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
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