NETWise

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.

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?

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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 Episode 1: What You Need to Know About NETs & NECs – Updated Episode 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.

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.

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

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.