Hello @ginnym3 and welcome to the NETs discussion on Mayo Clinic Connect. I can certainly understand you when you say, " I’m feeling lost and confused." As a 20-year survivor of NETs (I had my first surgery in 2003, then again in 2005, and my last surgery in 2016). I can easily remember the confusion that surrounded my diagnosis. In 2003, there was little in the way of support groups or good information regarding neuroendocrine tumors (NETs). I also felt lost and confused.

As you are just beginning your journey with NETs, I would encourage you to learn as much as you can about this rare form of cancer. If you google neuroendocrine tumors, you will find websites like Mayo Clinic, and The Carcinoid Cancer Foundation who will provide you with lots of good information. Knowledge is one of the keys to being proactive in your treatment.

I would also suggest that you find a NET specialist. Not all oncologists are trained in treating NETs. Mayo Clinic has some excellent NET specialists in all three of their locations (Rochester, MN, Jacksonville, FL and Phoenix, AZ). If you would like to get a consultation with Mayo here is a link with information about appointments, http://mayocl.in/1mtmR63

If for any reason you cannot get a consultation at Mayo, here is list, from the Carcinoid Cancer Foundation, of NET specialists worldwide.

--Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

If you are comfortable sharing more, I would be interested in knowing where your NETs are located, what symptoms led to the diagnosis and what treatment(s) have been suggested?