NETWise – Details, episodes & analysis

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.

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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.

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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.