Primary Bone Cancer A Media Guide
The key facts about primary bone cancer:
Each year in the UK and
Ireland around 550 new
cases of primary bone
cancer are diagnosed and
around 300 people die
from these cancers
Only around
half of those
diagnosed will
survive the next
five years
Around 10 per cent of
osteosarcoma patients
who survive will
require a full or partial
limb amputation
Unlike many other
cancers, survival
rates among primary
bone cancer sufferers
haven’t improved in
the past 25 years
We need your help
We
W hope you will be able to:
IT ’S NATIONAL
BONE C ANWCEEERK
AWARENESS
BER 2013
5TH-12TH OCTO
H
Help
us raise awareness of primary bone cancer and the impact
it has on young people and their families.
Help us educate GPs and other medical professionals in
H
diagnosing possible PBC cases and referring them for X-rays
d
m
more quickly.
A
And help us in the battle to secure more funding for research
iinto the treatment of bone cancer patients that could
ssignificantly improve a child’s chances of survival.
What can BCRT offer journalists?
•
Access to current and former primary bone cancer
patients with powerful stories to tell
•
•
Access to families who have suffered as a result of bone •
cancer
Interviews with PBC medical experts, leading
researchers and charity representatives
Facts and figures on primary bone cancer, as well as
detailed research reports
Bone Cancer Awareness Week
5th to 12th October 2013
Bone Cancer Awareness Week is our major annual
awareness-raising event and has been running
since 2008.
It provides us with a great opportunity to highlight the
problems of a lack of understanding among the general
public and healthcare professionals – particularly GPs – of
primary bone cancer, and the delays to diagnosis that often
occur as a result.
Supporters organise events across the country as part of
Bone Cancer Awareness Week, from sponsored swims and
walks, to coffee mornings and races.
The ‘Bake it for Bone Cancer’ initiative started in 2009 and
will again play a key role in supporter fundraising activities
during this year's Awareness Week.
Frequently Asked Questions
What is Primary Bone Cancer?
Primary bone cancer is the name given to cancer that starts As patients become older, a smaller proportion of tumours
in the bones, rather than cancer that has spread to the
arise in the limbs, and tumours of the pelvis become more
bones (metastasised) from other parts of the body.
common.
Primary bone cancer can affect people of all ages, but it
is more common in children, teenagers and young adults
than it is for other age groups.
Around 70% of bone sarcomas diagnosed in patients under
the age of 20 years arise in the limbs, compared to around
40% in patients aged 40 years and over.
The two most common types of primary bone cancer in
young people are osteosarcoma and Ewing’s sarcoma.
Chondrosarcoma is the most common type of adult
primary bone cancer.
There is a slightly higher incidence of primary bone cancer
in males than females.
How many people are a ected?
Around 550 people in the UK & Ireland are newly-diagnosed
with primary bone cancer each year and around 300 people
die.
Osteosarcoma occurs most commonly between the ages
of 10 and 24, with elderly people who have an underlying
condition called Paget’s disease also at risk. Osteosarcoma
usually occurs in growing bones, particularly the arms, legs Approximately one in every 500 cancer patients has been
and knees.
diagnosed with primary bone cancer.
Ewing’s sarcoma also occurs most commonly in children
and young people between the ages of 10 and 20. It is very
rare in people over the age of 30. It can occur in any bone,
or surrounding tissue, in the body.
A third form of primary bone cancer, chondrosarcoma, can
affect people of any age. However, it is more common in
the over-40s. Chondrosarcoma originates in cartilage.
The most common sites for bone sarcoma to arise are
within the bones of the lower limbs (38%), the pelvic bones
(16%) and the bones of the upper limbs (14%).
“Around 70% of bone sarcomas diagnosed in
patients under the age of 20 years arise in the
limbs, compared to around 40% in patients aged
40 years and over.”
About the Bone Cancer Research Trust
The Bone Cancer Research Trust promotes research into the causes and treatment of primary bone
cancer and, in particular, of osteosarcoma and Ewing’s sarcoma.
arcoma. The Trust aims to support patients aand
families affected by bone cancer.
The charity’s mission is to ‘improve outcomes for people
with primary bone cancer through research, awareness,
information and support’.
As bone cancer is a rare cancer, research into primary
bone cancer currently gets very little funding from other
sources, and it is for this reason that BCRT was established
seven years ago as an alliance of established local charities
and groups of family and friends of bone cancer patients
throughout the UK and Ireland.
Since being formally registered as a charity in 2006, BCRT
has funded 35 different primary bone cancer research
projects, totalling more than £1.5 million in research
grant spending.
Many of the grants have been pump-priming grants for research projects which might initiate or support
work leading to more substantial applications to bigger national or international funders.
This year we are thrilled to offer our second round of research fellowships - our latest step in investing in the
bone cancer resarch community, by providing funding for the training of a new generation of bone cancer
researchers in the UK and Ireland.
The main issues we face are:
i) Awareness
There is a lack of understanding among the general public
of bone cancer generally, and specifically the symptoms to
look out for.
iii) Treatment
Treatment will depend on the severity of the tumour and
the type of primary bone cancer, but it is likely to involve
chemotherapy, radiotherapy and, potentially, surgery to
remove part, or all, of the affected limb(s).
People are unaware of the fact there has been no
improvement in the survival rates of primary bone cancer Treatments are often successful, but primary bone cancer
over the past 25 years, or that the two most common forms still has one of the lowest survival rates of any cancer. On
average, only 54 per cent of patients survive for at least
mainly affect children, teenagers and young adults.
five years after first diagnosis, and survival rates have been
largely unchanged over the past 25 years.
ii) Diagnosis
The key to improving survival rates for primary bone cancer
The BCRT has funded a number of research projects looking
is earlier diagnosis by GPs.
at improved diagnosis and treatment for bone cancer
Because primary bone cancer is relatively uncommon,
sufferers, but much more research is needed.
most GPs will see very few cases during their careers. And
because the symptoms can appear fairly innocuous (eg
swollen or painful joints, aching bones with pain that might
come and go over time) it may take several visits to a GP
before an X-ray scan is ordered. By this time, the tumour
may have taken hold in the bones. We are hoping to help
GPs diagnose bone cancer earlier with our tailored
e-learning module which we will be launching later this year.
What causes bone cancer?
For most cases of bone cancer, we don’t fully understand
the cause. Some very rare genetic conditions can increase
the risk of developing primary bone cancer, and we know
that radiotherapy for a previous tumour can also be a risk
factor. There may be a link with rapid growth as there is a
slightly higher incidence of primary bone cancer in taller
teenagers.
What needs to happen to improve survival rates?
We believe there are three key elements to improving bone
cancer survival rates:
What are the symptoms of bone cancer?
The most common symptom is pain, which may be
intermittent, becoming more severe over time.
ii) Faster referral– it can take several GP visits before a
patient is referred for further tests, which usually involves an
X-ray. Faster diagnosis allows treatment to start sooner, and
this improves the patient’s chances of survival.
i) Earlier diagnosis– we need to educate the general
public on the possible symptoms of primary bone cancer
(particularly among children and young adults), and to seek
advice from their GPs as soon as possible. We then need
GPs to be more aware of primary bone cancer so that they
Elderly people with an underlying bone disease called
are able to identify the symptoms and refer young patients
Paget’s disease are also at risk of developing osteosarcoma. for X-rays sooner.
Other possible symptoms of primary bone cancer include
swelling; difficulty in moving a joint; pain, tingling and
muscle weakness; skin numbness and a broken bone.
iii) More research– we need to increase the amount of
research into potential treatments for primary bone cancer.
As a small charity, the BCRT can only do so much. We would
How is bone cancer diagnosed?
like to see a greater priority given to bone cancer research
Because symptoms (such as joint pain, swelling and muscle by the broader medical community than is currently the
weakness) can be vague at first, a detailed examination and case.
X-ray are important first steps in diagnosis.
How is bone cancer treated?
The main treatments for bone cancer are surgery,
chemotherapy and radiotherapy. Often a combination off
treatments is used. The treatment plan will be tailored to
the individual patient, depending on the type of bone
cancer, the site and size of the tumour and whether it hass
spread.
Can patients be cured?
Yes, patients can be cured and, on average, a young
person cured of bone cancer will have another 60 years
of life.
However, primary bone cancer has a poor survival rate.
On average, only 54 per cent of patients survive for at
least five years after first diagnosis, and survival rates are
largely unchanged over the past 25 years.
For further media enquiries contact
BCRT PR Officer Chantal Spittles on 0113 258 5934
or email [email protected]
Visit www.bcrt.org.uk to find out more
Registered charity number 1113276
BCRT/0913/aw04