Anyone have experience with gastrointestinal stromal tumor (GIST)?

Hi,
sorry if the post is too long, I am a father, 52, 6' tall, 188 pounds when this started and had just finished a 1/2 marathon. on June 16, 2024, I have a "cystic and solid mass measuring 7.0 cm x 12.9 cm x 11.8 cm arising from the greater curve aspect of the stomach" I equate this to a very healthy mango or small pineapple, in my stomach lining! I don't know how, I do not have a gut or room for it. I have been told this is a probable non-cancerous GIST.

I had very little symptoms when this was discovered, other than chest pain when running. Since discovering this mass, I have started to get the following symptoms: extreme fatigue, weightloss (down 20 lbs to 168 lbs), constipation, stomach pain, upper back pain, no appetite, bloating, and not to mention anxiety about the future. I take 2 tylenol every 6 hours otherwise the pain is excessive. I believe I need somthing stronger but I tried T3's (tylenol with codeine) but it made me constipated and much worse.

I am waiting for my Biopsy results, (It's been over a month since discovering the mass). In the meantime its hard not to think with the size of the mass that it's late stage...But to be positive, if it is a GIST, and non-cancerous. Is it possible to shrink and remove the tumour and not all of my stomach so I can live a somewhat normal life? or am I delusion at this point? how long to get surgery? What painkillers would people recommend for me? thinking about THC gummies but never tried them and don't want to be out of it all the time. Just the pain is constant. Wondering if Tylenol has any withdrawl symptoms.

Any other information anyone can provide would help alot. Honestly, I've talked to no professional at any length about this. I don't want to burden my wife.

Thanks,
-Tim
(from Vancouver, Canada)

I need to correct what I stated on here, I said I had a GIST all along but allow me to correct myself, the doctors are saying probable GIST but I don’t receive it for me nor any of you for I put my trust in Almighty God! Yes, Sarcoma is a rare type of cancer but for anyone going through this please pick up your sword which is the word of God and stand on his life breathed word and promises Isaiah 53:5 Psalms 103 God is our healer and our way maker, my thoughts and prayers are with you all! God bless! 🙏 I trust God in this storm and anyone needing prayer please reach out! Remember, no matter what, you need to Trust God!

My name is Jojo and I had a CT Scan in June of this year only because after radiation of my right breast in which occurred in 2022 I felt like a lump or knot around my right upper quadrant of my abdomen. Which is the top part of my abdomen has swollen and uncomfortable so the radiologist stated he saw a probable gastrointestinal stromal mass in my abdomen. I then looked it up and it states it’s a GIST. I never heard of this when I had an MRI last year with no mention of a GIST but only a legion on my liver called a hemangioma and my doctor stated he would keep an eye on it for me. Then come to find out I had a GIST all along but never knew about it til June of this year. I was surprised and saddened at the same time! Mine has been unchanged since last year which is a blessing thank you JESUS, but now I’m going for a EUS in August to biopsy it and full resection of the tumor if they are able to. I just fought right breast cancer in 12/31/2020 and I’ve never had problems with my liver or abdomen. My brother passed at age 52 of Metastasize Sarcoma in his right leg. If GIST are 2 cm or more they’re likely Sarcoma. I serve a Mighty God and I stand on his word and promises. Praying for everyone in these different groups!

I also had a 6cm Gist tumor from the greater curve of my stomach. It was about 2.5 yrs ago. I had a very experienced team that removed it. They contained it entirely along with a small sliver of stomach where it originated. Also they were able to check for any other tumor sites and a few neg. lymph nodes. I am now followed by an Oncologist and have scheduled CT scans.
My non-surgery choice was daily oral chemo (Iminitab) for the rest of my life or until it became ineffective, when I would need surgery anyway. This has been my journey but yours will be your own. I only suggest you find the most experienced team of doctors possible.
Feel free to chat with me. I'm here, I care! Sharon

Hello everyone. I have been diagnosed with a 6cm Gist located on the lesser curvature of my stomach. I have been told the the treatment is surgery. Is there any other options that make sense?

Hola buenas noches
Te agradeceré compartir tu experiencia con la inmunoterapia.
Gracias Juan

OK Tom, you caught my error....it was centimeters, still considered large by NIH standards. BTW, they only do autopsys on dead people. NOT there yet! The tissue is sent to a lab and examined by microscopy to count the number of tumor cells in a section per high power field. That determines how fast it is growing, mine had a lot.

Yes, I have a constant worry but it hides in a shadow in my brain and pounces every now and then. My gut surgeon said the average life expection is 5 years, especially without Imitinab. I have heard of some people that live much longer in similar. Are they just lucky?

I guess I would ask how they were able to determine from an autopsy that a recurring fast grow tumor was likely?
My nine-and-a-half hour GIST removal was nearly three years ago. I have a CT scan every three months and so far so good. I guess I would also ask how it got to a point where it was 6 - 7 inches. That seems huge to me.

@sharnell, NED (no evidence of disease) since early 2023 is great! But it is near impossible to shake the worry of recurrence. I'm tagging fellow GIST-ers like @ta52 @frygirl777 @cathych58 @smtoby @mermaid7272 to join the discussion again.

How often do you do follow-up appointments? What helps keep the fear of recurrence at bay or is it a constant companion?