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Anyone had surgery to remove typical carcinoids of the lung?

Neuroendocrine Tumors (NETs) | Last Active: Dec 7, 2023 | Replies (27)
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@jhhaas

Surgery to remove the malignant carcinoid (and right middle lobe) was on Oct 2. Surgeon wants a scan every 6 mos, and referred me to a local pulmonologist (because I didn’t really have one yet. The malignant nodule was found incidentally by a cardiologist.). That pulmonologist is not familiar with DIPNECH but agreed I should be seen and scanned every six months. It seems like a good plan at least for the first scan. But after that, I am thinking I should maybe have a consult with a specialist.

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Replies to "Surgery to remove the malignant carcinoid (and right middle lobe) was on Oct 2. Surgeon wants..."
Zebra | @californiazebra | Dec 7, 2023

@jhhaas
Glad the surgery is behind you. Yes, you should have a NETs multidisciplinary team at least as part of your care team. One at a centers of excellence will work with your local team. Look into octreotide injections to slow the growth of additional tumors and reduce any symptoms caused by DIPNECH. Prayers for you.

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mcohan | @mcohan | Dec 7, 2023

I had two typical carcinoids removed on Nov. 21

I had my entire right lower lobe removed because of where they were.

Saw surgeon today for 2 week follow up. All is well.

I was diagnosed with colon cancer in January. These carcinoids were found when having CT for colon.
The pulmonary doc did a broncoscopy for tissue sample. Both were malignant.

I will have 6 month follow up with scans.

Surgery was tough, but I am so glad I did it!
I am 72 years old.

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