Hi
starting in 2022 I had 2 emergency bowel resections 2 weeks apart that resulted in them finding a dislodged Gist. At the time they advised me they were putting me on chemotherapy tablets as it was “not cancer but it is like cancer” something which I still do not fully understand.
I recently went back into hospital in April for a third resection and a scan in which they discovered that it had spread to my liver, and today found out that there is nothing more they can do, and it will be terminal and but put me on stronger tablets
I guess the denial stage kicked in and now it’s all sunk in I don’t even know we’re to turn, I’ll admit I’m not the sharpest tool in the shed and I still don’t fully understand what it even is I’ve got. I’m hoping that at least if I can understand it, and find out what I can expect in my last year. Getting the terminal diagnosis we’ll see you for a scan in 2weeks feels like I’ve been kicked onto the curb without a map
All I really know is that is a rare cancer esp in my age group (30s) and that it’s all a case of “bad luck” as the dr said
thanks for any assistance
Hi Skelton86
Sorry to hear about what you have been going through, We have quite a lot of information on GIST here and you might like to come and join us in the Soft tissue sarcomas forum
My wife has Leiomyosarcoma and when she was first diagnosed I did not understand that is was cancer - perhaps someone else was confused by the sarcoma term. Her cancer was not found until after it had spread (long story!). We were told that they would try chemotherapy but that if was not always helpful but in her case after a second round of chemotherapy her cancer went to sleep - no evidence of progression in about 10 years now.
There is also a lot of information about GIST on the sarcoma UK website that might be useful.
<<hugs>>
Steve
