Nothing can prepare you for being diagnosed with cancer. There’s shock, anger and a flurry of complex thoughts and emotions. When you’re dealing with a diagnosis, it’s hard to think about anything else. But imagine if alongside all of this, you have also been given a diagnosis that’s less commonly understood not only by the public, but also by healthcare professionals.
In my role as manager of the Sarcoma UK Support Line, this is something I deal with every day. My team are at the frontline of challenges dealing with sarcoma cancer.
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Sarcoma is a less common cancer that can develop in the bone and soft tissue, and so can affect any part of the body. Around 15 people are diagnosed with sarcoma cancer every day in the UK, and there are over 100 different sub-types of sarcoma.
According to research by Sarcoma UK, as many of 40% of patients do not receive an initial accurate diagnosis of their sarcoma. In a survey we ran, 75% of those who responded also admitted they didn’t know what sarcoma was.
But as we mark Sarcoma Awareness Month, we are determined that it doesn’t have to do be this way. With greater awareness, we can ensure that people are diagnosed earlier making treatments more effective, and increasing our capacity to fund research into unlocking the secrets of sarcoma and developing new treatments.
I’ve worked with sarcoma patients for over 25 years, including as a specialist nurse with the Oxford Sarcoma Service, and when people call our Support Line, they often tell us that for the very first time, they are talking to someone who understands not only their condition, but also the teams treating them, and the procedures involved.
Sarcoma survival rates have been gradually increasing in the UK over the last two decades and early diagnosis is crucial. We want to shine a light on the vital role that GPs, nurses and clinicians can play in recognising the signs and ensuring that sarcoma is no longer the ‘loneliest cancer.’
The most common symptom to look out for is a lump, which could be anywhere on the body. If the lump is growing quickly, or measures about the size of a golf ball, then it needs to be checked. Sarcoma cancer can also start in a bone, and people may experience unexplained pain or tenderness, which is slowly increasing, and these pains can be worse at night.
Healthcare professionals (HCPs) should also be aware that some forms of sarcoma, known as a gastrointestinal stromal tumour, or GISTs, can start in the gastrointestinal tract. With this type of sarcoma, people most often experience symptoms like fatigue, anaemia, weight loss, feeling sick, noticing blood in their poo or vomit, or discomfort around their stomach.
Most lumps and pains won’t be a sarcoma, but when it comes to a lump, size matters. if patients present with any of these red-flag symptoms, they should be referred for further tests, or to one of the 16 specialist sarcoma centres across the UK. A GP can also refer a patient directly to one of these centres if necessary.
Together, we can ensure that if sarcoma is suspected, patients are being sent to the right place for assessment and treatment. We know that the rarity of a patient presenting with sarcoma signs remains a big problem, and it’s crucial that HCPs are looking out for growing lumps anywhere on the body, or unexplained pain in the bone or joints, which might require investigation.
When someone is diagnosed with sarcoma, their lives are turned upside down. Sarcoma UK is here to support healthcare professionals and our healthcare professionals hub provides easy to access resources and best practice relating to diagnosis, treatment and care of sarcoma patients, including a printed guide for Allied Health Professionals.
At Sarcoma UK, we’re here for people for as long as they need us, and our Support Line is designed to offer practical information, reassurance, and emotional support so that people can prepare for what lies ahead of them.
The future doesn’t have to be so bleak, and we are here for every person affected by sarcoma.
Helen Stradling, Sarcoma Specialist Nurse and Support Line Lead, Sarcoma UK
Call the confidential Sarcoma UK Support Line on 0808 801 0401 (Monday-Friday, 10am-3pm); or email supportline@sarcoma.org.uk; or text 07860 058830 to speak with a specialist adviser.