Sarcoma Awareness Month: Sarcomas demand urgent awareness and education to prevent poor outcomes
23 July 2024
Dear Editor,
After months of enduring countless misdiagnoses, I was finally diagnosed with rhabdomyosarcoma, a rare and aggressive form of sarcoma originating in the soft tissue. The experience of being misdiagnosed, from being told my symptoms were due to stress to the actual cause being a large tumour, fuelled my determination to raise awareness and change perceptions about rare and deadly cancers.
There is an immediate and critical need for increased awareness and education surrounding sarcomas. The persisting lack of understanding often leads to alarmingly high rates of misdiagnosis. Currently, the average time for a sarcoma diagnosis is about 6 months, posing a significant danger and can be potentially fatal. Shockingly, only 1 in 10 individuals are familiar with it. This statistic stands in stark contrast to more widely recognised cancers such as breast, bowel and lung cancer, where widespread awareness and knowledge among medical professionals of early warning signs exist. Sarcomas, however, are rarely discussed due to their rarity: for every 100 cancer diagnoses each year in the UK, only 2 are sarcomas.
Healthcare professionals need to receive better training and resources to help identify suspicious symptoms earlier, such as increasing lump sizes and persistent pain (amongst others) and to refer these cases for further evaluation promptly. Slow referral of patients for diagnostics or specialist input and lack of suspicion that it could even be a sarcoma are key issues requiring urgent attention. All too often, such instances lead to poor outcomes and necessitate more invasive patient surgeries. Therefore, it is critical that GPs and clinicians also consider sarcoma in their differential diagnosis and ensure appropriate assessments to improve patient outcomes, thereby offering hope for a happier future.
On a brighter note, charities likesarcoma.org.ukare doing an exceptional job raising awareness about misdiagnosis issues, funding crucial research and advocating for improved treatment.
Best,
Ngozi Onwuchekwa, cancer survivor
Sussex, United Kingdom
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