Recently diagnosed with a NET in my middle lobe of my right lung.

Hi @peg152

The simplest answer is the NETSPOT scan is basically a PET scan that uses a different type of contrast specifically designed to detect neuroendocrine tumors NETS and somatostatin receptors needed for some types of NETS treatment. The NETSPOT scan feels like the same experience as a regular PET scan to the patient.

So that would be a PET scan with Dotatate? I had that after my first biopsy came back as NETs. It didn't show more or less than the regular PET for me so I wonder if mine don't excrete somatostatin?

@ineedawhale
Yes. I had the DOTATATE Cu64 scan. As it turned out it wasn’t more valuable than the standard PET scan for me either as I don’t have the somatostatin receptors so no more DOTATATE scans for me. It’s interesting though that people like me still respond to octreotide shots that have been so effective for me. I’m just monitored with CT scans now.

@ineedawhale
Yes. I had the DOTATATE Cu64 scan. As it turned out it wasn’t more valuable than the standard PET scan for me either as I don’t have the somatostatin receptors so no more DOTATATE scans for me. It’s interesting though that people like me still respond to octreotide shots that have been so effective for me. I’m just monitored with CT scans now.

That is interesting, I'll keep it in mind. My CT showed a much clearer picture and caught 3 smaller (presumed to be NETs) in addition to the 2 larger ones the PET scans caught so I was told I'll be followed with CT as well.

Since you have 5 lung NETs, read up on DIPNECH which is something some of us with multiple nodules also have. It can be a precursor to NETs. It’s very rare but they also think it’s underdiagnosed since most doctors have never heard of it. You may not have that since you don’t have respiratory symptoms and most of us have had a longstanding cough and/or shortness of breath and even mucus issues. Octreotide really helps symptoms if you ever have any.

I had no idea that DIPNECH did not have any somatostatin receptors. Thanks for sharing.

DIPNECH and lung NETs typically do have somatostatin receptors which is why I had the DOTATATE scan, but not all people have them and as it happens I do not or so I’m told. Having said that, the fact that octreotide is still effective makes me think maybe I have a low level of receptors but not enough to make the scan effective. ??? Just my thought.