Janet's Story

Hi, I’m Janet aged 62 from Sheffield and diagnosed with GIST in October 2017 so I’m just coming up to my 12 months.

A few months earlier I had noticed a change in bowel habit plus I was tired and breathless. After a few weeks of this I took a trip to my GP. I did the obligatory tests and a few days later my GP phoned to say I was anaemic and proteins in my stool showed some kind of inflammatory bowel disease so an urgent referral was needed.
The following Monday I attended the Gastroenterology department at the Royal Hallamshire Hospital (which was quite useful as I work there as a clinical coder) where iron deficiency anaemia was diagnosed and I needed an emergency iron infusion, which I had the following day. On the Wednesday I had a CT scan. Then all quiet for a couple of weeks as I had holidays booked but upper and lower endoscopies were booked on my return (early October) plus another iron infusion. I had my iron infusion Monday 2nd October with endoscopies booked for the Wednesday. I arrived for my upper endoscopy and the gastroenterologist asked me if anyone had spoken to me re my CT results. I said no as I had been on holiday, he then told me that they had found a 7.5 cm tumour between by duodenum and jejunum and it was probably a GIST, luckily other than a couple of polyps both endoscopies were normal.

The following week I saw my surgeon Mr Wyman at the Northern General hospital who confirmed the findings but did say it could be benign only histology would confirm this after the surgery. He arranged for a small bowel resection the following week 23rd October 2017. The surgery went well, the margins were well clear of the tumour so he was confident that it had been taken away, it was now a waiting game for the results. These weeks were the worst for me. After what seemed like a lifetime, I got the diagnosis of a high-risk malignant GIST. I was gutted of course but I think that my husband took the news worse than me but together we researched what we could and we made a pact that we were in this together and that we would beat it.

December 14th 2017 was my first appointment at Weston Park hospital where I first met my oncologist Dr Robin Young and he explained everything he could about the GIST and he answered all the questions we had at the time. The fact that I was a high risk of recurrence meant that I could go on Imatinib. I started Imatinib the next day for the next three years… with maybe an extension to 5 years if the current trial is successful and twice-yearly CT scans.

I had a scan in April 2018 and all looked good, my next one booked for October so fingers crossed for a clear result.

I seem to be tolerating Imatinib quite well I have had a few slight side effects but on the whole, I lead a relatively normal life., apart from dreadful wind and diarrhoea after certain foods… in the process of making a food diary to see what’s the worst offender! At the moment Red wine (so now a rose wine drinker) chocolate, onions and tomatoes are off the menu and water retention but daily Frusemide helps with this.

I’m so glad I found GIST Cancer UK

…it’s not only helped me realise how lucky I have been but also raised my awareness of what’s going on out there, enough to give me confidence to ask questions when in clinic.

Although I’ve never met any one of you out there, I feel as though you are my friends. For this I thank you.



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