Anyone have experience with gastrointestinal stromal tumor (GIST)?

Thanks Sharon,
I feel a little bit left in the dark. Personally, I think our canadian medical system is stretched to the breaking point. It took me multiple daily trips to the ER and over 40 hours of waiting to get to this point. I still have not talked to my family doctor as she has passed it off to my specialist. I wish I had the knowledge of building a medical team. Not even sure it's possible in Canada to choose. I have a specialist but i talked to him before the endoscopy and said I would get results in 3 days, it's been 10 days and still waiting, this is after a failed endoscopy which took 2 weeks. A friend who is a nurse told me if it ends up being cancer, I should pay to go the US, she has seen the wait times to be too long in canada. I'm in Vancouver and it's only a couple hours to Seattle but I wouldn't know how to begin to plan that out. Plus, the cost would probably prohibitive.
Anyway, thanks for listening, sometimes I just need to put my thoughts down.

Tim,
I'm sorry to hear about your stomach mass, probable GIST. It sure seems to be a long wait for diagnosis. The chemo drug to shrink the GIST is Imatinib, a pill taken by mouth. There is a lot of information online about it. You could research it there. So you wouldn't be sitting with an IV line in your arm. Don't panic...there is a lot to come, but try to take it step by step and find the best, most experienced team available. I am lucky to live in Seattle and had great care and outcome. My journey was about 16 mos from diagnosis to cancer free with CT scans at intervals for follow-up. Your journey will be different. Honestly, probably longer. It depends on so many variables and that's why you need an experienced team so badly. Someone to rely on who knows the answers to your questions and can map out a plan for you.
I don't know much about the stomach pain but your GP or the specialist that did your biopsy should be able to help you control it.
Tim, I hear you about waiting! All this seems to operate in slow motion. It's difficult when you want them to just get this thing outta-me! Have patience..keep busy, pray, meditate...start a project.
I'll listen, Sharon

Hi,
I read your comment. I'm very new to this and still waiting for my biopsy results. I'm a 52 year old father in good health. But I have a mass 12cmx11cmx8cm in my stomach lining. It's been over a month since I found this out. Any day I'll get my result of my biopsy. I'm trying to stay positive. It is a probable GISTas the specialist said (after talking to me for 10 minutes). I believe my best case is to somehow shrink the tumour and then surgery to remove it. The issue is obviously the size. So, the chemo you chose was to shrink it? then how long was the recovery of surgery? Would you have any advice (please be brutally honest). Did you take any pain meds. Currently, the pain is constant and i take 2 tylenol every 6 hours.

Thanks for your time.
-Tim

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.