When Nic Puntis was told he had a rare cancer just before his 40th birthday, he could not go to his sister-in-law’s wedding because the operation could not wait. Fifteen years on, the Wiltshire man has not only made a full recovery – he has spent more than a decade changing the way the NHS evaluates medicines for patients like him.
Nic Puntis is the Chair of charity GIST Cancer UK and knows only too well the struggles that people with gastrointestinal stromal tumours (GISTs) have.
It was 2010 and Nic was out running when he found he had to stop. He had what felt like severe indigestion and was doubled up in pain. This led to a visit to a doctor who referred him for an endoscopy, which found nothing of concern. However, a stool sample discovered blood and Nic was sent for a colonoscopy.
This found his colon was covered in blood and he was urgently taken to A&E. He had lost four pints and was given a transfusion. An endoscopy the next day found what he described as a ābleeding doughnutā in the upper part of his stomach.
Just before his 40th birthday, Nic was told he had a GIST – a rare type of sarcoma cancer – and an operation was booked for three weeks later. He said: ‘I asked if I could attend my sister-in-lawās wedding as my daughter was going to be a bridesmaid for the first time. The doctors said I could not go – that was the point I knew it was serious.’
Nicās operation was much more complicated than expected and lasted for nine hours. This was because part of the 8cm tumour was outside his stomach.
At the time, he ran his own property company but had to give up work. It took him two years to return to some kind of normality.
He was on liquids for months after surgery and recalls the first time he was allowed to eat solids – mashed potato and ice cream.
Nic was found to have a high risk of recurrence and was put on a drug called Imatinib for several years. Happily, he has been cancer-free since.
Nic also had to contend with his wife Sarah-Jayne being diagnosed with breast cancer two years after his own diagnosis. Now aged 56 and living in Yatton Keynell, Nic has returned to property development.
Nic and Sarah-Jayne now run a successful cafe, Sarah-Jayneās Cafe, in Chippenham, which they opened in 2014 and they give five per cent of their profits to cancer charities.
Following his diagnosis, Nic had searched online for more information about GIST and learned about GIST Cancer UK who provided much support and advice to him.
He joined the Trustee board in 2012 and became Chair in 2015. He has advocated for the needs of GIST patients, including when speaking to organisations such as the National Institute for Healthcare and Excellence (NICE). Nic says his lobbying changed the way NICE evaluates the cost-effectiveness of medicines before they are prescribed on the NHS with more emphasis placed on the needs of patients.
Nic is passionate about increasing awareness and understanding of rare cancers among the public and health professionals. He has met many patients at different stages of their own cancer journey, some of whom have since died.
He said: ‘I see myself as lucky. Iām not religious but someone said to me “do you think what happened to you – your diagnosis, illness and recovery – was divine intervention to help others?” I had never thought of it like that before.’
Nic is a firm believer in the importance of having a positive mental attitude. ‘Wherever you are in your journey, always have a positive mental attitude. I believe it helped me to be healthy.’
Sarcoma UKās Chief Executive, Richard Davidson, said: ‘Nic’s story is a remarkable one, not just because of what he has been through personally, but because of what he has chosen to do with that experience. A nine-hour operation, months of recovery, and a simultaneous family diagnosis would test anyone’s resolve, yet Nic has spent the last 15 years channelling everything he went through into making things better for others. His advocacy work, including the way he has helped influence how NICE evaluates the cost-effectiveness of medicines, has had a real and lasting impact on the lives of GIST patients across the country. As we mark GIST Awareness Day on 13 July, Nic’s story is a powerful reminder of why awareness matters, and of what one determined person can achieve when they refuse to let a diagnosis define the limits of what is possible. At Sarcoma UK, we are proud to stand alongside organisations like GIST Cancer UK in ensuring that patients with rare cancers like GIST are never left without support, information or a voice.’
