In the last couple of years, I have been co-leader of the Colorado Carcinoid Cancer Support Group (CCCSG). I have developed the habit of always sending a list of (usually reliable) information and support sources about our disease.
The year I was diagnosed, 2011, most of these sources did not exist or were not generally known (NETs itself was not known by most people including medical people). The ACOR listserv and the Carcinoid Cancer Foundation were the only reliable things I could find. I got information from these and from conferences that CCCSG sponsored in Denver and from the members of CCCSG. My own doctors claimed that they could give all the information I wanted, but I soon found that they knew less than I did. It seems to me that because they were strictly evidence based medicine believers, they did not think they needed to know anything about NETs. At the time, the only thing on their checklist was Sandostatin and perhaps TACE (Transarterial chemoembolization). I eventually knew enough to know that I had to switch from that oncologist and the HMO she works for.
Times have changed. More treatments and diagnostic tools are available now and more are under development. There are many more sources of both information and support for NETs sufferers. One still has to be careful of old or incorrect information but things are better.
So I have added a page to this site listing the sources (see the menu above.) I also include it here:
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 There may be out of date information.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 Now a couple of years out of date.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
Carcinoid Cancer Foundation Presents ABC’s of Carcinoid and NETs
Carcinoid Cancer Foundation – Carcinoid Syndrome
Carcinoid Cancer Foundation Presents Surgery and Treatment Options
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 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.Copyright secured by Digiprove © 2018 Cyril Ball
2 thoughts on “Information Sources for Neuroendocrine Cancer”
Thanks for the plug Cy
Ronny, I value the research and thinking you do and the information you provide.