Episodes
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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
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 insig
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 patholo
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 l
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 th
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 yearHow new discoveries impact diagnosis, treatment, and everyday
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 queri
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 neuroendocrinoEl proceso de diagnóstico: qué esperar y cómo los médicos identifican esta
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. Resources
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 NETsThe diagnostic process: what to expect and how doctors identify this diseaseCurrent treatment options and what patients and caregivers should know If you or a loved one has recentl
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. NET specialists included in this episodeUse our episode infographics to get a visual picture of some of the things we have discussed. 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 wor
When it comes to PRRT (Peptide Receptor Radionuclide Therapy), patients often have big questions and concerns. In this episode, we dive into the most common questions surrounding PRRT and the broader field of radiopharmaceutical treatments for neuroendocrine cancer. This is an exciting field as there is much more research being done into radiopharmaceuticals for neuroendocrine cancer. Tune in as we break down key insights from doctors and researchers to help you better understand this important treatment option. NET specialists included in this episodeUse our episode infographics to get a visu
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 th
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. James A. Bibb, PhD is a researcher at the University of Arizona College of Health Sciences. Dr. Bibb’s research focuses on basic and
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
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,
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
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 S
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
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, ho
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 on
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 p
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 av
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 technolog
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 H
