New Video: Surgery for NETs

Many doctors have historically considered surgery the first and best option for treating a neuroendocrine tumor (NET), when appropriate for their patients. But with all the treatments that have emerged over the past 10 years, as well as new perspectives on treating these tumors, is that still the case? NET experts Dr. Alexandra Gangi, Dr. Rodney Pommier, and Dr. Mark Lewis weigh in on surgery’s role in the treatment process, including: which patients are ideal surgical candidates, when is surgery not an option, at what point in sequencing of treatments does surgery fall, and what new developments have occurred that make the chances of removing a NET through surgery more likely. Dr. Lewis provides a unique perspective on surgery as an oncologist and NET patient who had the Whipple surgical procedure himself!

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

Luncheon with the Experts Continues

CCF FB LIVE Satya Nanu Das, MD May6

Satya Das, MD, MSCI, medical oncologist, will be the featured guest for Luncheon with the Experts on Thursday, May 6, 2021 from 1 to 2 pm, Eastern TimePLEASE NOTE THIS CHANGE OF TIME FOR THE MAY 6 PROGRAM ONLY. Dr. Das is Lead of the Neuroendocrine Tumor and PRRT Programs at Vanderbilt-Ingram Cancer Center in Nashville, Tennessee. He is also an Assistant Professor of Medicine at Vanderbilt University. READ MORE

Latest News

NET Specialist Updates

A warm welcome to Robert Ramirez, DO (pictured left below) and Hagen Kennecke, MD (pictured right below) on their new appointments in Tennessee and Oregon, respectively.

Dr. Robert Ramirez, a thoracic and neuroendocrine oncologist, has joined Vanderbilt-Ingram Cancer Center in Nashville, Tennessee.  Dr. Ramirez’s clinical and research interests include neuroendocrine tumors (NETs) and lung cancer with a particular focus in NETs of the lung and high-grade neuroendocrine carcinomas. He has conducted research with the Ochsner Lung Cancer Multidisciplinary Program and the Ochsner Kenner/LSU Multidisciplinary Neuroendocrine Clinic, where he previously practiced. To make an appointment with Dr. Ramirez, call Vanderbilt-Ingram Cancer Center at 615-936-8422.

Dr. Hagen F. Kennecke, medical oncologist, is now Medical Director of Gastrointestinal Oncology at Portland Providence Cancer Institute and Chiles Research Institute in Portland, Oregon. Dr. Kennecke’s areas of expertise include neuroendocrine tumors (NETs), gastroenterology, oncology, and rectal cancer. He is passionate about finding new therapeutics for patients with NETs. To make an appointment with Dr. Kennecke, call the Providence Cancer Institute Franz Clinic at 503-215-5696.

Robert Ramirez and Hagen Kennecke collage

2nd Annual Charity Streaming Event to Support CCF, May 1

Caling all gamers! Patrick Kanouse, a writer and role-playing game master, along with High Shelf Gaming, the Death Die Club, and Two Brothers Gaming, will host the 2nd Annual Charity Stream Event in support of the Carcinoid Cancer Foundation (CCF) on Saturday, May 1 from 8 pm to 11 pm, Eastern Time. He will run the Classic Traveller adventure – Angle of Incidence – using Mongoose Publishing’s Traveller, Second Edition, on Astral. You can attend and watch the event by going to the High Shelf Gaming Twitch channel,, on your computer, phone, or tablet. READ MORE 

Traveller Charity Event, May 1, 2021


Ferrari Maserati Long Island’s Annual Rally to Red Tomato Artisanal Pizza to Honor Eileen “Red” Bildman and Support the Carcinoid Cancer Foundation

When Eileen “Red” Bildman was diagnosed with neuroendocrine cancer in 2017 little did she know how her life was going to change. It took her well over 10 years and numerous visits to many different specialty physicians, including gastroenterologists, a cardiologist, and an endocrinologist, before she was properly diagnosed. But that diagnosis did not hold her back from pursuing a dream to become a Ferrari race car driver at the age of 58. READ MORE

Red Tomato Rally May 16, 2021 cropped

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

Detectnet Transitional Pass-Through Status Granted by Centers for Medicare and Medicaid Services

RadioMedix Inc. and its commercial partner, Curium, announced today, December 9, 2020, that the Centers for Medicare & Medicaid Services (CMS) “has granted Detectnet Transitional Pass-Through Status (code C9068) effective January 1, 2021. The descriptor for Detectnet will be: Copper Cu-64, dotatate, diagnostic, 1 millicurie. C9068 will be used to bill Detectnet for Medicare patients seen in the hospital outpatient department.” An additional imaging option for the #NeuroendocrineTumor community!…/RadioMedix-Curium…

FDA Approves New NET Diagnostic Imaging Radiopharmaceutical

The U.S. Food and Drug Administration (FDA) has approved Detectnet™, copper Cu 64 dotatate injection. This is a new diagnostic radiopharmaceutical for use with positron emission tomography (PET) for the detection, localization, and monitoring of somatostatin receptor positive NETs. Read more about copper Cu 64,

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NANETS 2020 Grant Recipients

Exciting news from NANETS, the North American Neuroendocrine Tumor Society, about the 2020 Research Grant Recipients. Congratulations to Dr. Heloisa Soares of the Huntsman Cancer Institute, University of Utah; Dr. Xavier Keutgen of the University of Chicago Medical Center; and Dr. Brendan Finnerty of Weill Cornell Medicine! Read more about the grants and the recipients here,

NANETS 2020 Research Grant Recipients, Drs. Soares, Keutgen, Finnerty

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.

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

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 listing common symptoms and misdiagnoses.  Please share this broadly in hopes of helping others get the proper diagnosis more quickly. Download the infographic here.