'I thought paracetamol would cure me, but my symptoms were incurable cancer'

A man who thought he had a bad back from working in a pub and take paracetamol for the pain has been diagnosed with a cancer so rare just 79 people a year are told they have it. Roy Mugera thought his pain was down to carrying crates of stock up the stairs and occasionally replacing beer kegs in the cellar at the pub where he worked.

But Roy, 31, from Dagenham, has been told he has an incurable cancer that only 79 people are diagnosed with every year in England. Roy’s back pain began at the end of 2022, and he paid two visits to his GP as the pain was so bad that he could not sleep. Rpoy had also spotted a lump.

He was having to spend nights in his gaming chair, other times on the living room sofa and at other times across his bed in a seated position with his desk chair used as leg rest with lots of pillows and a gym bag full of clothes for extra support for his back and left side. The lump on his side was rising up and down.

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“At first, I didn't take the pain seriously because at the time, I was working as a bartender and with handling deliveries and restocking merchandise, I was constantly carrying heavy things,” Roy said. “But over the next few months, as the pain worsened, I was in and out of hospital, trying to find solutions or to have a scan done for my back to see what was going on.

“I went to the GP several times as I was also starting to see a lump growing on my left diaphragm. It was painful, and I was also having cramps and stomaches. Before visiting the GP and being admitted to A&E, I had been taking over-the-counter painkillers like Paracetamol and Panadol, but they weren’t helping.’’

Early in 2023, Roy got a new job in an office, but the back pain was persistent. Eventually, he decided to book a massage to see if that would help. Instead, after the appointment, he started vomiting and couldn’t even walk home. He went to A&E and had a scan. At first, it was thought he had suffered a muscle spasm.

On his third visit to the GP, his lump was assessed and Roy was referred for scans at his local hospitals and a biopsy at UCLH. Roy had synovial sarcoma in his kidney, and was told his cancer was incurable but manageable.

Roy said: “My heart was beating so fast because I had a feeling that there was some bad news. Once the diagnosis was revealed to me, and I was told that it was incurable, my heart sank. Somehow I got myself back up and I just asked what the plan was moving forward. Obviously it was very hard to hear, but I was trying to stay strong for the people around me. Later on, I did have my moments secretly.”

Chemotherapy was so intense he had to stop treatment. He suffered two life-threatening episodes of sepsis, and lung surgery using a minimally invasive technique called microablation to target cancer that had spread to his right lung. After a break from chemotherapy, Roy’s symptoms worsened and he started radiotherapy in March 2024. The treatment seemed to help and his tumour shrank from 21cm to just 1cm.

Roy resumed chemotherapy and had to deal with the news that his tumour has regrown to 19cm and the cancer has spread to both of his lungs. The chemotherapy Roy is currently undergoing is targeted to the lungs and also simultaneously targeting the tumour around the left kidney.

Roy says that learning about how rare his cancer has made him feel more alone. “It didn't sit well with me because I was super scared,” Roy said. “Because it’s such a rare cancer, I wondered what the best form of treatment would be. I also didn’t have anyone to talk to about synovial sarcoma at that time. I was trying to find people to give me ideas and advice. It was such a scary moment when I wondered ‘Who else has sarcoma?’”

Roy was put in touch with charity Sarcoma UK, who introduced him to others in the same situation. “The support groups have helped me a lot, just to have that sense of community around me,” Roy said. “I enjoy the sessions, hearing other people's stories and just talking about stuff that you wouldn't necessarily talk about with your friends or with your guardian.”

Sarcoma UK funds research, campaigns for better treatments and offers support to everyone affected by sarcoma. It has established the Synovial Sarcoma Fund to progress research and treatment.

Roy said: “If you're experiencing pain, be it any part of the body, and if the pain is consistent and painkillers are not doing it for you, you should consider visiting your GP. If you've tried remedies like deep heat, painkillers, massage or sports therapy, and the pain is consistent, don't wait until you see a lump.

“Just go and get checked immediately, and have in the back of your head that it could be cancer so you can detect it at an early stage.”

Roy also wants to raise awareness that cancer is not always visible, and to encourage others to be kind. “I had an experience where I was on the bus, I sat down in the disabled space and this lady came to me and she was telling me to stand up so she could sit down,” Roy said. “I had a badge that said ‘Cancer on Board’, but it didn't matter to her. I stood up and another lady from the back allowed me to sit next to her daughter.”

Dr Sorrel Bickley, Director of Research, Policy and Support at Sarcoma UK, said: “At Sarcoma UK, we are funding two groundbreaking research projects on synovial sarcoma, which represent exactly the kind of hope we want to offer people like Roy. At Imperial College, London, Professor Amin Hajitou's work on targeted bacteriophage therapy could transform Roy's treatment experience - instead of the gruelling chemotherapy that forced him to stop after just three rounds, we're looking at a precision approach that attacks only cancer cells while leaving healthy tissue untouched.

“Meanwhile, at the University of Edinburgh, Dr Nezha Benabdallah's research into oncofusions could unlock treatments that work across multiple sarcoma types, meaning breakthroughs for one rare cancer like Roy's synovial sarcoma could benefit thousands of other patients.

“Roy's journey - from months of misdiagnosis to life-threatening sepsis from harsh treatments - shows exactly why we need these innovative approaches.

“Both projects, supported by our Synovial Sarcoma Fund, are moving us toward a future where patients won't have to endure the devastating side effects Roy faced, and where early intervention could prevent the kind of tumour regrowth and spread he's experiencing now.

“This is why research investment in rare cancers like synovial sarcoma is so critical - it's not just about the 79 people diagnosed each year in England; it's about revolutionising cancer treatment for everyone.”