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Typical Carcinoid Tumor in Lungs

Neuroendocrine Tumors (NETs) | Last Active: Jan 31, 2023 | Replies (31)
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@tonyhasumners

Diagnosed 1/27/23 lung NET
Bronchoscope on 1/24/23 results on 1/26/23 lymph nodes chest ok but nodule atypical carcinoid NET grade 1. Lung Dr positive for treatment with surgery robotically. Oncologist however is concerned with metastasis as 2 nodes lit up in my neck on PET scan. Is that usual for metastasis?

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Replies to "Diagnosed 1/27/23 lung NET Bronchoscope on 1/24/23 results on 1/26/23 lymph nodes chest ok but nodule..."
Teresa, Volunteer Mentor | @hopeful33250 | Jan 31, 2023

Hello @tonyhasumners and welcome to the NETs discussion group on Mayo Connect. I moved your message to this existing discussion group on carcinoids in the lungs. We have other members who have discussed carcinoid in the lungs such as @rogo @melmangen and @coco1, whose husband has lung NETs.

I can understand your concerns as two different doctors are offering different opinions on treatment. Have you considered getting another opinion prior to any decision on surgery?

The Carcinoid Cancer Foundation (CCF) has a list of specialists who work specifically with NETs patients. Here is a link to the website listing these specialists,
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
Mayo Clinic has NETs specialists in their three locations (Minnesota, Florida and Arizona). If you would like to get a second opinion from a Mayo doctor, here is a link that will help you to request an appointment, http://mayocl.in/1mtmR63. If traveling is not an option for you, virtual appointments are often available.

How are you feeling now? Are you having shortness of breath or other symptoms? Have you considered getting a second opinion?

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