The ABCs of Neuroendocrine Cancer

In the dynamic world of diagnosing and treating people living with neuroendocrine tumors (NETs), four expert physicians discuss everything from the increased incidence of NETs to symptoms of the disease and how to live with NETs for many years. What is unique about NETs? Where do NETs form in the body? What are the most recent advances in imaging and treatment options? Dr. Emily Bergsland, Dr. Pamela Kunz, Dr. Rodney Pommier, and Dr. Edward Wolin provide an overview about this uncommon cancer and offer patients perspectives from key opinion leaders in the field.

 Watch all of CCF’s 2020-21 Video Series here:

Luncheon with the Experts continues

Sandy D. Kotiah, MD, medical oncologist and hematologist, will be the featured guest for Facebook Live Luncheon with the Experts on Thursday, September 30, 2021 at 12 noon Eastern Time. Dr. Kotiah is Director of the Neuroendocrine Tumor Center at Mercy Medical Center in Baltimore, Maryland, where she leads a multidisciplinary team of specialty doctors focused on providing the best treatment options for NET patients. READ MORE

Kotiah Sandy


Latest News

CCF Announces Partnership with Clarified Precision Medicine

The Carcinoid Cancer Foundation (CCF) and Clarified Precision MedicineTM have partnered to offer neuroendocrine tumor (NET) patients the opportunity to receive an expert review of their tumor sequencing results from any commercially available test, e.g., FoundationOne CDx, Guardant 360, Caris MI Profile. Each patient is eligible to receive, at no cost to them, a ClarifiedSelectTM analysis, for which nationally recognized precision oncology experts provide a ranked list of FDA-approved treatments, off-label therapies, and clinical trials based on their specific tumor DNA. Every ClarifiedSelectTM report is reviewed by members of Clarified Precision Medicine’s Clinical Network to provide a clear, concise, medically-relevant summary of treatment options for patients and their physicians. READ MORE



Second Generation Immunohistochemical Markers: Reflections from Clinical Implementation

This new article from pathologist Carl Cristofer Juhlin, MD, PhD, of Karolinska Institutet in Sweden identifies second-generation neuroendocrine immunohistochemical markers.  These markers can help identify the site of primary neuroendocrine tumors as well as helping to ensure a proper diagnosis for NETs and poorly differentiated neuroendocrine carcinoma. Read more in this open access article here,

Second-Generation Neuroendocrine Markers

New NET Support Group in Africa

Exciting news for NET patients and your loved ones in South Africa and throughout Africa – you are invited to join the new online Neuro-Endocrine Tumor (NET) Southern AfricaNETSAS Neuro-Endocrine Tumor Southern Africa Support logo Support Group, NETSAS. The goal of the group is to help you and your family adjust to your diagnosis, gain knowledge of treatment options, and empower you with coping strategies to live with the disease and its treatment. The group will be meeting once a month by Zoom. To register CLICK HERE, and you will receive a link to join group sessions. Visit the NETSAS website,, for helpful information and links to medically approved international sites as well as the NETSAS Facebook page,, for additional support for you and your loved ones.

Donate to CCF with Cryptocurrency

The Carcinoid Cancer Foundation is now accepting donations in cryptocurrency.  Thank you for your support! Click here or on the button below to donate

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Unique Opportunity for Neuroendocrine Tumor Patients

For many neuroendocrine cancer patients, access to physicians who specialize in this disease is challenging or simply not possible. The National Cancer Institute, NCI, is offering neuroendocrine tumor (NET) patients a unique opportunity to have a multidisciplinary tumor board review of their medical records and make recommendations about NET treatment options.  READ MORE

SNMMI NET Patient Education Day 2021 Now Available for Viewing Online

The SNMMI, Society of Nuclear Medicine & Molecular Imaging, Annual NET Patient Education Day is now available for viewing online. The 2021 event featured a virtual, online, live webinar offering patients, caregivers, and advocates a unique opportunity to learn about the role of nuclear medicine in diagnosing and treating NET disease.  SNMMI also offered patient education programs on breast cancer and prostate cancer. The Neuroendocrine Tumors (NETs) program was held on August 14.  CLICK HERE to see the program and view the event.

New Drug Application Accepted by FDA

The U.S. Food and Drug Administration, FDA, has accepted the filing of the new drug application (NDA) for surufatinib as a potential therapeutic option for patients with pancreatic and extra-pancreatic neuroendocrine tumors (NETs).  READ MORE

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Neuroendocrine Tumor Information in 10 LanguagesINCA NET Information in Many Lanuagues (002)

Did you know that the International Neuroendocrine Tumor Alliance (INCA), has free, NET info packets in 10 languages? Click here to select your language and download the factsheets: The Carcinoid Cancer Foundation is proud to be a founding member of INCA.

NANETS Issues Position Statement on COVID-19 Vaccination for NET and NEC Patients

A growing body of evidence suggests that patients with cancer have an increased risk of severe COVID-19 infection and related complications.  NANETS, the North American Neuroendocrine Tumor Society, has issued a Position Statement regarding the plan for COVID-19 vaccination for patients with neuroendocrine neoplasms (NENs), including well differentiated neuroendocrine tumors (NETs) and poorly differentiated neuroendocrine carcinomas (NECs). NEN survivors and patients with NENs on observation or undergoing cancer treatment should be offered COVID-19 vaccination as long as any components of the vaccine are not contraindicated. READ MORE

COVID 19 vaccine

Facebook Live Program on Carcinoid Syndrome: Managing Breakthrough Symptoms

Are you newly diagnosed with carcinoid syndrome or have been living with the syndrome for many years?

The Carcinoid Cancer Foundation presented a Facebook Live program on Carcinoid Syndrome on December 14th featuring neuroendocrine tumor (NET) expert Lowell Anthony, MD, FACP, Chief of the Division of Medical Oncology at the UK Markey Cancer Center in Lexington, Kentucky, and NET patient Melanie Bean. The live program offered viewers the opportunity to ask questions of Dr. Anthony and Ms. Bean and covered living with carcinoid syndrome and how to manage breakthrough symptoms.

If you were not able to join us for the live program, it is now available for viewing on CCF’s Facebook page here,  For anyone who is not on Facebook, it is available for viewing on CCF’s YouTube channel here,

This special program is made possible with sponsorship by Sun Pharmaceuticals Industries Inc.

Carcinoid Syndrome Facebook Live program, Dr. Lowell Anthony and Melanie Bean, Dec 14, 2020

Promising Developments in the Pipeline for High Grade Neuroendocrine Tumor Diagnosis and Treatment

“Treatment for high grade neuroendocrine neoplasms (abnormal tissue growth) is moving the way that the treatment for triple negative breast cancer is moving — toward the realization that there are a basket of subtypes and that each can be potentially treated differently,” according to Aman Chauhan, MD, medical oncologist, Director of NET Theranostics, Markey Cancer Center (NCI Designated Cancer Center), University of Kentucky. Insights gained through clinical trials will change how these cancers are diagnosed and treated.  Read more

CCF Infographic: 6 Questions to Ask Your Doctor

Have you or someone you love been diagnosed with a neuroendocrine tumor or carcinoid cancer?  It can feel like a daunting task to figure out next steps and doctor appointments may be overwhelming.   You can help yourself or support a loved-one by learning about the disease and preparing yourself for doctor visits.  The first visit may be the most challenging, so It’s important to arm yourself with relevant questions.  Here we provide you with six questions, specific to neuroendocrine tumors, to ask your doctor.   Click here to download the infographic.

6 Questions to Ask Your Doctor

Carcinoid Syndrome Website

The Carcinoid Cancer Foundation’s website  is a space for everything about carcinoid syndrome – from diagnosis and treatment to news and community updates. This site is a great resource for patients, caregivers, and physicians alike – looking to learn more about carcinoid syndrome.

Guide to Understanding Carcinoid Syndrome

Know the signs and symptoms — skin flushing, diarrhea, heart racing . . . it could be carcinoid syndrome!  How is it diagnosed, what are the treatment options, what questions should you ask your healthcare provider?  Read more in Guide to Understanding Carcinoid Syndrome,  from Health Monitor and the Carcinoid Cancer Foundation:

Reaching Those Who Are Still Undiagnosed

Could You Have a Neuroendocrine Tumor Infographic

To combat statistics showing that it often takes 5 to 7 years for patients to receive the correct diagnosis of a neuroendocrine tumor (NET), the Carcinoid Cancer Foundation has partnered with Advanced Accelerator Applications to create an infographic — Could You Have a Neuroendocrine Tumor— listing common symptoms and misdiagnoses.  Please share this broadly in hopes of helping others get the proper diagnosis more quickly. Download the infographic here.