Anyone have experience with gastrointestinal stromal tumor (GIST)?

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!

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)

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

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

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.

Hi,
Wondering how large it was? I have a 12cmx11cmx8cm mass (waiting for biopsy results) in my stomach lining. I just need some good news that this can be dealt with.
Thanks,

Tim,
Can you push for the biopsy result? Maybe it has been misplaced. Maybe it isn't cancer. You deserve to know!
Be assertive!
Sharon

Totally Agree,
I have called twice already, told the same thing, "waiting on results". I've reached out to friends in the medical professional and none have been able to help, our medical system is overwhelmed. Friday will be 2 weeks from the second biopsy. (a month from the first failed one). I'll get a call soon I'm sure. My father went through throat cancer a couple of years ago, I took him to each radiation treatment and the care was amazing. He's 81 and cancer free. I'm hopeful I will have the same outcome.
Cheers,
-TIm

@mzjosie24, has your diagnosis been confirmed? Do you have GIST?

I had A Gist removed from my lower small intestines back in 2012 was on Imatinib for 3 years. was fine and free until 2021 and got lung cancer, had upper right lobe removed no after treatment and was cancer free until now.
yearly scan showed another Gist showed up on my liver. I had 5 high does pinpoint radiation and they got it! I will probably be on Imatinib for the rest of my life which I dread! I just turned 70 a Masonry contractor and still working! I thank god every day for my life but I don't know if I can take much more of this.