Smart Patients Carcinoid and Neuroendocrine Tumor Community — Join the Conversation!

The Carcinoid Cancer Foundation is excited to announce a new online community for carcinoid and neuroendocrine tumor (NET) patients, their families and friends. We are partnering with Smart Patients to build this community and hope that combining CCF's experience educating patients about carcinoid and NET cancers with Smart Patients’ experience with online peer support will result in more patients getting information they need even faster.

September Luncheon with the Experts in NYC for Carcinoid and Neuroendocrine Tumor Patients

Carcinoid and neuroendocrine tumor (NET) patients are invited to join three medical experts for Lunch with the Experts in New York City on Sunday, September 27, 2015 at 12:30 pm. This special program was initiated and is sponsored by the Big Apple NETs support group, in collaboration with the Carcinoid Cancer Foundation.

Educational Program for Oncology Nurses on Emerging Therapies for Neuroendocrine Tumors

“Emerging Therapies for Neuroendocrine Tumors: New Perspectives for Oncology Nurses,” is an educational program jointly provided by the Postgraduate Institute for Medicine and the Center of Excellence Media, LLC. The program, offered through June 30, 2016, is directed toward oncology nurses and other cancer care professionals who are involved in the care of patients with neuroendocrine tumors (NETs).

A Roller Coaster Ride: Chris Lindsey's Carcinoid Journey

Chris Lindsey's Carcinoid Journey


We were on summer vacation on the shores of Lake Michigan in the summer of ’98. One night I started having incredible pain in my gut. I was literally writhing on the floor in pain. My wife went to the store and brought back all the stomach relief medicine she could find. It didn’t help. Gradually the pain subsided. What we didn’t know at the time was that I had a Carcinoid tumor in my intestine.

Taking Back My Life: Carolyn Francis' Story

(Pictured are Carolyn Francis; her husband Sandy; and children Alex and Elizabeth)

I was diagnosed with bronchial carcinoids when I was 29 years old. I was newly married and on a business trip in Europe when I got pneumonia. Six months later, I was finally diagnosed with carcinoid. I had the lower two lobes of my right lung removed and began the long, uncomfortable road to recovery.

Resources for Carcinoid and NET Cancer Insurance Appeals

The Carcinoid Cancer Foundation is pleased to introduce this new section on our website to assist the carcinoid/NET community when appealing denied insurance claims.  This section will serve as a repository for articles and other materials that have been used in appeals. We will build this resource list over time and invite you to submit articles through the Contact Us form on our site.  We welcome your suggestions on how to make this section of the greatest value to the carcinoid/NET community.


Neuroendocrine Carcinoid Cancer Education Association Sponsors Mid-Winter Conference

The Neuroendocrine Carcinoid Cancer Education Association (NCCEA), in conjunction with the Colorado Carcinoid Support Group, is presenting a mid-winter conference on Saturday, January 26, 2013 at the University of Colorado Anschutz Medical Campus in Denver. The guest presenters will be:

  • Thomas O'Dorisio, MD, University of Iowa

"Neuroendocrine Tumors:  Current & Future Management at the University of Iowa" 

Carcinoid Cancer Foundation Video: Surgery and Treatment Options

What are the surgical and treatment options for carcinoid and neuroendocrine tumor patients?  For patients with tumors that have spread to the liver which therapies should be used to improve quality and quantity of life?  How do patients benefit from clinical trials?  There is an explosion of technologies coming not only in the diagnostics but also in the treatments of these rare cancers.

Carcinoid Cancer Foundation Video: Faces of Hope

Meet NET cancer survivors Claire, Josh, Judy, Kathy, Kenneth, and "Sunny" Susan as they share their journeys about being diagnosed and living with rare neuroendocrine tumors, including lung carcinoid, carcinoid of the ileum, and pancreatic neuroendocrine tumors.  This is the 2nd video in the Carcinoid Cancer Foundation's 2012-2013 series.  Future videos will focus on treatment options, lung carcinoid, and nutrition.

Vote for a Cause, The Lois Merrill Foundation

Vote for a Cause!  Here’s a chance to help a terrific organization in the carcinoid/NET community, The Lois Merrill Foundation (LMF), win a $500 donation and a 2 week feature on, with the opportunity to receive up to 20% of great daily deals for restaurants, spans, fun activities and mo

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