Early Diagnosis Report Cover
Monday, June 29, 2020

Poor awareness of the symptoms of one of the least understood forms of cancer among the public and healthcare professionals, compounded by a complex diagnostic pathway, is leading to a ‘perfect storm’ of delays to diagnosis that is devastating lives, a new report launched today reveals.   

Demand Early Diagnosis, Save Lives, commissioned by the national charity Sarcoma UK reveals how, even prior to the Covid-19 pandemic, one in three (30%) patients in the UK waited at least six months after first consulting a healthcare professional before receiving an accurate diagnosis for their sarcoma. Similarly, one in six (17%) patients who had consulted a healthcare professional waited more than a year before their sarcoma cancer was diagnosed correctly.

Sarcoma is an uncommon cancer of the bone and soft tissue that can develop in almost any part of the body. Around 15 people a day are diagnosed with sarcoma in the UK and symptoms can be vague - often a growing, possibly painful lump, or bone pain if it is in the bone. With more than 100 sub-types and no ‘one size fits all’ treatment for sarcoma, catching it early is imperative, especially given that the current five-year survival rate is only 55%. National awareness of sarcoma is poor, with three quarters of UK adults not knowing what sarcoma is.

Richard Davidson, Chief Executive of Sarcoma UK, says: ‘Put simply, late diagnosis costs lives. Being diagnosed with any cancer is an isolating and lonely experience, further amplified for sarcoma patients who have to wait agonisingly long times for a diagnosis of a cancer that has such limited treatment options currently.’

Although GPs, often the gateway to a patient’s diagnosis, may see hundreds of benign tumours during their working lifetime, they might only expect to see one or two patients with bone or soft tissue sarcomas in the same timeframe. Other primary care professionals may see even fewer.

Sarcoma patients bear the brunt of poor awareness, with a third (35%) having to see a healthcare professional more than three times before they are referred for further tests. What’s more, four in ten patients were told at their first appointment with a healthcare professional that their symptoms were not serious, or were started on a treatment for another condition.

The current pandemic is only adding to an already complex situation when it comes to cancers in general. With fewer people visiting their GP, April saw a drop of 60% in the number of people in England assessed by a cancer doctor compared to the same month in 2019. There was a similar fall of 60% that month in the number of sarcoma patients referred to a sarcoma specialist through the two week wait referral system.

‘What this new report highlights is not just the need to improve awareness of what the symptoms of sarcoma are, 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,’ continues Sarcoma UK’s Richard Davidson.

Mr Anant Desai, Consultant Surgeon at University Hospitals Birmingham NHS Foundation Trust, says: ‘It is essential that our diagnostic pathways are clear. Primary care professionals need to be able to refer patients for a scan, where a trained sonographer or radiologist can determine whether there is a suspicion of sarcoma. These patients can then be referred directly to a specialist centre.’ 

There are additional hurdles faced by sarcoma patients before reaching their correct diagnosis. An inaccurate interpretation of scan results can lead to the wrong diagnosis and potentially no onward referral. When patient care isn't managed by specialists the chances of sarcoma being incorrectly diagnosed as benign increases. Sarcoma’s vague symptoms can often mean a patient can be referred multiple times, and then return to their GP with no onward action.

Patients with suspected sarcomas ought to be referred to one of 16 specialist sarcoma centres across the UK. Being treated by a non-specialised team not only increases the risk of local recurrence but also smaller (surgical) margins, meaning that the sarcoma is more likely to come back. This can be down to poorly planned biopsies or surgeries by non-sarcoma specialists.

Additional findings from the report include:

  • One in seven patients waited more than six months from the time they first thought something might be wrong until they first saw a GP, nurse or sought help at A&E.
  • A quarter of 16 to 24-year-olds waited more than a year after they first noticed symptoms before visiting a healthcare professional.
  • Of those that said they had heard of sarcoma (25% of respondents), nearly a third (29%) had no idea of what the symptoms of sarcoma are.

The report comes at the start of Sarcoma Awareness Week (29 June to 5 July 2020) which aims to put the spotlight on this uncommon cancer. Sarcoma UK will release a full report on early diagnosis with recommendations and priorities in autumn 2020.

Demand Early Diagnosis, Save Lives is available now. Follow Sarcoma Awareness Week on social media through #SarcomaWontWait.