Families affected by synovial sarcoma have launched the first-ever Synovial Sarcoma Day today (17 February) to bring urgent attention to a rare cancer that claims half of those diagnosed within five years.
The initiative comes as multiple families report experiencing delayed diagnoses. James Gough dismissed his symptoms as a sports injury for 18 months, while eight-year-old Amber Hoctor was initially misdiagnosed with a ganglion cyst for over a year before receiving her correct diagnosis.
‘It came completely out of nowhere, I thought I had a kind of sports injury and ignored it for 18 months. Classic me!’ says James Gough, who was diagnosed in March 2023. His story echoes the experiences of many patients who initially mistake the cancer’s symptoms for more benign conditions.
Addressing the significance of awareness day, Sarcoma UK Chief Executive Richard Davidson, noted that: ‘With 79 patients diagnosed in England every year, each with very complex treatment needs, we need this dedicated focus more than ever.’
For many families involved in launching this awareness day, the initiative represents hope for future patients. Jenny Owen, whose son Oliver died from synovial sarcoma, shares their motivation: ‘Oliver was diagnosed in October 2022 after a visit to his physio pushed us to get an MRI. Various doctors and orthopaedics didn’t have a clue what this lump was in his glute. He went through chemo, proton beam and major surgery. Getting back to his beloved football six weeks later after being told he would never play again. Unfortunately, Oliver relapsed six months later. His strength and fitness kept him going both physically and mentally, but we sadly lost him in September of last year.’
The impact of delayed diagnosis is particularly evident in young patients. Kate Munday Hoctor emphasised the critical need for earlier detection: ‘We’d visited the GP for over 12 months and Amber had initially been misdiagnosed with a ganglion cyst. It was only after her first surgery that we discovered what she had was, in fact, a soft tissue cancer: synovial sarcoma. Only 50% of individuals survive from five years or more post synovial sarcoma diagnosis, and so we felt we had to make a change.’
Sam and Elliott Sheppard, whose daughter Isobel died in December 2022, underscored the urgent need for increased awareness and research. ‘Our daughter Isobel was diagnosed in 2020 at the age of 12,’ they shared. ‘She went through several rounds of treatment, including amputation, and unfortunately relapsed some two years later. And unfortunately, she ultimately lost her life to it in December of 2022. Isobel was a massive advocate of Sarcoma UK. It was really important to her, so that’s why it is really important to us.’
Chris Whellams, whose wife died from another form of sarcoma, emphasised the broader importance of such initiatives: ‘Every subtype is important and they all need as much awareness and support as possible. Any awareness, any research, any funding that goes towards any type of sarcoma is a step in the right direction for every sarcoma patient.’
Kate Quillin, Research Manager at Sarcoma UK, points to promising developments in the field: ‘We’re now starting to see some promising developments worldwide for these patients, but funding has often been the barrier.’ She adds that supporting researchers who specifically work on synovial sarcoma will bring us closer to better treatments in the long run.
The inaugural Synovial Sarcoma Day features various awareness-raising activities throughout the day, culminating in a special evening event announcing a dedicated research fund. The initiative represents a crucial step forward in improving outcomes for future patients diagnosed with this aggressive cancer.
Chris Metcalfe, whose brother Rob also died from synovial sarcoma, summarises the community’s hopes: ‘My hope is that we could provide a better future for people to have better outcomes with synovial sarcoma.’
Learn more about the Synovial Sarcoma Fund.
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