NETWise

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 careWhy precision medicine, surface targeting, and biomarkers are defining the next era of researchNETRF’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 CarcinomaHow collaboration across institutions and disciplines is accelerating progress toward better outcomesThis 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, PhDAssistant Professor of Surgery (Surgical Oncology & Endocrine Surgery), University of Iowa Carver College of Medicine Martyn Caplin, MD, PhD, FRCPProfessor of Gastroenterology & Tumour Neuroendocrinology, Royal Free Hospital & University College London (UCL) Carl Gay, MD, PhDAssistant Professor, Department of Thoracic/Head & Neck Medical OncologyDivision of Cancer Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX Pamela L. Kunz, MDDirector, Center for Gastrointestinal Cancers, Smilow Cancer Hospital & Yale Cancer CenterChief, GI Medical Oncology, Yale School of Medicine Neil Renwick, MD, PhD, FRCPCAssistant Professor, Department of Pathology & Molecular Medicine, Queen’s University(SEAMO New Clinician-Scientist Program) Nancy Joseph, MD, PhDProfessor of Surgical Pathology, University of California, San Francisco (UCSF) Iacovos Michael, PhDSunnybrook Research institute and University of Toronto Elsa Hadj Bachir, PhDResearch 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 thereason that work matters. Every study we fund is designed to move the field forwardand improve how people with neuroendocrine cancer live, feel, and are treated.In this special episode of NETWise, we’re bringing the 2025 NETRF NeuroendocrineCancer Research Symposium directly to the patient and caregiver community. You’llhear 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 patient careWhy NETRF’s 20 years of progress is shaping the future of NETsWhere the field is headed next—scientifically and clinicallyWhether you’re a patient, caregiver, clinician, or advocate, this Year-in-Review episodeoffers clear, accessible insights into the breakthroughs driving NET research forward.Please like, share, and subscribe. Your engagement helps us reach more patients andcaregivers seeking reliable neuroendocrine cancer information—and supportsNETRF’s mission to expand research, awareness, and hope across the NETcommunity. 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, PhDAssistant Professor of Surgery (Surgical Oncology & Endocrine Surgery), University of Iowa Carver College of Medicine Martyn Caplin, MD, PhD, FRCPProfessor of Gastroenterology & Tumour Neuroendocrinology, Royal Free Hospital & University College London (UCL) Carl Gay, MD, PhDAssistant Professor, Department of Thoracic/Head & Neck Medical OncologyDivision of Cancer Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX Pamela L. Kunz, MDDirector, Center for Gastrointestinal Cancers, Smilow Cancer Hospital & Yale Cancer CenterChief, GI Medical Oncology, Yale School of Medicine Neil Renwick, MD, PhD, FRCPCAssistant Professor, Department of Pathology & Molecular Medicine, Queen’s University(SEAMO New Clinician-Scientist Program) Nancy Joseph, MD, PhDProfessor of Surgical Pathology, University of California, San Francisco (UCSF) Anassuya Ramachandran, PhDResearch 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 neuroendocrinoEl proceso de diagnóstico: qué esperar y cómo los médicos identifican esta enfermedadOpciones de tratamiento actuales y qué deben saber los pacientes y cuidadoresSi 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.

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:https://www.thehealingnet.org/high-grade-neuroendocrinehttps://www.helpforcancercaregivers.orgHigh Grade Neuroendocrine Carcinoma Group Professional acknowledgements: 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. Click here to download a transcript of this episode. The post NETWise Episode 47: Care for the Neuroendocrine Carcinoma Caregiver appeared first on NETRF.

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 recently received an NEC diagnosis, this episode is designed to help you start understanding the road ahead. Resources https://www.thehealingnet.org/high-grade-neuroendocrineHigh Grade Neuroendocrine Carcinoma Group  Acknowledgements Dr. Carl Gay, MD, PhD, is a thoracic medical oncologist and research scientist at the University of Texas MD Anderson Cancer Center. 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. Dr. Renuka Iyer is a medical oncologist at Roswell Park Comprehensive Cancer Center in Buffalo, New York. Susan Meckler Plummer, RN, runs an online support group for patients with neuroendocrine carcinoma. Patient Acknowledgements A special thank you to Deb Roberston and Lori Dolnick for sharing their stories. Click here to download a transcript of this episode. The post NETWise Episode 46: Understanding Neuroendocrine Carcinoma appeared first on NETRF.

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 worked at the University of Miami’s Sylvester Comprehensive Cancer Center, where she provided care and support to patients in the Neuroendocrine Cancer Program. Samantha Powell, LCSW, is a social worker licensed in Utah and Iowa who has worked with neuroendocrine cancer patients. Sasha Watson, Pharm.D.,is a clinical pharmacist at the University of Miami Sylvester Comprehensive Cancer Center. Thank you to Matt Skinner for sharing his neuroendocrine cancer journey.Additional Resources: Thank you to Triage Cancer for sharing the following resources:Practical Guide to Cancer Rights: https://triagecancer.org/guideCancer Finances: https://triagecancer.org/cancer-financesFree medical flights:https://www.angelflight.com/https://angelflightwest.org/angel-flight-services/https://www.mercymedical.org/free-medical-flightshttps://skyhope.org/Cancer and Careers: https://www.cancerandcareers.org/enFor veterans diagnosed with cancer: https://www.cancercare.org/publications/340-building_connections_as_a_veteran_resources_and_supportAmerican Cancer Society:https://www.cancer.org/cancer/financial-insurance-matters/managing-health-insurance/programs-and-resources-to-help-with-cancer-related-expenses.htmlHope Lodge Housing Information: https://www.cancer.org/support-programs-and-services/patient-lodging/hope-lodge.htmlNancy’s list: https://nancyslist.org/financial-assistance/Cancer Care: https://www.cancercare.org/financial_assistance Click here to download a transcript of this episode. The post NETWise Episode 45: Managing the Financial Burden of Neuroendocrine Cancer appeared first on NETRF.

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 visual picture of some of the things we have discussed. Beth Chasen, MD, is a Professor, Department of Nuclear Medicine, Division of Diagnostic Imaging, The University of Texas MD Anderson Cancer Center, Houston, TX Victor Fernandes, PHD is a researcher at the University of Wisconsin Madison and a medical physicist by training, I work with radiopharmaceutical therapies and with neuroendocrine tumor patients and patient data. Victor was awarded a research grant by NANETS funded through NETFRF that focuses on Modeling to predict the benefit of PRRT in NET patients. Heather Jacene, MD, is a Clinical Director, Nuclear Medicine/PET-CTAssociate Program Director at Brigham and Women’s Joint Program in Nuclear Medicine. In addition, she is an Associate Professor of Radiology Harvard Medical School Click here to download a transcript of this episode. The post NETWise Episode 44: Radiopharmaceutical Treatment – FAQs & Insights appeared first on NETRF.

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 the possibilities.To access the NET Clinical Trial Finder mentioned in this episode: https://netrf.org/for-patients/trial-finder/ NET specialists included in this episodeUse our episode infographics to get a visual picture of some of the things we have discussed. Danielle Ralic is the CEO/CTO and founder of Ancora.ai, a health tech company dedicated to accelerating innovation in medicine by democratizing clinical trial access. Her service uses AI to help neuroendocrine cancer patients find clinical trials. Matthieu Foll, PHD is a researcher at  the International Agency for Research and Cancer, part of the World Health Organization. Emilie Mathian, PHD is a postdoctoral researcher at the International Agency for Research on Cancer (IARC-WHO) Dr.  Aman Chauhan, MD, is a medical oncologist at the University of Miami Sylvester Comprehensive Cancer Center, where he leads the neuroendocrine oncology program and co-directs theranostic drug development. Special Thank you A special thank you to Hector Perez for sharing his neuroendocrine cancer story. Click here to download a transcript of this episode. The post NETWise Episode 43: How Could AI Change Neuroendocrine Cancer? appeared first on NETRF.

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 translational research exploring the molecular mechanisms of intracellular signal transduction in health and disease. His work on the regulation of dopamine neurotransmission was cited in the Nobel Prize in Physiology for Medicine in 2000.  Robin Lockridge, Ph.D. is a neuropsychologist at the National Cancer Institute at the National Institutes of Health with expertise in the clinical assessment of pediatric cognitive, neurodevelopmental, and neuropsychological disorders as well as children and youth program development. Dr. Lockridge works with the Adult Rare Tumor Network.   Kevin Payne, Ph.D. is a social psychologist and is the founder of an organization,  Your Life Lived Well, LLC.,  dedicated to helping people thrive with the challenges of chronic illness. Lori Wiener, Ph.D., DCSW, LCSW-C is a clinical social worker. She directs the psychosocial support and research program at the National Cancer Institute. Thank you to Burt Rosen and Nancy Lewis for sharing their neuroendocrine cancer stories and personal perspectives. Click here to download a transcript of this episode. The post NETWise Episode 42: Finding Happiness While Living with Neuroendocrine Cancer 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 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 41: 2024 Year in Review appeared first on NETRF.

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, passed away. We appreciate that he shared his story with us. NET specialists included in this episodeUse our episode infographics to get a visual picture of some of the things we have discussed. Aman Chauhan, MD Medical Oncology, University of Kentucky, Lexington, KY Caroline Creamer, PA-C Gastroenterology, University of Pennsylvania, Philadelphia, PA Joseph Dillon, MD Endocrinology, University of Iowa Health Care, Iowa City, IA Eric Liu, MD Surgery, Rocky Mountain Cancer Centers, Denver, CO David Metz, MD Gastroenterology, University of Pennsylvania, Philadelphia, PA Eric Nakakura, MD, PhD Surgery, University of California, San Francisco, CA Michelle Kang-Kim, MD Gastroenterology, Mount Sinai Hospital, NY, NY Heloisa Soares, MD, PhD Medical Oncology, Huntsman Cancer Institute, Salt Lake City, UT Edward Wolin, MD Medical Oncology, Mount Sinai Hospital, NY, NY Click here to download a transcript of this episode. The post NETWise Episode 40: Managing Symptoms of NENs—Updated Episode appeared first on NETRF.

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-Doctoral Researcher, Moffitt Cancer Center Dr. Mauro Cives, MD, Senior Assistant Professor of Medical Oncology in the Department of Interdisciplinary Medicine of the University of Bari A special thank you to NETRF board member and NET caregiver, Laurie Littlepage, PhD, for sharing her story. Click here to download a transcript of this episode. The post NETWise Episode 39: What Could Immunotherapy Mean for NENs? appeared first on NETRF.

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. Download PDF 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. Download PDF 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 QuizLos 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 CenterOrder a Patient GuideFind a NET SpecialistNETRF YouTube Channel The post NETWise 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 BennettNurse Coordinator for the Neuroendocrine Tumor programUniversity of Pennsylvania   Dr. Lauren FishbeinEndocrinologistUCHealth and the University of Colorado School of Medicine   Samantha GreenbergGenetic Counselor and Paraganglioma Clinic ManagerHuntsman Cancer Institute    Dr. Joseph DillonEndocrinologistUniversity of Iowa   Dr. Erik MittraChief of Nuclear Medicine and Molecular ImagingOregon Health and Science University   Dr. Nancy PerrierHead of Surgical EndocrinologyMD Anderson Cancer CenterDr. Nancy SharmaMedical OncologistSwedish 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.