Dare to Dream

Taryn seemed to have it all.

She was the VP of strategy at a successful media company. She had a loving husband. And she was just about to leave to fulfill her dream of living in France.

But on a routine checkup before her travel, doctors found a rare neuroendocrine tumor that left her with a 7% chance of survival.

So Taryn fought back.

This is her story.

 

Please CLICK SUBSCRIBE to our YouTube channel and HIT THE BELL to receive a notification when we post the final video in the 2022 series as well as other videos in the future: www.youtube.com/user/CarcinoidNETs.

Stay tuned for more videos to come!

2022 Luncheon with the Experts Series concludes

CCF Facebook LIVE Announcement Lunch with Experts2Our 2022 Luncheon with the Experts series has ended but we are already planning the 2023 series which will begin in the new year. Rain Bennett and CCF will be back with a whole new lineup of NET specialists to help us stay informed and answer questions. Until then, please visit our YouTube channel for past shows you may have missed or that you may want to watch again here: www.youtube.com/user/CarcinoidNETs. To receive notifications of all new videos on our YouTube channel, CLICK LIKE, SUBSCRIBE and HIT THE BELL to receive notifications each time a new video is uploaded.

We are excited about 2023 and hope you will join us!

Latest News

GIVING TUESDAY – November 29, 2022

We know navigating NETs isn’t always easy – understanding a diagnosis, finding the right doctor, or learning about treatment options. It’s our mission to increase awareness and educate the general public and healthcare professionals about NETs. We support and advocate for NET patients, their caregivers, and their loved ones. We answer numerous phone calls and emails from patients every year. We provide up-to-date medical information for the community through our website and our social media outreach. 

Giving Tuesday Zebra

Please consider a donation today to support our mission on GIVING TUESDAY, a “global generosity movement unleashing the power of people and organizations to transform their communities and the world.” DONATE HERE.

 

Making History: Michelle Kang Kim, MD, PhD, is Cleveland Clinic’s First Female Chair of Gastroenterology

The appointment of Michelle Kang Kim, MD, PhD, as Chair of Cleveland Clinic’s Department of Gastroenterology, Hepatology and Nutrition is groundbreaking in several ways. Dr. Kim is the first woman to hold that position at Cleveland Clinic, and she is among the fewer than 10% of gastroenterology division chiefs nationally who are female. Dr. Kim is an expert in neuroendocrine tumors.  READ MORE

DDI_Barra_2986919_Dr Michelle Kim_06-29-22_MLC

 

New Natural History Study of Neuroendocrine Tumors and Neuroendocrine Carcinoma Opens at the National Cancer Institute 

Jaydira Del Rivero, Principal Investigator of the NCI StudyYou can help physicians and scientists learn more about neuroendocrine cancer in order to develop future treatment options. A new clinical study, sponsored by the National Cancer Institute (NCI), has just opened and is looking to recruit and follow neuroendocrine neoplasm (NENs) and adrenocortical carcinoma (ACC) patients for a period of ten years in order to learn more about these uncommon cancers. Tissue Procurement and Natural History Study of Neuroendocrine Neoplasms (NENs) Including Adrenocortical Carcinoma (ACC), with principal investigator Jaydira Del Rivero, MD, is a national and international study.  READ MORE

World’s 1st Distinguished Professorship in Neuroendocrine Tumor Research at UK Markey Cancer Center

Very exciting news from the UK Markey Cancer Center!  The University of Kentucky Markey Cancer Foundation received a $1 million gift to create the world’s first distinguished professorship in neuroendocrine tumor (NET) research.

The Amanda W. Lockey Foundation has given the gift in support of UK Markey Cancer Center medical oncologist Lowell Anthony, MD, a specialist in NET treatment. The distinguished professorship in neuroendocrine tumor research will support Dr. Anthony’s work by allowing him and his team to focus on clinical and translational research and the development of a radiotherapeutic program. READ MORE

UK Markey Distinguished Professorship in Neuroendocrine Tumor Research

News for US Veterans with Lung NETs

For US veterans with typical and atypical lung neuroendocrine tumors – the VA has added several conditions to the list of presumptive illnesses related to military service, including lung carcinoid. With appreciation to all our veterans for your service.  https://www.fedweek.com/armed-forces-news/va-adds-to-list-of-presumptive-diseases/

 

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

Neuroendocrine Tumor Information in 10 Languages

INCA NET Information in Many Lanuagues (002)

 

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

 

 

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

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: https://www.carcinoid.org/wp-content/uploads/2015/10/Carcinoid-Syndrome-Guide-to-Understanding.pdf.

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.