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Welcome to the NETs Group! Come say hi.

Neuroendocrine Tumors (NETs) | Last Active: 2 days ago | Replies (410)
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@amd12

Hello, everyone. I just signed up for this group and hope I'm in the right place. I was diagnosed several weeks ago with what looks to be a typical carcinoid tumor of the lung. There are smaller nodules that could be something, but too small to tell. Anyway, the recommendation is for either lobectomy of the upper left lung or lingula sparing upper left lobectomy, which should leave a bit more lung volume. I am more terrified of the surgery than I am of the tumor right now. Has anyone had this surgery and how did the recovery process go? Thanks for any insights you may have.

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Replies to "Hello, everyone. I just signed up for this group and hope I'm in the right place...."
Colleen Young, Connect Director | @colleenyoung | Nov 24, 2021

Hi @amd12, welcome. You've certainly come to the right place. I can imagine that you are terrified to have lung surgery. I'm tagging fellow lung NET members @gapsc @mgreene as well as @hopeful33250 to join this discussion.

When do you have to decide which surgery to have?

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Teresa, Volunteer Mentor | @hopeful33250 | Nov 25, 2021

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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