Hilary's Story

Early December 2005, I had a granary type bread sandwich mid afternoon, dashed to an evening board meeting, had chronic indigestion, felt very shivery and fluey, went straight to bed when got home and fully expected to be off work the next day with flu. I woke up the next day feeling fine.

About 2 weeks later felt uncomfortable in the breast bone area, decided to go to the doctor, told him about the flu type feeling and the discomfort, he decided (without an examination) that I had an ulcer and sent me for a blood test, to rule out helicobacter pylori.

Felt definitely under par through the Christmas period, a bit of discomfort and slightly breathless. Went back to the doctors to see about the blood test results after Christmas. No sign of HP so he decided I had an ulcer and put me on Omprezole to quell stomach acid, even though I hadn't had any sign of acid indigestion ever. He also told me I was slightly anaemic and told me to eat more red meat and take a multi vitamin with iron in it.

Throughout 2006, went back to see the doctors every 2-3 months or so and asked him how long would I have to take the Omprezole as he assured me that this ulcer would eventually heal itself, he just told me to carry on taking the tablets. Eventually nearly a year to the day I saw another of the doctors in the Group Practice and insisted that he sent me for tests or something.

I opted to go to Rochdale Infirmary and saw a specialist there in January 2007 who was very thorough, I was due to have a gastroscopy in the middle of February. Went back to the doctors early February, feeling very breathless and tired (we were having our bathroom renovated, and I thought the breathlessness was due to a dust allergy) he prescribed an inhaler and some prednisolone, he sent me for another blood test. 2 days later I collapsed and went to the local Go to Docs as it was a Saturday, the locum doctor on duty took one look at me and said that I needed to go to hospital immediately for a blood transfusion, as she could tell that I was severely anaemic, she also asked if she could examine me and distressingly for me, told me that she thought I had stomach cancer.

I had 3 units of blood the next day and the hospital duty doctor contacted Rochdale Infirmary to speed up the gastroscopy which I ended up having 2 days later. It was confirmed immediately that I did indeed have stomach cancer and the specialist felt that I was beyond treatment but asked me to come back later that week after he had spoken to his team, it was then that the resident GI surgeon, Mr Senapti, diagnosed (fortunately for me) a 13 cm GIST on the entrance to my stomach and told me that he felt he could rid me of this by performing a total gastrectomy, this was done 10 days later on 6 March 2007 (he also removed about 5% of my liver).

After 15 days of tough love at Rochdale Infirmary I was sent home to recuperate with an appointment to see the surgeon 2 weeks later to find out the results of the histology/biopsy report on the stomach and GIST.

I was told that I had low malignancy and I would possibly not need any further treatment, however I was to go and see Mr Leahy at the Christie Hospital, he confirmed that I wouldn't need tablets at this time and that I would be monitored with regular scans and gave me the 50/50 in 5 years time prognosis.

So here I am 11 weeks later in May 2007, getting to grips with the newly modified and 2 stone lighter me and feeling stronger every day, I can't say it was easy for me or my family, but I survived and recovered with healing and prayers and the brilliance of my surgeon Mr Senapati at Rochdale Infirmary.

Update August 2009:

In June 2008 after 15 months of NED, a GIST was found in my liver and I started the magic tablet Glivec, so far so good, my tumour has shrunk and I am managing my life with the tablets OK....I am grateful for all the support the Christie in Manchester and my fellow Gisters give me, and I am also encouraged and grateful by the ongoing research and advancement in the knowledge and treatment of the condition known as GIST.

Originally posted on 23rd May 2007, and subsequently updated 24th August 2009.

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