The 68-year-old is now on the road to recovery and is passionate about raising awareness of the disease.
Alan recently joined the West Midlands Cancer Alliance (WMCA) as a Patient Representative where he hopes to use his experiences to support patients and improve education around sarcoma.
“Things happen in our lives; some we are ready for but every now and then, we are thrown a curve ball. That’s what being diagnosed with sarcoma felt like to me,” said Alan.
“I had never even heard of sarcoma prior to my diagnosis back in 2022. I had been visiting my GP over several years about a blood blister on my lower back. The blister was growing and was extremely painful, but it kept being passed off as a cosmetic issue.
“I had no other warning signs that my symptoms could’ve been a sign or something more sinister. Despite the constant pain in the affected area, I felt generally well in myself.
“Eventually, I was referred into a local clinic in Telford where they took a biopsy which confirmed I had sarcomas – one being the blister on my back and another on my upper left arm which resembled a pimple. I didn’t even know what sarcoma was, let alone that it was cancer, so it was an incredibly difficult thing to get my head around.”
Alan was referred into the Montgomery Unit at The Robert Jones and Agnes Hunt (RJAH) Orthopaedic Hospital, one of five bone cancer and soft tissue sarcoma tumour units in England.
The team successfully removed the tumours with clear margins and confirmed that the cancer had not spread anywhere else, meaning Alan didn’t need to undergo any further treatment.
He is now closely monitored and supported by the team at RJAH.
“I cannot fault the care I was given at RJAH,” added Alan.
“All of the staff were incredible, and I felt so supported throughout. They were so helpful during my diagnosis and treatment, but the care didn’t end there. The team are always there at the end of phone to talk to me about any other concerns I might have which gives me massive peace of mind”
“I also attend a sarcoma support group, organised through RJAH, which has helped my recovery. I thought my experience was a one-off, but it’s been so helpful to listen to other people who have, or currently are, experiencing what I’ve been through.”
Alan has credited the care he received as one of the main reasons for becoming a WMCA Patient Advocate.
“It was the dedication of not just one member of staff, but the entire team, that made me decide to use my experiences for good and to support others undergoing the same journey.
“Sarcoma is so uncommon that a GP might only see one case in their entire career or never at all. This is why education is crucial - the earlier they are spotted, the better outcomes are available for patients.
“I’m ecstatic to represent the patient voice at WMCA. If I can help even one patient with their diagnosis, or work to improve education around sarcomas, then I will be proud. My experience didn’t start well, but it ended positively and I want to give something back and drive change for sarcoma patients like myself.”
Symptoms of leiomyosarcoma can vary depending on the tumour’s location and size. The main symptom of leiomyosarcoma is a lump or swelling that is:
Other symptoms may include:
Most soft tissue lumps are not cancer. But if you notice any of these symptoms, get them checked by your GP. Find out more here.