@mlbschuler
Great news that you were happy with your visit with Dr. Ramirez and he is doing additional tests. Glad he reassured you it is all very slow growing. I will be interested in your PET scan results which sounds like the DOTATATE scan to identify NETs. I had the DOTATATE Cu64 PET scan 3 years ago, but discovered I do not have somatastatin receptors (SSTRs) so the DOTATATE scans aren't beneficial for me. That was disappointing; however, people without SSTRs still benefit from Octreotide injections as I do so he can still treat your DIPNECH and NETs either way. Please let us know about your scan results. The DIPNECH community is very small so whatever we can learn from each other is great.