About 100 patients, doctors, nurses, researchers and family members from across the sarcoma community gathered on Tuesday in Bristol for Sarcoma UK’s inaugural Community Day – a pioneering event dedicated to a cancer most people have never heard of.
Sarcoma accounts for just 1% of all cancer diagnoses in the UK, making it an exceptionally rare disease that affects approximately 5,300 people annually. The rarity of sarcoma often means patients and families can feel isolated, making Tuesday’s gathering at the Hilton Cadbury House Hotel in Bristol particularly significant as it brought together this scattered community in one place.
‘This is truly unique – we’re bringing together patients, families, and healthcare professionals who specialise in a cancer that many people have never heard of,’ said Richard Davidson, Chief Executive of Sarcoma UK. ‘The rarity of sarcoma means our community is small but incredibly resilient, and this event represents the first time we’ve created a dedicated space for everyone affected by this disease to connect, learn and share their experiences.’
The day-long programme addressed the unique challenges faced by the sarcoma community, including the notorious difficulty in diagnosing these rare tumours. Dr Naomi Carson, Consultant Histopathologist at North Bristol NHS Trust, spoke about the diagnostic challenges, while sessions covered advances in treatment and clinical trials, and the psychological impact of living with a rare cancer. Dr Veronica Wilshere, Clinical Psychologist, North Bristol NHS Trust revealed that almost half of patients who have had sarcoma fear that the cancer will return. Her talk focused on how to cope with anxiety and fear of recurrence.
One of the patient advocates who shared their personal experience was Stephen Downes from Cornwall, who gave a personal account of his remarkable sarcoma journey.
Stephen, 49, became a national surfing champion after undergoing a radical forequarter amputation that removed his entire right arm, shoulder, collarbone, three ribs, and part of his chest wall in 2022. When told he needed the amputation, Stephen’s immediate questions were: ‘Am I going to die? Will my wife still fancy me?’ His wife’s response was both practical and supportive: ‘They are giving you a way out.’
Just six months after his 12-hour surgery, he was back on a surfboard and has since become English kneeboard champion for two consecutive years.
The morning session was chaired by Sarcoma UK’s founder Roger Wilson CBE. Roger was diagnosed with a soft tissue sarcoma 26 years ago and has undergone ten operations, chemotherapy and radiotherapy, including a lower leg amputation in 2007 and two thoracic metastectomy operations in 2013.
Carly McDonald, Support Line Advisor for Sarcoma UK, said: ‘When patients are diagnosed with sarcoma, they can feel completely alone. But there is a sarcoma community. This day represents everything we’ve worked towards – bringing together those affected by sarcoma and the incredible healthcare professionals who dedicate their careers to caring for people with this rare disease. Sarcoma patients often face longer diagnostic journeys and more complex treatment pathways than other cancers and this Community Day acknowledges those challenges while celebrating the strength and knowledge within our community.’
The event featured expert panel discussions split into bone sarcoma and soft tissue sarcoma tracks, reflecting the diversity within this rare cancer family. Leading specialists including Mike Parry, Consultant Orthopaedic Oncologist from the Royal Orthopaedic Hospital in Birmingham, and researchers from University College London shared the latest advances in diagnosis and treatment.
Uniquely, the programme also addressed the holistic needs of the sarcoma community, with sessions on evidence-based self-help strategies around exercise and nutrition, and the late effects of cancer treatment. Reflexology and massage treatments were available and a group sound bath session during the lunch break underscored the event’s focus on wellbeing alongside medical education.
The event also brought together sarcoma support group leaders from across the UK. Several local specialists contributed to the programme including Becky Peach, Sarcoma Clinical Nurse Specialist, and Jayne Masters, Specialist Physiotherapist.
The Community Day represents a milestone for Sarcoma UK, the only charity in the UK dedicated exclusively to supporting people affected by sarcoma. Founded in 2013, the charity has grown to become the leading voice for the sarcoma community, funding research, improving awareness, and providing specialist support.
