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What tests should be part of a surveillance protocol for lung NETs?
I had a RML lobectomy and RLL basilar segmentectomy in September of 2025
What is the surveillance protocol for
Typical Lung Neuroendocrine Cancer
KI67 of 3 percent
Lymp nodes are negative
No necrosis
Should CT Chest scans have IV Contrast
What other scans or MRI should be part of a surveillance protocol?
How many years is this protocol?
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@jessie1990
Are your CT scans without contrast
@haelsky mine are without contrast.
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1 Reaction@haelsky forgot to say, no other surveillance tests. I was referred to a local pulmonologist post op, who checks my overall lung functioning yearly, but he’s a general pulmonologist. At this point, I’m going by my symptoms - e.g., besides my scans which are reviewed by a cancer hospital(MSK), if my symptoms became more problematic, I would request a NET specialist. But so far I seem to be stable.
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1 ReactionYes. 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.
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1 Reaction@haelsky my first 2 was with contrast but I don't no about my follow up ct as I haven't got that yet
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1 Reaction@haelsky no contrast or other tests.
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1 ReactionI 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.
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3 Reactions@jessie1990
I will require a 3 month scan because there was a new nodule . This CT scan will be with contrast.
I never had a Pet Dotatate Scan - my health coverage denied it
Instead I had FDG Pet scan not as effective as the Dotatate Scan.
It is exhausting advocating for care.
@haelsky I've had a pet scan back in sept health care here in Ireland is free unless you work as I'm out of work at the minute all my scans were free
@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.