A Newquay surfer has defied the odds to become national champion after losing almost a quarter of his upper body to a rare form of cancer.

Stephen Downes, 49, has become English kneeboarding champion for the second year in a row since his entire right arm, shoulder, collarbone, three ribs and part of his chest were surgically removed in a 12-hour operation after he was diagnosed with a rare type of cancer called sarcoma.

It was in the spring of 2022 that Stephen noticed a lump the size of a golf ball on his neck. It was in the exact spot where he had had Hodgkin’s lymphoma more than 20 years earlier. He immediately feared the worst. In 1998, Stephen had volunteered for a clinical trial for his lymphoma – 20 sessions of radiation therapy over a month. Although he was cured, he believed it was the levels of radiation he had received that caused his sarcoma.

The day after he found his lump, he went to his GP, which started a whirlwind period. Not that Stephen knew what sarcoma was when he was diagnosed six weeks later. “I’d never heard of sarcoma before, I thought it was something to do with glaucoma.” He had myxofibrosarcoma, a soft-tissue sarcoma of which there are an average of 178 cases a year in the UK.

He was then given the shocking news that he would need a complete amputation of his forehand. Stephen said: “It was like an atomic bomb going off in my head. I assumed I would have chemotherapy. I never expected they would have to take my arm off.”

Stephen’s immediate concern was how he would survive the 12-hour surgery, rather than how he would adjust to life as an amputee. Fearing the worst, he recorded video messages to his family before the surgery. In August 2022, just 10 weeks after discovering the lump in his neck, surgeons removed a tumor the size of a mango that was growing between his collarbone and rib cage.

Before the surgery, Stephen was told that there was no guarantee that surgeons would be able to remove the tumor. Otherwise, they would not proceed with the amputation, they would suture him, and Stephen would receive palliative care.

So there was a sense of relief when he woke up after surgery and saw his arm was gone. “I just felt relieved that I was alive,” he said. But now he had to deal with a phantom limb — a condition in which patients experience sensations in a limb that no longer exists. “My arm was itchy, but there was no arm,” Stephen said.

“I often describe life as a recent amputee as having a newborn baby. Just like with a baby, once you come home from the hospital you are inundated with visits, phone calls and messages, not only from friends and family, but also from various healthcare professionals. But just like a newcomer, those phone calls and visits quickly come to an end once people know you are okay. You are kind of on your own, you have to figure it out and get on with it.

“The care and treatment I received from the NHS was first class and saved my life; from the skill and expertise of the surgeons, to the care and compassion of the nurses, to the care assistants who looked after me every day. To all of those people, for everything they did – I will always be incredibly grateful.”

Six months after his surgery, Stephen was back on a surfboard and became a national champion. Previously a stand-up surfer, he decided to take up kneeboarding, where surfers kneel on their surfboard. In August 2023, a year after his surgery, he competed in the Welsh Adaptive Open and came second in his category. He has been the English kneeboard champion for two years running.

Stephen reflected on life as an amputee: “Being an amputee has been a real eye-opener. It’s given me an insight into what it’s like to be in a minority. You feel like people are watching you.” He added: “But it still feels like something that happened to someone else, like I’m a voyeur.”

Stephen, a telecoms engineer who lives with his wife and three children, gives talks about resilience at schools in his area. He also wants to raise awareness of sarcoma and the work of the charity Sarcoma UK. “The more I learn about sarcoma, the happier I feel. There are so many sad stories of people who don’t survive. It seems like a particularly malignant cancer.”

Carly McDonald, a Sarcoma UK support line advisor, praised Stephen’s remarkable journey: “Stephen’s story is a powerful testament to the incredible power of the human spirit. His determination in the face of such a life-changing diagnosis and extensive surgery is truly inspiring. Stephen embodies the resilience we often see in sarcoma patients, but his achievement in returning to championship-level surfing is extraordinary.

“His willpower was not only the driving force behind his personal recovery, but also serves as a beacon of hope for others facing similar challenges. Stephen’s journey reminds us all of the importance of supporting sarcoma research and awareness, as well as the potential for life after a sarcoma diagnosis.”