Hello @sherryboynton,

As a survivor of three surgeries for neuroendocrine tumors (carcinoid type), I am so sorry to hear of this difficult diagnosis.

While you have not mentioned your oncologists by location or name (except for Cancer Treatment Center) my only thought would be to contact a NET expert. Here is a listing of those specialists who have more experience than general oncologists. This listing comes from the Carcinoid Cancer Foundation website, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. This listing includes doctors all over the world. Carcinoids experts often have insight into cutting edge treatments that other oncologists do not know about. If your current doctor(s) are not on this list, I would encourage you to give a call to someone on the list.

If you care to share more, do you live in the Midwest? Mayo Clinic has a very good doctor there, Thorvardur R. Halfdanarson, M.D. Here is a website that discusses his background, https://www.mayoclinic.org/biographies/halfdanarson-thorvardur-r-m-d/bio-20055636.

How are you feeling, @sherryboynton? What is the most difficult symptom you are experiencing right now? Will you post again and keep in touch?