A Hayling Island woman who discovered she had a rare cancer during a routine GP visit was awarded a prestigious national honour for her campaigning work.
Nicola Crowson, 48, won the Sarcoma Shining Star Award for Volunteer Achievement of the Year in recognition of her tireless advocacy for better diagnosis and treatment of sarcoma, a rare cancer accounting for less than 1% of all cancer diagnoses.
Nicola, 48, has become an advocate for better diagnosis, treatment and support for people with sarcoma, even addressing MPs in Parliament.
It was in 2019 that Nicola had taken her son, then aged three, to the GP. She had noticed she herself had been losing weight everywhere except in one leg, which had a painless lump behind the knee – to the extent her jeans were tight around one leg but not the other.
While seeing the GP with her son, she mentioned this to the doctor. The medic was concerned by the mango-size lump and immediately booked Nicola in for an ultrasound two weeks later. Nicola was referred to a local hospital but, due to delays and lack of specialist knowledge, Nicola’s mother paid for her to see the same consultant privately who diagnosed that she had myxoid liposarcoma. There is an average of 72 cases of myxoid liposarcoma diagnosed every year in England.
Nicola, who is Associate Head (Students) in the School of Architecture, Art and Design at the University of Portsmouth, had radiotherapy and surgery at cancer specialist hospital The Royal Marsden in London. A 140-mile round trip from home, it was the nearest specialist sarcoma centre to her. She travelled daily for five weeks during treatment.
Life continued for Nicola but at the end of 2023 her leg again felt not right. In January 2024, a lump was found in her thigh and more radiotherapy and surgery followed. Currently she receives regular scans to monitor her wellbeing.
Nicola had first discovered charity Sarcoma UK when her oncology team suggested she look at their website and resources as a trusted, reliable source of information instead of scouring the wider internet for information. Since then, Nicola has become involved with the charity in several ways – taking part in fundraising events such as the London Marathon and Glitter Ball as well as Sarcoma Awareness Month.
She said: ‘Having sarcoma can be really lonely but I found a family in Sarcoma UK and I want to do things for them.’
Last year, she joined Sarcoma UK’s State of the Nation Advisory Group to work with other patients, clinicians and researchers to shape the findings and recommendations of a report called Unique Among Cancers, a comprehensive review of sarcoma care across the UK. It looked at the experiences of patients, families, clinicians and researchers – and called for action to improve sarcoma services and tackle issues including misdiagnosis and late diagnosis. The report was launched at Parliament before an audience of MPs when Nicola gave a speech detailing her story.
Nicola said: ‘I wanted to use the skills I have and I’m not fazed by talking to audiences. I wanted to do something that has a legacy to it. I’m using my voice and story to help others.
‘As a patient, you often feel at the mercy of systems you can’t influence. Being part of this review gave me the opportunity to change that – to help turn difficult experiences into a catalyst for real, lasting change.’
Sam Hackett, Sarcoma UK’s Healthcare Professional Engagement Lead, said: ‘Nicola is exactly the kind of advocate the sarcoma community needs. She is passionate, articulate, and determined to improve outcomes for others. From running marathons to addressing Parliament, she’s shown extraordinary commitment. She has brought not only her personal experience but also her professional skills and determination to lobby for real change in sarcoma care. I am delighted to see her recognised with this well-deserved award.’
