What is the surveillance protocol for typical pulmonary NETs?

I am scanned and followed up at Memorial Sloan Kettering by my oncological thoracic surgeon, but my symptoms do not require treatment at this point, and my NETs were typical so it’s not as likely to cause problems in the same way the atypical tumors. I do believe if anything changed on my scans or if I started having more problematic lung issues that they would refer me to their oncology department. I have thought of getting an evaluation in Philadelphia, where there are other net specialists just for a second opinion. But I don’t think I would want preventative treatment unless I had more problems because I know overtime that causes problems of its own. It’s just a little disconcerting because my primary doctor, and even my local pulmonologist who is kind of monitoring my overall lung function don’t have a lot of experience with DIPNECH. When I inadvertently discovered the lung tumor while having a heart scan, I saw a pulmonologist locally for the first time who suggested a biopsy. I went home and called MSK to ask their advice, and had an appointment with my surgeon within the same week. He was amazing, and after seeing the scans, and then the biopsy told me, he suspected nets, and DIPNECH. So I do have a high level of confidence in him and their team, it’s just that they don’t act as a primary doctor, . They are just monitoring.

@jhhaas
I would definitely seek a consultation with a
NET specialist
University of PA has NET specialists.