 The Drive,
Brentwood CM13 3FR
Tel 01277 725 182 or 01277
725 184 or 01277 725 186
Email [email protected]
www.limbless-association.
org
UK charity for people
with limb-loss, their family,
friends and carers, and the
Bone Cancer Research Trust industry and healthcare
Suite 7, Gledhow Mount
professionals who support
Mansion, Roxholme Grove,
them. Offers free, friendly
Leeds LS7 4JJ
and impartial information
Tel 0113 262 1852
on all aspects of limb-loss.
Email [email protected]
Provides a national voice
www.bonecancerresearch. for UK prosthetic patients,
org.uk
encouraging best practice in
An alliance of local charities,
the industry and promoting
medical practitioners,
equal opportunities in the
primary bone cancer patients
community.
and their family and friends
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Understanding primary bone cancer
RADAR (Royal Association
CLIC Sargent: Caring for
for Disability Rights)
Children and Young People
12 City Forum, 250 City Road, with Cancer
London EC1V 8AF
Griffin House,
Tel 020 7250 3222
161 Hammersmith Road,
Minicom 020 7250 4119
London W6 8SG
Email [email protected]
General Enquiries
www.radar.org.uk
0845 301 0031
A national organisation run
Child Cancer Helpline
by and working for disabled
0800 197 0068
people. Represents its
(Mon–Fri, 9am–5pm)
members by fast-tracking
Email
their opinions and concerns
[email protected]
to policy-makers and
www.clicsargent.org.uk
legislators in Westminster
Provides a range of support to
and Whitehall, and by
children with cancer and their
launching its own campaigns
families and carers – both
to promote equality for all
during and after treatment,
disabled people.
in hospital and at home.
Sarcoma UK
49–51 East Road,
London N1 6AH
Tel 020 7250 8271
Email [email protected]
www.sarcoma.org.uk
A charity for sarcoma patients
in the UK. Has useful contacts
for support, and a list of links
to other quality websites with
information about sarcomas.
You can register free to see an
online newsletter and access
an email support forum.
Teenage Cancer Trust
3rd Floor, 93 Newman Street,
London W1T 3EZ
Tel 020 7612 0370
Email from the website
www.teenagecancertrust.org
Devoted to improving the lives
of teenagers and young adults
with cancer. Runs a support
network for young people with
cancer and their families and
friends. Raises funds to build
dedicated teenage cancer
units in hospitals.
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Understanding primary bone cancer
General cancer
support organisations
Cancer Black Care
79 Acton Lane,
London NW10 8UT
Tel 020 8961 4151
(Mon–Fri, 9.30am–4.30pm)
Email
[email protected]
www.cancerblackcare.
org.uk
Offers information
and support for people
with cancer from ethnic
communities, their families,
carers and friends. Welcomes
people from different ethnic
groups including African,
Asian, Turkish and AfricanCaribbean communities.
Maggie’s Cancer
Caring Centres
8 Newton Place,
Glasgow G3 7PR
Tel 0300 123 1801
Email
[email protected]
www.maggiescentres.org
Located throughout the
country, Maggie’s Centres
offer free, comprehensive
support for anyone affected
by cancer. You can access
information, benefits
advice, and emotional or
psychological support.
Tak Tent Cancer
Support – Scotland
Flat 5, 30 Shelley Court,
Gartnavel Complex,
Glasgow G12 0YN
Irish Cancer Society
Tel 0141 211 0122
43–45 Northumberland Road, Email [email protected]
Dublin 4, Ireland
www.taktent.org
Cancer helpline
Offers information and
1800 200 700 (Mon–Thurs,
support for cancer patients,
9am–7pm, Fri, 9am–5pm)
families, friends and
Email [email protected] healthcare professionals.
www.cancer.ie
Runs a network of support
Operates Ireland’s only
groups across Scotland. Also
freephone cancer helpline,
provides counselling and
which is staffed by qualified
complementary therapies.
nurses trained in cancer care.
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Tenovus
9th Floor, Gleider House,
Ty Glas Road, Llanishen,
Cardiff CF14 5BD
Freephone helpline
0808 808 1010
Tel 029 2076 8850
Email [email protected]
www.tenovus.org.uk
Provides a range of services
to people with cancer and
their families, including
counselling and a freephone
cancer helpline.
Ulster Cancer Foundation
40–44 Eglantine Avenue,
Belfast BT9 6DX
Freephone helpline
0800 783 3339
Tel 028 9066 3281
Helpline email
[email protected]
Email [email protected]
www.ulstercancer.org
Provides a range of services
to people with cancer and
their families including a free
telephone helpline, which is
staffed by specially trained
nurses with experience in
cancer care.
Understanding primary bone cancer
Counselling and
emotional support
Association for Family
Therapy (AFT)
7 Executive Suite, St James
Court, Wilderspool Causeway,
Warrington WA4 6PS
Tel 01925 444 414
Email [email protected]
www.aft.org.uk
A multidisciplinary alliance
of professionals working
therapeutically with children,
adults and their families.
You can search for a family
therapist from the website.
British Association
for Counselling and
Psychotherapy (BACP)
BACP House,
15 St John’s Business Park,
Lutterworth LE17 4HB
Tel 01455 883 300
Email [email protected]
www.bacp.co.uk
Aims to promote awareness
and availability of
counselling, and to signpost
people to appropriate services.
The website has a database
where you can search for a
qualified counsellor.
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Understanding primary bone cancer
Christian Lewis Trust
Children’s Cancer Society –
Befriending Service
62 Walter Road,
Swansea SA1 4PT
Tel 01792 480 500
Email enquiries@
christianlewistrust.org
www.christianlewistrust.
co.uk
Aims to improve the quality
of life for children and young
people affected by cancer
by providing emotional
and practical support that
complements and adds value
to the services provided by
statutory services.
The Daisy Network
PO Box 183,
Rossendale BB4 6WZ
Email
[email protected]
www.daisynetwork.org.uk
Offers support to women who
have experienced a premature
menopause due to a medical
condition or cancer treatment.
Provides information, and has
a network of women who are
willing to share their personal
experiences of premature
menopause. For information
94
on how to join, send an SAE
to the above address or visit
the website.
The United Kingdom
Council for
Psychotherapy (UKCP)
2nd Floor, Edward House,
2 Wakley Street,
London EC1V 7LT
Tel 020 7014 9955
Email [email protected]
www.psychotherapy.org.uk
A membership organisation
with over 75 training and
listing organisations, and over
6,600 individual practitioners.
UKCP holds the national
register of psychotherapists
and psychotherapeutic
counsellors, listing those
practitioner members who
meet exacting standards and
training requirements.
Youth Access
1–2 Taylors Yard,
67 Alderbrook Road,
London SW12 8AD
Tel 020 8772 9900 (Mon–Fri,
9.30am–1pm and 2–5.30pm)
Email
[email protected]
www.youthaccess.org.uk
National membership
organisation for young
people’s information, advice,
counselling and support
services. You can find your
local Youth Access service
from the website.
Financial or legal advice
and information
Benefit Enquiry Line
Warbreck House, Warbreck
Hill Road, Blackpool FY2 0YE
Tel 0800 882 200
Textphone 0800 243 355
Email [email protected]
www.direct.gov.uk/
disabilitymoney
Provides advice about benefits,
and can also provide help
with the completion of some
disability-related claim packs.
Citizens Advice
Provides free, confidential,
independent advice on a
variety of issues including
financial, legal, housing and
employment. Find contact
details for your local office
in the phone book or at
citizensadvice.org.uk
Understanding primary bone cancer
Find advice online, in a
range of languages, at
adviceguide.org.uk
Citizens Advice Scotland
www.cas.org.uk
The Law Society
113 Chancery Lane,
London WC2A 1PL
Tel 0870 606 2555
Email info.services@
lawsociety.org.uk
www.lawsociety.org.uk
Represents solicitors in England
and Wales, and can provide
details of local solicitors.
Law Society of Scotland
26 Drumsheugh Gardens,
Edinburgh EH3 7YR
Tel 0131 226 7411
Email
[email protected]
www.lawscot.org.uk
Law Society of
Northern Ireland
96 Victoria Street,
Belfast BT1 3GN
Tel 028 9023 1614
Email [email protected]
www.lawsoc-ni.org
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Understanding primary bone cancer
Personal Finance Society –
‘Find an Adviser’ service
42–48 High Road,
London E18 2JP
Tel 020 8530 0852
Email [email protected]
www.findanadviser.org
The UK’s largest professional
body for independent financial
advisers. Use the ‘Find an
Adviser’ website to find
qualified financial advisers
in your area.
Unbiased Ltd
117 Farringdon Road,
London EC1R 3BX
Email
[email protected]
www.unbiased.co.uk
Helps people search for
details of local member
independent financial
advisers via the consumer
hotline and online searches
at unbiased.co.uk and
moneyadviceservice.org.uk
Support for carers
Turn2Us
1 Derry Street,
Carers Direct
London W8 5HY
PO Box 4338,
Helpline 0808 802 2000
Manchester M61 0BY
(Mon–Fri, 8am–8pm)
Helpline 0808 802 0202
Email [email protected]
(Mon–Fri, 8am–9pm,
www.turn2us.org.uk
weekends, 11am–4pm)
Provides an online service to
Email from the website
help the millions of people
www.nhs.uk/carersdirect/
in financial need in the UK.
Pages/CarersDirectHome.
Use its website free to see
information about the benefits aspx
Aims to offer all the information
and grants available to you
you should need as a carer to
from both statutory and
access the financial help you’re
voluntary organisations.
entitled to, as well as advice
You can apply for support
on getting a break from caring,
directly from the website.
going to work and much more.
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Carers UK
20 Great Dover Street,
London SE1 4LX
Tel 020 7378 4999
Carers line 0808 808 7777
(Weds–Thurs, 10am–12pm
and 2–4pm)
Email [email protected]
Advice line email
[email protected]
www.carersuk.org
Offers information and support
to carers. Can put you in
contact with support groups
for carers in your area. Has
national offices for Scotland,
Wales and Northern Ireland:
Carers Scotland
The Cottage, 21 Pearce
Street, Glasgow G51 3UT
Tel 0141 445 3070
Email
[email protected]
www.carersuk.org/
scotland
Carers Wales
River House, Ynsbridge
Court, Gwaelod-y-Garth,
Cardiff CF15 9SS
Tel 029 2081 1370
Email [email protected]
www.carersuk.org/wales
Understanding primary bone cancer
Carers Northern Ireland
58 Howard Street,
Belfast BT1 6PJ
Tel 028 9043 9843
Email [email protected]
www.carersuk.org/
northernireland
Crossroads Care
10 Regent Place, Rugby,
Warwickshire CV21 2PN
Tel 0845 450 0350
Email from the website
www.crossroads.org.uk
Provides services through a
network of local providers
across England and Wales,
each offering Crossroads’
core service where a trained
carer support worker comes
into the home to take over the
caring responsibilities. Each
charity has its own funding
and can provide other services
according to funding and
demand at a local level.
Crossroads Caring
Scotland
24 George Square,
Glasgow G2 1EG
Carers’ information and
support line
0141 353 6504
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Understanding primary bone cancer
Email [email protected]
www.crossroadsscotland.co.uk
Provides short breaks for
carers within their own
homes. Has services
throughout Scotland that
provide practical support
for carers of all ages.
Crossroads Caring for
Carers (Northern Ireland)
7 Regent Street,
Newtownards, Co Down,
Northern Ireland BT23 4AB
Tel 028 9181 4455
Email
[email protected]
www.crossroadscare.
co.uk
Provides respite for carers
by providing them with a
much-needed break,
giving them peace of
mind that their loved one
is well taken care of by a
Crossroads care attendant.
The Princess Royal Trust
for Carers
Unit 14, Bourne Court,
Southend Road, Woodford
Green, Essex IG8 8HD
98
Tel 0844 800 4361
Email [email protected]
www.carers.org
Largest provider of carers’
support services in the UK.
Through its network of 144
independently managed
carers’ centres and its
interactive websites, the trust
currently provides information,
advice and support services to
over 400,000 carers.
Young Carers Initiative
The Children’s Society
Edward Rudolf House,
Margery Street,
London WC1X 0JL
Tel 0845 300 1128
Email supportercare@
childrenssociety.org.uk
www.youngcarer.com
Works nationally to promote
good practice for young carers
and their families. From the
website you can search for
local young carers’ projects
in the UK, and also access
information for young carers
about health, school, the
internet, being heard, who’s
who and the Purple News
young carers’ newsletter.
Young Carers Net (YCNet)
Princess Royal Trust for Carers,
Unit 14, Bourne Court,
Southend Road, Woodford
Green, Essex IG8 8HD
Tel 0844 800 4361
Email
[email protected]
www.youngcarers.net
Provides information and
support to approximately
25,000 young carers through
its 85 young carers’ services.
Provides online discussion
forums and advice for young
people aged 18 and under
in the UK who help to look
after someone in their family
with an illness, disability, drug/
alcohol addiction or mental
health condition.
Understanding primary bone cancer
who travel either as drivers or
passengers. It allows badge
holders parking concessions
so they can park close to
their destination. The scheme
operates throughout the UK,
and is administered by local
authorities who deal with
applications and issue badges.
Assist UK
1 Portland Street,
Manchester M1 3BE
Tel 0161 238 8776
Email
[email protected]
www.assist-uk.org
An independent voluntary
organisation with a network
of Disabled Living Centres
throughout the UK. Centres
offer advice and a range
Equipment and advice on of products and equipment
living with disability
designed to make life easier
for people who have difficulty
The Blue Badge Scheme
with daily activities.
(Department for Transport)
www.dft.gov.uk/
British Red Cross
transportforyou/access/
44 Moorfields,
bluebadge
London EC2Y 9AL
Provides a national
Tel 0844 871 11 11
arrangement of parking
Email
concessions for people with
[email protected]
severe walking difficulties
www.redcross.org.uk
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Understanding primary bone cancer
Offers a number of services
for people with a disability,
including a medical
equipment loan service
and a transport service.
DIAL UK
St Catherine’s, Tickhill Road,
Balby, Doncaster DN4 8QN
Tel 01302 310 123
Email informationenquiries@
dialuk.org.uk
www.dialuk.info
A national network of
approximately 120 local
Disability Information and
Advice Line services (DIALs)
run by and for disabled
people. Based throughout
the UK, the services provide
information and advice to
disabled people and others
on all aspects of living with a
disability. You can search for
your local DIAL on the website.
Disability Alliance
Universal House,
88–94 Wentworth Street,
London E1 7SA
Tel (voice and minicom)
020 7247 8776
Email
[email protected]
100
www.disabilityalliance.org
A national charity that works
to improve the living standards
of disabled people. Provides
information on social security
benefits and disability rights.
Disabled Living
Foundation (DLF)
380–384 Harrow Road,
London W9 2HU
Helpline 0845 130 9177
(Mon–Fri, 10am–4pm)
Tel 020 7289 6111
Email [email protected]
www.dlf.org.uk
A national charity that provides
free, impartial advice about all
types of disability equipment
and mobility products through
its helpline, website and
demonstration centre.
Support for older people
Age UK
Tavis House, 1–6 Tavistock
Square, London WC1H 9NA
Advice Line 0800 169 6565
(daily, 8am–7pm)
Email [email protected]
www.ageuk.org.uk
Age UK, which formed when
Age Concern and Help the
Aged merged, provides
information and advice on
anything from health to
housing on their free national
information line, and publishes
impartial and informative fact
sheets and advice guides.
Age Scotland
Causewayside House,
160 Causewayside,
Edinburgh EH9 1PR
Tel 0845 125 9732
Email
enquiries@ageconcernand
helptheagedscotland.org.uk
Understanding primary bone cancer
Advanced cancer/
end-of-life care
Help the Hospices
Hospice House,
34–44 Britannia Street,
London WC1X 9JG
Tel 020 7520 8200
Email
[email protected]
www.helpthehospices.org.
uk
A charity providing a wide
range of information relevant
to living with advanced illness.
Compiles a comprehensive
directory of hospice services,
as well as practical booklets.
These are all available free via
the website.
Age Cymru
Ty John Pathy, Units 13/14
Neptune Court, Vanguard
Way, Cardiff CF24 5PJ
Marie Curie Cancer Care
Tel 0800 169 6565
Email
89 Albert Embankment,
[email protected] London SE1 7TP
Freephone 0800 716 146
Age Northern Ireland
Tel 020 7599 7777 (England)
3 Lower Crescent,
0131 561 3900 (Scotland)
Belfast BT7 1NR
01495 740 888 (Wales)
Tel 0808 808 7575
028 9088 2060
Email
(Northern Ireland)
info@ageconcern
Email [email protected]
helptheagedni.org
www.mariecurie.org.uk
Marie Curie nurses provide
free end-of-life care to people
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Understanding primary bone cancer
with cancer in their own
homes, 24 hours a day,
365 days a year. There are
also Marie Curie hospices
across the UK.
Further
resources
Related Macmillan
information
You may want to order some
of the booklets mentioned in
this booklet. These include:
• A parent’s guide to
children’s cancers
• Cancer and
complementary therapies
• Controlling cancer pain
• Controlling the symptoms
of cancer
• Diet and cancer
• Getting travel insurance
when affected by cancer
• Giving up smoking
• Help with the cost of cancer
• How are you feeling?
• Life after cancer treatment
• Lost for words: how to talk to
someone with cancer
102
• Physical activity and
cancer treatment
• Self-employment and cancer
• Talking about your cancer
• Talking to children when an
adult has cancer
• Understanding cancer
research trials (clinical trials)
• Understanding chemotherapy
• Understanding high-dose
treatment with stem
cell support
• Understanding radiotherapy
• Understanding secondary
cancer in the bone
• Work and cancer
• Working while caring for
someone with cancer
• Your feelings after
cancer treatment
To order, visit be.macmillan.
org.uk To order the fact
sheets mentioned in this
booklet, call 0808 808 00 00.
This information is also
available online.
Understanding primary bone cancer
Macmillan audio
resources
Our high-quality audio
materials, based on our
variety of booklets, include
information about cancer
types, different treatments
and living with cancer.
To order your free CD
visit be.macmillan.org.uk
or call 0808 808 00 00.
Useful websites
A lot of information about
cancer is available on the
internet. Some websites
are excellent, others have
misleading or out-of-date
information. The sites listed
below are considered by
nurses and doctors to contain
accurate information and are
regularly updated.
Macmillan Cancer Support
www.macmillan.org.uk
Find out more about living
with the practical, emotional
and financial effects of cancer.
Our website contains expert,
accurate and up-to-date
103
Understanding primary bone cancer
information on cancer and its
treatment, including:
•
all the information from
our 100+ booklets and
350+ fact sheets
• videos featuring reallife stories from people
affected by cancer and
information from medical
professionals
www.cancer.org
(American Cancer Society)
Nationwide community-based
voluntary health organisation
dedicated to eliminating
cancer as a major health
problem. It aims to do this
through research, education,
advocacy and service.
www.cancerhelp.org.uk
(Cancer Research UK)
Contains patient information
on all types of cancer and has
a clinical trials database.
•
how Macmillan can help,
the services we offer and
where to get support
•
how to contact our
www.healthtalkonline.org
cancer support specialists,
and
including an email form for www.youthhealthtalk.org
sending your questions
(site for teens and young adults)
Both websites contain
local support groups
information about some
search, links to other
cancers and have video and
cancer organisations
audio clips of people talking
and a directory of
about their experiences of
information materials
cancer and its treatments.
•
•
104
a huge online community
of people affected by
cancer sharing their
experiences, advice
and support.
www.cancer.gov
(National Cancer Institute –
National Institute of
Health – USA)
Gives comprehensive
information on cancer and
its treatments.
www.nhs.uk
(NHS Choices)
NHS Choices is the online
‘front door’ to the NHS. It is
the country’s biggest health
website and gives all the
information you need to make
decisions about your health.
www.nhsdirect.nhs.uk
(NHS Direct Online)
NHS health information
site for England – covers
all aspects of health,
illness and treatments.
www.nhs24.com
(NHS 24 in Scotland)
Health information site
for Scotland.
www.nhsdirect.wales.nhs.
uk (NHS Direct Wales)
Provides health information
for Wales.
www.n-i.nhs.uk
(Health and Social Care
in Northern Ireland)
The official gateway to
health and social care
services in Northern Ireland.
Understanding primary bone cancer
www.patient.co.uk
(Patient UK)
Provides good-quality
information about health and
disease. Includes evidencebased information leaflets on
a wide variety of medical and
health topics. Also reviews
and links to many health
and illness-related websites.
www.riprap.org.uk
(Riprap)
Developed especially for
teenagers who have a parent
with cancer.
www.click4tic.org.uk
(TIC – Teen Info on Cancer)
Macmillan’s cancer
information site written
specifically for young people.
Get advice and support on
how to cope with cancer,
and join a community of
young people.
105
Understanding primary bone cancer
Questions you might like to
ask your doctor or nurse
You can fill this in before you see the doctor or nurse, and then
use it to remind yourself of the questions you want to ask, and
the answers you receive.
1.
Answer
2.
Answer
3.
Answer
4.
Answer
5.
Answer
6.
Answer
106
Understanding primary bone cancer
Notes
107
Understanding primary bone cancer
Notes
108
Understanding primary bone cancer
Disclaimer
We make every effort to ensure that the information we provide is accurate, but it
should not be relied upon to reflect the current state of medical research, which is
constantly changing. If you are concerned about your health, you should consult
a doctor. Macmillan cannot accept liability for any loss or damage resulting from
any inaccuracy in this information or third-party information, such as information
on websites to which we link. We feature real-life stories in all of our articles.
Some photographs are of models.
Thanks
This booklet has been written, revised and edited by Macmillan Cancer Support’s
Cancer Information Development team. It has been approved by our medical editor,
Dr Terry Priestman, Consultant Clinical Oncologist.
With thanks to: Professor T Briggs, Consultant Orthopaedic Surgeon; Mr Stephen
Cannon, Consultant Orthopaedic Surgeon; Dr Anna Cassoni, Consultant Clinical
Oncologist; Professor John Kanis, Professor in Metabolic Bone Diseases; Anita Pabla,
Macmillan Sarcoma Nurse Specialist; Dr David Peake, Consultant Clinical Oncologist;
and the people affected by cancer who reviewed this edition.
Sources
Cancer Research UK. Bone cancer UK statistics. www.cancerhelp.org.uk
(accessed December 2010).
DeVita VT, et al. Cancer: principles and practice of oncology. 8th edition. 2008.
Lippincott, Williams and Wilkins.
Gelderblom A, Bovee J. Chondrosarcoma. 2010. www.uptodate.com
(accessed December 2010).
Grimer R, et al. UK guidelines for the management of bone sarcomas. Sarcoma.
2010. 2010: 317–462.
Hornicek F. Bone sarcomas: principles of surgical management. 2010.
www.uptodate.com (accessed December 2010).
109
Understanding primary bone cancer
Improving outcomes for people with sarcoma: the manual. 2006. National Institute
for Health and Clinical Excellence (NICE).
Improving outcomes in children and young people with cancer: the manual. 2005.
National Institute for Health and Clinical Excellence (NICE).
National Comprehensive Cancer Network. Bone cancer. NCCN guidelines for
patients version 1.2011. 2011.
Referral guidelines for suspected cancer. 2005. National Institute for Health and
Clinical Excellence (NICE).
Rosenthal D, Hornicek F. Bone tumours: diagnosis and biopsy techniques. 2010.
www.uptodate.com (accessed December 2010).
Shehadeh A, et al. Late complications and survival of endoprosthetic reconstruction
after resection of bone tumours. Clinical orthopaedics and related research. 2010.
468: 2885–95.
Tan PK, Tan MH. Functional outcome study of mega-endoprosthetic reconstruction
in limbs with bone tumour surgery. Annals academy of medicine no 3. 2009.
Vol 38: 192–196.
UK guidelines for the management of soft tissue sarcomas. The British Sarcoma
Group. 2010.
110
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