Picnics bring sarcoma into the open
WHENKAREN Delin was diagnosed with sarcoma in 2006, her doctor told her not to Google it, because the results would be too scary. But he knew she would do it anyway.
Sarcoma is a cancer of the bone or soft tissue. A key symptom is a lump that increases in size, often rapidly. Because it can affect any part of the body, inside or out, it is one of the hardest cancers to diagnose. But identifying it early — when it is no bigger than a golf ball — can improve survival by 20 per cent. Often, though, sarcoma is not diagnosed until it is the size of a can of beans and after a patient has visited the GP as many as eight times.
“If you’re not happy, don’t just accept a diagnosis or a treatment,” says Delin. “Take that step forward; say: ‘please send me for a second opinion’.”
It was months before Delin could find a reliable source of sarcoma information online.
Initially, she found an American site. Then she located the Sarcoma Trust, founded by Roger Wilson. It was the forerunner of Sarcoma UK, of which she is now the chair.
“I’m a qualified nurse, working in palliative care and I found it overwhelming that I’d never heard of or looked after someone with sarcoma,” she says. “If I felt scared, how must other people feel?”
Wilson inspired Delin to start a support group in London at the Royal Marsden Hospital, one of the specialist centres for sarcoma. “People might be a year into diagnosis and not have met another sarcoma patient,” says Delin. So support groups are important if they are not to feel alone. You can find details of all the support groups on the website.
Soon, Wilson asked Delin to become a trustee of the charity. Since then, Sarcoma UK has raised its profile and launched a national sarcoma survey, providing valuable data for researchers. The information on sarcoma.org.uk and the charity’s leaflets are all accredited, so patients and medical professionals can have confidence in them (no more scary Googling).
Often, people with sarcoma go into an operating theatre thinking they are having surgery for a benign tumour. This is what happened to Delin.
“I was diagnosed just before my daughter’s batmitzvah. I had surgery, thinking
I was just going in for a fibroid with enough time to be ready to dance at her batmitzvah.”
She was shocked to discover the tumour was malignant. But she feels fortunate that her consultant happened to have