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Anyone had surgery to remove typical carcinoids of the lung?
Neuroendocrine Tumors (NETs) | Last Active: Dec 7, 2023 | Replies (27)Comment receiving replies
Hi @jhhaas, I'm tagging fellow members like @mcohan @magnum2 @meryls12 @californiazebra who have experience with DIPNECH and lung nodules.
You ask a good question about whether there is anything more you can do to prevent or treat the multiple nodules that are not cancerous. My understanding is that DIPNECH requires early identification and close surveillance to prevent progression to carcinoid tumours. So regular monitoring is key. How often do you have follow-up appointments?
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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.