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Looking for a surgeon for carcinoid tumor in the mesentery
Neuroendocrine Tumors (NETs) | Last Active: Aug 10 1:44pm | Replies (31)Comment receiving replies
@tomrennie I've had a rollercoaster of emotions. It was a NP at the gastro practice where I had my colonoscopy who told me. It was found at the juncture of large and small intestine. I'm so glad I did some research. She said it was not going to be any problem at all because it's grade one, and that I would be well served to go to the local surgeon and oncologist (who are not NET specialists). I insisted on a referral to Mayo.
Thanks for the links. I called the Surg Onc dept and the nurse said Dr. Wasif does significantly more of the ileal NET surgeries, so I went with him. I'll see him on 8/14 and I guess get my Dotatate PET results then. It's a little nervewracking.
Have you been on this NET journey long? How are you doing with it all?
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@taly It can be a rollercoaster of emotions. I can relate to that. Hearing the diagnosis is definitely a gut punch. It takes your breath away. You just have to take the process one step at a time. It is great to do research. Education about the disease is important. Please make sure that your research is with reputable sources. There is a lot of misinformation out there. This is all stressful enough. Adding additional stress by considering incorrect information isn't helpful. I know from experience. I was diagnosed in 8/22. I have been at this for four years. I was very sick, when I got diagnosed. I am doing great now compared to then. Did you have a biopsy that diagnosed your NET? How did you learn that you had a grade 1? Thanks.