Hello
In Jan 2023, with no prior symptoms , I was rushed to hospital with a perforated tumor in my small intestine. During life saving surgery, another tumor was found on my liver. After 6 weeks of waiting for the outcome , I was diagnosed with high risk GIST. I was told conventional chemotherapy would not work. I was prescribed imatinib . GIST is not curable, so I was put on palliative treatment , with a poor prognosis of up to 5 years life expectancy. I was 49 yrs old , and a mother of 3, with a teaching career I loved. I have always been fit and healthy, cycling, walking and a vegetarian. 16 months later, numerous tumors started to progress on my liver. I now had metastatic liver gist . I had 75% of my liver removed during 7 hour open surgery in May 2024. In Jan 2025, the tumors progressed again, and I now have 8 tumors, with a life expectancy of under 12 months. I am now on Sunatinib, 4 days into my treatment . My tumors are no longer operable.
I am wondering if anyone has GIST. It is a very rare cancer .
Hi Ostara07 and a very warm welcome to the Macmillan Community but sorry to hear about the journey you are on.
Navigating a cancer journey can be such a stressful and challenging time but getting support from people who have walked or are walking the ‘exact same' journey can help a lot. (I have a completely different cancer).
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated……
Living with incurable cancer - incurable patients only
…….. support groups. These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group please click on the links above then once the group pages open you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits/financial/work guidance or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community ((hugs))
I have been on my journey with 2 very rare (8 in a million and 4 in a million) type’s of Non Hodgkin’s Lymphomas….. the first was diagnosed in 1999 and this is incurable then my second aggressive type appeared in late 2013…… all we can do is turn into the storm and keep walking ((hugs))
