The ABC's of Carcinoid and Neuroendocrine Tumors

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).

The Latest News

Gallium 68 PET/CT Scanning for Neuroendocrine Tumors — Information and Locations

The US Food and Drug Administration’s June 1, 2016 approval of the Gallium-68 PET/CT DOTATATE scan using NETSPOT® heralded a new age of nuclear imaging in the United States for neuroendocrine tumors. Click here for more information about the scan and locations of where it is being offered throughout the US.  We will be adding to the list on a monthly basis based on feedback from the NET community.

Call for Nominations:  8th Annual Warner Advocacy Award

Novartis Oncology and The NET Alliance have announced that nominations are open for the 8th Annual Warner Advocacy Award. The deadline for nominations is November 29. Read more and nominate your NET hero/heroine.

CCF Releases New Infographic for NET Cancer Day: 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.

Webinar for the NET Community: Understanding Medicare Part D Coverage

On Thursday, November 16, 2017 from 1:00 to 2:00 pm PST, NorCal CarciNET Community will host a webinar to help NET patients around the United States better understand the process for selecting Part D Medicare Coverage.  Ann Kayrish from the National Council on Aging (NCOA) will be the guest speaker.  Educational support for this webinar has been provided by Lexicon Pharmaceuticals.  Read more and register.

CCF Offers Toolkit for NET Cancer Day Media Coverage

The Carcinoid Cancer Foundation, with support from Advanced Accelerated Applications, is offering a Media Toolkit to assist organizations or individuals who planning an awareness-raising event to incorporate news media in their efforts.  The Toolkit provides insights on working with print and broadcast newsrooms as well as ideas for leveraging social media. Read more and download the Media Toolkit.

 

CCF Launches New Carcinoid Syndrome Website

The Carcinoid Cancer Foundation has launched a new website, www.carcinoidsyndrome.org. This website is a space for everything about carcinoid syndrome – from diagnosis and treatment to news and community updates. We believe this site is a great resource for patients, caregivers, and physicians alike – looking to learn more about carcinoid syndrome. Please visit often and let us know your thoughts as we plan to regularly update the site. Welcome to carcinoidsyndrome.org!

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 this new publication, Guide to Understanding Carcinoid Syndrome,  from Health Monitor and the Carcinoid Cancer Foundation: https://www.carcinoid.org/wp-content/uploads/2015/10/Carcinoid-Syndrome-Guide-to-Understanding.pdf.

New England Journal of Medicine Publishes Article on PRRT Clinical Study for Neuroendocrine Tumors

One of the most prestigious medical journals in the United States, the New England Journal of Medicine, published an article (January 12, 2017 issue) about the results of the NETTER-1 Phase 3 clinical trial results evaluating the efficacy and safety of Lutetium-177-Dotatate for patients with advanced, progressive somatostatin receptor-positive midgut neuroendocrine tumors. Shedding light on PRRT, peptide receptor radionuclide therapy! Click here to read more

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.