I am now 60 but had my first run in at 43.
I was taken into John Radcliffe in Oxford with suspected Appendicitis. It turned out to be a tumour on the bowel which was cut out. This was in 1998. The Tumour was sent to America for analysis and the report came back as a GIST. After recovery from the operation I was sent to Oncology at the Churchill and was told no treatment was required.
Over the next 5 years I was regularly scanned, decreasing the amount of scans until at year 5 I was told I was free of disease. In 2007 we moved to Lincolnshire. In 2009 I thought something was wrong as I had a pain so my doctor sent me to Boston and I spent the day being looked at. I raised the subject of my Gist but the doctor dismissed that, telling me it was a hiatus hernia. On my insistence I was ultra scanned which revealed something wrong with the Liver. Again I was told it could not be GIST as it does not effect the Liver. I was diagnosed with a complicated Cyst and sent home. This caused a delay in my referral for a CT scan but once that was done I was quickly referred to Nottingham Queens and operated on with a two thirds liver resection. .
After a week at home I developed an infection and had to spend another week in hospital. Last year another tumour was spotted on a CT scan, but a bigger tumour was missed outside the liver. Luckily the surgeon at Queens referred me to a PET scan and it was picked up. Both were operated on. Now I have another tumour, grapefruit sized in the intestines which I am scheduled to have out on the 29th at Addenbrookes. I have a list of problems that I have in my care but now I am in the hands of Dr Bulusu I feel more confident. My GIST is wild type.
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