Photo of Sarcoma UK supporter, James Smythe

‘It feels like getting a second chance, and in some ways my life is much better than before it happened.’

James Smythe is a 51-year-old small business owner. He lives in Enfield, North London, with his wife Catherine and their 13-year-old son. 

I was just approaching my 50th birthday. An active and healthy husband and father, I had competed at elite level in canoeing and still enjoyed a race. In late 2019, I found a lump, and was diagnosed with a fast-growing de-differentiated retroperitoneal liposarcoma. These were three words I had never heard of before. Diagnosis was slow, and by the time I got a biopsy it had also caused a pulmonary embolism, which made surgery impossible for a few months. Chemotherapy wasn’t working, and the tumour grew to around 25cm. Sarcoma UK helped me transfer to the Royal Marsden for my ongoing care, where I was finally given the go-ahead for surgery in April 2021. 

 

Coming out of hospital after surgery, I’d lost two stone, a kidney, some other bits and bobs and all of my hair, but I had my life back again. Every day since has been a sweet and beautiful experience. Not just for me, but also for my family. Sarcoma UK have been really helpful, especially for my wife, who had suffered just as much as me throughout the experience. Sarcoma UK were able provide us with expert advice when we weren’t sure about the care we were getting, as well as how to ask the right questions with my oncologists. 


Since the surgery I’ve had scans every three months, with no sign of recurrence. According to the surgeon, there is a roughly 60% chance of it not coming back - but I am aware that stats are just an average. I know that lifestyle can make a difference, so I’m back canoeing, staying healthy and eating a lot better than I used to. 

Knowledge, awareness and discussion of sarcoma make a massive difference. Not only within the community, but among medical professionals too. If it was diagnosed earlier, more people would survive and suffer fewer complications. If the radiographers reviewing my scan hadn’t referred me to a kidney cancer team instead of a sarcoma team, I would have been treated four weeks earlier. This means I could have avoided the embolism and possibly had my surgery three months earlier, when the tumour was less than half the size. The work of Sarcoma UK doesn’t just reassure and help families through these experiences, it is also critical to raising awareness and avoiding mistaken diagnoses, which can cause delays and risk lives.

I’m 51 now but trying very hard to resist being middle-aged. Having a 13-year-old son helps, as I can talk about sport and play football in the garden as much as I like. Having been an athlete in my youth, I still enjoy a canoe race, especially against the other so-called “veterans”. It gets very competitive! I’ve even managed to win myself a gold medal since my recovery in 2020.

We’ve been trying to enjoy life to the max, as a family. It feels like getting a second chance, and in some ways my life is much better than before it happened. The stresses of work and everyday life get put into perspective, and relationships with my family and closest friends are much stronger. I’ve been living every single day to the fullest. There is a scan to get through every three months, but, fingers crossed, we’ll continue to see no signs of recurrence. 

We’re sharing your stories all through the year. Do you have a sarcoma story to share? Get in touch on tenyears@sarcoma.org.uk.