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Neuroendocrine Tumors (NETs) | Last Active: Apr 17 5:51pm | Replies (384)

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@marplute

Hello all I was diagnosed diagnose January of this year 2022. I have neroendocrine carsonoma .they took 6" of my lower bow and there were 8 Nodules in the area. They hope they got it all I have had a pet dotate scan. It showed nothing else was showing up they got it all they say.. I just am reading some of the comments and I'm asking myself how long before the next one shows up how often do you have to have scans. To my knowledge I don't have any side effects thanks. It's because I had had pain for over 5 years in my lower stomach but they could not find out what was causing it until they didn't CT scan in Dec of 2021. I am still raising 3 children I just want to be here long enough for them to raise them for their needs.

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Replies to "Hello all I was diagnosed diagnose January of this year 2022. I have neroendocrine carsonoma .they..."

Hello @marplute and welcome to Mayo Connect. I am sorry to hear of your NET diagnosis this year. I've had three surgeries for NETs and I understand how surprising this is. My NETs were quite small with no lymph node involvement and no metastasis and yet I had three surgeries in 2003, 2005 and again in 2016. There isn't any way to know when another one might show up. It sounds like you had clear scans after your surgery which was good.

As my NETs were in the upper digestive tract, I have upper endoscopies every other year and blood work yearly. I'm sure your medical team will come up with a follow up schedule for you as well.

You mentioned that you had lower stomach pain for several years. Is that now resolved?