Anyone have experience with gastrointestinal stromal tumor (GIST)?

On may 12, 2025 i woke up at 1am and i was feeling really bad and very cold but i just shrugged it off and went to work for 6am.

I was at work when my life changed. I went to the bathroom at 8am and I had to poop, there was no pain but I did feel sick like I had food poisoning. Anyhow I was finishing up when I noticed there was a lot of blood and I was terrified. I didn’t know what was wrong but I knew something was wrong. I called my supervisor and said I have to leave and I left. I went home told my girlfriend what was wrong and she drove me to the hospital. Luckily the ER was empty and I was seen immediately. They asked me questions and pressed down on my abdomen and asked if that hurts but it didn’t. They admitted me and soon after that I was cold very very cold, I started to shiver uncontrollably, they gave me 3 blankets and I was still cold and shivering, I then asked to turn up the thermostat to 78. Finally I started feeling warmer. Shortly after they did a CT scan on my abdomen and sent me back to the room. It was now around 12noon and I laid there until 2:30 when they told me I had a large mass. They did not have a radiologist on staff so they sent me via ambulance to the Oschner main campus in Jefferson, LA.
Soon after being admitted the surgical staff came to see me and explained what was going on. They said the mass was large and I was scheduled for surgery may 15. I was scared because I never had surgery before. So the 15th cane and I was brought into the surgery area, they gave me shots in my lower back to numb me and put vibrating wraps on my legs and cushions on my heels and I was rolled into the OR and moved onto the operating table which was very cold solid steel bed. They then put the mask on me and I was breathing normally, next thing I knew I was in the recovery room, I didn’t even remember falling asleep. They brought me back to my room and when I was fully awake the surgical oncologist explained to me what they found. The GIST was 17cm or roughly 6.67in, it was very large but they were able to remove it in one piece along with 2in of intestines. They discharged me on may 18 and I learned first hand practically everything you do you use your abdominal muscles. Weeks later I healed really well and I started taking gleevec July 1.

Because I am at a high risk of recurrence I have to take gleevec for six years and possibly for the rest of my life. The doctors told me that most live full lives while taking gleevec.
It’s also rare for someone my age (38) to have a gist this size.

It’s now august 23 and I haven’t had any serious side effects yet, but some days I do get sad when I think about the future. Will I be alive in 2030? If I have kids now will I see them grow up? What happens if it spreads to my lungs or stomach? What if my girlfriend and I break up? Who would want to date someone with cancer?

I definitely see things differently now, I realized I did not want to work 7 days a week anymore, I want to work a normal work week 40hrs and not 60-80hrs. So far my supervisors have been giving me the weekends off so it’s been nice hopefully it can stay this way.

I try to stay positive everyday and hope that in 6 years I’ll be cancer free

@seni246 There is never a bad Q to ask. The worst Q is the one not asked. I recommend MedPub for peer-reviewed articles that discuss various aspects of your particular xcr. Keep a dictionary nearby! Reading articles will help you formulate Qs for your oncologist, surgeon, and other medical team members.
Sending you my best regards, Lorraine