Primary bone cancer is a devastating rare form of cancer, affecting around 560 children, teenagers and adults each year in the UK.

28% of all newly diagnosed patients are children and teenagers. The most common forms affecting these age groups are osteosarcoma and Ewing sarcoma. Currently, medical professionals, including General Practitioners, receive no dedicated training on the signs and symptoms of the disease, despite 10-year survival rates being little over 50%.

girl smiling holding a teddy for bone cancer awareness initiative

A new life-saving collaboration

For decades patients have reported experiences of late diagnosis and progressed disease by the time a diagnosis has been made – dramatically reducing their chance of survival, increasing the need for life-changing surgery and treatment and significantly reducing post-treatment quality of life.

Research conducted by the Bone Cancer Research Trust has found 1 in 4 patients (26%) wait more than 7 months to receive an accurate diagnosis and 13% wait more than a year. Many cases are currently missed or mistaken for other conditions, such as growing pains, sporting injuries or other muscular skeletal conditions. Recent data released by Public Health England shows that between 2006 and 2016 21% of primary bone cancer patients were diagnosed via Accident & Emergency departments and not through referrals from GPs.

To mark the start of Sarcoma Awareness Month in July 2020, the Bone Cancer Research Trust and Children with Cancer UK announced their second collaborative project – the Bone Cancer Awareness Initiative. This 100-day online and postal campaign, culminating in Bone Cancer Awareness Week (5-11 October), aimed to reach all GP practices, medical students, radiology departments, muscular skeletal physiotherapists and pharmacies in the UK. For the first time, this campaign provided them with the knowledge and tailored tools to identify a potential case of primary bone cancer and will give guidance on how to confirm or rule out a diagnosis.

Second collaborative project

Dr Zoe Davison, Head of Research, Information & Support, Bone Cancer Research Trust said:

We are delighted to be working with Children with Cancer UK on this project, and through this collaboration, we are committed to equipping GPs and other key healthcare professionals with the knowledge they need to make accurate and timely referrals so that patients are given the best chance of survival and improved outcome.

Dr Jasmine Parkinson, Research Grants Manager, Children with Cancer UK said:

We are committed to saving as many children’s lives as possible from this devastating form of cancer. Currently 27% of 0-14 year olds receive their diagnosis after attending A&E- a statistic that we simply cannot accept and are determined to change with our partners at the Bone Cancer Research Trust. Early diagnosis really can be the difference between life or death and this initiative will lead to more lives being saved.

The Bone Cancer Awareness Initiative has developed free educational resources for medical professionals, accompanied by a series of free online webinars tailored for both healthcare professionals and the public, to increase understanding and knowledge of the signs and symptoms of primary bone cancers and tumours and referral pathways. By increasing awareness and understanding we can increase speed of diagnosis, improve outcomes and save lives.

In addition, the Bone Cancer Awareness Initiative ran an in-depth patient survey in July 2020. The survey collected 739 responses from inside the UK (312) and outside the UK (426) and includes representation of every form of primary bone cancer and tumour. The survey focused on two main areas:

  • The time and routes to diagnosis
  • The range of presenting symptoms across all anatomical locations and forms of primary bone cancer & tumour

The 2020 Patient Survey report provides an in-depth analysis of the survey.

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