Stephen Downes was a lifelong surfer of 40 years before a shock diagnosis of sarcoma led to a new life as an amputee, but this didn’t stop him becoming a champion.

“On the 4 August 2022, I woke up an upper left limb amputee, following a 12-hour surgical procedure to remove a ‘mango’ sized myxofibrosarcoma that sat between my clavicle and rib cage. The surgery, an extended full forequarter amputation, was the culmination of a whirlwind 10 weeks that all began when I noticed what felt like a golf ball sized lump in my neck.

“There didn’t appear to be any of the overt, obvious signs of cancer – no night sweats, no feelings of fatigue, no unexplained bleeding or bruising, no unexplained pains, aches or weight loss – none of the things we’re told to look out for. However, looking back there was a symptom that I’d overlooked. At night, when I’d be trying to get to sleep, I’d have what I could only describe as a restless arm, which felt a little like pins and needles. I probably first noticed this 5 years prior to discovering the lump in my neck. Initially this feeling would be very sporadic, only noticeable once every few months.

“Over time, this feeling increased in frequency, but was often alleviated by taking paracetamol or ibuprofen; I thought it was part of the ageing process and nothing to be overly concerned about. By the spring of 2022, I’d say that feeling, the ‘weird hand thing,’ as I’d describe it to my wife, was becoming more prevalent, and was increasingly noticeable most nights. It was during my second full consultation with the surgeons that one of them asked me, ‘Do you ever have a feeling of numbness or pins and needles in your left arm?’ This felt like a bit of a ‘Gotcha’ moment, in that prior to that I was still hoping there would be a different way out of the predicament I found myself in that didn’t necessitate the amputation of my arm.

“The ‘weird hand feeling,’ was being caused by the tumour pressing on blood vessels, nerves and tendons. When I’d turn to lie on my side to sleep, the situation would be exacerbated and the supply of blood out to my left arm was clearly being restricted, causing the feeling of pins and needles. I often wonder – would things have been different, would I still have an arm had I been to see my GP sooner?

“I often describe life as a recent amputee as similar to having a newborn baby. As with a baby, once you return home from hospital, you’re inundated with visits, calls and messages not only from friends and family but also from various healthcare professionals. However, much like with a new arrival, those calls and visits quickly come to an end once people know you’re doing okay. You’re kind of on your own, left to figure it out for yourself 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 healthcare assistants who took care of me every day. To all those people, for all they did – I’ll always be incredibly grateful.”

A word from the Sarcoma Specialist Nursing team

Stephen was a lifelong surfer of 40 years before the amputation. He even spent the evening before the operation in the water. He first made it back into the water in February 2023, 6 months after the operation, and despite previously being a stand-up surfer, made the decision to start kneeboarding.

Stephen’s determination and resilience meant that in August 2023, 12 months on from the lifesaving, life-changing surgery, he participated in the Welsh Adaptive Open at The Wave in Bristol, where he came second in his category.

July is Sarcoma awareness month and as such Stephen shared his story with us to show people how important it is to seek healthcare support as soon as possible.

These are the common sarcoma symptoms (it’s important to remember that every sarcoma is different and not all will present this way:

• A lump which is growing, changing, or bigger than a golf ball
• Swelling, tenderness or pain in or around the bone which may come and go and may be worse at night
• Stomach pain, feeling sick, loss of appetite or feeling full after eating only a small amount of food
• Blood in either your poo or vomit

The prognosis for sarcoma patients has changed little over the past 40 years. Only 55% of patients will survive for five or more years. Survival is determined by tumour size, grade and location. Early detection is likely to catch tumours at a smaller size and improve patient’s outcomes.

Sarcomas are uncommon cancers that can affect any part of the body, including the muscle, bone, tendons, blood vessels and fatty tissues. There are around 100 different subtypes of sarcoma, which are commonly grouped into soft tissue sarcomas and bone sarcomas. UHP is one of 15 NICE accredited Soft Tissue Sarcoma Specialist Centres. Stephen was cared for by UHP, Royal Cornwall Hospitals Trust, and Royal Devon University Healthcare NHS Foundation Trust, demonstrating the collaborative nature of care across the southwest.

If you would like more information, please contact UHP’s sarcoma specialist nursing team: Liz Ridgway or Olivia Trott on 01752 433225, email plh-tr.sarcomanursespecialists@nhs.net or join us for our cake sale on the 25th of July 9.30am to 2pm in The Mustard Tree.