What tests should be part of a surveillance protocol for lung NETs?

Yes. Every CT I've had starts without, then they administer and do it again. Up here at the new place, I even get separate reports for with vs. without. That's a first for me. I'm in a holding pattern; no growth of the small nodules they're watching. I will say that in the beginning, I did get a PET scan and then was sent back for a PET scan with dotatate as the tracer (preferred for NETs) and the CT actually is a much better/clearer test for me.

@jessie1990 oh wow, I hope not to lose another lobe. Was that a really long recovery? I did really well but it seemed like it took forever to get my energy level back up. I was diagnosed in Springfield, MO and we recently moved to KC, MO. I now see an oncologist with KU that has ties to Mayo. I consider myself really lucky (blessed!) that mine were found early and I got treatment quickly and other than surgery recovery, really haven't noticed there is anything wrong with me. Good luck getting in more speedily so you know what's going on.

@ineedawhale
Where is your medical team?

@ineedawhale
In 9/22/25 I had a RML
Lobectomy and RLL basilar segmentectomy. I had two surveillance scans 1/2026
Chest CT without contrast.
I requested July Chest CT have IV contrast which showed a new finding .
I will have a Chest CT with
IV contrast in October 2026
Besides CT scans with contrast do you have any other surveillance tests.
Protocols seem to not be consistent.

@ineedawhale
In 9/22/25 I had a RML
Lobectomy and RLL basilar segmentectomy. I had two surveillance scans 1/2026
Chest CT without contrast.
I requested July Chest CT have IV contrast which showed a new finding .
I will have a Chest CT with
IV contrast in October 2026
Besides CT scans with contrast do you have any other surveillance tests.
Protocols seem to not be consistent.

@jessie1990
Unfortunately, America has no universal healthcare.
We are at the mercy of the insurance companies- who are more interested in profits
The request for the appropriate scan was denied.
If one is fortunate their physician will advocate for them.

I had my right lung removed in 23 and they surveilled my chest with CT for 2 years. I did not have a net specialist yet. I thought maybe they should be looking at other areas so I ask my family practice MD "what doctor is looking at the rest of me. " He ordered an upper GI. 2 years went by and they saw "something" in the upper part of liver that you can see in CT. Cancer metastasis to liver and bone. They referred me to oncologist who put me on wrong med. Needless to say I have a net specialist now and have had liver debulking surgery and I am doing great. Get a net specialist even if you have to travel.

@aprils1957
Clarification
Was your total right lung? And what was your diagnosis?
Where is your NET specialist

@haelsky
Ya they took the entire lung because the tumor was 8 cm and close to the trachea. Biopsy showed "atypical well differentiated nonfunctional (presumed) Ki67: 10%. " I am lucky to live in Portand Oregon and able to go to OHSU with Dr Pegna and Dr Pommier.