When Karen 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 seen a case of sarcoma before and knew what to do. Because sarcoma is rare — about 3,800 new cases are diagnosed in the UK each year (one per cent of all cancer diagnoses) — your local hospital is unlikely to have the expertise to ensure an optimum outcome.

Sarcoma UK wants to make as many GPs as possible aware of the right course of action.

“Patients need to be at sarcoma specialist centres,” says Delin. Here, care is delivered by a multi-disciplinary team — everyone looking after the patient will be a sarcoma expert, from the oncologist to the physiotherapist.

Sarcoma UK has pledged to invest more than £3 million into research with the aim of finding effective treatment in the next 10 years.

July 3 to 9 is Sarcoma Awareness Week, centred on The Big Picnic campaign. Delin will be hosting a picnic for friends, as well as a public picnic on July 6 at the Marsden. All are welcome; details at sarcoma.org.uk.

The charity runs a support line, staffed by sarcoma nurse specialists and an expert sarcoma information officer and its team will be travelling around the country during Awareness Week, calling at the Marsden on that day.

The aim, says Delin, is “to encourage people that have a sarcoma, or carers or friends of those who do, to take up the idea and raise awareness (as well as donations).

If you meet one person who says they don’t know what sarcoma is, it might just help one person. You don’t know whose life you’re going to affect.”