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If you don't suspect it,
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Surgery for Neuroendocrine Tumors

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: https://www.carcinoid.org/for-patients/videos/ccf-2020-video-series/.

Luncheon with the Experts continues

Karel Pacak, DSc, MD, PhD, an internationally recognized expert in the diagnosis and treatment of neuroendocrine tumors, especially pheochromocytoma and paraganglioma, will be the featured guest for Luncheon with the Experts on Thursday, October 21, 2021. Dr. Pacak is Senior Investigator, Section on Medical Neuroendocrinology, at the National Institutes of Health. READ MORE

Latest News

NET Cancer Day 2021, November 10

“If you don’t suspect it, you can’t detect it!” NET Cancer Day 2021, November 10, is nearly here. Help raise awareness about Neuroendocrine Cancer so people living with the disease receive a timely diagnosis and treatment. Here’s the 2021 NET Cancer Day Toolkit from INCA, the International Neuroendocrine Cancer Alliance, that you can use to raise awareness, https://incalliance.org/wp-content/uploads/2021/10/NCD-Digital-Toolkit-2021.pdf. And please use the hashtags #LetsTalkAboutNETs and #NETCancerDay.

Dr. Pamela Kunz Named Woman Oncologist of the Year

Congratulations to NET expert Pamela Kunz, MD, who was named Woman Oncologist of the Year! Dr. Kunz is Associate Professor of Medicine (Medical Oncology), Director of the Center for Gastrointestinal Cancers at Smilow Cancer Hospital and Yale Cancer Center, Chief of GI Medical Oncology and Vice Chief, Diversity Equity and Inclusion, Medical Oncology. The Women Leaders in Oncology award honors a senior professional who is a respected individual in her field and who has modeled excellence in leadership. READ MORE

CCF Announces Partnership with Clarified Precision Medicine

The Carcinoid Cancer Foundation (CCF) and Clarified Precision Medicine^TM have partnered to offer neuroendocrine tumor (NET) patients the opportunity to receive an expert review of their tumor sequencing results from any commercially available test, e.g., FoundationOne CDx, Guardant 360, Caris MI Profile. Each patient is eligible to receive, at no cost to them, a ClarifiedSelect^TM analysis, for which nationally recognized precision oncology experts provide a ranked list of FDA-approved treatments, off-label therapies, and clinical trials based on their specific tumor DNA. Every ClarifiedSelect^TM report is reviewed by members of Clarified Precision Medicine’s Clinical Network to provide a clear, concise, medically-relevant summary of treatment options for patients and their physicians. READ MORE

New NET Nutrition Guide from MENETS

Check out this just released booklet from MENETS, the Middle East Neuroendocrine Tumor Society – Nutrition and Neuroendocrine Cancer, International Edition, written by Tara Whyand, MSc, BSc, dietitian, with contributions from a NET expert physician, registered dietitians, and a NET patient. The booklet is free to download and includes information about vitamins and minerals, weight loss, gastrointestinal problems, carcinoid syndrome, pancreatic and duodenal neuroendocrine cancers, and more. Click here to download the booklet, https://menets.org/nen-nutrition-books.

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.

Donate to CCF with Cryptocurrency

The Carcinoid Cancer Foundation is now accepting donations in cryptocurrency. Thank you for your support! Click here or on the button below to donate

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

New Drug Application Accepted by FDA

The U.S. Food and Drug Administration, FDA, has accepted the filing of the new drug application (NDA) for surufatinib as a potential therapeutic option for patients with pancreatic and extra-pancreatic neuroendocrine tumors (NETs). READ MORE

Neuroendocrine Tumor Information in 10 Languages

Did you know that the International Neuroendocrine Tumor 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.

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, 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.