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 There may be out of date information.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.
Colorado Carcinoid Cancer Support Group
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 Now a couple of years out of date.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/
By Pharmaceutical Companies
Carcinoid.com – supported by Novartis Phamaceuticals
XERMELO, a treatment for Carcinoid Syndrome Diarrhea by Lexicon Pharmiceuticals
The NET Alliance – A Novartis Oncology Initiative
Videos
Carcinoid Cancer Foundation Presents ABC’s of Carcinoid and NETs
Carcinoid Cancer Foundation – Carcinoid Syndrome
Carcinoid Cancer Foundation Presents Surgery and Treatment Options
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.
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 Here (http://acor.org/listservs/join/33)
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.
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