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Lost with no confirmation of NETs origin: Innumerable liver lesions

Neuroendocrine Tumors (NETs) | Last Active: Mar 31, 2023 | Replies (77)
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@mbg20

Hi - I hope your meeting with the specialists was good. Would you mind telling me who you’re seeing in the northern Va area and if, after meeting them, whether they seem experienced in NETs? I have a tumor in the mesentery by my small intestines and am told it’s likely to be a NET. I’m getting a PET/CT DOTATATE scan in a week to spot other locations. I’m seeing a surgeon at Johns Hopkins who has dealt with some NETs. I’m trying to figure out if Hopkins is a good place to go and am looking for an experienced oncologist. Good luck and thanks for posting.

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Replies to "Hi - I hope your meeting with the specialists was good. Would you mind telling me..."
Teresa, Volunteer Mentor | @hopeful33250 | Mar 24, 2023

Hello @mbg20

It looks like you have received a lot of good feedback from members of this discussion group. I see that you are looking for an experienced oncologist. This is a wise idea.
NETs specialists are well trained to both diagnose and treat this rather rare form of cancer.

Have you considered having a consultation with Mayo Clinic? There are three campuses in Jacksonville, FL, Rochester, MN and Phoenix, AZ. Each campus has NET specialists. If you are interested in an appointment, here is the link that will get you started, http://mayocl.in/1mtmR63.

If you are not able to be seen at Mayo, here is a listing of NET specialists from the Carcinoid Cancer Foundation website,
--Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
Have you had the PET/CT DOTATATE scan yet? Is your appointment with the surgeon scheduled already?

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