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@hopeful33250

Hello @james8117 and welcome to Mayo Connect. I can certainly understand your surprise at the diagnosis of NETs/carcinoids. A lot of us with NETs, have had the same experience. In my case, I was having a routine upper endoscopy and the first carcinoid was found in the duodenal bulb. Since then, I've had two more surgeries for carcinoids in the same location. I've never had any carcinoid symptoms. I'm assuming that you probably did not have any symptoms either.

As you are new to this diagnosis and to this discussion group, I would like to invite you to the NETs support group which meets virtually, via Zoom, on the first Thursday of each month at 5:30 p.m. EST. I will put your name on the list to receive information about this meeting. We often have a speaker who is on the staff of Mayo, Jacksonville, and we also have time to share with each other. It's a great way to get answers to your questions and not feel so alone.

I'm glad to hear that you are being evaluated at Mayo in Jacksonville. There are very good NET specialists there. Do you know yet what doctor you will be seeing or what specific tests you will be having?

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Replies to "Hello @james8117 and welcome to Mayo Connect. I can certainly understand your surprise at the diagnosis..."

Wednesday I am having a colonoscopy and a double balllon something, I’m assuming endoscope? During this I guess they will take tissue samples and see if there are other issues not detected by MRI and CT last week., from there I’ll meet the gastro Dr and hopefully the surgeon to go over the next step. I still feel Nauseous, not because I have any symptoms, nauseous because this is has come as a total shock. The good thing so far is from the day that the carcinoids were found to the colonoscopy and ednoscope will be 7 days. I pray that I have no other issues with colon area and again I pray that with surgery the cancer can be removed

Hi Teresa,
Can you put me on the list to join the zoom meeting as well? I have recently been diagnosed with NET. What a shock!
I am going to Sloan Kettering for treatments. I am not sure what is in store for me. I am trying to take one day at a time, but that is easier said than done.
thank you for your imput.