Why your voice counts in the fight against cancer

The Director of Research and Policy at Sarcoma UK explains how a recent consultation has made a huge impact and a newly published NHS England service specification will improve outcomes for patients living with this rare form of cancer:

Sarcoma is a cancer of the bone and soft tissue that can affect any part of the body, from the muscle or bone, to tendons and blood vessels.

No cancer is straightforward, but sarcoma is particularly complex in the sense that it brings with it a domino effect of challenges when it comes to awareness, diagnosis and treatment.

Around 15 people are diagnosed with sarcoma every day in the UK, regardless of their age or sex. There’s a lot we don’t know about it, but one thing we know for sure is that awareness of it is low. According to a YouGov poll conducted in April 2019, three quarters of people in the UK do not know, or are not sure, what sarcoma is.

As an uncommon cancer, it may not be at the forefront of any healthcare professional’s mind when seeing a patient. To add to this, and the fact that sarcoma has more than 100 sub-types, it can grow internally, completely unnoticed, making early diagnosis even trickier. Just over a quarter (27%) of sarcoma patients were told their symptoms were ‘not serious’ or were started on a treatment pathway for another condition. Most diagnoses of sarcoma take place when the cancer is the size of a large tin of baked beans.

Survival rates for sarcoma are poor. Eight in ten patients will live up to a year beyond their diagnosis, but this falls dramatically to 55% when looking at a five-year survival rate, and this needs to change.

We know that survival rates increase when patients are treated in a sarcoma specialist centre, of which there are 16 across the UK, under the care of a dedicated sarcoma multi-disciplinary team (MDT).

Having the right specialists who know how to treat and manage these cancers in these hubs of expertise, leads to better outcomes for sarcoma patients. It’s one of the cornerstones of the revised service specification for sarcoma services in the UK. It’s the first time that all sarcoma services will be commissioned to deliver the same level of service to patients across England and Sarcoma UK is delighted to see its implementation.

Having contributed to and been supportive of this line of work for several years, we’re aware that even after diagnosis, sarcoma patients are not always referred to or treated at these centres. We’re hopeful the revisions add further clarity and emphasis about why these centres are so important when it comes to offering patients the best care, whereby their case is discussed by a designated MDT.

Whilst early diagnosis sits outside the remit of this specification, it has a clear impact on patient referral beyond the point of diagnosis. As sarcoma is a less common cancer, understandably patients and GPs won’t necessarily know the symptoms being presented are in fact cancer. In such cases, patients are being referred to other specialities, such as GI, dermatology or fracture clinics before finally being referred into sarcoma teams. These delays can not only be hugely destabilising but also devastating for the individual and their families, and prove to be a vital factor in receiving curative surgery or not.

For us, it boils down to several key things: getting a patient diagnosed correctly and earlier, and on the right pathway sooner to receive the right treatment by the right people with the experience and expertise to do so.

As with all cancers, time is a crucial factor. We’re hopeful that changes in the service specification – that referral pathways must be clear, known and promoted – means that when there is a suspected or confirmed sarcoma, the patient is referred directly to the appropriate centre for treatment.

We’re also pleased this service specification clarifies patients who require specialised surgery, such as for retroperitoneal sarcoma or gastrointestinal stromal tumours (GIST), helping to ensure they are operated on in specialist centres which have the expertise, both in surgery, but also in highly specialised infrastructure to support recovery and rehabilitation.

As a charity, it was important that Sarcoma UK was able to contribute to the approval of the service specification. Having promoted this at the public consultation stage to our supporters, what became abundantly clear was an understanding from respondents about why this issue was so important to engage with, alongside a clear desire to be a part of that process to affect positive change.

Feedback from NHS England was that there were five times as many positive respondents to the sarcoma service specification consultation in support of the implementation than a consultation would normally receive, and we believe this is something to be applauded.

It demonstrates the benefits of bringing in and involving patient organisations in both the development and engagement around such consultations, and sends a strong message around collaboration with supporters to ensure their voice counts and makes a tangible difference.

Sarah McDonald

Sarah McDonald is Sarcoma UK’s Director of Research and Policy.

With more than twenty years of experience working within the NHS, research, and health sectors, she works actively alongside partner organisations including the Association of Medical Research Charities (AMRC), The National Cancer Research Institute (NCRI), National Cancer Registration and Analysis Service (NCRAS).

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  1. Christopher James says:

    I feel so much improvement is needed in this field and through my own experience its so easy to see why early diagnoses is being missed. I will not go into my own health issues here but I feel badly let down by my previous GP and feel Im not going in the right direction with my current GP. Its amazing how the Drs feel Im so immune to this. It would be beneficial if the waiting times from patient seeing Dr to getting the CORRECT scan and seeing the CORRECT specialist would be cut in half. Im fed up Drs thinking the answers in a blood test.

  2. Kay King says:

    This is brilliant news. I’m at an increased risk of soft tissue sarcoma due to the mantle radiation I had for hodgkin’s lymphoma in 1990. It’s been difficult getting my GPs to understand this. It took 3 months to get an abdominal lump removed, as I was passed from pillar to post to begin with. My surgery was at my regular hospital, even though I’d expressed my concern about not being sent to a sarcoma specialist. I get my results later this morning.