@gmapam

Your NETs oncology team should be able to tell you. You need to have somatostatin receptors (SSTRs) for the Cu64 or Ga68 DOTATATE PET scans to be of value and identify NETs. I had the Cu64 PET scan and was told I do not have SSTRs so the scan was of no value for me and I will not be having more. I didn't ask, but I assumed that the known NETs were not even showing up on that scan and that's how they knew I didn't have the receptors. That's a good question to ask my interventional radiologist after my next CT scans, but that's not for two months.

I've heard varying stats, but most recently that about 50% of people with lung NETs have SSTRs. A higher percentage of people with GI NETs have SSTRs.

I don't have SSTRs so PRRT would not be a treatment option; however, I do take Octreotide (Sandostatin) injections every 4 weeks and it has really helped my respiratory symptoms. So even without the SSTRs, for some reason, they've found that enough sandostatin is absorbed to help with symptoms at least for DIPNECH which I also have.

Please let us know what your NETs team has to stay about your scan and SSTRs. Did they tell you that you would have more Cu64 scans in the future? I always ask for the report to be posted in my portal so I can read all the details. It helps me prepare my questions.