According to Sarcoma UK, sarcomas are uncommon cancers that can affect any part of the body, on the inside or outside, including the muscle, bone, tendons, blood vessels and fatty tissues. The three main types of sarcoma are soft tissue sarcoma, bone sarcoma and gastrointestinal stromal tumours (GIST). There are around 100 different sub-types of sarcoma.

We turned to Sarcoma UK to learn more about this condition and to call attention to Sarcoma Awareness Month, which is in July. Sarcoma UK is a national charity that funds vital research, offers support for anyone affected by sarcoma and campaigns for better treatments. We spoke to Megan Fletcher, Early Diagnosis Officer for Sarcoma UK.

What are the challenges in diagnosing sarcomas?

Sarcomas are not diagnosed as quickly and accurately as they could be. Patients are often unaware of its symptoms, and don’t visit their general practitioner (GP). 79% of sarcoma patients had not heard of sarcoma before their diagnosis. Improving this is essential, as it means an individual is more likely to recognise their symptoms as potentially cancerous, go to a GP, and increase the chances of them being diagnosed faster.

As sarcoma is uncommon and can present like other diseases, GPs can sometimes struggle to identify it. At their first appointment, 39% of sarcoma patients were either started on treatment for something else or were told their symptoms weren’t serious. Only a fifth of sarcomas are diagnosed after an urgent cancer referral from a GP, showing that GPs do not recognise the signs and symptoms as being that of a possible cancer and send patients on the right pathway. Patients also have to see GPs multiple times before their symptoms are taken seriously, with 35% of sarcoma patients seeing a healthcare professional more than 3 times before they were referred for further tests.

Getting the right diagnosis can be very slow, with 30% of sarcoma patients taking more than 6 months to receive an accurate diagnosis. Sarcomas are often missed on scans, either due to machines being misused or scans being misreported. This means patients with sarcoma are incorrectly told that they don’t have cancer and are consequently diagnosed at a later stage, and less likely to be offered curative treatment.

It is vital that as soon as sarcoma is suspected, patients are referred to one of the 16 specialist sarcoma centres across the UK to ensure they receive an accurate diagnosis and receive the best possible care. Sarcomas are extremely complex, and specialist centres have the expertise in this very rare disease required to give patients the best care. For example, a specialist pathologist is needed to ensure the type of sarcoma is accurately diagnosed and can be treated correctly: Diagnosis from non-specialist centres which were then reviewed by expert pathologists resulted in a major change in diagnosis 20–30% of the time. Ultimately, patients who are treated by a specialist sarcoma team have better outcomes, with the chance of survival post-surgery being significantly higher if surgery is co-ordinated by a specialist centre.

What are the current treatment options for sarcomas?

The treatment options for sarcoma include surgery, chemotherapy, and radiation therapy (with proton beam in certain circumstances and radiofrequency ablation for some lung metastasis).

What does Sarcoma UK plan for Sarcoma Awareness Month?

We know that only 1 in 4 people in the UK have heard of sarcoma, so creating awareness is a hugely important part of what we do. Sarcoma Awareness Month every July is an opportunity to talk to the press and ask our supporters to help amplify our messages.

This year, we are concentrating on action. Early diagnosis of sarcoma is a vital topic for us. We are launching practical projects to help clinicians, healthcare professionals and the public recognise and diagnose sarcoma faster and more accurately, which ultimately will save lives.

We have also partnered with Genomics England to highlight the importance of genomics in diagnosis with a range of patients, researchers and others contributing stories for a national press rollout through July.

Keep up with our activities this July on our website.

Can you tell us about the research projects Sarcoma UK is currently funding?

As a rare and complex cancer with few treatment options beyond surgery, research is vital to improve outcomes for people affected by sarcoma. Sarcoma UK has invested over GBP 5 million into research projects since 2009. We have just announced funding for nine new projects taking place in universities across the UK, exploring everything from cancer-bursting viruses as a potential new treatment for sarcoma to making treatments more effective in children.

Lots of the research we fund focusses on understanding sarcoma better in the laboratory, such as exploring particular genes which we know are important in how sarcoma develops. Researchers are already taking this knowledge to the next level through new work, developing ways to target these important genes and personalising treatments to each patient’s needs. Some research is focused around improving the quality of life for patients, such as tackling the anxiety many people feel around their sarcoma coming back after treatment and making the journey to diagnosis shorter and more straightforward. Ultimately our research programme supports the best science to improve care for people with sarcoma through more accurate diagnoses and better treatments.

Sarcoma UK has recently appointed a Patient Involvement Coordinator. Why did you see a need for this role and what is their function?

Sarcoma UK has an established, dedicated network of patients and supporters who have helped direct our work since the creation of the charity over 10 years ago. In February 2022, Sarcoma UK appointed a Patient Involvement Coordinator to ensure the voice of the sarcoma community is represented throughout the organisation’s work. Not only is this fundamental to our vision, but patient involvement brings a unique perspective and true insight into how the charity should operate, the services it will provide and the research it funds.

There are a number of significant benefits for organisations which involve supporters, including better informed decisions (less wastage in terms of financial and time costs), as well as bringing staff closer to the lived experience of people affected by sarcoma.

An example of recent patient involvement at Sarcoma UK was the recent Research Grant applications. Research projects we fund are now selected with the help of sarcoma patients and their families. Our Research Grant Lay Reviewers help to inform researchers of the things that matter most to people affected by sarcoma, evaluating each proposal on the relevance and importance of the project, the way the researchers communicate to non-expert audiences, and the quality of plans to involve patients in the research.

Many thanks for your time and for the interview.