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Anyone been diagnosed with GIST Tumor in the stomach?

Sarcoma | Last Active: Nov 19, 2022 | Replies (19)

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@hopeful33250

Hello @anxious4nothing

Welcome to Mayo Connect. I appreciate your post regarding a GIST Tumor. I was not familiar with this type of tumor and I found some information on Mayo's website. Here is the link to that information:

https://www.mayoclinic.org/diseases-conditions/gastrointestinal-stromal-tumors/cdc-20387715

In searching Mayo Connect, I only found one person who had posted about this, her username is @mariafeeney. If you click on her username you can view her post from 2012. Perhaps she, or someone else, will respond to your post.

In the meantime, as you are comfortable doing so, can you give me some background on this diagnosis?

For example, what type of symptoms led your doctor to discover this tumor?
How long ago were you diagnosed?
What type of test or scan was used to diagnose it (from the Mayo article it appears that a CT scan or endoscopy is most often used to diagnosis this)?
What type of treatment has been suggested for you, i.e. surgery or medication?

I look forward to getting to know you better.

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Replies to "Hello @anxious4nothing Welcome to Mayo Connect. I appreciate your post regarding a GIST Tumor. I was..."

I am a healthy specimen. Other than giving birth to 5 children, I had no reason to be admitted to any hospital.

2 weeks prior to Sept 6, 2018, I had an episode where I had a horrible black, tarry stool. I felt faint and weak but I ignored it, not really knowing the severity of what just happened to me.

On Sept 6, I had another episode, no bowel movement, but feeling faint and weak. I went to my PCP who did a blood work sample, where my hemoglobin was at 6 and my blood pressure was 90/60.

She immediately stated that I needed to be in an emergency room. I went and was admitted to the hospital, where I received 2 units of blood, a CT scan and an endoscopy. At first what I was hearing was I had a “bleeding ulcer” which was biopsied and results were benign for cancer.

When I was dismissed on Sept 10, 2018 from the hospital the term now was that I have a “GIST tumor”. Surgery is recommended. I have talked to a surgeon who have advised me that a second biopsy is necessary and depending on that biopsy, would determine if my surgery will be minor or major!! I could go to sleep with my stomach intact and wake up with my stomach removed. I am right now seeking a Gastroenterologist for a second opinion. Needless to say, this journey is challenging being a 75 year old woman on a Medicare advantage plan!
Sorry, I know this is wordy but I want input on this issue!!