“I asked if I could delay the surgery just long enough to attend my sister-in-law’s wedding, because my young daughter was going to be a bridesmaid for the very first time. The doctors looked at me and said absolutely not. That was the exact moment I realised how serious this was.”

Just before his 40th birthday, Nic Puntis’s life was completely upended by a rare cancer diagnosis and an emergency nine-hour operation. Yet fifteen years on, the Wiltshire property developer hasn’t just built a fulfilling life after cancer; he has spent over a decade systematically changing the way the NHS evaluates life-saving medicines for patients across the country.

To mark GIST Awareness Day on 13 July, Nic, who now serves as chair of the charity GIST Cancer UK, is sharing his story. His experience shows that our campaign theme, Life Goes On, isn’t just about personal survival. It is about advocacy, national reform, and a determination to leave the healthcare system better than you found it.

Nic first experienced symptoms in 2010 during a routine run. Severe, sudden pain that felt like indigestion led to a series of medical investigations, which revealed that he was bleeding internally. Following a four-pint blood transfusion in A&E, an endoscopy located an 8cm gastrointestinal stromal tumour (GIST), a rare sub-type of sarcoma, attached to his stomach wall.

The subsequent surgery lasted nine hours, as a significant portion of the mass sat outside the stomach. Recovery required Nic to step away from his property company. For months, he was on a liquid-only diet, making his first solid meal of mashed potato and ice cream a significant milestone. Due to a high risk of recurrence, Nic spent several years on a targeted drug therapy called Imatinib. Today, regular monitoring shows no evidence of active disease.

Two years later, while Nic was still recovering, his wife Sarah-Jayne was diagnosed with breast cancer. The couple managed their respective treatments and recoveries simultaneously while raising their young family. It took Nic two years to return to his standard routine, and adapting to these health challenges altered his long-term perspective.

Looking for information about his condition, Nic connected with GIST Cancer UK during his recovery. Appreciating the support he received, he joined their board of trustees in 2012 and became Chair in 2015.

Nic has used his experience to advocate for rare cancer patients, representing their interests to the National Institute for Health and Care Excellence (NICE). His work contributed to a change in how NICE evaluates the cost-effectiveness of new treatments, ensuring patient-reported outcomes and everyday needs are given greater weight during the appraisal process. Now 56, Nic has returned to running his property development business alongside his charity commitments.

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