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surgeons who can opeate on mesentery

Neuroendocrine Tumors (NETs) | Last Active: 4 hours ago | Replies (25)

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Profile picture for Turkey, Volunteer Mentor @tomrennie

@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.

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Replies to "@taly It can be a rollercoaster of emotions. I can relate to that. Hearing the diagnosis..."

@tomrennie Thanks. Yes, my research is usually through Mayo or PubMed, etc.

I did have a biopsy. Came up well differentiated, Ki-67 <3%, Grade 1. Of course we know Grade 1 does not equal Stage 1. So that is yet to be seen. I'm so glad you're doing much better. I've been having GI symptoms, which prompted the colonoscopy that found the SBNET, but not seriously ill. It's possible my tumor is functioning, though. I'm getting a cardiac workup to see if my heart has been affected.