Love Is Patient

Shock was Dana’s first reaction when she was diagnosed at age 31 with neuroendocrine tumors throughout her body. Her boyfriend couldn’t cope with her diagnosis and Dana found herself alone, her world turned upside down. And then came Brien . . .

Luncheon with the Experts continues

Joseph S. Dillon, MD, endocrinologist, will be the featured guest for Facebook Live Luncheon with the Experts on Thursday, August 18, 2022. Dr. Dillon is Professor of Internal Medicine-Endocrinology and Metabolism and Director of Iowa’s multidisciplinary Neuroendocrine Tumor Center. READ MORE

 

 

Latest News

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

Neuroendocrine Cancer Specialist Dr. Satya Das Presents Grand Rounds at Vanderbilt University

Have you wondered what it’s like to attend Grand Rounds dedicated to neuroendocrine cancer?  NET expert Satya (Nanu) Das, MD, MSCI, Assistant Professor of Medicine, Vanderbilt University Medical Center and Lead of the Neuroendocrine Tumor and PRRT Programs, has generously shared his Grand Rounds presentation: “Mapping the Odyssey – Defining the Landscape of Neuroendocrine Neoplasms (NENs).”  This excellent overview of NENs includes the history of the disease; classification, epidemiology and diagnostic approaches (neuroendocrine tumors or NETs versus neuroendocrine carcinomas or NECs); new directions in systemic therapies for NETs and NECs; and how to optimize NEN clinical trial design and move research and treatments forward. In addition to being a clinician and teaching at Vanderbilt, Dr. Das serves on the NCCN Guidelines Panel for NETs and the NCI NET Task Force. One of the most hopeful points Dr. Das makes is: “Patients with NETs with metastatic involvement can live for decades.”  Watch Dr. Das’ Grand Rounds presentation here: https://youtu.be/1FXWnHkNiHY. Thank you, Dr. Das, for educating medical professionals about NETs and NECs and inspiring the next generation of neuroendocrine cancer specialist physicians.

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

You 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

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/

 

If I’d Listened To My Doctor, I Would Be Dead Right Now

Taryn knew she needed a biopsy right away.  Being an advocate for oneself is often the deciding factor in getting a proper neuroendocrine  diagnosis.  READ MORE

 

When You Are Not Expecting a Neuroendocrine Cancer Diagnosis

“Dear self that walked into the ER with abdominal pains not expecting the outcome to be cancer.” Sheena never imagined her diagnosis would be #NeuroendocrineCancer. https://elephantsandtea.com/…/what-to-expect-when…/..

 

New Guide on High-Grade Neuroendocrine Cancers

Have you or a loved one been diagnosed with high-grade neuroendocrine cancer?  There’s a new guide for patients and caregivers, just released by the Healing NET Foundation in observance of NET Cancer Awareness Day, November 10, 2021.  Healing NET worked with medical experts, patients, and caregivers to create High-Grade Neuroendocrine Cancers: A Guide for Patients and Caregivers. The publication specifically addresses ways to meet the challenge of a high-grade neuroendocrine cancer diagnosis. READ MORE

 

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

 

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.

Carcinoid Syndrome Website

The Carcinoid Cancer Foundation’s website www.carcinoidsyndrome.org  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: https://www.carcinoid.org/wp-content/uploads/2015/10/Carcinoid-Syndrome-Guide-to-Understanding.pdf.

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 — 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.