A GastroIntestinal Stroma, or Gist is a rare and slow growing cancer formed from the interstitial cells of Cajal (ICCs), the autonomic nervous system, which is the part of the nervous system that automatically regulates body processes such as digesting food.
A GIST can grow inward or outward into the peritoneum.
More than half of GISTs are found in the stomach. Most of the others start in the small intestine, although they can be found anywhere along the GI tract or even in the omentum or the peritoneum.
Two things to understand. Firstly, some GISTS are not cancerous and cannot spread to other parts of the body.
They must be treated with care. According to an expert in the USA we contacted who treats about 200 a year, you can ’upset them’. This can cause them to wake up and become aggressive. For example, a biopsy is a bad idea. And when having surgery, the surgeon must have a clear margin around the tumour and ensure he lifts the tumour cleanly from the body.
You may be interested to read a patient story from our chat room:
Richard’s story.
Richard’s GIST was found after having an all over body scan whilst contemplating his next step on prostate treatment.
"So, scan done, off to see the consultant, loins girded for some more ‘perspective’. Well do you want to know the good news or the bad news first? OK, I will decide for you. Good news, I have longer to think about treatment on my prostate. Bad news, I have to do something about the 9cm tumour found on my stomach! It is called a ‘gist’.
The most interesting thing, at this stage, was my oncologist now telling me to get the gist tumour sorted out. When that was done we could get on with the prostate. So, it seems, not quite so urgent as first thought. He recommended an excellent surgeon (colleague) in the same hospital. He made an appointment for me and off I went down a sidetrack for the time-being. Interestingly enough the theme that seems to be developing through my narrative so far continued down this sidetrack. I therefore thought you may like to come with me. I found it instructive.
Inevitably, my appointment was not for a couple weeks that left me plenty of time for worrying. To my relief the great day came and off I went to see the surgeon to decide what should be done. This was a great triumph of optimism over experience. Apparently, my notes had not arrived but he remembered well the conversation with my oncologist. He put it in ‘perspective’ for me. The ‘gist’ (ha, ha) was that this was such a simple operation that it is likely that he would get one of his assistants to do it. Not much was discussed about the nature or positioning of the tumour nor possible side-effects (that were becoming a favourite subject of mine). In fact, without my notes it was impossible to have an objective conversation at all. However, I certainly had enough information to know I didn’t want a learner at the controls when I had the ‘gist’ taken out.
It did not take much time to realise that I needed to take control of this situation too. Chris Woollams suggested, as this cancer was rare, that I searched Google for the top man in the USA who had lots of experience with gists. Good call. I did. And the bottom line was that they are relatively benign until you mess with them. Then they can wake up unpredictably. Off I went to my GP again. I asked him to find me someone in the UK I could trust for the surgery. Off he went and came up with the same name from 3 sources and an oncologist who was expert in sarcomas. (This is what I had, as opposed to a more normal carcinoma). This was going to be private, of course, but I did have insurance (although with a large excess).
The new Prof explained the nature of the tumour and that it is likely that, once removed and tested, would prove to be relatively benign and unlikely to re-occur. The surgeon (surrounded by disciples) explained very clearly to me about how the operation would be done (key hole) and we could do it on the following Saturday morning as he had time available then. I felt absolute confidence as everything was explained clearly and unambiguously to me. I had the operation on Saturday morning, Out of intensive care on the Sunday. 3 days later they chucked me out and on the golf course the following Sunday. Lubbly Jubbly!!"