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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.
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.
NET specialists included in this episodeUse our episode infographics to get a visual picture of some of the things we have discussed.
A special thank you to Paige Corrente for sharing her neuroendocrine cancer journey.
Episode 52: Why Is Neuroendocrine Cancer on the Rise?
Friday, February 20, 2026 • Duration 30:02
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.
Episode 51: A New Year— Where We’re Going
Thursday, January 15, 2026 • Duration 27:07
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
NETWise Episode 50: The Year in Review 2025: Neuroendocrine Cancer Research and Clinical Progress
Monday, December 15, 2025 • Duration 35:34
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.
NETWise Episodio 3: Cuidando al Cuidador del Carcinoma Neuroendocrino
Thursday, September 18, 2025 • Duration 27:02
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.
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.
NETWise Episodio 2: Carcinoma Neuroendócrino 101
Thursday, August 14, 2025 • Duration 37:57
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.
NETWise Episode 47: Care for the Neuroendocrine Carcinoma Caregiver
Friday, June 20, 2025 • Duration 25:43
In this episode of NETWise, we continue our focus on neuroendocrine carcinoma, a rare and aggressive form of neuroendocrine cancer. While our previous episode explored diagnosis and treatment, this discussion centers on the unique challenges faced by caregivers. Caring for someone with neuroendocrine carcinoma can be incredibly intense due to the cancer’s rapid progression and limited treatment options. This episode highlights the emotional and physical toll of caregiving—and emphasizes the vital importance of self-care for those supporting a loved one through this difficult journey.
Jodi Kolada, MA, is the Director of Caregiver Outreach and Non-Clinical Team Member Education at Well-Spring Solutions in Greensboro, NC. Jodi has extensive work in caregiver education and caregiver self-care.
Dr. Robin Lockridge, Ph.D. is a neuropsychologist at the National Cancer Institute at the National Institutes of Health. She frequently works with caregivers.
A sincere thank you to Holly Jensen Corte and Shannon Page for sharing their neuroendocrine carcinoma experiences, and Jean Carney and Susan Meckler Plummer for sharing their neuroendocrine carcinoma caregiving experiences.
In this episode of NETWise, we’re diving into one of the more aggressive forms of neuroendocrine cancer: neuroendocrine carcinoma (NEC). While many neuroendocrine tumors are slow-growing and manageable over time, NEC is different—fast-moving and requiring swift, specialized care.
We’ll guide you through the essential information about NEC, including: What neuroendocrine carcinoma is and how it differs from other NETs
The diagnostic process: what to expect and how doctors identify this disease
Current treatment options and what patients and caregivers should know
If you or a loved one has recently received an NEC diagnosis, this episode is designed to help you start understanding the road ahead.
NETWise Episode 45: Managing the Financial Burden of Neuroendocrine Cancer
Monday, April 21, 2025 • Duration 29:37
This episode is part of a collaboration with the FlaNET Carcinoid Community, focusing on financial toxicity. We explore some of the major costs that can arise throughout the neuroendocrine cancer journey and share guidance on how to find helpful resources.
Joanna Doran, JD, is the CEO of Triage Cancer, a national nonprofit that provides free education on legal issues that may impact people diagnosed with cancer.
Mysti Motz, BNS, RN, is a nurse who previously worked at the University of Miami’s Sylvester Comprehensive Cancer Center, where she provided care and support to patients in the Neuroendocrine Cancer Program.
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.
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
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.
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.
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)
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.
Dr. Aman Chauhan, MD, is a medical oncologist at the Sylvester Comprehensive Cancer Center at the University of Miami, where he leads the neuroendocrine cancer program.
