How To Stay Positive with Cancer

Beth asked the doctor to remove her appendix while having surgery on her gallbladder. She had a feeling something bigger was going on . . .she was right.

Luncheon with the Experts continues

Taymeyah Al-Toubah, MPH, is the Senior Clinical Research Coordinator at Moffitt Cancer Center in Tampa, Florida. She will be the featured guest for CCF’s Facebook Live Luncheon with the Experts on Thursday, May 19, 2022 from 12 noon to 1 pm, Eastern Time. Ms. Al-Toubah leads the GI research program at Moffitt, while managing all of the neuroendocrine tumor (NET) clinical trials. READ MORE

Latest News

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

Ask the NET Expert — A New Web-Based Program

The Carcinoid Cancer Foundation is excited to have launched a new web-based program for the neuroendocrine tumor (NET) community – Ask the NET Expert. Each month, we are featuring a different physician who specializes in neuroendocrine cancer. This program gives NET patients and caregivers the unique opportunity to get the expertise of doctors from around the country in all areas of medicine via CCF’s website. Jerome S. Zacks, MD, cardiologist, is the NET expert for May 2022. Dr.  Zacks has extensive experience caring for patients with carcinoid heart disease. He is the founder and Medical Director of the Carcinoid Heart Center, located in New York City.  He is also Associate Clinical Professor of Medicine, Cardiology, at the Icahn School of Medicine at Mount Sinai in New York City.  Read more about the program here and how to submit questions, https://www.carcinoid.org/ask-the-net-expert/, and check out the links to the previous questions posed and answered.

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/

New NET Research Collaboration

Exciting news about a new research collaboration to discover and develop novel therapies targeting immune checkpoint proteins for the treatment of neuroendocrine tumors and other cancers.  The collaboration was announced by NexImmune Inc., a clinical-stage biotechnology company, working with Rutgers University. NET expert Dr. Steven K. Libutti (pictured), Director of Rutgers Cancer Institute of New Jersey, Vice Chancellor of Cancer Programs, Rutgers Biomedical and Health Sciences, and Senior Vice President of Oncology Services, RWJBarnabas Health, will be the principal investigator. Read more: https://www.biospace.com/article/releases/neximmune-announces-research-collaboration-with-rutgers-the-state-university-of-new-jersey-related-to-neuroendocrine-tumor-targets/?s=65 

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

 

Second Generation Immunohistochemical Markers: Reflections from Clinical Implementation

This new article from pathologist Carl Christofer 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, mdpi.com/1259126.

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.

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, https://www.facebook.com/271774129226/videos/2949405928614542.  For anyone who is not on Facebook, it is available for viewing on CCF’s YouTube channel here, https://youtu.be/xSLCXjYEb1s.

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

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.