Welcome to Carcinoid.org

We've built this site to include the most comprehensive and up-to-date repository of information about carcinoid and neuroendocrine tumors. You should be able to find just about any information you're seeking about these diseases, including information about doctors, support groups, treatment, clinical trials and a wide variety of resources. Please take your time on our site, visit us often and feel free to provide us with your feedback or requests for information you would like to see on this site.

DID YOU KNOW?

Here's a one-page fact sheet created by the Carcinoid Cancer Foundation that you can print copies of to share with family, friends, co-workers, physicians, and at events to help educate others about carcinoid and related neuroendocrine tumors. CLICK HERE for the fact sheet.

CCF Video Series Begins with "The ABC's of Carcinoid and Neuroendocrine Tumors"

What is the most common kind of neuroendocrine tumor (NET)? How do these tumors grow? What is carcinoid syndrome? What are the quality of life issues for patients? In “The ABC’s of Carcinoid/NETs,” three of the world’s leading carcinoid and NET cancer specialists – Dr. Richard R.P. Warner, Dr. Edward M. Wolin, and Dr. Eugene A. Woltering – talk about the advice they offer their patients, the advances they have seen during their careers, and what they anticipate will be available for NET patients in the future. (Click on the words YouTube in the bottom right of the video to see it in a larger size). READ MORE about the video series.

Dr. Eugene Woltering: How I Became Involved in Carcinoid/NETs

The Carcinoid Cancer Foundation is pleased to share a video featuring carcinoid/NET specialist Dr. Eugene Woltering from the Ochsner Neuroendocrine Tumor Program in Kenner, Louisiana. Do you know what prompted Dr. Woltering’s interest in these rare cancers?

Kari's Story

An incredibly inspiring video created to bring about greater awareness of carcinoid and NET (neuroendocrine tumor) cancer. Humor, strength, adventure, hope -- this is Kari's story.

Double click on the video to see it in a larger size.

What If Insurance Won't Pay?

Insurance coverage for medical treatments and prescription drugs is a critical issue for carcinoid cancer/neuroendocrine tumor patients. The Carcinoid Cancer Foundation has partnered with Laurie Todd, “The Insurance Warrior,” to bring you cutting-edge information about how to fight your insurance company if your claim is denied.

Listen to a special message from Laurie Todd, "The Insurance Warrior." Click here to read more about Laurie Todd and excerpts from her CD, The Sample Appeal: More Insurance Warrior Wisdom, about how to write winning insurance appeals.

The Carcinoid Cancer Foundation pledges to continue working to bring about greater awareness of carcinoid and NET cancers; to educate the medical community and the general public to look for, diagnose, and treat these diseases early; and to serve as advocates for the carcinoid/NET community throughout the world. We hope that 2013 will bring many advances in carcinoid/NET cancer research.

This website and the educational, awareness, support, and advocacy activities of the Carcinoid Cancer Foundation are made possible by your contributions.

Thank You!

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Latest News

Carcinoid/Neuroendocrine Tumor Presentations at ASCO Annual Meeting

Twenty-six abstracts about carcinoid and other NETs will be presented at the 2013 ASCO (American Society of Clinical Oncology) Annual Meeting, to be held May 31 to June 4 in Chicago, Illinois. Cutting-edge scientific presentations and comprehensive educational content will be shared with more than 25,000 oncology professionals from a broad range of specialties, exploring the theme of the Meeting — "Building Bridges to Conquer Cancer." Click here for the carcinoid/NETs presentations.

Neuroendocrine Tumors Featured in Society of Nuclear Medicine and Molecular Imaging Patient Program

Josh Mailman, President of the NorCal CarciNET support group and Chair of the Patient Advocate Advisory Board for the Society of Nuclear Medicine and Molecular Imaging (SNMMI), will give the Welcome presentation for the SNMMI Patient Education Day on June 9th in Vancouver, British Columbia, Canada. The “Patient Program” provides a unique opportunity to network with passionate advocates and leading experts in neuroendocrine tumors (NETs), lymphoma disease, and dementia. Read more

Mayo Clinic Completes First Whole Exome Sequence of Small Intestine Neuroendocrine Tumors

Researchers at the Mayo Clinic in Rochester, Minnesota have completed the first whole exome sequence of small intestine neuroendocrine tumors and have identified six pathways as potential drug targets for these NETs. Read more about the Mayo Clinic research here. Click here for the full text article. And learn more about exome sequencing.

Living Well with Carcinoid and Neuroendocrine Tumors

Work with a multidisciplinary team, educate yourself, seek out online support groups, find physicians who know how to treat you, focus on achieving the best quality of life possible -- these are some of the suggestions offered by carcinoid and neuroendocrine tumor specialists and patients. "Living Well with Carcinoid and Neuroendocrine Tumors" provides insights into being diagnosed with rare diseases and physicians' guidance for their patients.

Surgery and Treatment Options for NET Cancers

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. View the latest video from the Carcinoid Cancer Foundation:http://bit.ly/VcJXgz

Surgery and Treatment Options for Neuroendocrine Cancer Pations

Lung Carcinoid

According to the latest research, 28% of all carcinoids occur in the lung. What are the symptoms of lung carcinoid? Do these tumors cause carcinoid syndrome? Learn more from carcinoid and neuroendocrine tumor experts about imaging and surgery for lung carcinoids. Meet two lung carcinoid survivors, Kenneth and Kathy. Kenneth has completed more than a dozen marathons since he had his lung removed. Read an inspiring story about lung carcinoid survivors here.

Carcinoid Cancer Foundation Releases "Faces of Hope" Video on NET Cancer Day

In recognition of the 3rd Annual Worldwide NET Cancer Awareness Day on November 10, 2012, the Carcinoid Cancer Foundation released the 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. Future videos in the series will focus on surgery and treatment options, lung carcinoid, and nutrition. (Click on the YouTube logo below to see the video in a larger format.)