Hello everyone,
I had a CT colonoscopy recently to investigate several months of persistent constipation. Bloods & samples had all been ok so it was just a precautionary scan really. It showed incidental finding of a small (?) 1.9cm GIST (which I’d never heard of) in fundus of my stomach. Nothing else showed on the scan in my abdomen or pelvis, although I know it wouldn’t have shown my small bowel very well. I don’t feel unwell, but soon do feel a little tired these days. I’m 63.
I’m seeing my Consultant to discuss CT result in just over 2 weeks as he’s on holiday now, but I’m afraid I’ve been googling & feel so anxious (my mum died this week too which has been hard). I’m guessing I’ll be referred to a bigger centre (am not far from Leeds, if they have one?). I’ve read that smaller GISTS might just have surveillance, and I’m not sure how I’d feel about watch ‘n wait, I just want rid of it. And reading people’s experiences it seems that it’s common for further GISTS to appear, I thought I was just going to be fighting one tiny tumour!
I know I’m going to have to be patient & keep calm, but any words of wisdom about what to expect next, or advice what to ask my doctors etc, would be so appreciated. You seem like a nice bunch of people! Also I’ve had a phobia about gastroscopy since watching one as a student, so any advice about how to cope with that would be really helpful.
Hi cjo
Welcome to our little club, I am here mostly because my wife has Leiomyosarcoma but recently just for a change I decided to go for a quick scare having a bit of a bleed on the loo and ending up with 3 days in hospital. I had endoscopy and colonoscopy but given the all clear so that was a bit helpful - I have quite enough to cope with in other departments!
There is quite a lot of information on GIST on the main site here and of course a key element is how active the cancer is - low grade and management, watch and wait might be the simplest solution, high grade and probably best to take action.
I guess you have heard about the sarcoma specialist centres, there is indeed one in Leeds
As for the gastroscopy, I guess things have moved on some and of course a bit of sedation can really help.
<<hugs>>
Steve
