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Teresa, Volunteer Mentor (@hopeful33250)

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

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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.

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Replies to "Hello, @hopeful33250. Yes, this is my first carcinoid tumor and I have sought a second opinion..."

Hello @amd12

I appreciate the added information. Like you, I was confused about my carcinoid tumors and the right type of surgery. So for the first two surgeries, I had the most invasive kind. As I mentioned, my carcinoids were in the upper digestive tract, very small, and I was advised by a non-carcinoid surgeon to have invasive surgery, with exploratory work on the whole digestive tract. This involved 7 days in the hospital and a large incision to deal with in recovery.

By the time the third carcinoid was found (same location) I decided to go to a university medical school near me as I just didn't want to go through another major surgery if I could avoid it. As a result, I had outpatient surgery and went home the same day. It accomplished the same thing with less assault on my body.

At this point, you do not know what kind of carcinoid you have and whether it will return or if it releases hormones or not. Once you have the surgery, a biopsy will be done and then you will have more information.

Have any of the doctors who have seen done a Gallium 68 or PET scan of the lungs? If so, which one? The carcinoid specialist or the other one?

Carcinoids are slow-growing tumors and when found early they often will not cause metastasis. While hindsight is always the best, if I had to do it again I would go with the less invasive surgery the first time around.

This is, of course, a decision that only you can make. I look forward to hearing from you again.