'Perfect storm' leading to devastating delays in rare cancer diagnosis

Around 15 people a day in the UK are diagnosed with sarcoma - a type of cancer of the bone and soft tissue that can develop almost anywhere in the body.

According to a new report by charity Sarcoma UK, a complex diagnosis pathway is also adding to delays to diagnosis which it says is “devastating lives”.

Even prior to the coronavirus pandemic, one in three sarcoma patients waited at least six months from first speaking to healthcare professionals to being diagnosed, the charity said. One in six waited more than a year.

Sarcoma UK said the pandemic is “only adding to an already complex situation”. With fewer people visiting their GP, NHS England figures showed April saw a drop of 60 per cent in the number of people in England assessed by a cancer doctor compared to the same month in 2019.

NHS data also showed a fall 60 per cent fewer sarcoma patients were referred to a specialist through the two-week wait referral system that same month.

Chief executive of Sarcoma UK, Richard Davidson, said: “Put simply, late diagnosis costs lives. Being diagnosed with any cancer is an isolating experience, made worse for sarcoma patients as they often have to wait agonisingly long times for a diagnosis of a cancer that has such limited treatment options currently.”

Sarcoma symptoms can be vague - often a growing, possibly painful lump, or bone pain if it is in the bone. The current five-year survival rate is only 55 per cent.

Due to the rarity of sarcoma, some GPs may only see one or two cases during their careers.

A third of sarcoma patients had to see a healthcare professional more than three times before they are referred for further tests, and four in ten patients were told at their first appointment that their symptoms were not serious, or were started on a treatment for another condition.

“What the report highlights is not just the need to improve awareness of the symptoms of sarcoma, but education for healthcare professionals around the correct referral path to help make sure that patients with suspected sarcoma reach the right services as quickly as possible,” added Mr Davidson.

Earlier this month, the Yorkshire Post reported that England’s top cancer doctor had urged people to get checked if they are worried about any symptoms amid falling referral numbers. A poll found one in 10 people would not contact their GP if they had a lump or a new mole which did not go away after a week, while a third are worried about seeking help during the epidemic.

Professor Peter Johnson, the NHS clinical director for cancer, said failure to get help could have serious consequences for patients and put a greater burden on the health service.

An NHS spokesperson said: “The NHS funds a network of sarcoma specialist centres which work with local hospitals to ensure that all patients who would benefit are able to get expert care, and the NHS is also rolling out Rapid Diagnostic Centres to offer the right tests quickly and conveniently for patients, helping to spot more cancers earlier and continue to improve people’s chances of survival.

“NHS staff are working hard to ensure that essential cancer checks and treatment can go ahead safely during the Covid-19 pandemic, so we would urge people with any worrying symptoms to come forward to their GP as soon as possible.”