Adam Mitchell, a 30-year-old commercial pilot from Sandbach, Cheshire, had everything to live for – he was young and active and had the job he had always dreamed of, a pilot. Yet a very rare cancer reduced him to a shell of what he once was, transforming the once-vibrant aviator into a wheelchair-bound patient in just over a year, before the disease sadly took his life.
The first signs that Adam, a fit and healthy young pilot, had something wrong was in June 2022 when he had a sore left shoulder. Eventually, he couldn’t lift his arm and was signed off work. He saw a physio and was sent for an MRI scan, which found a mass in his scapula. A further scan showed it had spread to his lung, liver, spine and sacrum.
Adam was initially told he had Hodgkin Lymphoma but, after waiting nearly two months for biopsy results, was then informed it was sarcoma. He went to The Christie Hospital in Manchester for further biopsies. He was diagnosed with advanced metastatic PEComa (Perivascular Epithelioid Cell), a very rare type of soft tissue sarcoma that develops from cells lining the blood vessels.
In December 2022, with tumours all over his backbone, Adam had two titanium rods put down both sides of his spine. He then had radiotherapy and started the newly approved Fyarro drug treatment in March 2023. Unfortunately, this didn’t work and was stopped in September. Adam tried one cycle of chemotherapy but this made him very ill. Adam, who ended up in a wheelchair and had to wear a neck brace, passed away at home with his family by his side in January this year aged just 30.
His mother Adrienne, originally from Preston who now lives in Spain, said: ‘Adam’s mindset was that he was going to get better. But it was awful to have to watch this savage disease attack the skeletal body of our only child.’
Adrienne held a collection at Adam’s funeral and a celebration of his life in Spain for charity Sarcoma UK. One of his friends, Matt Williamson, ran the Rome Marathon in his memory and raised money for Sarcoma UK.
Adrienne said: ‘When we were told Adam had PEComa, we couldn’t even find a story of anyone else with this. A difficult journey was made even tougher because of it being such a rare cancer. We felt that nobody knew how to treat Adam, and the misdiagnosis at the beginning due to the lack of cases did not help. PEComa is such a harsh cancer. I just hope sharing Adam’s story can help other people in the same situation.’
Sarcoma UK Support Line Advisor, Carly McDonald, said: ‘Adam’s story is a stark reminder of the devastating impact of rare sarcomas like PEComa. At Sarcoma UK, we’re committed to raising awareness about these lesser-known cancers and funding crucial research to improve diagnosis and treatment. Adam’s journey highlights the urgent need for more targeted therapies and faster diagnostic processes for rare sarcomas. We’re grateful to Adrienne for sharing Adam’s story, as it helps us in our mission to support patients and families affected by these challenging diseases.’
