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anxious4nothing (@anxious4nothing)

GIST Tumor

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

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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!!

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Replies to "I am a healthy specimen. Other than giving birth to 5 children, I had no reason..."

I can certainly understand your concern, @anxious4nothing. You are facing a very big decision, that certainly could be life-altering and I understand that you are looking for some input and help. Being age 70 myself, I can understand your position a bit better. I can only share what I would do in your position.

You do not mention where you live, but I would certainly encourage you to seek your second opinion from a university medical center or a facility like Mayo (in Minnesota, Florida and Arizona). These types of facilities would have a good team of specialists who are best skilled in order to help you. Multidisciplinary systems, like I mentioned, would have the best knowledge, skills and research behind them.

How are you feeling now that you have had blood transfusions? Do you know the exact location of the GiST?

Please make sure your surgeon has performed gist surgeries. Its different than normal surgeon. Always ask your surgein how many gist surgeries has he performed.