NETWise

What Do We Know?

GLP-1 medications have transformed the treatment of diabetes and obesity, with millions of people now using drugs in this growing class. But for people living with neuroendocrine cancer, they raise an important question: Are GLP-1s safe for people with neuroendocrine cancer? The answer isn’t a simple yes or no.

In this episode of NETWise, we look at what researchers and clinicians know so far about GLP-1 medications and neuroendocrine tumors—and what we still don’t know. Some neuroendocrine tumors express the GLP-1 receptor targeted by these medications, but new research suggests that receptor expression varies considerably by tumor type. We also explore another important consideration for people with cancer: how the appetite suppression and weight loss associated with GLP-1s can affect nutrition, muscle mass, strength, and treatment.

Host Jessica Thomas, LCSW, Director of Patient Education at NETRF, speaks with:

• Dr. Amr Wahba, endocrinologist and Clinical Assistant Professor of Internal Medicine at University of Iowa Health Care
• Dr. Po Hien Ear, Associate Professor at Emory University School of Medicine and Winship Cancer Institute
• Dr. Udhayvir Grewal, GI/Neuroendocrine Medical Oncologist at Winship Cancer Institute of Emory University
• Meghan Laszlo, MS, RD, CSO, oncology dietitian and Clinical Nutrition Coordinator at Cedars-Sinai

Together, they discuss what current research tells us about GLP-1s and neuroendocrine cancer, how tumor type and disease status may factor into treatment decisions, nutrition and muscle loss, and why patients should make sure their oncologist knows if they are taking—or considering—a GLP-1 medication.

The science is still evolving. Rather than thinking of GLP-1s as simply “safe” or “unsafe” for people with neuroendocrine cancer, this episode offers context and questions patients can bring to their healthcare team. As researchers continue to learn more about how neuroendocrine cancers evolve, understanding these changes may help patients and caregivers make more informed decisions and better navigate the road ahead.

Learn more about neuroendocrine cancer research, education, and patient resources at NETRF.org.

#NETCancer #NeuroendocrineTumors #NETRF #NETWise #CancerPodcast #RareDisease #PatientEducation #NeuroendocrineCancer #CancerResearch #CancerAwareness

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
Hematology & Medical Oncology | Emory University School of Medicine Winship Cancer Institute

Dr. Amr Wahba, MD
Clinical Assistant Professor of Internal Medicine and Endocrinologist at University of Iowa Health Care

Meghan Laszlo, MS, RD, CSO
Clinical Nutrition Coordinator | Cedars-Sinai

Udhayvir Singh Grewal, MD
GI/Neuroendocrine Oncologist, Winship Cancer Institute at Emory University

Link to study: https://pubmed.ncbi.nlm.nih.gov/39665969/
GLP-1R agonist promotes proliferation of neuroendocrine neoplasm cells expressing GLP-1 receptors.

Practical considerations for the use of incretin mimetics in patients with neuroendocrine neoplasms: An expert consensus statement

Download a transcript of this episode.

The post EP 56: GLP-1s and Neuroendocrine Cancer: What Do We Know? appeared first on NETRF.

What Do We Know?

GLP-1 medications have transformed the treatment of diabetes and obesity, with millions of people now using drugs in this growing class. But for people living with neuroendocrine cancer, they raise an important question: Are GLP-1s safe for people with neuroendocrine cancer? The answer isn’t a simple yes or no.

In this episode of NETWise, we look at what researchers and clinicians know so far about GLP-1 medications and neuroendocrine tumors—and what we still don’t know. Some neuroendocrine tumors express the GLP-1 receptor targeted by these medications, but new research suggests that receptor expression varies considerably by tumor type. We also explore another important consideration for people with cancer: how the appetite suppression and weight loss associated with GLP-1s can affect nutrition, muscle mass, strength, and treatment.

Host Jessica Thomas, LCSW, Director of Patient Education at NETRF, speaks with:

• Dr. Amr Wahba, endocrinologist and Clinical Assistant Professor of Internal Medicine at University of Iowa Health Care
• Dr. Po Hien Ear, Associate Professor at Emory University School of Medicine and Winship Cancer Institute
• Dr. Udhayvir Grewal, GI/Neuroendocrine Medical Oncologist at Winship Cancer Institute of Emory University
• Meghan Laszlo, MS, RD, CSO, oncology dietitian and Clinical Nutrition Coordinator at Cedars-Sinai

Together, they discuss what current research tells us about GLP-1s and neuroendocrine cancer, how tumor type and disease status may factor into treatment decisions, nutrition and muscle loss, and why patients should make sure their oncologist knows if they are taking—or considering—a GLP-1 medication.

The science is still evolving. Rather than thinking of GLP-1s as simply “safe” or “unsafe” for people with neuroendocrine cancer, this episode offers context and questions patients can bring to their healthcare team. As researchers continue to learn more about how neuroendocrine cancers evolve, understanding these changes may help patients and caregivers make more informed decisions and better navigate the road ahead.

Learn more about neuroendocrine cancer research, education, and patient resources at NETRF.org.

#NETCancer #NeuroendocrineTumors #NETRF #NETWise #CancerPodcast #RareDisease #PatientEducation #NeuroendocrineCancer #CancerResearch #CancerAwareness

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
Hematology & Medical Oncology | Emory University School of Medicine Winship Cancer Institute

Dr. Amr Wahba, MD
Clinical Assistant Professor of Internal Medicine and Endocrinologist at University of Iowa Health Care

Meghan Laszlo, MS, RD, CSO
Clinical Nutrition Coordinator | Cedars-Sinai

Udhayvir Singh Grewal, MD
GI/Neuroendocrine Oncologist, Winship Cancer Institute at Emory University

Link to study: https://pubmed.ncbi.nlm.nih.gov/39665969/
GLP-1R agonist promotes proliferation of neuroendocrine neoplasm cells expressing GLP-1 receptors.

Practical considerations for the use of incretin mimetics in patients with neuroendocrine neoplasms: An expert consensus statement

Download a transcript of this episode.

The post EP 56: GLP-1s and Neuroendocrine Cancer: What Do We Know? appeared first on NETRF.

Understanding the Evolution of Neuroendocrine Cancer

In medicine, there’s an old saying: “When you hear hoofbeats, think horses, not zebras.” It’s a reminder to look for the most common explanation first. But for people living with neuroendocrine cancer… zebras matter. What happens when a slow-growing tumor begins behaving aggressively? When a diagnosis evolves over time? Or when the biology of a tumor no longer matches the original pathology report?

For people living with neuroendocrine cancer, these changes can be frightening. But understanding them may also open the door to better treatment decisions, more personalized care, and new directions in research.

In this episode of NETWise, we explore the evolving science of tumor heterogeneity, grade progression, and changing biology in neuroendocrine cancers — alongside the very human stories of living through those changes.

Leading experts inluding Dr. Aman Chauhan (UCSF), Dr. Nancy Joseph (UCSF), Dr. Mark Lewis (Intermountain Healthcare), and Dr. Jaydira Del Rivero (National Cancer Institute) discuss the latest research and clinical insights surrounding these important questions.

You’ll also hear powerful personal stories from Shari Schutz and Barbara Dunham, who share their experiences navigating changing diagnoses, evolving pathology, treatment transitions, and the importance of self-advocacy.

Topics discussed include:

• Why the zebra became the symbol of neuroendocrine cancer
• Tumor heterogeneity and why no two NETs are alike
• Grade progression and changing tumor biology
• NETs, NECs, and MiNENs explained
• The role of pathology review, re-biopsy, and advanced imaging
• DOTATATE PET and FDG PET scans
• Treatment adaptation and personalized care
• Patient advocacy, resilience, and living with uncertainty

As researchers continue to learn more about how neuroendocrine cancers evolve, understanding these changes may help patients and caregivers make more informed decisions and better navigate the road ahead.

Learn more about neuroendocrine cancer research, education, and patient resources at NETRF.org.

#NETCancer #NeuroendocrineTumors #NETRF #NETWise #CancerPodcast #RareDisease #PatientEducation #NeuroendocrineCancer #CancerResearch #CancerAwareness

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

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

Aman Chauhan, MD
University of California, San Francisco

Jaydira Del Rivero, MD
NET Specialist, National Cancer Institute (NCI)

Mark Lewis, MD
Director of Gastrointestinal Oncology, Intermountain Healthcare

A special thank you to Shari Schutz and Barbara Dunham for sharing their neuroendocrine cancer journey.

Download a transcript of this episode.

The post EP 55: Do Zebras Change Their Stripes? appeared first on NETRF.

When someone is diagnosed with cancer, one of the first questions is simple: What happens next? But for many, that question doesn’t come with a clear answer. Instead, it opens the door to something much harder to navigate—uncertainty.

In this episode of NETWise, host Jessica Thomas explores what it means to live in that space of the unknown. From the shock of diagnosis to the ongoing reality of treatment decisions, scan results, and everything in between, uncertainty becomes a constant companion for many people living with neuroendocrine cancer.

Through deeply personal stories and expert insight, this episode brings together the voices of patients, a caregiver, and a physician who is also a patient—each offering a different perspective on how to cope, adapt, and move forward without all the answers.
You’ll hear from:

• Jackie Dong, diagnosed at just 23, navigating recovery and redefining his outlook on life
• Dr. Mark Lewis, oncologist and patient, sharing the limits of statistics and the reality of lived experience
• Jennifer Rogers Anderson, who found peace by letting go of the need to know
• Jessica Ochoa, confronting the hardest question—how much time do I have?
• Gary Murfin, emphasizing the importance of self-advocacy and informed decision-making
• Jamie Metzl, a caregiver whose search for knowledge became deeply personal

Together, their stories reveal a powerful truth: uncertainty doesn’t just happen at diagnosis—it continues throughout the cancer journey. It shows up in treatment decisions, in waiting for scan results, in understanding the disease itself, and in imagining the future.

But while uncertainty may not go away, the way we relate to it can change.

This episode explores:

• The emotional impact of a cancer diagnosis and the shock that follows
• Why statistics and percentages don’t always translate to individual experience
• The balance between seeking information and avoiding overwhelm
• The reality of “scan-xiety” and living between results
• How routines, movement, and mindset can create stability
• The importance of self-advocacy and trusted information
• What it means to not just survive—but thrive—within uncertainty

At its core, this conversation is about learning how to live alongside uncertainty—not by eliminating it, but by finding ways to stay grounded, present, and connected to what matters most.

Because while the future may not always be clear… the way we show up for each day still is.

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

Mark Lewis, MD,
Director of Gastrointestinal Oncology, Intermountain Healthcare

A special thank you to Jackie Dong, Jennifer Rogers Anderson, Jamie Metzl, Jessica Ochoa, Gary Murfin, Dr. Mark Lewis, for sharing her neuroendocrine cancer journey.

Download a transcript of this episode.

The post Episode 54: Sitting With Uncertainty 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.

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.

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)

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:

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.

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.