A young man who initially dismissed his severe back pain as a work-related injury has been diagnosed with an exceptionally rare and incurable cancer.
Roy Mugera, 31, from Dagenham, believed his discomfort was the result of lifting heavy crates and beer kegs while working in a pub. He tried to manage the pain with over-the-counter paracetamol, but his symptoms were a sign of synovial sarcoma in his kidney, a cancer diagnosed in just 79 people each year in England.
From Back Pain to a Shocking Diagnosis
Roy's ordeal began at the end of 2022 when the pain became so intense it robbed him of sleep. He made two visits to his GP and was forced to spend nights propped up in a gaming chair, on the sofa, or in a makeshift seated position on his bed for support.
"At first, I didn't take the pain seriously," Roy admitted. He also noticed a lump on his left side that seemed to move up and down. Despite taking painkillers like Paracetamol and Panadol, he found no relief.
By early 2023, Roy had started a new office job, but the pain persisted. After a massage left him vomiting and unable to walk, he went to A&E. Following a third GP visit where the lump was assessed, he was referred for scans and a biopsy at UCLH. The devastating diagnosis confirmed incurable but manageable synovial sarcoma.
A Gruelling Treatment Journey and Setbacks
Roy's treatment path has been extremely challenging. The chemotherapy was so intense he had to stop, and he suffered two life-threatening episodes of sepsis. He also underwent a minimally invasive lung surgery called microablation to target cancer that had spread.
After a break, his symptoms worsened, leading to radiotherapy in March 2024. This treatment initially appeared successful, shrinking his tumour from a massive 21cm to just 1cm. However, the hope was short-lived. When Roy resumed chemotherapy, he received the crushing news that the tumour had regrown to 19cm and the cancer had spread to both lungs.
Finding Community and Raising Awareness
The rarity of his cancer made Roy feel isolated. "It didn't sit well with me because I was super scared," he said. Connecting with the charity Sarcoma UK provided a vital lifeline, introducing him to support groups and a sense of community.
Roy now wants to use his experience to help others. His key advice is clear: "If you're experiencing consistent pain and painkillers are not working, don't wait until you see a lump. Just go and get checked immediately."
He also urges the public to be more understanding, sharing an experience where he was challenged for sitting in a disabled bus seat despite wearing a 'Cancer on Board' badge.
Dr Sorrel Bickley of Sarcoma UK highlighted the importance of research, stating that funded projects, including one on targeted bacteriophage therapy at Imperial College London, aim to develop more precise treatments that could spare future patients the gruelling side effects Roy has endured.
