Hello @gprior,

I understand your interest in reading about how others have treated DIPNECH. You mentioned that In Australia there are not many medical people who have heard of this. Here is a link to the Carcinoid Cancer Foundation website with a list of NET specialists throughout the world. Here is a link to that list.
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
After listing U.S. specialists, there is an international listing of doctors. One doctor does appear under Australia,
Australian NET Doctors (Oncology, Surgery, Nuclear Medicine)
J. Harvey Turner, MD, FRACP (Interventional Radiology)

Perhaps a second opinion might help you feel more comfortable with your current treatment Have you considered a consultation to see if your current treatment might be augmented in some way?