@kgrear Thank you for your response, it really touched me. I live South of Boston and am a patient at a well known medical facility but not specializing in NETs. I did all of my research online Mayo Clinic - the best - and NIH. My gastro advocated for a PET scan which my Onco declined. I had CT scan shortly before endoscopy performed (which found & remover NET) - the CT scan didn't find NET & I reminded Onco of that every visit. I just wanted to know if someone else had been thru a similar situation. This is a slow growing cancer until it isn't. Your response to me is spot on - You articulate your experiences and thoughts very well. I have been proactive in my care but as you say, the medical industry is very different today. Thank you for the inspiration, & I feel renewed knowing I am not alone. I wish you the best in your treatment and in being your own caregiver.