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Teresa, Volunteer Mentor (@hopeful33250)

Welcome to the NETs Group! Come say hi.

Neuroendocrine Tumors (NETs) | Last Active: Sep 5 7:47am | Replies (383)

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Hello @amd12,
I'd like to join Colleen, @colleenyoung, in welcoming you to the NETs group at Mayo Clinic Connect. I'm glad that you found our group. It is understandable that you would want to find the best surgery for your lung carcinoid.

From your post, I'm assuming that this is your first carcinoid tumor. Is that correct? If so, I would strongly recommend that you seek a second opinion from a carcinoid specialist in order to discover the best surgery and treatment plan. Here is a link from the Carcinoid Cancer Foundation, listing all of the specialists by city/state and country. https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

I have had three surgeries for carcinoids in the upper digestive tract and I understand how important it is to see someone who specializes in this rare form of cancer.

If you care to share more, I would be interested in knowing what type of symptoms you had that led to the discovery of the lung carcinoid. How are you feeling now?

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Replies to "Hello @amd12, I'd like to join Colleen, @colleenyoung, in welcoming you to the NETs group at..."

Hello, @hopeful33250. Yes, this is my first carcinoid tumor and I have sought a second opinion from a center the specialized in neuroendocrine tumors. The recommendation there was different from the first, a lingula sparing upper left lobectomy instead of a full lobectomy. I'm not sure why, since was some evidence of possible carcinoid (very small) on the lingula. That's what has me confused, and I haven't had an answer that's clear to me. I have no symptoms and feel fine (except for the anxiety). This was discovered during a yearly lung screening.

Another thought– can you say a little more about why it is important to see a specialist in this type of cancer?