When Sol Getcheffsky dismissed the persistent lump on his leg as nothing more than an old injury from a car accident, he couldn’t have imagined it would develop into one of Britain’s rarest cancers.
Now 27, Sol, from Tutbury, Staffordshire, is being treated for Alveolar Soft Part Sarcoma (ASPS) – a condition so uncommon it affects just six people annually in England – which has silently spread from his thigh to his brain, lungs, and spleen over the six years he avoided medical attention.
Sol ignored family advice to get the lump checked out. He put it down to being hit by a car when he was younger and never thought anything of it. Eventually, in the summer of 2023, Sol started having severe headaches which progressively worsened over a couple of months. Alongside this, he experienced strange sensations, changes in his vision and loss of use in his right arm and hand. Initially, he put it down to stress and other reasons such as carpal tunnel syndrome. Eventually, however, he went to see his GP.
From here, Sol had a lot of investigations, MRI and CT scans and biopsies. In November 2023, he was diagnosed with Alveolar Soft Part Sarcoma (ASPS). There are an average of just six cases of ASPS diagnosed every year in England. They make up 0.15% of all soft tissue sarcomas.
It is a slow-growing cancer which, in Sol’s case, had spread from his thigh to his spleen, lungs and brain, where he had two tumours.
Sol has since had two craniotomies, radiotherapy and is now on a clinical trial of immunotherapy at The Christie NHS Foundation Trust in Manchester, which has kept his cancer relatively stable. The lump on his leg, which medics have decided cannot be operated on, is now the length of his thigh. He also has multiple tumours elsewhere in his body.
Charlotte Townsend, Sol’s girlfriend, said: ‘Sol’s mum had told him to get the lump on his leg checked out. Maybe things would be different if he had. My advice is to keep track of your body and, if something is different or doesn’t feel right, get it checked.’
Despite his illness, Sol has been able to continue his job as an NHS administrator. In January, he and Charlotte, a physiotherapist, bought a house together in Staffordshire. She said: ‘He has been very up and down. There is so much uncertainty for the future.’ The pair have chronicled Sol’s cancer journey on TikTok @solandcharl
To raise awareness of sarcoma and to raise money for research, Charlotte will be doing a series of running challenges for charity Sarcoma UK. ‘This is my way of doing something positive,’ she said. This will start with a half-marathon in Birmingham on 20 July. This will be followed by the Robin Hood Half-Marathon in Nottingham on 28 September and Charlotte is hoping to run the London Marathon in 2026.
‘At Sarcoma UK, we’re funding critical research like Dr Robin Jones’ £120,000 project at The Institute of Cancer Research specifically targeting Alveolar Soft Part Sarcoma—the exact rare cancer affecting Sol Getcheffsky,’ said Dr Sorrel Bickley, Sarcoma UK’s Director of Research, Policy and Support.
‘With only six ASPS cases diagnosed annually in England, stories like Sol’s highlight why our work is so urgent. Dr Jones’ research aims to identify which patients will respond best to the drug cediranib and develop strategies to overcome treatment resistance. For young people like Sol, this research could transform treatment approaches, potentially extending and improving the quality of life beyond the current three-year average survival. By supporting this specialised research, we’re working toward a future where an ASPS diagnosis doesn’t mean limited options, but targeted, effective treatments tailored to each patient’s unique biology.’
To donate to Charlotte, go to Charlotte Townsend is fundraising for Sarcoma UK
