Neuroendocrine neoplasms (NENs) can arise in many locations throughout the body; they can grow rapidly; and they can occur under unique circumstances. In this episode of NETWise, we talk through some of the more uncommon locations – and situations – where neuroendocrine neoplasms arise. This episode is devoted to some of those more uncommon situations.

Thank you to the NET specialists who helped with this episode:

Will Pegna, MD, is GI medical oncologist and Assistant Professor of Medicine at Oregon Health and Science University in Portland.

Thor Halfdanarson, MD, is a medical oncologist and a professor of Oncology at the Mayo Clinic in Rochester, Minnesota.

Thank you to Bill Thach, Amit Gattani and Brian McCloskey for sharing their neuroendocrine cancer journey. This episode is dedicated to Amit Gattani, who passed away before the release of this episode.

Click here to download a transcript of this episode.

The post NETWise Episode 37: Uncommon Neuroendocrine Neoplasms (NENs) appeared first on NETRF.

If you’re new to this show, welcome. You’re in the right place. 

Maybe you’ve been recently diagnosed, or maybe you’re a longtime patient. Maybe someone you care about has neuroendocrine cancer. In any case, you probably have questions. What exactly is this disease? What is it doing in your body right now? And what should you be doing about it? This series will help you find answers to those questions. We’ll speak with some of the best experts on neuroendocrine tumors from all around the world, and you’ll hear NET patients share their experiences. We’ll explain what neuroendocrine cancer is, how it spreads, and explore current best practices in diagnosis and treatment.

This is a revised version of our very first episode. We’ve made some updates to reflect new terminology used to describe different kinds of neuroendocrine cancer. A special thank you to Thor Halfdanarson, MD for his help with this episode update.  

Thank you to the specialists that contributed to this episode: 

• George Fisher, MD, is an oncologist at Stanford University Medical Center.
• Pamela Kunz, MD, is an oncologist at the Yale Cancer Center.
• Eric Nakakura, MD, is a surgeon at the University of California, San Francisco. 
• Thor Halfdanarson, MD, is an oncologist at the Mayo Clinic in Minnesota.
• Dan Halperin, MD, is a medical oncologist and researcher at the MD Anderson Cancer Center at the University of Texas in Houston. 
• Xavier Keutgen, MD, is a surgical oncologist from UChicago Medicine.
• Ed Wolin, MD, is an oncologist and director of the Center for Carcinoid and Neuroendocrine Tumors at Mt. Sinai in New York.
• David Metz, MD, was the co-director of the Neuroendocrine Tumor Program at the University of Pennsylvania until his retirement in 2021. 

Thank you to Wendy Knoll and Marilyn Kline for sharing their story. 

This episode is dedicated to the memory of Marilyn, who passed away after the production of the original episode.

Special thanks to our sponsors for their support of this podcast:

Learn about the nervous system, the endocrine system, and the role neuroendocrine cells serve as translators.

Download PDF

Learn about symptoms and misdiagnosis. Were you given a wrong diagnosis? What were your symptoms? See how misdiagnosis happens and how symptoms can align with the wrong condition.

Download PDF

Visualize stage, differentiation, and grade. What do these mean and what do these say about neuroendocrine tumors?

Download PDF Download a transcript of this episode Take the NET Quiz

Los Angeles-based patient support group LACNETS has developed a NET quiz based on this NETWise podcast. Once you’ve finished listening, test your knowledge. 

Helpful links:

NET Knowledge Center

Order a Patient Guide

Find a NET Specialist

NETRF YouTube Channel

The post NETWise Episode 1: What You Need to Know About NETs & NECs – Updated Episode appeared first on NETRF.

We hear a lot about the need for diversity and inclusion in health care, and we know there is a need for more diversity in NET clinical trials. In looking at the issue of race and medicine there are four major factors that influence health outcomes and that deserve scientific investigation. First, is your genes and your specific ancestry. Second is epigenetics, which is the study of how your behaviors and environment can cause changes that affect the way your genes work. Third, is how you are treated by others, especially how you are treated by health care staff, institutions and systems in your setting. Fourth, is the physical environment you live in, your family and community. Listen to this newest NETWise podcast as we take a look at these factors with the experts and talk and learn more about NETs and race.

Acknowledgements:

Thank you Erica Roberts and Suzie Ludlow for sharing their own stories. Erica is the daughter of the late William Preston Roberts, Jr. He was diagnosed in 2008 and he passed away in 2016. Suzanne Ludlow is a member of NETRF’s Board of Directors. Her husband, Vince, was an African-American man who passed away from NETs in 2017.

Dr. Katherine McElroy is a resident physician in Houston, Texas and is affiliated with The University of Alabama.

Dr. Clayton Yates is a Professor of Pathology, Oncology, Urologic-Oncology
Director for Translational Health Disparities and Global Health Equity Research, Program Co-Leader for Cancer Genetics and Epigenetics at the Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins School of Medicine in Baltimore, Maryland

Dr. Heloisa Soares, a medical oncologist specializing in NETs at the Huntsman Cancer Institute at the University of Utah.  Dr. Katherine McElroy is a resident physician in Houston, Texas and is affiliated with The University of Alabama.  Dr. Brendan Herring is a member of Dr. Bart Rose’s team at the University of Alabama Birmingham who has work on a 2020 BTSI-funded research project on molecular influences of racial disparities in black patients with pNETs.

Dr. Brendan Herring is a member of Dr. Bart Rose’s team at the University of Alabama Birmingham who has work on a 2020 BTSI-funded research project on molecular influences of racial disparities in black patients with pNETs.

 

After you listen to the episode, test your knowledge by taking the LACNETS quiz here Download the episode transcript here

Special thanks to our sponsors for their support of this podcast.

The post NETWise Episode 27: NETs & Race appeared first on NETRF.

This is an updated NETWise episode. A special thank you to Dr. Aman Chauhan for his expert knowledge and help with this special NETWise update.

Did you know that about 1 in 4 NETs develop in the lungs?

Lung NETs are often overlooked, less frequently discussed, and more misunderstood than NETs that begin in the pancreas or GI tract. It can be frustrating for individuals and families living with a lung NET to find useful information or the right health care professional to work with. This special episode of NETWise covers all things Lung NETs.

                                               Click image to download the LungNETs PDF

Do you want to learn more about the classification of the different types of lung NETs? In this episode, we map out the lung NET classification system. While we mainly focus on typical and atypical carcinoids, we also included information about large cell and small cell lung cancer. We talk about each different type of lung NET, their distinctive characteristics, and what they have in common. We did not forget about DIPNECH. Information about this ultra-rare condition is also included in this episode.

This episode is for every person and family affected by lung NETs. We hear your call for more information. After you listen to this episode, you will have a better understanding of the classification system of lung NETs, surgical options (including the controversial ones), medical treatments, and how you can get involved with research to advocate for more approved treatment options.

NET Experts in this episode:

Dr. Aman Chauhan, leader of the neuroendocrine cancer program and co-leads the theranostics program at the Sylvester Comprehensive Cancer Center at the University of Miami in Florida

Dr. Nathalie Lui, a thoracic surgeon at Stanford Cancer Center. Dr. Lui’s surgical practice consists of general thoracic surgery with a focus on thoracic oncology and robotic thoracic surgery. Her research interests include intraoperative molecular imaging for lung cancer localization, increasing rates of lung cancer screening, and using artificial intelligence to predict lung cancer recurrence.

Robert Ramirez, DO, a thoracic and neuroendocrine oncologist, has joined Vanderbilt-Ingram Cancer Center after practicing at Ochsner Medical Center and Louisiana State University (LSU) Health Science Center in New Orleans.

Dr. Andrew Kaufman  an expert in advanced minimally invasive thoracic surgery and thoracic surgical oncology, is the Director of The Thoracic Surgery Airway Program and The Asian Thoracic Surgery Program at Mount Sinai, as well as the Associate Program Director for the Thoracic Surgery Residency Program.

A special thank you to Dave Bjork for sharing his NET patient story.

We are grateful for everyone’s participation.

Click here to download a transcript of this episode.

Special thanks to our sponsors for their support of this podcast. 

The post NETWise Episode 26: LungNETs – Updated Episode appeared first on NETRF.

This is a revised version of an episode that first aired in December of 2020, where we focused on diagnosis and treatment of NETs that start in the most common site: the small intestine.

A special thank you to Dr. Mark Lewis for his expert knowledge and help with this special NETWise update.

Did you know that 12% of gastrointestinal (GI) NETs are found in the small bowel? The small bowel, or the small intestine, is one of the most common places NETs form. If you are living with a small bowel NET, this episode is for you. In this episode, you will learn more about the anatomy of the GI system and the different parts and functions of the small bowel. You will also learn more about tumor biology and how small bowel NETs can greatly differ from one another. Finally, this episode details how small bowel NETs grow and what disease progression looks like. We will also cover the extensive treatment options available and new research for small bowel NETs in interviews with NET specialists, Dr. Mark Lewis,  Dr. Dan Halperin and Neena Vijayvergia.

Special thanks to Quintin Ness for sharing his story.

NET Experts in this episode:

Dr. Mark Lewis, MD: an Oncologist and Director of Gastrointestinal Oncology at Intermountain Healthcare in Utah.  

Dr. Dan Halperin, MD an Oncologist and Clinical Investigator and NET specialist at M.D. Anderson Cancer Center at the University of Texas. 

Dr. Neena Vijayvergia, MD, FACP:  an Oncologist and Associate Professor of Hematology and Oncology and Assistant Chief of GI Medical Oncology at Fox Chase Cancer Center in Philadelphia. 

Click here to download a transcript of this episode

Special thanks to our sponsors for their support of this podcast.

The post NETWise Episode 25: Small Bowel NETs appeared first on NETRF.

This episode of NETWise expands our series looking at all possible NET primary sites, with a conversation about one of the very rarest forms of NETs – those that originate in the female reproductive organs.

https://netrf.org/wp-content/uploads/2023/03/NETWise-EP-24-Ready5-JB.mp3 After the episode, test your knowledge by taking the LACNETS quiz here Download a transcript of this episode here

NET experts in this episode:

Dr. Michael Frumovitz is Chief Patient Experience Officer in the Department of Gynecologic Oncology and Reproductive Medicine, Division of Surgery at MD Anderson Cancer Center in Houston, Texas.

Special thanks to Stephanie Madsen, Danielle Murphy and Courteney Wilkinson for sharing their personal experiences for this podcast.

Special thanks to our sponsors for their support of this podcast.

The post NETWise Episode 24: Gynecologic NETs appeared first on NETRF.

As we end our mini-series about adjusting to the new normal of your life with NETs, we wanted to take an episode to highlight one of the most emotionally challenging situations that might confront a person who is newly diagnosed — learning you have cancer while you are raising children.

Parenting is already one of the most challenging and emotionally fraught things anyone can do, and then adding a serious illness on top of it can be downright overwhelming. If this is the situation you find yourself in, we hope this episode will help you to find the strategies and encouragement you need so you can take best care of yourself while also being present and supportive for your children.

Download a transcript of this episode here Test your knowledge of this episode by taking the LACNETS quiz here NET Experts in this episode:

     Mark Lewis, MD, NET patient and Director of Gastrointestinal Oncology, Intermountain Health

Lindsey Nowacki, LCSW, is a Clinical Social Worker with AuthoraCare, a palliative care services provider in North Carolina. She supervises the counseling services at Kid’s Path, a program that works with children dealing with  and loss.

Special thanks to our sponsors for their support of this podcast.

The post NETWise Episode 23: Parenting with NETs appeared first on NETRF.

In the last episode of NETWise, we talked about a moment of transition – the time right after someone receives a diagnosis of NETs and the feelings of grief that can follow. This episode discusses the next part of the journey- how to navigate through the emotions, symptoms, and treatments of NETs while one continues to manage life responsibilities and relationships while living with NETs. This episode addresses survivorship and how one starts to navigate their new normal.

After you’ve listened to the episode, test your NET Knowledge by talking the LACNETS quiz here.

NET experts featured in this episode:Use our episode infographics to get a visual picture of some of the things we have discussed.

John Kerns
Interfaith chaplain 
Beth Israel Deaconess Hospital in Plymouth, Massachusetts

Greg Johnson
Interfaith chaplain who serves as Chief Advisor for Family Caregiving
Emblem Health

Dr. Chandana Banerjee
Hospice and palliative care physician
City of Hope National Medical Center in suburban Los Angeles

Michael Lister
Clinical nurse with the outpatient Oncology group
University of California, San Francisco

After you listen to the episode, test your knowledge by taking the LACNETS quiz here Download a transcript of the podcast here

The post NETWise Episode 22: Navigating The New Normal appeared first on NETRF.

Nos complace ofrecer este podcast NETs 101 en español.

We are pleased to offer this NETs 101 podcast in spanish.

https://netrf.org/wp-content/uploads/2022/11/NETWise-en-Espanol-Ep1-Ready2-1.mp3 https://netrf.org/wp-content/uploads/2022/11/compressed-NETWise-en-Espaol-Ep1-Ready3-WIT.mp3

The post NETWise Episodio 1: Lo que Necesita Saber Sobre los NETs appeared first on NETRF.

A NET cancer diagnosis can affect the emotional health of patients, families, and caregivers. In this episode, we’re going to do something a little different. We have spent a lot of time in this series talking about the science of NETs, but a NET cancer journey is not just about biology. The NET journey can be an intensely emotional experience and learning to deal with the emotions can be just as difficult, but as important as treating the disease itself. 

After you’ve listened to the episode, test your NET Knowledge by taking the LACNETS quiz here.

 

NET experts featured in this episode:Use our episode infographics to get a visual picture of some of the things we have discussed.

John Kerns, 
an interfaith chaplain at Beth Israel Deaconess Hospital in Plymouth, Massachusetts. 

Greg Johnson, 
an interfaith chaplain who serves as Chief Advisor for Family Caregiving at Emblem Health

Dr. Eric Fromme,  
a palliative care physician at the Dana Farber Cancer Institute in Boston, and Senior Scientist at Ariadne (air-ee-AHD-nee) Labs, a joint venture between Brigham and Women’s Hospital and the Harvard School of Public Health.

Dr. Sue Morris, 
a clinical psychologist from Dana Farber Cancer Institute

 

Download a transcript of this episode ADDITIONAL NET RESEARCH FOUNDATION RESOURCES:

Request a Mailed Copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post NETWise Episode 21: Adjusting to the New Normal appeared first on NETRF.

Episode 20 is part two of our deeper understanding into NET research. Advancing NET research is the core of our mission at NETRF, and it’s a crucial need. This episode of NETWise will take a closer look at how scientists do the research that we hope will yield the next generation of effective treatments for NETs. This episode will also look specifically at the vital role NETRF plays in this process and how and why we choose the researchers we support.

After you’ve listened to the episode, test your NET Knowledge by taking the LACNETS quiz here. 

NET experts featured in this episode:Use our episode infographics to get a visual picture of some of the things we have discussed.

John Kanki, PhD
Director of Research
NETRF

Dawn Quelle, PhD 
Professor of Pharmacology and Neurology
Holden Comprehensive Cancer Center University of Iowa, College of Medicine
Co-Chair of NETRF Board of Scientific Advisors

Ramesh Shivdasani, MD, PhD 
Oncologist,
Dana-Farber Cancer Institute
Professor,
Harvard Medical School
NETRF Board of Scientific Advisors

Chrissie Thirlwell, MD, PhD
Mireille Gillings Professor of Cancer Genomics
University of Exeter 

Co-Chair of NETRF Board of Scientific Advisors

 

After you listen to the episode, test your knowledge by taking the LACNETS quiz here Download a transcript of this episode Additional NET Research Foundation Resources:

Request a Mailed Copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post NETWise Episode 20: NET Research—Part Two appeared first on NETRF.

Episode 19 is the first of two episodes that will discuss a topic near and dear to us here at NETRF: NET research. Advancing NET research is the core of our mission, and it’s a crucial need, because NETs are extremely complicated cancers and there is still a lot the medical community needs to learn about them. 

How do scientists do research, from beginning to end? And what are some of the challenges that specifically face NET researchers as they work through that process?  Learn why basic research in the laboratory is crucial to discovering new treatments. Clinical trials are just the last stage of this process, and they cannot happen without years of careful pre-clinical work, which is often underappreciated and underfunded.

After you’ve listened to the episode, test your NET Knowledge by taking the LACNETS quiz here. 

NET experts featured in this episode:Use our episode infographics to get a visual picture of some of the things we have discussed.

John Kanki, PhD
Director of Research
NETRF

Dawn Quelle, PhD 
Professor of Pharmacology and Neurology
Holden Comprehensive Cancer Center University of Iowa, College of Medicine
Co-Chair of NETRF Board of Scientific Advisors

Ramesh Shivdasani, MD, PhD 
Oncologist,
Dana-Farber Cancer Institute
Professor,
Harvard Medical School
NETRF Board of Scientific Advisors

Chrissie Thirlwell, MD, PhD
Mireille Gillings Professor of Cancer Genomics
University of Exeter 

Co-Chair of NETRF Board of Scientific Advisors

 

After you listen to the episode, test your knowledge by taking the LACNETS quiz here Download episode transcript here ADDITIONAL NET RESEARCH FOUNDATION RESOURCES:

Request a Mailed Copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

LISTEN TO OUR NETWISE PODCAST

NETWise Episode 31: 2023 Year in Review

GET INSIGHTS FROM THE EXPERTS

NETRF 2023 Research Symposium: Personalized Medicine

NETRF 2023 Research Symposium: Improving Radiotheranostics

NETRF 2023 Research Symposium: NET Pathways & Targets

NETRF 2023 Research Symposium: Tumor Evolution & Microenvironment

NETRF 2024 Know Your NETs Virtual Conference: Combining & Sequencing Novel

NETRF 2024 Providence Conference: Basic and Translational Research

NETRF 2024 Providence Conference: NET Clinical Trials

NETRF 2024 Know Your NETs Virtual Conference: Welcome & Discovery in NETs w/ Basic

EXPLORE NETRF-SUPPORTED RESEARCH 

Celebrating Milestones in Neuroendocrine Tumor Research (2023)

NETRF Awards Eleven Research Grants to Study Neuroendocrine Cancer

NETRF Research Highlights 2023: Drug-tolerant persister cells in relapsed high-grade neuroendocrine carcinoma, by Carl Gay, MD, PhD

NETRF Research Highlights 2023: NET-SMART therapy, a targeted prodrug strategy, by Justin Annes, MD, PhD

NETRF Research Highlights 2023: Imaging and endo radiotherapy of NETs by endocytic modulation of somatostatin receptors, by Patricia Pereira, PhD

NETRF Research Highlights 2023: Targeting serotonin metabolism in small bowel NETs, by Po Hien Ear, PhD

NETRF Research Highlights 2023: Novel PDXovo models for neuroendocrine neoplasms, by Iacovos Michael, PhD

Advancing Neuroendocrine Tumor Research Through a New Clinically Relevant Mouse Model

The post NETWise Episode 19: NET Research—Part One appeared first on NETRF.

In the past few months, there’s been a lot of buzz in the NET community about histotripsy. This newly-approved procedure holds a lot of promise for treating NETs, and may prove to be even more exciting in the future. In this episode of NETwise, we’re going to tell you everything we know about this new treatment: how it works, how it came to be, and what it means for NET patients. 

Thank you to Mary Seibert for sharing her NET story.  

Experts in this episode:

                  Osman Ahmed, MD is an interventional radiologist at the University of Chicago.

Zhen Xu, Phd, is one of the inventors of histotripsy, and one of the founders of HistoSonics, the company that makes histotripsy devices. She’s a professor of biomedical engineering, radiology, and neurosurgery at the University of Michigan. 

Click here to download a transcript of this episode. Thank you to our NETWise sponsor:

The post NETWise Episode 35: Histotripsy appeared first on NETRF.

While most neuroendocrine tumors are low-grade and slow growing, there are some that are high-grade and very aggressive.  These high-grade NETs are treated very differently.  In the newest episode of NETWise, we turn the spotlight on high-grade NETs, talk with NET physicians about the treatment challenges, and hear from a patient and caregiver about dealing with the diagnosis. Listen above.

Net experts featured in this podcast:

Dr. Thor Halfdanarson, Medical Oncologist, Mayo Clinic, Minnesota    Dr. Namrata Vijayvergia, Medical Oncologist, Fox Chase Cancer Center Dr. Laura Tang, Pathologist, Memorial Sloan Kettering Cancer Institute   Special thanks to Hilary Hammel and Susan Meckler Plummer for sharing their patient and caregiver stories.  We are grateful for everyone’s participation.  After you’ve listened to the episode, test your NET Knowledge by taking the LACNETS quiz here.

After you listen to the episode, test your knowledge by taking the LACNETS quiz here Download a transcript of this episode

The post NETWise Episode 18: High-Grade NETs and NECs appeared first on NETRF.

The liver is very often the first and most significant site of neuroendocrine tumor metastasis and for many people, managing the disease in the liver is the most challenging part of their NET journey. In this episode of NETWise, we’re going to focus on an organ that is almost never a NET primary site, but nevertheless is crucially important to many people with NETs: the liver. 

First, you’ll learn that the liver is a unique organ with a resiliency that is remarkable. Why is the liver such a frequent site for NET metastases?   Hear about the various treatments for liver neuroendocrine tumors and the risks and benefits of each of them. 

Cindy Lovelace and Katherine Mueller share their experiences, the treatments they have had for their liver NETs, and their advice for other patients.  

NET experts featured in this episode:Use our episode infographics to get a visual picture of some of the things we have discussed.

Dr. Mary Maluccio
Surgical Oncologist
Medical Director
Louisiana State University/Ochsner Medical Center NET Program

Dr. Satya Das 
Medical Oncologist
Co-Director, Neuroendocrine Tumor Program
Vanderbilt University Medical Center, Vanderbilt Ingram Cancer Center

Dr. Helen Te
Clinical Hepatologist
University of Chicago Medical Center

Dr. Xavier Keutgen
Director of the Neuroendocrine Tumor Center 
University of Chicago Medical Center

Dr. Osman Ahmed
Interventional Radiologist
University of Chicago Medical Center

Special thanks to Cindy Lovelace and Katherine Mueller for sharing their stories.  This episode is dedicated to Katherine’s memory.  We thank her family for their support of her inclusion in this podcast.

After the episode, test your knowledge by taking the LACNETS quiz here Download episode transcript here Mentioned in this Episode:

2021 KNOW YOUR NETS: Keeping your Liver Healthy

2020 KNOW YOUR NETS: How Much Can Liver Take – Treating with IR

2020 KNOW YOUR NETS: NETs Surgery: Risks and Benefits for Metastatic Tumors

ADDITIONAL NET RESEARCH FOUNDATION RESOURCES:

Request a Mailed Copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post NETWise Episode 17: Focus on Liver NETs appeared first on NETRF.

They say “you are what you eat”, and that can be a real challenge for people with neuroendocrine tumors. In this episode of NETWise, we’re going to look at all the ways that NETs interact with nutrition–how having a NET can affect your body’s ability to use nutrients properly, and how what you choose to eat can help or hurt your NET treatment and quality of life.

Learn about how neuroendocrine tumors can complicate digestion and how to identify food triggers that may cause symptoms.  You’ll hear about enzymes and supplements, and why what may be a healthy diet for some people may not be the best for people with NETs. 

You’ll hear from Devon Billings and Cindy Abel who share their stories and what they have learned about enjoying food and managing their nutrition.  

NET experts featured in this episode:Use our episode infographics to get a visual picture of some of the things we have discussed.

Dr. Michelle Kang-Kim, 
Gastroenterologist 
Co-Director of the Center for Carcinoid and Neuroendocrine
Tumors 
Mt. Sinai Medical Center, New York

Leigh Anne Burns, MD, RD, LDN
Registered Dietician

Greta Macaire
Oncology Dietician/Nutritionist 
University of California, San Francisco

Special thanks to Devon Billings and Cindy Abel who shared their personal stories for this episode.

Download a transcript of this episode Mentioned in this Episode:

Eating Right with NETs 

Nutrition and Neuroendocrine Tumors with Greta Macaire

NETs Nutrition with Luz Chavez 

ADDITIONAL NET RESEARCH FOUNDATION RESOURCES:

Request a Mailed Copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post NETWise Episode 16: NETs and Nutrition appeared first on NETRF.

When you’re fighting cancer, treating your tumors is only part of the care you need to continue living your best life. Caring for you as a person – mind, body, and spirit – is the focus of a dedicated team of interdisciplinary professionals who have a lot to offer people with neuroendocrine tumors. Just don’t be scared of the “P” word! 

Palliative care addresses all the issues impacting a person’s quality of life. These might include managing symptoms and side effects, managing pain, and dealing with the psychological and emotional ramifications of living with a serious illness.  A landmark study done at Harvard in 2010 demonstrated that cancer patients receiving dedicated palliative care on top of treatment for their cancer did better in a myriad of ways. 

In this episode, hear from physicians about what palliative care is—and is not.  Richard Redding and Laurel Howard share their stories about how palliative care has helped them deal with their illness.  Caregiver Roseanne Crane talks about her husband’s experience with a palliative care team. 

NET experts featured in this episode:Use our episode infographics to get a visual picture of some of the things we have discussed.

Dr. Steve Pantilat
Palliative Care
The University of California, San Francisco 

Dr. Sandy Tun
Pallaitive Care
The University of Chicago 

Abraham Labrada-Santiago
Chaplain
Mayo Clinic

Download a transcript of this episode Mentioned in this Episode:

Share Your Story

Causes of Neuroendocrine Tumors

The Emotions of Living with Neuroendocrine Tumors

Assistance and Support for Neuroendocrine Tumors

Living Well with Serious Illness

ADDITIONAL NET RESEARCH FOUNDATION RESOURCES:

Request a Mailed Copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post NETWise Episode 15: Supportive Care for the Mind, Body, and Soul appeared first on NETRF.

Pheochromocytomas and paragangliomas are rare neuroendocrine tumors that occur inside or outside the adrenal glands. Affecting approximately 1 in 3,000 people, pheochromocytomas and paragangliomas are unique tumors in that they can produce excessive amounts of “fight or flight” hormones that can cause over 100 different signs and symptoms. The symptoms can come and go and without warning but if left untreated can cause life-threatening damage. 

In this episode of NETWise, we will explain what these tumors are and how they are different from other NETs, the genetic aspects of these tumors; why it’s so important for pheochromocytoma and paraganglioma patients to be managed by a team of doctors who specialize in these tumors, surgical options; drug therapies and new nuclear medicine treatments that are offering hope to patients.

On average, it takes three years from the time a patient begins experiencing symptoms before a correct diagnosis is reached. You’ll have a chance to hear Eli Soto’s story. He was diagnosed in 2018 but doctors estimate the pheo was slowing growing inside him for more than a decade. Eli shares his incredible journey and the lessons he learned that could help other patients.

NET experts featured in this episode:Use our episode infographics to get a visual picture of some of the things we have discussed.

Bonnie Bennett
Nurse Coordinator for the Neuroendocrine Tumor program
University of Pennsylvania

Dr. Lauren Fishbein
Endocrinologist
UCHealth and the University of Colorado School of Medicine

Samantha Greenberg
Genetic Counselor and Paraganglioma Clinic Manager
Huntsman Cancer Institute 

Dr. Joseph Dillon
Endocrinologist
University of Iowa

Dr. Erik Mittra
Chief of Nuclear Medicine and Molecular Imaging
Oregon Health and Science University

Dr. Nancy Perrier
Head of Surgical Endocrinology
MD Anderson Cancer Center

Dr. Nancy Sharma
Medical Oncologist
Swedish Cancer Institute

Check out where pheochromocytomas and paragangliomas, both very rare NETs, can occur in the body.

Download PDF Download a transcript of this episode Mentioned in this Episode:

Share Your Story

PheoPara Alliance

Causes of Neuroendocrine Tumors

Genetic Testing for NETs

Pheochromocytoma and Paraganglioma 

Pheo Para Center of Excellence Program

ADDITIONAL NET RESEARCH FOUNDATION RESOURCES:

Request a Mailed Copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post NETWise Episode 14: Pheos and Paras — NETs Known as “the Great Mimic” appeared first on NETRF.

Understanding the Relationship Between NETs and Genetics

What role do genetics play in neuroendocrine tumors (NETs)? Is genetic screening right for you? Should you have your family members screened for a hereditary gene? In this episode of NETWise, we will explore the relationship between NETs and DNA and explain why your genetic code might hold important implications for treatment strategies, prognosis, and the health of family members.

You’ll hear from Gretchen Thone, a genetic counselor at Geisinger Medical Center about how hereditary conditions can be passed from parents to children and the importance of seeking professional testing and counseling. Dr. Joseph Dillon from the University of Iowa, Dr. Lauren Fishbein from the University of Colorado and Dr. Mark Lewis from Intermountain Healthcare in Utah will share their expertise about the genes that are linked to syndromes that have an increased risk of developing  NETs.

You will also have an opportunity to hear from John Metzcar, a patient with Multiple Endocrine Neoplasia, Type I or “MEN-1” and Doug Karle, a patient with Von Hippel Lindau Syndrome. They will share their personal stories of living with a hereditary syndrome, the role genetic testing played  in their journey and how being a father shaped their experiences and decisions with genetic testing.

While most NETs are not caused by genetic mutations, here are some syndromes that are related to neuroendocrine tumors.

Download PDF Download a transcript of this episode Mentioned in this Episode:

Share Your Story 

Causes of NETs  

Genetic Testing for NETs

Pheochromocytoma and Paraganglioma

Von Hippel Lindau Alliance

PheoPara Alliance

ADDITIONAL NET RESEARCH FOUNDATION RESOURCES:

Request a Mailed Copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post NETWise Episode 13: NETs and Genetic Screening appeared first on NETRF.

Caregivers Share the Burden of a NET Diagnosis

A diagnosis of neuroendocrine cancer impacts the person who receives the diagnosis, as well as those they love.  A spouse, child, or friend may take on the role of caregiver—a partner to the patient on the NET journey and advocate for their loved one.  It’s a job they did not anticipate or prepare for. This episode of NETWise focuses on caregivers to recognize and celebrate their essential place in the care team.  Hear their unique perspectives and what their support means to a patient.  

 

Download a transcript of this podcast

We invite you to express your love and gratitude to those in your family or community who care for you through a Love Note gift. Leave a message about why they mean the world to you and NETRF will send your message along with a Love Note to the person who has been by your side every step of the way. This is a beautiful way to donate to NET research; while recognizing those who give you a sense of hope.

Special thanks to Chuck Murphy, Katie Bourke, Tim Cape and Harold Bouis for sharing their stories.  This episode is dedicated in honor of Harold. 

WRAP YOUR CAREGIVER IN LOVE Mentioned in this Episode:

Share Your Story

The Emotions of Living with Neuroendocrine Tumors

Assistance and Support for Neuroendocrine Tumors

Living Well with Serious Illness

LACNETS Caregiver Support Group

ADDITIONAL NET RESEARCH FOUNDATION RESOURCES:

Request a Mailed Copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post NETWise Episode 12: The Importance of Caregivers appeared first on NETRF.

Unique challenges for young people with NETs

Facing a diagnosis of neuroendocrine cancer, when you are a teenager or young adult, presents unique medical, social, financial, and even fertility challenges. How do you navigate the healthcare system? Who do you tell about your illness and when? Will you be able to have a career? Can you have children?

In this episode, hear from NET experts Dr. Jaydira Del Rivero and Dr. Manisha Shah about the diagnosis of NETs and prognosis in young people.  Kalen Fletcher, a Licensed Independent Clinical Social Worker, talks about young people’s emotional reactions to living with cancer.  Dr. Mark Lewis, a patient and physician, shares his story. We also hear from Sophia Hurtado and her mother Maryanne about Sophia’s courage.

The world of “AYA” patients—adolescents and young adults—does not have to be isolating. There is hope and support if you know where to look.

Download a transcript of this episode Mentioned in this Episode:

Causes of Neuroendocrine Tumors

The Emotions of Living with Neuroendocrine Tumors

stupidcancer.org

thesamfund.org

ADDITIONAL NET RESEARCH FOUNDATION RESOURCES:

Request a Mailed Copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post NETWise Episode 11: AYA (Adolescents and Young Adults) and NETs appeared first on NETRF.

Did you know that there are more treatments for pancreatic NETs (PNETs) than for other types of NETs?

While there are more options, treatment for PNETs needs to be individualized since these tumors can vary significantly in stage, grade, and their ability to cause hormonal symptoms.  PNETs are complex because the pancreas plays an essential role in our bodies’ functions.   If you or someone you know has a PNET, this episode of NETWise discusses the importance of the pancreas and how PNETs are diagnosed.  You’ll also learn that there are several genetic syndromes that can increase vulnerability to PNETs. 

Hear about treatment options and research for PNETs from NET specialists Drs. Emily Bergsland and Phillip Phillip.  

Pancreatic Surgeries:  The pancreas is surrounded by important organs and made up of different parts. Take a look at these illustrations to improve your understanding  of pancreas anatomy and the different surgeries used to treat it.

Download PDF Download a transcript of this episode Mentioned in this Episode:

PNETs

Treatment Options

VIDEO: Pancreas NET Breakout—Dr. Pam Kunz

VIDEO: Surgery for NETs—Dr. James Howe

VIDEO: Functional vs. nonfunctional tumors—Dr. Heloisa Soares

ADDITIONAL NET RESEARCH FOUNDATION RESOURCES:

Request a Mailed Copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post NETWise Episode 10: Pancreatic NETs appeared first on NETRF.

Did you know that about 1 in 4 NETs develop in the lungs?

Lung NETs are often overlooked, less frequently discussed, and more misunderstood than NETs that begin in the pancreas or GI tract. It can be frustrating for individuals and families living with a lung NET to find useful information or the right health care professional to work with. This special episode of NETWise covers all things Lung NETs.

Do you want to learn more about the classification of the different types of lung NETs? In this episode, we map out the lung NET classification system. While we mainly focus on typical and atypical carcinoids, we also included information about large cell and small cell lung cancer. We talk about each different type of lung NET, their distinctive characteristics, and what they have in common. We did not forget about DIPNECH. Information about this ultra-rare condition is also included in this episode.

This episode is for every person and family affected by lung NETs. We hear your call for more information. After you listen to this episode, you will have a better understanding of the classification system of lung NETs, surgical options (including the controversial ones), medical treatments, and how you can get involved with research to advocate for more approved treatment options.

Use our episode infographics to get a visual picture of some of the things we have discussed.

LungNETS: See the different types of LungNETs and how they differ in their aggressiveness and likelihood of spreading.

Download PDF Download a transcript of this episode Mentioned in this Episode:

Share Your Story

Lung NETs

A Look at Lung NETs

VIDEO: Medical Management of Lung NETs – Dr. Ed Wolin, Mount Sinai Medical Center

VIDEO: Basics of Lung NET Diagnosis and Treatment – Dr. Sukhmani Padda – Stanford University 

VIDEO: Surgical Treatment of Lung NETs – Dr. Andrew Kaufman – Mount Sinai

ADDITIONAL NET RESEARCH FOUNDATION RESOURCES:

Request a Mailed Copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post NETWise Special Episode: Lung NETs appeared first on NETRF.

In this episode of NETWise, we talk about the experiences of young people living with NETs. This is an update to an episode that was originally published in 2020. A special thank you to  Dr. Aman Chauhan, a medical oncologist who leads the University of Miami Neuroendocrine Cancer Program and Dr. Jaydira Del Rivero, a medical oncologist and a board-certified endocrinologist at the National Institute of Health, for their help with this episode update. 

These patients face a specific set of challenges unique to their age and need particular kinds of help navigating the NET journey. This group of patients is often called “AYA,” which stands for Adolescents and Young Adults. For this episode, we’re going to concentrate on the “YA” part of AYA – those who are grappling with a cancer diagnosis as college students or young professionals.

Experts in this episode: 

 

 

 

Dr. Aman Chauhan, MD, is a medical oncologist who leads the University of Miami Neuroendocrine Cancer Program.

 

 

Dr. Jaydira Del Rivero, MD, is a medical oncologist and a board-certified endocrinologist at the National Institute of Health.

 

 

Dr. Manisha Shah, MD is a medical oncologist at the Ohio State University Comprehensive Cancer Center.

 

 

 

 

 

Kaylen Fletcher, LCSW, is a  support group facilitator for young adults with cancer at Beth Israel Deaconess Medical Center in Boston.

 

 

 

Dr. Mark Lewis, MD, is the director of gastrointestinal oncology for Intermountain Healthcare, which serves patients in Utah, Idaho, and Nevada. Dr. Lewis is also a NET patient himself. He was diagnosed with a pancreatic neuroendocrine tumor at the age of 30. 

A special thank you to Hannah Folkerts and Bethany Ross for sharing their NET journey. 

Click here to download a transcript of this episode

See below for a monthly online support group gathering for adolescents and young adults sponsored by the Healing NET Foundation. We thank them for sharing this resource with our community! 

Thank you to our NETWise sponsor:

The post NETWise Episode 34: Young Adults Living with NETs: Updated Episode appeared first on NETRF.

New Ways to Detect and Treat NETs 

What are clinical trials? In this episode of NETWise, discover how new ideas in NET detection and treatment are moving from the laboratory to the bedside. You’ll learn about the different stages of research and how promising drug compounds progress through them.

You will also learn how clinical trials determine whether new or improved treatments are safe and effective and work better than current therapies.

Have you ever thought about joining a clinical trial? You will hear from NET specialists like Drs. Satya Das, Daniel Halperin, Renuka Iyer, Pam Kunz, Nitya Raj, and Diane Reidy-Lagunes about how patients can talk to their care team about participating in a clinical trial. This episode will also dispel some common clinical trial myths about taking placebos and eligibility requirements. We hear from NET patient advocate Josh Mailman about some of the existing problems accessing clinical trials and what we can do to overcome these barriers.

After you listen to this episode, you will have a better understanding of how clinical trials work, why they are essential, and how you can talk to your care team about your participation options.

Use our episode infographics to get a visual picture of some of the things we have discussed.

Clinical trials: See the phases of clinical trials and how they differ in the process to develop and test new treatments.

Download PDF Download a transcript of this episode Mentioned in this Episode:

Share Your Story

Clinical Trials for NETs

Therapies for Neuroendocrine Tumors

Steps to Find Clinical Trials

VIDEO: Clinical Trials – What Are They and Who Should Enroll – Dr. Pamela Kunz, Yale University 

VIDEO: Understanding Clinical Trials – Dr. Renuka Iyer, Roswell Park Cancer Institute

VIDEO: Immunotherapy for NETs – Dr. Pamela Kunz, Yale University 

ADDITIONAL NET RESEARCH FOUNDATION RESOURCES:

Request a Mailed Copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post NETWise Episode 7: Clinical Trials appeared first on NETRF.

Using Virtual Appointments to Care for NET Patients

In this special episode of NETWise, we learn how COVID-19 is forcing our health care systems to make sweeping operational changes. Amid lockdown and stay-at-home orders, NET specialists are switching to telemedicine visits as a new option.

The increased use of telemedicine over the past few months is creating new opportunities for NET patients. We recognize that not all NET patients have access to a NET specialist. Traveling to faraway appointments may not be an option. But virtual appointments via telemedicine are now helping NET patients across the country reach out to NET specialists. 

Listen as we talk with Dr. Heloisa Soares and her NET care team at the Huntsman Cancer Institute at the University of Utah to learn more about how telemedicine works and its benefits to NET care. We also talk to a NET patient about her positive experiences using telemedicine and how to prepare for a successful virtual visit. 

After listening to this episode, you will know more about how telemedicine can help you access the best possible care for your NET.  

Use our episode infographics to get a visual picture of some of the things we have discussed. Download a transcript of this episode Mentioned in this Episode:

Share Your Story

Find a NET Specialist

COVID-19 Resources

ADDITIONAL NET RESEARCH FOUNDATION RESOURCES:

Request a Mailed Copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

Navigating the NET Patient Journey – Healing NET Foundation Guide

The post NETWise Special Episode: COVID-19 and the Rise of Telemedicine appeared first on NETRF.

Functional and Non-Functional NETs

This episode is about managing the symptoms of functional NETs. To understand these symptoms, we start by talking about hormones. What role do hormones play in the human body? And what do they have to do with NETs?

We’ll help you understand the differences between functional and non-functional NETs. You’ll also learn why their shared characteristics make it hard to tell them apart.

A panel of NET specialists discusses ways to manage the many symptoms caused by functional NETs, including:

• Diarrhea
• Flushing
• Racing heartbeat
• Carcinoid crisis
• Carcinoid heart disease
• Emotional shifts

You’ll also hear from two NET patients who talk about their experiences with carcinoid syndrome and carcinoid crisis. This episode will leave you with more information than ever about symptomatic NETs and how  to better manage your disease.

Use our episode infographics to get a visual picture of some of the things we have discussed. NET specialists included in this episodeUse our episode infographics to get a visual picture of some of the things we have discussed. https://netrf.org/specialist/aman-chauhan-md/ Aman Chauhan, MD
Medical Oncology, University of Kentucky, Lexington, KY https://www.pennmedicine.org/providers/profile/caroline-creamer Caroline Creamer, PA-C
Gastroenterology, University of Pennsylvania, Philadelphia, PA https://netrf.org/specialist/joseph-s-dillon-mb-bch-bao/ Joseph Dillon, MD
Endocrinology, University of Iowa Health Care, Iowa City, IA https://netrf.org/specialist/dr-eric-liu-md/ Eric Liu, MD
Surgery, Rocky Mountain Cancer Centers, Denver, CO https://netrf.org/specialist/david-c-metz-md/ David Metz, MD
Gastroenterology, University of Pennsylvania, Philadelphia, PA https://netrf.org/specialist/dr-eric-nakakura-md/ Eric Nakakura, MD, PhD
Surgery, University of California, San Francisco, CA https://netrf.org/specialist/dr-michelle-kim-md/ Michelle Kang-Kim, MD
Gastroenterology, Mount Sinai Hospital, NY, NY https://netrf.org/specialist/dr-heloisa-soares-md/ Heloisa Soares, MD, PhD
Medical Oncology, Huntsman Cancer Institute, Salt Lake City, UT https://netrf.org/specialist/dr-edward-wolin-md/ Edward Wolin, MD
Medical Oncology, Mount Sinai Hospital, NY, NY Download a transcript of this episode Mentioned in this Episode:

Share Your Story

Managing Symptoms of NETs

Eating Right with NETs

Therapies for Neuroendocrine Tumors

VIDEO: Hormones and NETs – Dr. Joseph Dillon, University of Iowa

VIDEO: Functional and Nonfunctional NETs – Dr. Aman Chauhan, University of Kentucky

VIDEO: NET Symptoms and Treatments – Dr. Dan Halperin, MD Anderson Cancer Center

VIDEO: NET Nutrition – Luz Chavez, University of Chicago

ADDITIONAL NET RESEARCH FOUNDATION RESOURCES:

Request a Mailed Copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post NETWise Episode 6: Managing Symptoms of NETs appeared first on NETRF.

Understanding SSAs, Chemotherapy, and Targeted Therapy

What treatments do oncologists use to slow or stop neuroendocrine tumor growth? What role do newer approaches like targeted therapy or immunotherapy play in treating neuroendocrine cancer? And what drugs can be used to alleviate symptoms caused by hormone-producing tumors? 

In this episode of NETWise, we explore multiple medical treatments for neuroendocrine tumors. We’ll look at the different roles chemotherapy, targeted therapy, and hormone therapy play in managing the spread of disease…and in managing the disruptive symptoms caused by some NETs. 

You’ll gain insight into the sequencing of treatments as we discuss how medical treatments are integrated with other modalities of care, such as surgery and nuclear medicine. And when you’ve finished listening to this important discussion, you will be more informed for the next conversation you have with your care team about treatment planning.

Use our episode infographics to get a visual picture of some of the things we have discussed. Download a transcript of this episode Mentioned in this Episode:

Therapies for Neuroendocrine Tumors

Clinical Trials for NETs

NET Patient Stories

VIDEO: Chemotherapy and Targeted Therapy for NETs – Dr. Mark Lewis,  Intermountain Healthcare 

VIDEO: Multi-Disciplinary, Patient Centered Care – Drs. Sue O’Dorisio and Tom O’Dorisio, University of Iowa

VIDEO: What About Immunotherapy – Dr. Pamela Kunz, Stanford University 

VIDEO: Systemic Therapies for NETs – Dr. Andy Liao, University of Chicago

VIDEO: NETs Symptoms and Treatments – Dr.  Dan Halperin, MD Anderson

Additional NET Research Foundation Resources:

Request a Mailed Copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post NETWise Episode 5: Medical Management of NETs appeared first on NETRF.

In this special episode of NETWise, listen as we talk about COVID-19. As a NET patient, you may have additional risk for serious illness from COVID-19, so we share some tips for avoiding infection, managing your NET treatment, and staying mentally healthy during this challenging time.

NETRF CEO, Elyse Gellerman, chatted with Dr. Mark Lewis, NET patient and the Director of Gastrointestinal Oncology at Intermountain Healthcare, about the ten things patients and caregivers want to know about NETs and COVID-19. Portions of that interview are included in this podcast. Watch the entire interview on NETRF’s YouTube page.

Stay up to date with your local and national health authorities and your NETs care team for the latest information.  NETRF has an entire section of our website dedicated to COVID-19 information as well as NET-specific resources.

This podcast and the information it contains is current as of its recording date on April 7.

Information from NETRF about COVID-19

Ten Things You Want to Know About COVID-19 and NETs – Webinar with Dr. Mark Lewis and Elyse Gellerman

Online NET groups

Inspire (groups for lung, GI, and pancreatic neuroendocrine tumors)

Association of Cancer Online Resources (ACOR) Carcinoid Cancer Online Support Group

Information about telemedicine and telehealth

In-home injection programs

Ipsen offers a home injection program for lanreotide, through its IPSEN CARES® program at (866) 435-5677.

Novartis offers a mobile administration program for long-acting octreotide through its Patient Assistance Now Oncology (PANO) program at 1-800-282-7630.

Tools for advocacy and self-care

National Organization for Rare Disorders webinar on Self-Advocacy and Care Coordination featuring Laran Hyder, NETRF Director of Patient Education and Outreach.

NorCal CarciNET Community

LACNET’s NET VITALS tool

Patient Advocate Foundation

Online resources for drug and alcohol addiction

https://beta.aa-intergroup.org/

https://www.samhsa.gov/find-help/national-helpline

Free Online EntertainmentMovies

https://www.popcornflix.com/

https://www.vudu.com/content/movies/uxpage/View-All-Free-Movies-TV/206

https://tubitv.com/home

https://pluto.tv/

Books

https://www.gutenberg.org/

https://manybooks.net/

Games and Puzzles

https://www.jigsawplanet.com/

https://www.arkadium.com/free-online-games/

https://www.merriam-webster.com/word-games

  Download a transcript of this episode

The post NETWise Special Episode: COVID-19 and NETs – What You Need to Know appeared first on NETRF.

Treating NETs with Nuclear Medicine

This episode of NETRF’s NETWise podcast discusses Peptide Receptor Radionuclide Therapy (PRRT) a targeted form of radiotherapy approved in the U.S. in 2018. Listen in as NET experts like Josh Mailman, Drs. George Fisher, Thor Halfdanarson, Ed Wolin, Richard Baum, and others explain what it is, how it works, and who is most likely to benefit from PRRT. This therapy relies on a tumor’s expression of somatostatin receptors. We explain what they are and how to know if you have them.

Then, we’ll take an objective look at the success rates for this therapy. What does research, like the NETTER-1 study, tell us about outcomes for this form of treatment? To give you information about both the pros and cons of PRRT, we will also discuss the potential side effects, from mild to serious. To give you a sense of what it is like to undergo PRRT, we’ll talk with multiple patients about their experience with the procedure itself, as well as the radiation safety precautions patients should take immediately following treatment. Finally, we look to the future asking Drs. Rod Hicks and Tom Hope to explain some of the new therapeutic directions PRRT is taking.

Use our episode infographics to get a visual picture of some of the things we have discussed.

PRRT for NETs. This handout explains how radioactive drugs are able to target NET cells with radioactivity using PRRT.

Download PDF

What is PRRT? A quick guide to answer your most basic questions about the pros and cons of PRRT.  What are the benefits of PRRT? What are the potential side effects of PRRT?  Who can be treated with PRRT? 

Download PDF Download a transcript of this episode Mentioned in this Episode:

Nuclear Medicine Treatments

Gallium-68 Dotatate PET/CT Scan

Search for PRRT treatment Centers Near You

What’s Next in PRRT Treatment

VIDEO: How PRRT Works and Who Benefits – Dr. Blase Polite, University of Chicago

VIDEO: What to Expect During PRRT Treatment – Karen Ohara, Rush University Medical Center

VIDEO: How PRRT Can Improve Care for NET Patients

VIDEO: Combining PRRT with Targeted Therapy

VIDEO: Tb-161: Exploring a New Radionuclide for PRRT

Additional NET Research Foundation Resources:

Request a mailed copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post NETWise Episode 4: Nuclear Medicine for NETs: What is PRRT? appeared first on NETRF.

Direct NET Treatments

In this episode of NETWise, we discuss two common treatments for neuroendocrine tumors. Treatment, like surgery and interventional radiology, can reduce the number and size of NETs as well as reduce some of the symptoms caused by tumors.

Did you know that almost 70% of NET patients have surgery? In this episode, NET surgeons describe surgical procedures like “debulking” and the whipple procedure. We also hear how endoscopies are used to treat NETs. Here is a hint. Have you ever played Pac-Man?

You will also learn more about “multi-focal primaries” in the small bowel and how surgeons can employ minimally invasive surgical techniques to “run the small bowel.” We also speak with an expert thoracic surgery about several surgical options for lung NETs.

We will explain enucleation surgery and talk more about all the surgery jargon you often hear and what it means for patients.

Last, but not least, NETWise covers all the information you need to know about interventional radiology (IR) for NETs. We describe bland embolization, chemoembolization, radioembolization, and radiofrequency ablation. Finally, two patients add their surgery experiences to the podcast as they talk about their decisions to have surgery and their respective recoveries.

If you are scheduled for upcoming NET surgery, please consider donating tumor tissue to fill the urgent need for use in laboratory research. Find out more here.

Gastrointestinal (GI) Tract Surgeries: Anatomical illustrations show what tissue is removed during surgery, with explanations about the most common GI surgeries for NETs.

Download PDF

Pancreatic Surgeries:  The pancreas is surrounded by important organs and made up of different parts. Take a look at these illustrations to improve your understanding  of pancreas anatomy and the different surgeries used to treat it.

Download PDF

Lung Surgeries: Illustrations depict the different parts of your respiratory system. See how different  surgical approaches are used to remove tumor tissue, while preserving healthy tissue. 

Download PDF

Liver-directed Therapies: See the explanations and illustrations about how interventional radiology removes or reduces liver NETs, with information about different types of embolization and ablation.

Download PDF Download a transcript of this episode TAKE THE NET QUIZ

Los Angeles-based patient support group LACNETS has developed a NET quiz based on this NETWise podcast. Once you’ve finished listening, test your knowledge.  

Mentioned in this Episode:

Tumor Grade and Stage

Find a NET Specialist

Donate Tumor Tissue for NET Research

NET Surgery

Interventional Radiology for NETs

Distal pancreatectomy

Enucleation

Pancreatoduodenectomy (Whipple Surgery)

Small bowel resection

Lobectomy

Pneumonectomy

Sleeve resection

Wedge resection

Additional NET Research Foundation Resources:

Request a mailed copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post NETWise Episode 3: Surgery and Interventional Radiology for NETs appeared first on NETRF.

Detecting and Monitoring NETs

Learn about important neuroendocrine tumor diagnostic tests including Gallium 68, Ki-67, and 5-HIAA. Listen as NETWise takes you on a journey to diagnose neuroendocrine cancer. This episode discusses some common NET tests so you can understand their role in your treatment planning and be better able to understand what the results mean. You will hear from two patients about their experiences with diagnosis and monitoring. We explore imaging in this episode, describing CT and MRI scans, PET-CT scans, FDG-PET, octreotide scans, and Gallium-68 (Ga-68) dotatate PET. You will hear about endoscopy and biopsy. Pathology plays a role in determining a diagnosis as well as determining grade. You will learn about well-differentiated and poorly-differentiated NETs and what that may mean for determining treatment. We also talk about blood and urine tests and how they may be used for detection and monitoring. Finally, we speak with physicians about building an expert care team and how you can work with both a local doctor and distant expert to get the best care.

Use our episode infographics to get a visual picture of some of the things we have discussed.

From blood-testing to x-rays, and everything in between, learn more about the many different ways NETs are diagnosed and monitored.

Download PDF

NETs are a complicated disease and many people may be included in your care. Check out how many different people could be a part of your care and support team.

Download PDF Download a transcript of this episode TAKE THE NET QUIZ

Los Angeles-based patient support group LACNETS has developed a NET quiz based on this NETWise podcast. Once you’ve finished listening, test your knowledge: Part 1, Part 2.  

Mentioned in this Episode:

Diagnostic Testing for NETs

Imaging Tests for NETs

Blood Tests for NETs

Urine Testing for NETs

Tissue Tests for NETs

Tumor Grade and Stage

Find a NET Specialist

Donate Tumor Tissue for NET Research

Additional NET Research Foundation Resources:

Request a mailed copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

Navigating the NET Patient Journey – Healing NET Foundation Guide

The post NETWise Episode 2: Imaging, Testing, and Building a Care Team appeared first on NETRF.

When one is diagnosed with an illness, like NETs, mortality can come to the forefront. Even if your NET journey presents a trajectory of being chronic and is stable, it is not uncommon to have thoughts about disease progression and mortality. 

There is also a lot of stigma and discomfort in talking about end of life. The complex nature of neuroendocrine cancer and the variability in its progression can make it hard to predict outcomes, adding to the uncertainty and difficulty in discussing the topic. There is also power in knowing more about this journey and especially the resources that are available for this stage of living. With this episode, we wanted to make space to talk about something that is inevitable- that a part of living is dying. 

Knowing about end-of-life care can empower you to make informed decisions about  your health and quality of life. Understanding the trajectory of neuroendocrine cancer and the options available for end-of-life care can help us navigate difficult decisions with more confidence and clarity. It allows us to plan ahead, discuss your preferences with healthcare providers, and ensure your wishes are respected, leading to a more dignified and comfortable end-of-life experience.

When you listen to this episode, pay attention when Josh Mailman mentions “enjoying every sandwich” and finding your “what matters most.” There is indeed a power in knowing. 

In this episode of NETWise we discussed the paper (posted here) that you can share with your doctor or hospice provider.  Practical considerations when providing palliative care to patients with neuroendocrine tumors in the context of routine disease management or hospice care in a resource for you.

To learn more about creating your advanced directives, go here. 

Click here to download a copy of this episode's transcript Click here to download "Practical considerations when providing palliative care to patients with neuroendocrine tumors in the context of routine disease management or hospice care." Experts in this episode:

Jaydira Del Rivero, MD is a medical oncologist and a board certified endocrinologist at the National Institute of Health.

Julie Hallet, MD is a surgical oncologist at Sunnybrook Health Sciences Centre at the University of Toronto. 

Josh Mailman, a NET patient, NETRF board member and advocate, is a world authority on PRRT for NETs.

Jena Fosdick, BSN is the regional director of clinical operations for St. Croix Hospice in Omaha, Nebraska. 

Special thanks to Boehringer Ingelheim for their support of this podcast. 

The post NETWise Episode 33: The Power of Knowing: Mortality & End of Life appeared first on NETRF.

Some of the rarest, most complex, and difficult NETs are known as pheochromocytomas and paragangliomas. This is an updated version of an episode that first aired in 2021. A special thank you to Dr. Erik Mittra Chief of Nuclear Medicine and Molecular Imaging at Oregon Health and Science University for his expert assistance with this episode update. This episode update addresses some changes in treated pheos and paras. Between 2018 and 2023, there was an FDA-approved treatment on the market for unresectable, metastatic pheos and paras. This medication was called Azedra. It used similar technology to PRRT, delivering radioactive isotopes to the tumors with a synthetic analog of the hormone norepinephrine. But in 2023, the company that manufactured Azedra announced it was taking the medication off the market. This episode covers all you need to know about  pheochromocytomas and paragangliomas. 

NET Experts in this episode:

 

 

 

Bonnie Bennett
Nurse Coordinator for the Neuroendocrine Tumor program
University of Pennsylvania

 

 

 

Dr. Lauren Fishbein
Endocrinologist
UCHealth and the University of Colorado School of Medicine

 

 

 

Samantha Greenberg
Genetic Counselor and Paraganglioma Clinic Manager
Huntsman Cancer Institute 

 

 

 

Dr. Joseph Dillon
Endocrinologist
University of Iowa

 

 

 

Dr. Erik Mittra
Chief of Nuclear Medicine and Molecular Imaging
Oregon Health and Science University

 

 

 

Dr. Nancy Perrier
Head of Surgical Endocrinology
MD Anderson Cancer Center

Dr. Nancy Sharma
Medical Oncologist
Swedish Cancer Institute

To download a transcript of this episode, click here Special thanks to our sponsors for their support of this episode:

The post NETWise Episode 32: Pheos & Paras (updated episode) appeared first on NETRF.

Research is at the very core of what we do at NETRF. We believe it is the key to discovering cures and more effective treatments for neuroendocrine cancers. In this episode of NETWise, we share some of the most important developments in NET research that happened in 2023,  and look back on the progress made in the past year. Lastly,  we’ll look ahead to new developments on the horizon.   

NET experts in this episode:

Dawn E. Quelle, PhD., is co- chair of NETRF’s Board of Scientific Advisors. She is a professor of Neuroscience and Pharmacology and leader of the Cancer Genes and Pathways Program at Holden Comprehensive Cancer Center at the University of Iowa Carver College of Medicine. 

Pamela L. Kunz, MD is an associate professor of Internal Medicine, director of the Center for Gastrointestinal Cancers at Smilow Cancer Hospital and Yale Cancer Center, Chief, GI Medical Oncology and Vice Chief, Diversity, Equity, and Inclusion for Medical Oncology.

Anna Greene, PhD., is NETRF’s director of research

Click here to download a transcript of this episode Thank you to our sponsors for their support of this episode: 

The post NETWise Episode 31: 2023 Year in Review appeared first on NETRF.

If you’re dealing with NETs, you likely have encountered fatigue in various forms. The spectrum of fatigue spans from temporary and inconvenient to persistent and debilitating. It can be a source of frustration, stress, and, at times, a feeling of isolation, as it may not be readily apparent to others. Despite its prevalence, fatigue often takes a backseat to the primary cancer concerns. However, delving into the distinct causes of fatigue affecting NET patients and exploring effective strategies to manage it can prove beneficial. In this installment of NETWise, our focus shifts to the often-overlooked aspect of fatigue.

NET Experts in this episode:

Claire Mulvey, MD is a thoracic medical oncologist at the University of California in San Francisco. She specializes in lung neuroendocrine cancers. Mulvey’s research centers on developing new treatments for lung neuroendocrine tumors as well as on improving outcomes and quality of life for patients with these cancers.

 

Scott Paulson, MD, serves as the co-director of the Gastrointestinal Research Program for The US Oncology Network, as well as the medical director for the Neuroendocrine Research and Treatment Center at Baylor Charles A. Sammons Cancer Center.

 

 

Amanda Phipps, PHD, MPH is an associate professor of epidemiology at the University of Washington and the Fred Hutchinson Cancer Center. Her research focuses on how different lifestyle factors impact patient survival among those with cancer.

 

 

Jaspal Singh, MD, MHS  is the medical director for Innovation and Quality Improvement for Pulmonary Oncology at Atrium Health Levine Cancer Institute and the medical director for Critical Care Practice and Education at the Jan & Ed Brown Center for Pulmonary Medicine at the Levine Cancer Institute at Atrium Health and Wake Forest School of Medicine.

 

Very special thanks to Beth Leonard and Carrie Camino for sharing their NET story in this episode.

Click here to download a transcript of this episode Click below to take the LACNETs Quiz for this episode https://docs.google.com/forms/d/e/1FAIpQLSff7ms6BZ4bl_MKyUTTb-3pjZU8zPHCy31mTR_Nt_YTIylbcA/viewform

Special thanks to our sponsors for their support of this podcast.

The post NETWise Episode 30: Understanding Fatigue & NETs appeared first on NETRF.

One of the things that sets neuroendocrine tumors apart from other kinds of cancer is that they can occur almost anywhere in the body. Those different locations — or primary sites — can mean the NET takes on different characteristics, and requires different kinds of treatment. In previous episodes of this show, we’ve talked about lung NETs, pancreatic NETs, small bowel NETs, and gynecological NETs. Today, we’re going to be talking about skin NETs. These are known as Merkel cell carcinomas. Merkel cell carcinoma can be challenging to diagnose and treat, making early detection and medical attention crucial. 

Dr. Ann Silk is a medical oncologist at Dana-Farber Cancer Institute, where she co-directs the Merkel Cell Carcinoma Center for Excellence.

Dr. Manisha Thakuria is a dermatologist who works at Brigham and Women’s Hospital and Dana-Farber Cancer Institute. She co-directs their Merkel Cell Carcinoma Center.

Dr. Paul Nghiem is Director, Skin Oncology Clinical Program, the Fred Hutchinson Cancer Center at the University of Washington. He runs a research lab there and takes care of patients with Merkel cell carcinoma.

A special thank you to Leon Igras and Stewart Landers for sharing their NET stories.

Special thanks to our sponsors for their support of this podcast.

Download the episode transcript here After you listen to the episode, test your knowledge by taking the LACNETS quiz here.

The post NETWise Episode 29: Merkel Cell Carcinoma appeared first on NETRF.

In this episode, we’re talking in depth about one of the most exciting and widely discussed treatments for NETs: PRRT.

This is a revised version of an episode that originally released in 2020. A lot has happened since then in the development of nuclear medicine treatments like PRRT, and we’re excited to bring you information that is updated and current. A special thank you to Dr. Courtney Lawhn Heath, a nuclear radiologist at the University of California, San Francisco for helping to update this NETWise episode.

This NETWise podcast discusses Peptide Receptor Radionuclide Therapy (PRRT) a targeted form of radiotherapy approved in the U.S. in 2018. Listen in as NET experts Josh Mailman, Drs. George Fisher, Thor Halfdanarson, Ed Wolin, Richard Baum, and others explain what it is, how it works, and who is most likely to benefit from PRRT. This therapy relies on a tumor’s expression of somatostatin receptors. We explain what they are and how to know if you have them.

We take an objective look at the success rates for this therapy. What does research, like the NETTER-1 study, tell us about outcomes for this form of treatment? To give you information about both the pros and cons of PRRT, we will also discuss the potential side effects, from mild to serious. To give you a sense of what it is like to undergo PRRT, we’ll talk with multiple patients about their experience with the procedure itself, as well as the radiation safety precautions patients should take immediately following treatment. Finally, we look to the future asking Drs. Rod Hicks and Tom Hope to explain some of the new therapeutic directions PRRT is taking.

Thank you to our clinical experts for participating in this episode.

• George Fisher, an Oncologist at Stanford University
• Xavier Keutgen is a surgeon at the University of Chicago
• Courtney Lawhn Heath, a nuclear radiologist at the University of California, San Francisco
• Josh Mailman, a NET patient, NETRF board member and advocate who’s a world authority on PRRT for NETs
• Ed Wolin, an Oncologist at Mt. Sinai in New York
• Richard Baum, a nuclear medicine specialist in Germany
• Aman Chauhan, head of the Neuroendocrine Tumor Program at the University of Miami
• Rathan Subramaniam, Executive Dean of the medical school at the University of Notre Dame in Australia
• Karen Ohara, Research Coordinator at Rush University in Chicago
• Blase Polite from the University of Chicago
• Rodney Hicks from the University of Melbourne in Australia

Thank you to Gary Murfin for sharing his story. This episode is dedicated to the memory of Marilyn Kline, who passed away during the production of the original episode.

Special thanks to our sponsors for their support of this podcast.

Download the episode transcript here What is PRRT? Download PDF here PRRT for NETs. Download PDF here

The post NETWise Episode 28: PRRT Revisited appeared first on NETRF.

Research is at the very core of what we do at NETRF. We believe it is the key to discovering cures and more effective treatments for neuroendocrine cancers. In this episode of NETWise, we will bring you into one of our most exciting yearly events: NETRF’s 2024 Neuroendocrine Cancer Research Symposium. You will hear ways the needle has been pushed in each area of research in the past year. We’ll start with advances in basic research and move through the spectrum to finish with updates that have clinical applications. Click here to download a transcript of this episode.

The post NETWise Episode 41: 2024 Year in Review appeared first on NETRF.

In this episode, we’re diving deep into the symptoms caused by functional neuroendocrine tumors (NENs) and, more importantly, how to effectively manage them. Whether you’re navigating symptomatic NETs yourself or supporting someone who is, this conversation will arm you with fresh insights and practical tools to take control. This is a revamped and enriched update of an episode originally released in 2020. A special thank you to Dr. Eric Nakakura for lending his expertise to this valuable update. Thank you to Maureen Edwards and Cy Ball for sharing their stories. Cy Ball, whose story we heard, passed away. We appreciate that he shared his story with us. NET specialists included in this episodeUse our episode infographics to get a visual picture of some of the things we have discussed. https://netrf.org/specialist/aman-chauhan-md/ Aman Chauhan, MD
Medical Oncology, University of Kentucky, Lexington, KY https://www.pennmedicine.org/providers/profile/caroline-creamer Caroline Creamer, PA-C
Gastroenterology, University of Pennsylvania, Philadelphia, PA https://netrf.org/specialist/joseph-s-dillon-mb-bch-bao/ Joseph Dillon, MD
Endocrinology, University of Iowa Health Care, Iowa City, IA https://netrf.org/specialist/dr-eric-liu-md/ Eric Liu, MD
Surgery, Rocky Mountain Cancer Centers, Denver, CO https://netrf.org/specialist/david-c-metz-md/ David Metz, MD
Gastroenterology, University of Pennsylvania, Philadelphia, PA https://netrf.org/specialist/dr-eric-nakakura-md/ Eric Nakakura, MD, PhD
Surgery, University of California, San Francisco, CA https://netrf.org/specialist/dr-michelle-kim-md/ Michelle Kang-Kim, MD
Gastroenterology, Mount Sinai Hospital, NY, NY https://netrf.org/specialist/dr-heloisa-soares-md/ Heloisa Soares, MD, PhD
Medical Oncology, Huntsman Cancer Institute, Salt Lake City, UT https://netrf.org/specialist/dr-edward-wolin-md/ Edward Wolin, MD
Medical Oncology, Mount Sinai Hospital, NY, NY Click here to download a transcript of this episode.

The post NETWise Episode 40: Managing Symptoms of NENs—Updated Episode appeared first on NETRF.

Lately, there’s been a lot of talk about immunotherapy, which has transformed treatment for patients with some kinds of cancer. So far, patients with NETs and NECs have largely been excluded from these developments. But there’s hope that the benefits of immunotherapy could one day extend to NENs. In this episode of NETWise, we’re going to explore current research into immunotherapy, and what it might mean for patients. Daniel M. Halperin, MD, Associate Professor and Vice Chair for Clinical Affairs in the Department of Hematology and Medical Oncology at Emory University Eleonora Pelle, MD, Post-Doctoral Researcher, Moffitt Cancer Center Dr. Mauro Cives, MD, Senior Assistant Professor of Medical Oncology in the Department of Interdisciplinary Medicine of the University of Bari A special thank you to NETRF board member and NET caregiver, Laurie Littlepage, PhD, for sharing her story. Click here to download a transcript of this episode.

The post NETWise Episode 39: What Could Immunotherapy Mean for NENs? appeared first on NETRF.

Whether or not a patient has access to care is one of the most important factors in how their cancer journey plays out. It is crucial for timely diagnosis and effective treatment of neuroendocrine neoplasms. And when you live in a rural place, that access can be complicated. We often talk about how important it is to seek out specialized care for NENs – but we don’t often talk about how challenging it can be to access that kind of care. In this episode, we’re going to focus on barriers to care that people in rural areas tend to face.

Julie Hallet, MD, M.Sc., FRCSC is a surgical oncologist at Sunnybrook Health Sciences Centre at the University of Toronto. 

Heloisa Soares, MD, PHD is a medical oncologist specializing in NETs at the Huntsman Cancer Institute at the University of Utah.

Thank you to Gene Matthews, Serra Kefeli, and Bev O’Neill for sharing their NEN stories.

Click here to download a transcript of this episode.

The post NETWise Episode 38: Rural Care appeared first on NETRF.

When someone is diagnosed with cancer, one of the first questions is simple — what exactly is it? The answer begins with better understanding pathology.

In this episode of NETWise, we examine the central role pathology plays in the diagnosis and management of neuroendocrine cancers — from initial biopsy through classification, grading, and treatment decision-making. Drawing on insights from leading clinicians, pathologists, and researchers, this conversation provides a clear, structured look at how diagnostic precision is established and why it is essential.

A biopsy — analyzed through pathology — is the gold standard for confirming a cancer diagnosis. By examining tumor tissue, pathologists determine not only whether cancer is present, but also define tumor type, differentiation, grade, and key biomarkers that directly inform prognosis and therapeutic strategy.

In neuroendocrine neoplasms, this level of detail is particularly critical. These diseases represent a heterogeneous spectrum, where tumors that may appear similar under the microscope can behave very differently clinically. Distinguishing between well-differentiated neuroendocrine tumors (NETs) and poorly differentiated neuroendocrine carcinomas (NECs), as well as accurately assessing measures of tumor growth, can significantly alter treatment pathways and outcomes.

This episode focuses on how those distinctions are made — and why they matter. It explores how pathology moves from a small tissue sample to a precise diagnosis, why interpretation can be complex, and why expert review is often essential, particularly in rare and high-grade disease.

We also address the real-world challenges of pathology interpretation in neuroendocrine cancer, including diagnostic complexity, evolving classification systems, and the importance of second opinions and specialized care.

For patients and caregivers, understanding pathology can help turn a confusing report into meaningful, actionable information. It can clarify what a diagnosis means, why specific treatments are recommended, and when it may be important to seek additional expertise.
It can also help patients ask better questions — about tumor type, grade, and next steps — and better understand the reasoning behind clinical decisions.

And behind every pathology report is a team of specialists looking closely and intentionally at the evidence — working to understand the biology of the disease as clearly as possible so that the next steps are as informed as possible.

Because understanding pathology isn’t just about learning the science.

It’s about turning confusion into clarity.
It’s about knowing what questions to ask.
And it’s about feeling more informed, more prepared, and more empowered in the moments that matter most.

This episode is designed to help bring that clarity — to better understand and demystify pathology, and to make the information behind a diagnosis more accessible, so patients and families can move forward with greater confidence.

NET specialists included in this episodeUse our episode infographics to get a visual picture of some of the things we have discussed.

Neil Renwick, MD, PhD, FRCPC
Assistant Professor, Department of Pathology & Molecular Medicine, Queen’s University
(SEAMO New Clinician-Scientist Program)

Nancy Joseph, MD, PhD
Professor of Surgical Pathology, University of California, San Francisco (UCSF)

Aman Chauhan, MD
University of California, San Francisco

Jerome Cros, MD, PhD,
Beaujon Hospital, Paris

A special thank you to Paige Corrente for sharing her neuroendocrine cancer journey. Download a transcript of this episode.

The post Episode 53: Understanding Pathology appeared first on NETRF.

Over the past several decades, neuroendocrine cancer diagnoses have increased significantly—raising an important question: Are these cancers becoming more common, or are we simply getting better at finding them? In this episode of NETWise, leading clinicians, researchers, and a patient share what the data—and real-world experience—reveal about this trend.

Drawing on insights from global experts and patient perspectives, this conversation explores how advances in imaging, pathology, and research are reshaping what we know about neuroendocrine cancer—and why earlier recognition is changing the landscape of care.

In this episode, you’ll hear about:

• Why diagnoses have risen dramatically in recent decades—and why improved detection explains much of the increase
• How modern imaging, screening, and updated classification systems are helping doctors identify tumors earlier and more accurately
• The environmental, biological, and social factors researchers are still working to understand
• Why many tumors are now discovered incidentally, before symptoms appear
• How earlier detection creates both new opportunities—and new questions—about screening and treatment decisions
• A patient’s personal story of diagnosis and how awareness can lead to earlier answers and better outcomes

As understanding grows, so does the ability to diagnose neuroendocrine cancer with greater precision—and to treat it more effectively. This episode brings clarity to what’s behind the rising numbers and what that progress means for patients and families today.

Whether you’re a patient, caregiver, clinician, or advocate, this episode offers clear, accessible insights into the breakthroughs driving research forward.

 

Please like, share, and subscribe. Your engagement helps us reach more patients and caregivers seeking reliable neuroendocrine cancer information—and supports NETRF’s mission to expand research, awareness, and hope across the NET community.

NET specialists included in this episodeUse our episode infographics to get a visual picture of some of the things we have discussed.

Ulrich-Frank Pape, MD
Gastroenterologist, Asklepios Klinik St. Georg, Hamburg, Germany

Arvind Dasari, MD
Gastrointestinal Medical Oncologist, MD Anderson Cancer Center

Neil Renwick, MD, PhD, FRCPC
Assistant Professor, Department of Pathology & Molecular Medicine, Queen’s University
(SEAMO New Clinician-Scientist Program)

Nancy Joseph, MD, PhD
Professor of Surgical Pathology, University of California, San Francisco (UCSF)

A special thank you to Jessica Ochoa for sharing her neuroendocrine cancer journey.

Download a transcript of this episode.

The post Episode 52: Why Is Neuroendocrine Cancer on the Rise? appeared first on NETRF.

Artificial intelligence (AI) has become a hot topic, making its way into everyday conversations and industries worldwide. While AI technologies have been around for years, recent advancements are accelerating their impact—especially in healthcare. From improving cancer research to enhancing diagnosis and treatment, AI is reshaping the future of medicine. In this episode of NETWise, we dive into how AI is driving progress in neuroendocrine cancer research and explore its potential applications in the clinic. Could AI revolutionize the way NETs are diagnosed and managed? Join us as we uncover the possibilities.

To access the NET Clinical Trial Finder mentioned in this episode: https://netrf.org/for-patients/trial-finder/

NET specialists included in this episodeUse our episode infographics to get a visual picture of some of the things we have discussed. https://netrf.org/specialist/aman-chauhan-md/

Danielle Ralic is the CEO/CTO and founder of Ancora.ai, a health tech company dedicated to accelerating innovation in medicine by democratizing clinical trial access. Her service uses AI to help neuroendocrine cancer patients find clinical trials.

https://www.pennmedicine.org/providers/profile/caroline-creamer

Matthieu Foll, PHD is a researcher at  the International Agency for Research and Cancer, part of the World Health Organization.

https://netrf.org/specialist/joseph-s-dillon-mb-bch-bao/

Emilie Mathian, PHD is a postdoctoral researcher at the International Agency for Research on Cancer (IARC-WHO)

https://netrf.org/specialist/dr-eric-liu-md/

Dr.  Aman Chauhan, MD, is a medical oncologist at the University of Miami Sylvester Comprehensive Cancer Center, where he leads the neuroendocrine oncology program and co-directs theranostic drug development.

Special Thank you A special thank you to Hector Perez for sharing his neuroendocrine cancer story. Click here to download a transcript of this episode.

The post NETWise Episode 43: How Could AI Change Neuroendocrine Cancer? appeared first on NETRF.

Happiness is something that can be difficult to find in life, no matter what. Having an uncommon cancer can make it infinitely harder. In this episode of NETWise, we’re going to talk about what happiness means, and how cancer can affect the way we think about it. We’ll also talk about the things we all can do to be more resilient. NET specialists included in this episodeUse our episode infographics to get a visual picture of some of the things we have discussed. https://netrf.org/specialist/aman-chauhan-md/

James A. Bibb, PhD is a researcher at the University of Arizona College of Health Sciences.   Dr. Bibb’s research focuses on basic and translational research exploring the molecular mechanisms of intracellular signal transduction in health and disease. His work on the regulation of dopamine neurotransmission was cited in the Nobel Prize in Physiology for Medicine in 2000. 

https://www.pennmedicine.org/providers/profile/caroline-creamer

Robin Lockridge, Ph.D. is a neuropsychologist at the National Cancer Institute at the National Institutes of Health with expertise in the clinical assessment of pediatric cognitive, neurodevelopmental, and neuropsychological disorders as well as children and youth program development. Dr. Lockridge works with the Adult Rare Tumor Network.  

https://netrf.org/specialist/joseph-s-dillon-mb-bch-bao/

Kevin Payne, Ph.D. is a social psychologist and is the founder of an organization,  Your Life Lived Well, LLC.,  dedicated to helping people thrive with the challenges of chronic illness.

https://netrf.org/specialist/dr-eric-liu-md/

Lori Wiener, Ph.D., DCSW, LCSW-C is a clinical social worker. She directs the psychosocial support and research program at the National Cancer Institute.

Thank you to Burt Rosen and Nancy Lewis for sharing their neuroendocrine cancer stories and personal perspectives. Click here to download a transcript of this episode.

The post NETWise Episode 42: Finding Happiness While Living with Neuroendocrine Cancer appeared first on NETRF.

As we turn the page on a new year, the neuroendocrine cancer community isn’t just reflecting on progress—we’re looking ahead. This episode of NETWise explores where the field is going next, and what that future means for patients, caregivers, and clinicians alike.

Recorded in connection with the 2025 NETRF Neuroendocrine Cancer Research Symposium, this conversation brings together researchers, physicians, patient advocates, and NETRF leaders to examine the momentum shaping the years ahead.

In this episode, you’ll hear about:

• How emerging therapies—from PRRT advances to immune-based and cell therapies—are changing care
• Why precision medicine, surface targeting, and biomarkers are defining the next era of research
• NETRF’s research roadmap, focused on early detection, improved treatments, and precision medicine.
• The growing role of patient education, self-advocacy, and “thrivership” in living well with NETs and Neuroendocrine Carcinoma
• How collaboration across institutions and disciplines is accelerating progress toward better outcomes

This isn’t just a vision of the future—it’s the work already underway, and the direction the field is moving next.

Whether you’re a patient, caregiver, clinician, or advocate, this episode offers clear, accessible insights into the breakthroughs that’s driving the research forward.

Please like, share, and subscribe. Your engagement helps us reach more patients and caregivers seeking reliable neuroendocrine cancer information—and supports NETRF’s mission to expand research, awareness, and hope across the NET community.

NET specialists included in this episodeUse our episode infographics to get a visual picture of some of the things we have discussed.

Po-Hien Ear, PhD
Assistant Professor of Surgery (Surgical Oncology & Endocrine Surgery), University of Iowa Carver College of Medicine

Martyn Caplin, MD, PhD, FRCP
Professor of Gastroenterology & Tumour Neuroendocrinology, Royal Free Hospital & University College London (UCL)

Carl Gay, MD, PhD
Assistant Professor, Department of Thoracic/Head & Neck Medical Oncology
Division of Cancer Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX

Pamela L. Kunz, MD
Director, Center for Gastrointestinal Cancers, Smilow Cancer Hospital & Yale Cancer Center
Chief, GI Medical Oncology, Yale School of Medicine

Neil Renwick, MD, PhD, FRCPC
Assistant Professor, Department of Pathology & Molecular Medicine, Queen’s University
(SEAMO New Clinician-Scientist Program)

Nancy Joseph, MD, PhD
Professor of Surgical Pathology, University of California, San Francisco (UCSF)

Iacovos Michael, PhD

Sunnybrook Research institute and University of Toronto

Elsa Hadj Bachir, PhD

Research Fellow in Medicine Dana-Farber Cancer Institute

Thank you to NETRF staff members Elyse Gellerman and Anna Greene, PhD, and NETRF Board Members Josh Mailman, and Todd Gillman for their contributions to this episode.

A special thank you to Jake Dawson and Nancy Lewis for sharing their neuroendocrine cancer journeys.

Download a transcript of this episode.

The post Episode 51: A New Year— Where We’re Going appeared first on NETRF.

Research has been at the heart of NETRF’s mission for 20 years—and patients are the
reason that work matters. Every study we fund is designed to move the field forward
and improve how people with neuroendocrine cancer live, feel, and are treated.
In this special episode of NETWise, we’re bringing the 2025 NETRF Neuroendocrine
Cancer Research Symposium directly to the patient and caregiver community. You’ll
hear from leading researchers and clinicians as they explain:

• What’s changed in neuroendocrine cancer research over the past year
• How new discoveries impact diagnosis, treatment, and everyday patient care
• Why NETRF’s 20 years of progress is shaping the future of NETs
• Where the field is headed next—scientifically and clinically

Whether you’re a patient, caregiver, clinician, or advocate, this Year-in-Review episode
offers clear, accessible insights into the breakthroughs driving NET research forward.
Please like, share, and subscribe. Your engagement helps us reach more patients and
caregivers seeking reliable neuroendocrine cancer information—and supports
NETRF’s mission to expand research, awareness, and hope across the NET
community.

NET specialists included in this episodeUse our episode infographics to get a visual picture of some of the things we have discussed. https://netrf.org/specialist/aman-chauhan-md/

Po-Hien Ear, PhD
Assistant Professor of Surgery (Surgical Oncology & Endocrine Surgery), University of Iowa Carver College of Medicine

https://www.pennmedicine.org/providers/profile/caroline-creamer

Martyn Caplin, MD, PhD, FRCP
Professor of Gastroenterology & Tumour Neuroendocrinology, Royal Free Hospital & University College London (UCL)

https://netrf.org/specialist/joseph-s-dillon-mb-bch-bao/

Carl Gay, MD, PhD
Assistant Professor, Department of Thoracic/Head & Neck Medical Oncology
Division of Cancer Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX

https://netrf.org/specialist/dr-eric-liu-md/

Pamela L. Kunz, MD
Director, Center for Gastrointestinal Cancers, Smilow Cancer Hospital & Yale Cancer Center
Chief, GI Medical Oncology, Yale School of Medicine

https://netrf.org/specialist/david-c-metz-md/

Neil Renwick, MD, PhD, FRCPC
Assistant Professor, Department of Pathology & Molecular Medicine, Queen’s University
(SEAMO New Clinician-Scientist Program)

https://netrf.org/specialist/dr-eric-nakakura-md/

Nancy Joseph, MD, PhD
Professor of Surgical Pathology, University of California, San Francisco (UCSF)

https://netrf.org/specialist/dr-michelle-kim-md/

Anassuya Ramachandran, PhD
Research Fellow at The University of Auckland

Thank you to NETRF staff members Elyse Gellerman and Anna Greene, PhD, and NETRF Board Members Josh Mailman, Todd Gillman, and Suzie Ludlow for their contributions to this episode.

A special thank you to Jake Dawson, Taylor Dawson and Nancy Lewis for sharing their neuroendocrine cancer journeys.

Click here to download a transcript of this episode.

The post NETWise Episode 50: The Year in Review 2025: Neuroendocrine Cancer Research and Clinical Progress appeared first on NETRF.

En este episodio de NETWise, continuamos centrándonos en el carcinoma neuroendocrino, una forma rara y agresiva de cáncer neuroendocrino. Si bien en el episodio anterior exploramos el diagnóstico y el tratamiento, este debate se centra en los desafíos únicos que enfrentan los cuidadores. Cuidar a una persona con carcinoma neuroendocrino puede ser increíblemente intenso debido a la rápida progresión del cáncer y las limitadas opciones de tratamiento. Este episodio destaca el impacto emocional y físico del cuidado y enfatiza la importancia vital del autocuidado para quienes apoyan a un ser querido en esta difícil etapa.

Reconocimientos profesionales: https://netrf.org/specialist/aman-chauhan-md/

Jodi Kolada, MA, es Directora de Extensión para Cuidadores y Educación para Miembros del Equipo No Clínico en Well-Spring Solutions en Greensboro, Carolina del Norte. Jodi cuenta con una amplia experiencia en educación y autocuidado para cuidadores.

https://www.pennmedicine.org/providers/profile/caroline-creamer

La Dra. Robin Lockridge, Ph.D., es neuropsicóloga en el Instituto Nacional del Cáncer de los Institutos Nacionales de la Salud. Trabaja frecuentemente con cuidadores.

Un sincero agradecimiento a Holly Jensen Corte y Shannon Page por compartir sus experiencias con el carcinoma neuroendocrino, y a Jean Carney y Susan Meckler Plummer por compartir sus experiencias de cuidado de carcinoma neuroendocrino. Click here to download a transcript of this episode.

The post NETWise Episodio 3: Cuidando al Cuidador del Carcinoma Neuroendocrino appeared first on NETRF.

En este episodio de NETWise, profundizamos en uno de los tipos más agresivos de cáncer neuroendocrino: el carcinoma neuroendocrino. Si bien muchos tumores neuroendocrinos son de crecimiento lento y controlables con el tiempo, el carcinoma neuroendocrino es diferente: se desarrolla rápidamente y requiere atención especializada inmediata. Le guiaremos a través de la información esencial sobre el el carcinoma neuroendocrino, incluyendo:

• Qué es el carcinoma neuroendocrino y en qué se diferencia de otros tumor neuroendocrino
• El proceso de diagnóstico: qué esperar y cómo los médicos identifican esta enfermedad
• Opciones de tratamiento actuales y qué deben saber los pacientes y cuidadores

Si usted o un ser querido ha recibido recientemente un diagnóstico de carcinoma neuroendocrino, este episodio está diseñado para ayudarle a comprender el camino a seguir.

Click here to download a transcript of this episode.

The post NETWise Episodio 2: Carcinoma Neuroendócrino 101 appeared first on NETRF.