NETs Information Sources

CAUTION: Fortunately for us the medical treatments for NETs are being developed rapidly at this time. There may be out of date information. Especially in the videos which are 1 to 4 years old. They are still good starting points.

The Carcinoid Cancer Foundation (carcinoid.org) Highly Recommended. It has a NETs doctor database here: https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

The Healing NET Foundation (thehealingnet.org) This has info for both Patients and Professionals. We encourage you to download and read their NET Primer. They also have a new guide to the PRRT treatment,

The NET Patient Foundation has good information.

Download this book (very technical, you may want to recommend to your physician):

Neuroendocrine Tumors: A Comprehensive Guide to Diagnosis and Management

National Institute of Health has a good online book about NETs/Carcinoid Tumors

The North American Neuroendocrine Tumor Society Has treatment guidelines for doctors. Now a couple of years out of date.

Neuroendocrine Tumor Research Foundation Good resources, including a doctor database here: https://netrf.org/patient-resources/doctor-database/ … You can also sign up for a monthly newsletter here

The NET Alliance – A Novartis Oncology Initiative

By Pharmaceutical Companies

Carcinoid.com – supported by Novartis Phamaceuticals

XERMELO, a treatment for Carcinoid Syndrome Diarrhea by Lexicon Pharmiceuticals

Videos

Carcinoid Cancer Foundation Presents ABC’s of Carcinoid and NETs

Carcinoid Cancer Foundation – Carcinoid Syndrome

Carcinoid Cancer Foundation Presents Surgery and Treatment Options

Dr. Liu explains PRRT

Carcinoid Cancer Foundation Facebook Live Series 2019

Blogs

Ronny Allan – Living With Neuroendocrine Cancer – Very well researched, informative.

Cy Ball – Music – A blog about music and cancer – This is my own blog, of course.
My blog subjects about PRRT and GA-68.

Support Groups

Support groups can offer emotional support as well as information. Be careful, although many groups are monitored by doctors, the information shared by patients may not be accurate.

The oldest group is probably an email listserv run by the Association of Cancer Online Resources. Join ACOR Carcinoid listserv here.

There are several Facebook groups:

Dr. Liu’s Zebras

Carcinoid Coffee Cafe

NET Patients Sharing Knowledge & Exerience (This is more about knowledge than support).

Carcinoid Cancer Awareness Network

Goblet Helpthefight Carcinoid – this is about Goblet Cell, I do not know much about it.