Eileen's story

About twenty-five years ago I was told I had a lump on the outside of my stomach but it was nothing to worry about so I did not...

One night I woke up sweating so much that I could wring out my hair and with a pain like very bad indigestion. I called 999 and was taken to Royal Devon and Exeter Hospital RD&E (Royal Devon & Exeter). They said I would need an operation to remove a lump on my stomach which had developed an ulcer.  They proposed to cut me from ribs to crutch, a 3-month recovery etc. The anaesthetist gave me a very bad risk assessment because of a heart condition, including a 30% likelihood that I would not be able to live alone.  As I was not suffering, I said NO. When I saw my discharge paper, there was a little word ‘GIST’. I looked this up on NHS website and the first thing it said was "A gist patient should be treated at a gist specialist centre".  Reading further I found that RD&E was not one and for the South West that meant Bristol Royal Infirmary.  I told my GP to refer me there.

I saw an oncologist. He said the best treatment was operation but I still resisted. He told me that if I changed my mind, the surgeons there could tell me different ways of operating.  About a year later, I got a cyst on an ovary. The gynaecologist at Royal Devon & Exeter said it would need to be removed. When she heard about the GIST, she said, ‘Go to Bristol and they can do both at the same time’. I went to Bristol, had both removed by keyhole surgery and walked out after 3 days.

This was three years ago...

I am 88, living an active life, living alone.  I have a 6-month scan to check that the GIST site is not having problems and it has not, as the Bristol Doctor said.

Moral -   If GIST is mentioned, insist on a gist specialist centre, even if, as in my case, it involves lengthy journeys.