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‘I’m a big believer in being actively involved in your own treatment’
January 7, 2026 15:58
Karen Delin, 60, was diagnosed in 2006 with leiomyosarcoma, a rare cancer of the smooth muscle tissue, which has only around 525 cases annually in England. At the time of her diagnosis, sarcoma resources in the UK were scarce, and Karen discovered that the best information and support came from the US. She was inspired to fill this gap and did so by founding the London Sarcoma Support Group, which has grown from its first meeting in a John Lewis café nearly two decades ago to now hosting monthly meetups for people affected by sarcoma. Karen’s work was recently recognised when she received the Roger Wilson Inspiration of the Year award at Sarcoma UK’s Shining Star Awards Ceremony.
Can you tell us about your cancer journey?
It started 20 years ago next month, which is quite overwhelming to even think about. At first, I had an ultrasound and was told it was a fibroid, but that there was no chance it was cancer. I had surgery within two weeks and everything went fine, but when I went back for my checkup, that’s when they told me I had cancer. The sarcoma is hidden inside the fibroid and they couldn’t see the difference on an ultrasound. I was incredibly fortunate because my gynaecologist said that he had only seen this once in his career, and that it was the previous year, so he knew exactly who to send me to and what to do.
I went straight to the Royal Marsden Hospital and was seen by a consultant, and I started radiotherapy the week after my daughter’s batmitzvah. I later changed the course of my treatment when I found out about some hormone therapy that could also be beneficial and I was on that for over ten years. In 2021, I was discharged, which really shook me, because when I was initially diagnosed, I was told that I would never be discharged and would have scans for the rest of my life, but the protocols changed. It was really quite strange, and wonderful, to get to that point.
What compelled you to set up the London Sarcoma Support Group?
When I was first seen by a consultant in 2006, he told me not to go home and Google the condition because it’s quite scary – though he knew I was a nurse and would still do so. I started researching everything and found a fantastic support group in the US for the specific type of sarcoma I had, but it took me a few more months to find the sarcoma support group in the UK, and it was all by email. It was being run by Roger Wilson from his kitchen table under the name Sarcoma Trust. Roger set up a date for 30 or 40 of us to meet in person, and I thought I’d like to set up a support group so we can all meet regularly. I thought, if I felt really lonely and scared, how must other people feel, given I have my nursing background to fall back on, which most people don’t have.
How has the support group, together with Sarcoma UK, changed the landscape for sarcoma patients?
There’s at least a dozen support groups now. If anyone Googles “sarcoma support groups”, they will find that information – being diagnosed now means that a person who wants to reach out and have some form of support will be able to find it. During the pandemic our meetings went online, and we have kept some form of virtual meeting going since then, as some people aren’t well enough to travel, and a lot of meetings take place at the specialist centres which aren’t near where people live. One man told me: “Even though I only joined a meeting once, I can’t tell you how beneficial it was because I realised that I wasn’t alone and that there are other people who have sarcoma and are managing their everyday lives.” I have had some fantastic feedback and that spurs me on.
What does it mean to win the Roger Wilson Inspiration of the Year award?
Roger is one of the first people I met when I started my journey with sarcoma. To be able to see how to start a charity was inspirational, and I learnt so much from him, so to be honoured with an award in his name is incredibly special. I truly feel humbled and proud that I’ve been able to achieve these changes and keep running the support group.
What would you say to anyone with a recent sarcoma diagnosis or undergoing treatment?
The first step is to make sure you’re within a sarcoma specialist team; it’s so important. I would encourage you to keep asking questions, and do research and bring it to your medical team. I’m a big believer in being actively involved in your own treatment. There is such fantastic support out there now, with the support groups and Sarcoma UK as a phenomenal hub of information. You should never feel that you can’t ask a question and gain more information.
To join one of the London Sarcoma Support Group events, visit londonsarcomasupport.net/events
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