1. < Neuroendocrine Tumors (NETs)
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Anyone had a recurrence of neuroendocrine (NET) Lung cancer?

Posted by bjbrenda @bjbrenda, Sep 28 10:50pm

I recently had a lobectomy followed by chemo for stage 1 neuroendocrine lung cancer which my doctor described as being “super aggressive “.
Has anyone had recurrence with this type of cancer? I am being monitored very closely. My oncologist was not an NET specialist. Should I get a second opinion? TYIA

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

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mcharlesfrancis | @mcharlesfrancis | Sep 29 6:15am

Yes, I would get a second opinion from a NET specialist, even though you have already completed surgery and chemotherapy. Lung neuroendocrine cancers are uncommon, and there are several different types that can behave very differently.

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Turkey, Volunteer Mentor | @tomrennie | Sep 29 10:49am

@bjbrenda Hi and welcome to Mayo Connect. I also strongly suggest that you get a second opinion from a NETs specialist. Here is a link for the Neuroendocrine Tumor Research Foundation to search for a NETs specialist in your area. https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/

How are you currently feeling?

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kmcbride77 | @kmcbride77 | Sep 30 10:17am
In reply to @mcharlesfrancis "Yes, I would get a second opinion from a NET specialist, even though you have already..." + (show)
Profile picture for mcharlesfrancis @mcharlesfrancis

Yes, I would get a second opinion from a NET specialist, even though you have already completed surgery and chemotherapy. Lung neuroendocrine cancers are uncommon, and there are several different types that can behave very differently.

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@mcharlesfrancis
Hi. You are so incredibly fortunate to have caught this so early! I am in remission with super aggressive large cell neuroendocrine lung cancer stage 3B inoperable. Since I had no actionable mutations or markers I was treated with old school chemo and concurrent radiation - following a protocol used for small cell lung cancer. Luckily for me my cancer responded very well to treatment. I tried to find a specialist for my cancer type but never found one. I did get a second opinion at Moffitt - after treatment, because I was so sick that I had no choice but to start treatment locally. They had nothing new to offer. My major concern is WHAT can I do now to prevent recurrence - but no one has any answers. I feel completely helpless - like a sitting duck. I google constantly to try to see if there is anything new for me.
I do think you should get a second opinion even if just to assure you that you have done all you can do for now. The fact that it was stage 1 and operable plus the fact that you had chemo should give you every reason to be optimistic about the future. The first fight is the best fight with cancer and you have done well.
Best wishes for permanent remission.

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