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Thanks Tim! I'm sorry you're in this boat as well. Thank you for the info. How does one go about looking for oncologists who specialize in NETs? I live in a smallish city in MO. I like the oncologist I have but I don't think he's a specialist in NETs. He does seem to know about them somewhat at least; his voice is guiding the tumor board doctors involved in my care, even though he isn't actively treating me himself (yet).
I assume someone has access to my Ki-67 info because my grade is 2. All of my scans were grouped together while they were looking for my official diagnosis. So I'm looking forward to putting some time between now and the next one to get an idea if they are or are not growing and how quickly. The large ones will be gone by then, but the small ones will remain. I hope like yours, they've done nothing!
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@ineedawhale
I just read your first entry.
In June 2023 , I had a coronary artery study that mentioned a findings on my lung. I did not pay attention to this. In April 2025 , I saw my gastroenterologist who asked me about this finding.
He listened to my lungs and was concerned. He said that he would order a Chest CT with and without contrast and advised me to see a pulmonologist.
I saw a pulmonologist who referred me to an interventional pulmonologist
July 2025 , I had a biopsy which showed two NET.
I was referred to a thoracic surgeon . The insurance would only approve and
FDG pet scan.
I had a RML lobectomy and a RLL basilar segmentectomy
VATS. The surgery was on
9/22/2025. I am seeing a thoracic oncologist.
My first surveillance was in
January 2026 - a chest CT without contrast.
At my request. my July
Chest CT was with contrast.
Because of a new finding in the July scan, I will have a Chest CT with contrast in October 2026. I was told it may be scar tissue.
My medical care is at
NYU Perlmutter Cancer Center.
I appreciate your responses
Is your surveillance Chest scan with contrast?
I have read that MRI of liver and abdomen is part of a surveillance scan which I will ask the thoracic oncologist for her view. Also surveillance is recommended
for ten years as opposed to five years.
I hope all is peaceful!
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@ineedawhale
There are some very good NETS Specialist Drs at WashU in St. Louis. I have GI NETS Mets & go there for PRRT. I’m do agree Mayo is tops, but a really long drive for me.
https://physicians.wustl.edu/for-patients/health-insurance/