Monday 12th October marks the first day of #BoneCancerAwareness Week 2020 and the culmination of our 100-day campaign with Children with Cancer UK, the Bone Cancer Awareness Initiative, the biggest primary bone cancer and tumour awareness campaign ever undertaken in the UK! ​

Primary bone cancer is a devastating form of cancer, affecting around 560 children, teenagers, and adults each year in the UK. 28% of all new diagnosed patients are children and teenagers. For decades patients have reported experiences of late diagnosis and progressed disease by the time a diagnosis has been made.

Patients like Harmony, pictured above, know all too well the impact of a late or misdiagnosis. Harmony was initially diagnosed with an infection and given antibiotics. It was only when a friend of the family, who is a paramedic, booked Harmony an X-ray that the real issues were revealed. The X-ray showed the damage to her arm and that it had been eating into her bone. A biopsy followed and confirmed it was Ewing sarcoma.

Early diagnosis of the disease dramatically improves outcomes for patients like Harmony and it reduces the need for potentially life-altering treatment and surgery. However, currently, healthcare professionals, including GPs, receive no dedicated training on the signs and symptoms of the disease, despite 10-year survival rates being little over 50%.

During Bone Cancer Awareness Week 2020, in collaboration with Children with Cancer UK, we aim to change this! As part of our joint project, we asked patients, former patients, and their loved ones to complete a Patient Survey in July. Findings from the survey have highlighted just how desperately an increased understanding and education amongst healthcare professionals is needed. From the data, we have made several alarming discoveries, including:

  • 76% of primary bone cancer cases in the UK are initially misdiagnosed
  • Patients, on average, visit healthcare professionals 8 times before being referred
  • A quarter of all patients report symptoms to a physiotherapist
  • A plain X-ray may miss a third of all cases

The findings from the survey have helped shape and inform new education materials. During Bone Cancer Awareness Week 2020 we will provide healthcare professionals, across the UK, with these materials to provide knowledge on how to identify a potential case of primary bone cancer and what the onward referral pathways should be to confirm or rule out a diagnosis.

This week 368,642 education resources will arrive at their destinations across the UK. This includes:

  • 10,771 education packs going to every GP practice in the UK
  • 1,542 education packs going to every hospital radiology department in the UK
  • 44 digital education packs going to every Medical School in the UK
  • 586 education packs going to MACP registered musculoskeletal physiotherapists across the UK
  • 12,811 education packs going to every pharmacy in the UK

This is the single-largest dissemination of primary bone cancer information ever undertaken in the UK! During Bone Cancer Awareness Week we are also inviting GPs, Physiotherapists, Radiologists, Medical Students and Pharmacists to join free educational webinars which we are delivering to answer questions and confirm understanding – over 1,000 healthcare professionals have already registered their places.

Zoe Davison, Head of Research, Information and Support at the Bone Cancer Research Trust, said:

Primary bone cancer patients currently make an average of 8 visits to healthcare professionals and over a quarter wait 7 months before receiving a diagnosis, 13% wait more than a year. We are determined to change this by taking a proactive approach and educating healthcare professionals. We hope that our initiative with Children with Cancer UK will dramatically improve patient outcomes and reduce strain on NHS services by reducing the visits needed to make an accurate diagnosis and onward referral. We want to see improvements now and, in the future, which is why we are targeting medical students – our GPs and radiologists of the future. We would urge all healthcare professionals to engage with our initiative and educational materials and share them amongst colleagues. By working together, we can improve outcomes for all patients.

The Patient Survey also found that almost four in five (79%) bone cancer cases in the UK were initially missed in children. Mark Brider, CEO of Children with Cancer UK, commented:

Too many young children are slipping through the net in terms of bone cancer diagnosis, and it’s vital that we take action to turn the statistics. Upskilling GPs and other key healthcare professionals will be key to making change and ensuring that more cases are caught as soon as possible. An early diagnosis really can be the difference between life or death. We are committed to saving as many children’s lives as possible from this devastating form of cancer and are happy to be working with the Bone Cancer Research Trust on this initiative which will lead to more lives being saved.

If you would like to find out more about the Bone Cancer Awareness Initiative and more of the latest data findings from our 2020 Patient Survey, please join our free public webinar on Friday 16th October 7:30-8:30pm, delivered by Dr Zoe Davison, Head of Research, Information and Support at the Bone Cancer Research Trust. Register today.