Educational Events < Back to Topics Play Video Play Video 01:34:59 Just Diagnosed With Neuroendocrine Cancer? What to Know and Understand • 2026 NCF Event • Apr 23, 26 ABOUT Being newly diagnosed with neuroendocrine cancer (NETs) can feel overwhelming. Many patients find themselves asking, “What exactly is neuroendocrine cancer, and how is it different from other cancers?” This webinar is designed to bring clarity, reassurance, and guidance during one of the most confusing stages of the NET journey. Join Dr. Osama MoSalem, medical oncologist at St. Luke’s in Kansas City, for a clear and compassionate overview of what every newly diagnosed NET patient should know. Dr. MoSalem explains what neuroendocrine cancer is, why it behaves differently from more common cancers, and how its unique features influence diagnosis and treatment. This session walks you through the most important early concepts, including: - Grade and stage: what they mean and why they matter - Key tests and scans used at diagnosis - Treatment pathways, including when to consider surgery, medications, targeted therapies, radioligand therapy, or clinical trials - Essential questions to ask your care team - Practical first steps to help you feel more prepared and empowered Whether you’re newly diagnosed, supporting a loved one, or simply trying to better understand this disease, this webinar provides a solid foundation to help you make informed decisions with greater clarity and confidence. Visit the event page at https://www.ncf.net/events/apr2026 Play Video Play Video 01:33:06 Novel Targeted Therapies in Neuroendocrine Cancers • 2026 NCF Event • Mar 9, 2026 Some Topics Covered: Neuroendocrine, NET, NEC, High-grade Clinical trials, PRRT, RLT, Antibody Drug Conjugate (ADC), DLL3 ABOUT Learn from a discussion of targeted therapies in neuroendocrine cancer, one of the fastest-growing areas of NET treatment. Unlike traditional chemotherapy, targeted therapies focus on specific pathways or features of cancer cells. Understanding how these treatments work can help patients feel more confident and informed when discussing options with their care team. In this session, Dr. Rohit Thummalapalli, medical oncologist at Memorial Sloan Kettering Cancer Center, explores novel, innovative targeted treatments used or being studied in NETs, such as DLL3 and antibody–drug conjugates (ADCs). Dr. Thummalapalli will explain what these therapies are, how they work, and why they are becoming increasingly important in NET care. Whether you’re newly diagnosed or considering later-line treatments, this webinar will help you better understand the evolving landscape of targeted therapy and what it may mean for your care. Visit the event page at https://www.ncf.net/events/mar2026 Play Video Play Video 01:29:26 The Latest in Neuroendocrine Cancer Clinical Trials • 2026 NCF Event • Feb 20, 2026 Topics Covered: Neuroendocrine, NET, clinical trials, PRRT, RLT, neoadjuvant trials, adjuvant trials, metastatic NET, symptom control ABOUT Join us for an overview of the latest clinical trials in neuroendocrine cancer with Dr. Heloisa Soares, a medical oncologist and physician-scientist at the Huntsman Cancer Institute (HCI) in Salt Lake City. Dr. Soares will walk through key neuroendocrine cancer clinical trials including what they are studying, what makes them exciting, and how they may shape future treatment options. She will also explain why clinical trials matter, how they benefit patients, and what to consider when exploring whether a trial might be right for you. Whether you’re a patient, caregiver, or simply trying to stay informed, this webinar will provide clear, practical insights to help you better understand emerging research and what it means for the neuroendocrine cancer community. The presentation focuses on current NET clinical trials. For information on NEC clinical trials, go to our high grade resources page: https://www.ncf.net/high-grade-nen-resources. Visit the event page at https://www.ncf.net/events/feb2026 Play Video Play Video 01:31:30 The Latest on Immunotherapy for Neuroendocrine Cancer • 2025 NCF Event • Dec 11, 2025 Immunotherapy is an exciting and rapidly advancing area in the treatment of neuroendocrine cancer. Join Dr. Aman Chauhan, Medical Oncologist at the University of Miami Sylvester Cancer Center, as he discusses the latest developments in immunotherapy for neuroendocrine cancer. This webinar will cover current standard-of-care treatments as well as cutting-edge clinical trials involving DLL3-targeted therapies, oncolytic viruses, CAR T-cell therapy, and combination approaches. Whether you’re newly diagnosed or exploring new treatment options, this session will help you better understand the evolving landscape of immunotherapy in neuroendocrine cancer. Aman Chauhan, MD Medical Oncologist University of Miami Sylvester Cancer Center Aman Chauhan, MD, earned his medical degree from the Kasturba Medical College in Manipal, Karnataka, India, followed by a dual residency in internal medicine and pediatrics at Louisiana State University in New Orleans. Dr. Chauhan completed his fellowship in hematology and oncology at the University of Kentucky, especially focusing on neuroendocrine tumor (NETs). Additionally, Dr. Chauhan completed a Cancer Therapy Evaluation Program (CTEP) physician externship at the National Cancer Institute (NCI) that focused on designing clinical trials and clinical research projects. His clinical interests include treating NETs, including carcinoid tumors, high-grade neuroendocrine carcinomas, and small and large cell neuroendocrine carcinoma. Dr Chauhan leads the University of Miami Neuroendocrine Cancer Program and co-leads Sylvester Theranostics Drug Development Program. He is the national principal investigator on several investigator-initiated neuroendocrine cancer clinical trials. He has authored over 70 scientific publications and book chapters and has received a career development award from NCI CTEP. Dr Chauhan also serves on AJCC and ASCO NET guideline committees and is an active member of NANETS communication committee. Dr. Chauhan is board certified in internal medicine and medical oncology. He is a member of the American Society of Clinical Oncology as well as the American Association of Cancer Research and the North American Neuroendocrine Tumor Society. Visit https://www.ncf.net/events/dec2025 for more information. Play Video Play Video 01:27:39 Understanding Alpha & The Evolving PRRT Landscape • Dr. Grewal • 2025 NCF Event • September 22, 2025 The field of PRRT (Peptide Receptor Radionuclide Therapy) is evolving rapidly, and patients are hearing more about new developments like alpha therapies, the recent NETTER-2 and COMPETE trial results, and other advances. Join medical oncologist Dr. Udhayvir Singh Grewal from the Winship Cancer Institute of Emory University as he breaks down what these changes mean for people living with neuroendocrine cancer. This webinar will help patients and caregivers make sense of emerging research and therapies—and what they may mean for the future of NET treatment. For more information, visit https://www.ncf.net/events/sep2025. Play Video Play Video 01:25:23 Nutrition & Diet Considerations for NETs • 2025 NCF Event • August 26, 2025 Nutrition can play a key role in living well with neuroendocrine cancer (neuroendocrine tumors or NETs). Join NET dietitian Meghan Laszlo for an informative session on nutrition and diet considerations for people living with neuroendocrine cancer. She will cover key topics including the use of pancreatic enzymes, managing hyperglycemia, navigating special diets, and understanding supplements. Whether you're newly diagnosed or further along in your journey, this webinar offers practical guidance to help you make informed nutrition choices that support your health and quality of life. For more information, visit ncf.net. Play Video Play Video 01:16:25 Living with NET: The Patient Perspective • 2025 NCF Event • July 10, 2025 Patients share their experiences on topics, including decision-making, coping strategies, lessons learned, challenges, and navigating relationships while living with neuroendocrine cancer. Hear about their personal journeys—filled with resilience, realities, and hope, that offer powerful insight into what it's like living with neuroendocrine cancer. Visit NCF.net/July2025 for more information. Play Video Play Video 01:33:27 "Evolving Management of Carcinoid Heart Disease" • Prashanth Venkatesh, MD, FACC • April 29, 2025 Learn from Cardiologist and Congenital Heart Disease Specialist, Dr. Prashanth Venkatesh from Cedars-Sinai Smidt Heart Institute in a virtual educational event on carcinoid heart disease. Dr. Venkatesh demystifies the topic and shares the latest developments in its diagnosis and treatment, including a novel minimally invasive approach to replace heart valves damaged by carcinoid heart disease. For more information and resources, visit NCF.net. Play Video Play Video 01:30:51 "Understanding Treatments for NETs and Rationale for Sequencing of Therapy" • Dr. Wolin • Apr 1, 25 Learn from internationally-renowned neuroendocrine cancer expert Dr. Edward Wolin in a discussion on the latest in neuroendocrine tumor treatments and understanding how to sequence them. Dr. Wolin has pioneered many of the NET treatments including somatostatin analogues (SSAs, sandostatin and octreotide), mTOR inhibitors (i.e. everolimus), anti-angiogenic drugs (i.e. cabozantinib), and peptide receptor radiotherapy (PRRT, i.e. Lutathera). Join us for an insightful presentation and live question and answer session. Learn more at https://www.ncf.net/events/apr2025 Play Video Play Video 01:49:57 "PRRT Nurse's Perspective: What to Expect with PRRT" • Linda Gardner, MSN, RN, VA-BC • Mar 7, 2025 Learn about PRRT from UCLA's Lead PRRT Nurse Linda Gardner. She addresses common questions about what to expect before, during, and after the treatment, as well as concerns about radiation safety. Learn more at https://www.ncf.net/events/mar2025 Play Video Play Video 01:28:12 "Deciphering Genetics & Genomics in Neuroendocrine Cancers" • Dr. Perez • Feb 7, 25 Learn the latest in genetics and genomics for neuroendocrine cancers from medical oncologist Dr. Kimberly Perez from Dana Farber Cancer Institute (DFCI) in Boston, Massachusetts. Dr. Perez has expertise in hereditary cancer syndromes and deciphers the topics of genetics and genomics. Learn more at LACNETS.org. Play Video Play Video 01:33:06 "Understanding GI NETs Found on Endoscopy: Gastric, Duodenal, Colon & Rectal" • Dr. Metz •Jan 28, 25 Learn from renowned Neuroendocrinologist Dr. David Metz, who discusses neuroendocrine tumors (NETs) found on endoscopy, including gastric, duodenal, colon and rectal NETs. Dr. Metz discusses which NETs can be found on endoscopies and how they are managed and treated. For more information, visit LACNETS.org. Play Video Play Video 01:28:05 "Large Cell Neuroendocrine Carcinoma & Small Cell Lung Cancer" • Session B • LACNETS • Dec 10, 2024 This is a 2-session comprehensive guide to lung neuroendocrine cancers. Session A covers Typical Carcinoids and Atypical Carcinoids. Watch Session A here: https://youtu.be/owZRDf3ISM4 Session B covers Large Cell Neuroendocrine Carcinoma and Small Cell Lung Cancer. ABOUT AMAN CHAUHAN, M.D. Aman Chauhan, MD, earned his medical degree from the Kasturba Medical College in Manipal, Karnataka, India, followed by a dual residency in internal medicine and pediatrics at Louisiana State University in New Orleans. Dr. Chauhan completed his fellowship in hematology and oncology at the University of Kentucky, especially focusing on neuroendocrine tumor (NETs). Additionally, Dr. Chauhan completed a Cancer Therapy Evaluation Program (CTEP) physician externship at the National Cancer institute (NCI) that focused on designing clinical trials and clinical research projects. His clinical interests include treating NETs, including carcinoid tumors, high-grade neuroendocrine carcinomas, and small and large cell neuroendocrine carcinoma. Dr Chauhan leads the University of Miami Neuroendocrine Cancer Program and co-leads Sylvester Theranostics Drug Development Program. He is national principal investigator on several investigator initiated neuroendocrine cancer clinical trials. He has authored over 70 scientific publications and book chapters and has received a career development award from NCI CTEP. Dr Chauhan also serves on AJCC and ASCO NET guideline committees and is an active member of NANETS communication committee. Dr. Chauhan is board certified in internal medicine and medical oncology. He is a member of the American Society of Clinical Oncology as well as the American Association of Cancer Research and the North American Neuroendocrine Tumor Society. For more information, visit LACNETS.org. Play Video Play Video 01:33:36 "Typical Carcinoid & Atypical Carcinoid" • Session A • LACNETS Event • Dec 10, 2024 This is a 2-session comprehensive guide to lung neuroendocrine cancers. Session A covers Typical Carcinoids and Atypical Carcinoids. Session B covers Large Cell Neuroendocrine Carcinoma and Small Cell Lung Cancer. Watch Session B here: https://youtu.be/LxXdXMKpaCo ABOUT AMAN CHAUHAN, M.D. Aman Chauhan, MD, earned his medical degree from the Kasturba Medical College in Manipal, Karnataka, India, followed by a dual residency in internal medicine and pediatrics at Louisiana State University in New Orleans. Dr. Chauhan completed his fellowship in hematology and oncology at the University of Kentucky, especially focusing on neuroendocrine tumor (NETs). Additionally, Dr. Chauhan completed a Cancer Therapy Evaluation Program (CTEP) physician externship at the National Cancer institute (NCI) that focused on designing clinical trials and clinical research projects. His clinical interests include treating NETs, including carcinoid tumors, high-grade neuroendocrine carcinomas, and small and large cell neuroendocrine carcinoma. Dr Chauhan leads the University of Miami Neuroendocrine Cancer Program and co-leads Sylvester Theranostics Drug Development Program. He is national principal investigator on several investigator initiated neuroendocrine cancer clinical trials. He has authored over 70 scientific publications and book chapters and has received a career development award from NCI CTEP. Dr Chauhan also serves on AJCC and ASCO NET guideline committees and is an active member of NANETS communication committee. Dr. Chauhan is board certified in internal medicine and medical oncology. He is a member of the American Society of Clinical Oncology as well as the American Association of Cancer Research and the North American Neuroendocrine Tumor Society. For more information, visit LACNETS.org. Play Video Play Video 01:26:11 "Palliative Care for Neuroendocrine Cancer" Dr. Chandana Banerjee • 2024 #LACNETS Educational Event Learn about Palliative Care: what it is, what it is not, and how it may help those affected by neuroendocrine cancer. Dr. Chandana Banerjee, a palliative care and hospice specialist from the City of Hope Cancer Center in Los Angeles, demystifies these topics. Visit LACNETS.org for more information. Play Video Play Video 01:35:06 "Evolving Management of NET Liver Metastases" Dr. Gagandeep Singh • 2024 #LACNETS Educational Event Join us to hear renowned liver and pancreas surgeon Dr. Gagandeep “Gaugs” Singh discuss the evolving algorithms in the management of NET liver metastases. Dr. Singh, Chief of Surgical Oncology at City of Hope® Cancer Center in Phoenix, asks the question of whether it is prudent to be aggressive surgically or if it is all about timing and strategy. For more information, visit LACNETS.org. Play Video Play Video 01:27:16 "2024 Updates on Clinical Trials in Neuroendocrine Tumors" • 2024 LACNETS Event • April 25, 2024 Join us to learn about the latest in clinical trials for neuroendocrine tumors with NET expert Dr. Heloisa Soares, a medical oncologist at the Huntsman Cancer Institute (HCI) at the University of Utah. For more information about Clinical Trials, visit https://www.lacnets.org/clinical-trials. For more information, visit LACNETS.org. Play Video Play Video 01:18:47 "TKIs: Tyrosine Kinase Inhibitors & Neuroendocrine Tumors" • 2024 LACNETS Event • March 29, 2024 Learn about Tyrosine Kinase Inhibitors (TKIs), what they are and how they work with NET expert Dr. Jennifer Chan. Dr. Chan is the Vice President of the North American Neuroendocrine Tumor Society (NANETS) and the principal investigator of the CABINET trial. Hear the positive findings from that TKI study using Cabozantinib. She will discuss the latest in TKI treatments and how they may be a possible treatment option for many NET patients. For more information, visit lacnets.org. Play Video Play Video 01:29:36 "Carcinoid Heart Disease" • 2024 LACNETS Event • Feb 14, 2024 Learn about Carcinoid Heart Disease from Cardiologist Dr. S. Allen Luis, at the Mayo Clinic in Rochester, MN. He will describe the cause and symptoms of carcinoid heart disease and discuss diagnosis, treatment and surveillance. Visit LACNETS.org for more information. Play Video Play Video 01:12:47 "PRRT: What We Know, Special Considerations & Clinical Trials" with Dr. Strosberg • Jan 11, 2024 Learn the latest on PRRT with NET expert Dr. Jonathan Strosberg. Dr Strosberg was the principal investigator of the NETTER-1 study which led to the FDA approval of Lutathera and has authored numerous articles on PRRT. He will discuss the latest in PRRT, including special considerations and current clinical trials. Visit LACNETS.org for more information. Play Video Play Video 01:19:51 "Minimally Invasive Treatments for Neuroendocrine Liver Metastases" • Dr. Yilun Koethe • Dec 9, 2023 "Minimally Invasive Treatments for Neuroendocrine Liver Metastases" with Dr. Yilun Koethe, Interventional Radiologist, TRG Imaging. Learn more about minimally invasive liver directed therapies targeting liver metastases with interventional radiologist Dr. Koethe. She discusses ablations including the recently approved histotripsy and embolizations including bland, chemo and radioembolization. ~ Visit LACNETS.org for more information. Play Video Play Video 01:33:48 LACNETS • "Symptom Management" with Dr. David Metz • Oct 2023 Join LACNETS to hear Neuroendocrinologist, Dr. David Metz from University of Pennsylvania discuss symptom management. The presentation will cover carcinoid syndrome, pancreatic enzymes, bile acid secretion, and short bowel syndrome. He will explain current treatments, supplements, and diets that might be helpful to control NET-related symptoms. For more information, visit LACNETS.org. Play Video Play Video 01:30:11 LACNETS • "Navigating Clinical Trials: Expectations vs. Realities" with Taymeyah Al-Toubah •Aug 2023 Join LACNETS to hear Taymeyah Al-Toubah, MPH, Senior Research Project Manager at the Neuroendocrine Tumor Program of Moffitt Cancer Center. About Our Speaker: Taymeyah Al-Toubah, MPH Senior Research Project Manager Neuroendocrine Tumor Program at Moffitt Cancer Center, Tampa, FL Taymeyah Al-Toubah is a clinical researcher, currently at Moffitt Cancer Center, who has been in the research field for 10 years. She began her career in 2013 while obtaining her bachelor’s degrees in biomedical sciences and psychology, working in pediatric and neonatal research at Johns Hopkins All Children’s Hospital. In 2016, she shifted her career focus to oncology, beginning with phase I trials and working in all solid tumors. She completed her Master of Public Health in Epidemiology in 2017 and focused her graduate thesis on neuroendocrine tumors. In 2018, she switched departments to focus exclusively on NETs. From 2018 – 2023, she was the primary NET coordinator in the GI department, managing all clinical trials while leading the GI team, managing the NET clinic coordination amongst the ancillary departments, and working on all retrospective and non-interventional NET research. She has worked on protocol development, database analysis, and manuscript writing, resulting in over 30 published manuscripts and presented her research at several national and international oncology and NET conferences, with oral abstracts at several ENETS and NANETS conferences. In April 2023, she formally transitioned to a new position as a project manager of the NET program, where she will continue to mentor new coordinators while working on protocol development and writing, manuscript writing, non-interventional clinical trials, and retrospective NET research. One of her first major projects will be to curate and develop a master database of all NET patients seen at her institution that will provide the basis for all future NET research to be published at Moffitt. She is currently on the board of one of the first NET patient advocacy groups in Florida (FLaNET Carcinoid Community), which kicked off alongside the Tampa Regional NANETS meeting in November 2022. She is an active member of NANETS on the Continuing Education and Symposium Planning committees. She plans to dedicate the remainder of her career to this disease and community. Her ultimate plan is to attend medical school, specialize in medical oncology, and continue to serve the academic NET community and patient base as a physician and clinical investigator. For more information, visit LACNETS.org. Play Video Play Video 01:25:46 "Surgery: The What, Where & When" with Dr. Eric Liu • LACNETS • July 2023 Join LACNETS to hear NET expert Dr. Eric Liu of Rocky Mountain Cancer Centers discuss “Surgery: The What, Where & When.” To learn more, visit LACNETS.org. Play Video Play Video 01:04:08 LACNETS • "High Grade Neuroendocrine Neoplasms (NEN)" with Dr. Jason Starr • May 2023 Join LACNETS on May 4th for an educational event dedicated to high grade neuroendocrine neoplasms (NENs). Medical oncologist Dr. Jason Starr from Mayo Clinic in Jacksonville, Florida, will discuss the management and treatment of high grade NENs, including the latest updates and clinical trials. For more information, visit LACNETS.org. Play Video Play Video 01:28:20 LACNETS • "What's New in PRRT" with Dr. Amir Iravani • Apr 2023 Join Dr. Amir Iravani, a Nuclear Medicine Physician and Theranostics Director at Fred Hutchinson Cancer Center, to hear the latest on Peptide Receptor Radionuclide Therapy (PRRT). Better understand the difference between beta and alpha PRRT, current trials and updates on PRRT for Lung NET, adolescents and dosimetry. For more information, visit LACNETS.org. Play Video Play Video 01:32:12 LACNETS • "Update on NET Clinical Trials" with Dr. Heloisa Soares • Mar 2023 Join us for an "Update on NET Clinical Trials" with special guest Dr. Heloisa Soares, a medical oncologist at the Huntsman Cancer Institute (HCI) at the University of Utah, to hear the latest in NET clinical trials. Visit LACNETS.org/Mar2023 for more information. Play Video Play Video 01:29:21 LACNETS • "Genetics of NET: Do I Need Genetic Testing?" with Samantha Greenberg • Feb 2023 Do I need genetic testing? Do my family members need to be tested? What does genetic testing entail? What genetic mutations are possible and what does it mean for my family if I carry a mutation? Join Genetic Counselor Samantha Greenberg of the University of Texas, Southwestern, for a discussion about genetic testing for NETs. For important information and resources about this topic, visit LACNETS.org/Feb2023. To learn more about LACNETS, visit LACNETS.org. Play Video Play Video 01:34:45 LACNETS • "Novel Translational Research for Metastatic NET Patients at the NCI" • Jan 2023 Join LACNETS for this special educational event. What if you could both undergo surgery for your metastatic disease and also donate your liver tumor to find a cure for NET? Learn how you can contribute to NET research. The NET team at the National Cancer Institute (NCI) will give us a behind-the-scenes look at their innovative NET research. Be inspired by their hard work and dedication to the NET community. For more information, visit LACNETS.org. Play Video Play Video 01:42:02 "Focus on Pheochromocytoma and Paraganglioma" - Jan 2023 LACNETS Educational Event Join LACNETS for a Rebroadcast of the unique webinar presentation of three pheochromocytoma and paraganglioma (PPGL) cases and an engaging panel discussion with experts Dr. Jaydira Del Rivero, Dr. Erik Mittra, and Dr. Karel Pacak. (Original broadcast on Wednesday, January 11, 2023) Load More < Back to Topics Next Topic >

Join NCF for Atlanta. Explore event details, dates, times, and discover opportunities to connect, learn, and get involved. < Back to the upcoming events page READ THE EVENT BLOGPOST ABOUT The Neuroendocrine Cancer Foundation (NCF) and Emory Winship Cancer Institute hosted a free, in-person educational conference designed specifically for people living with neuroendocrine cancer and their caregivers. This one-day program brought together leading experts from Emory University, the University of Alabama at Birmingham, and Vanderbilt University to share practical, up-to-date information on the diagnosis and management of neuroendocrine cancer. Local and regional neuroendocrine cancer specialists presented the latest insights in NET care, including multidisciplinary approaches to surgery; advances in liver-directed therapy, systemic treatments, PRRT, and clinical trials; and emerging research on GLP-1 agents and neuroendocrine tumors. In addition to expert-led presentations, attendees heard patient stories and had the opportunity to engage directly with specialists during live Q&A sessions. The interactive format helped empower patients and caregivers with knowledge, confidence, and a clearer understanding of available treatment options and care pathways. Special thanks to Dr. Udhayvir Grewal for collaborating with NCF to make this event possible. LOCATION Starvine Ballroom, Emory Conference Center Hotel 1615 Clifton Rd N E, Atlanta, GA 30329 AGENDA & SPEAKER PRESENTATIONS SPEAKER BIOS To help attendees continue learning and revisit the information shared during the program, presentation slides are available for download. Simply click on the presentation titles above to access speaker slides and related resources. Welcome & Introductions https://www.youtube.com/watch?v=Fc73UnhygB0 A Patient Journey https://www.youtube.com/watch?v=KPwJeAn7ybA Multidisciplinary Approach to Surgery for NET https://www.youtube.com/watch?v=ivcEGDTSQdM 1_Concors_Multidisciplinary Approach to Surgery for NET .pdf Download PDF • 2.28MB Liver-Directed Therapy: Understanding Minimally Invasive Options to Treat Liver Tumors https://www.youtube.com/watch?v=UK9Own5KJJw 2_Lilly_Liver-Directed Therapy .pdf Download PDF • 6.09MB Understanding Your Scans and PRRT: How Imaging Guides Treatment https://www.youtube.com/watch?v=eMpEhwRTQcY 3_Cole_Understanding your scans and PRRT .pdf Download PDF • 5.94MB Preparing for PRRT: What Patients Need to Know https://www.youtube.com/watch?v=0Bnhvy_-ynw 4_Muzahir_Preparing for PRRT What Patients Need to Know .pdf Download PDF • 7.74MB Systemic Therapy for Neuroendocrine Cancer: What Patients Need to Know https://www.youtube.com/watch?v=_Zqg2bT0V7k 5_Gupta_Systemic Therapy for Neuroendocrine Cancer What Do I Need to Know .pdf Download PDF • 1.04MB Q&A Session + Expert Panel #1 https://www.youtube.com/watch?v=386fjC34MJQ How Do GLP-1 Agents Factor Into Neuroendocrine Tumor Care Strategies? https://www.youtube.com/watch?v=0xmNEqt0LHc 6_Po Hien Ear_How Do GLP1 Agents Factor Into Neuroendocrine Cancer Care .pdf Download PDF • 28.84MB What It Means To Be Part of a Clinical Trial https://www.youtube.com/watch?v=cUtC08cS6fU 7_Halperin_Clinical Trials What It Means to Be Part of a Clinical Trial .pdf Download PDF • 407KB Clinical Trials: What's on the Horizon? https://www.youtube.com/watch?v=6Qt8nDQ8oEQ 8_Grewal_Clinical Trials .pdf Download PDF • 5.38MB Q&A Session + Expert Panel #2 https://www.youtube.com/watch?v=vUvqXavnfEM The opinions expressed by the guest presenters, as well as the questions asked by the audience, have not been created or suggested by NCF or the sponsors of this program. NCF does not endorse or promote any of the views, opinions or information provided in this presentation. Audience members should not rely solely on the opinions or information expressed by the guest presenter and should seek guidance and direction from their own medical advisors regarding any choices they make about their health or treatments. THANKS TO OUR SPONSORS

Watch the 2024 LACNETS Neuroendocrine Tumor Patient Conference Play Video Share Whole Channel This Video Facebook Twitter Pinterest Tumblr Copy Link Link Copied Now Playing Welcome and Introductions • 2024 #LACNETS Neuroendocrine Tumor Patient Conference 09:56 Play Video Now Playing "Understanding NET Diagnosis" with Dr. Chandrasekharan • 2024 #LACNETS Patient Conference 35:16 Play Video Now Playing "Understanding NET Scans" with Dr. Nadine Mallak • 2024 LACNETS NET Patient Conference 23:47 Play Video Visit Sponsor Booths Speaker Bios Sponsors THANKS TO OUR SPONSORS Novartis Booth Crinetics Booth IPSEN Booth Curium Booth ABOUT THE CONFERENCE Our 2024 LACNETS Neuroendocrine Tumor Patient Conference is designed for neuroendocrine cancer (NET) patients and caregivers to deepen your understanding of NETs. Whether you are newly diagnosed or have been living with NET for many years, we encourage you to attend: Learn from top NET experts from across North America on a range of topics relevant to the NET patient journey. Topics include work-ups, scans, surgery, carcinoid crisis, liver-directed therapy, PRRT, systemic treatments, treatment sequencing, NET guidelines, and clinical trials. Gain insight into NET decision-making through the NET tumor board panel discussion. Hear stories from NET patients and caregivers. Join virtually, where you can pause, rewind, or replay. There is no cost to attend. This event is made possible by the generosity of donors and sponsors. The information provided is for educational purposes only and does not substitute for medical advice. Talk to your medical team if you have any questions or concerns about your individual care and treatment. The opinions expressed in this program are those of the speakers and do not represent the opinion of LACNETS.

Supporters of the Neuroendocrine Cancer Foundation Thanks to our Sponsors NCF partners with sponsors to connect patients and caregivers to the most up-to-date resources, financial help, and access to treatments and trials. SPONSOR THE NEUROENDOCRINE CANCER FOUNDATION Sponsors and donors make our work possible. Contact us to learn how you can support us. First Name Last Name Email Send Thanks for submitting!

Lung NET Resources WATCH Click here to download the presentation slides from the above video. Click here to download the presentation slides from the above video. Click here to download the presentation slides from the above video. Lung NET specialist Dr. Sukhmani Padda gives an update on lung NETs. EPISODE 26: WHAT TO KNOW ABOUT LUNG NETS What are lung NETs? What is DIPNECH? How is lung NET similar or different from lung cancer? Dr. Vineeth Sukrithan from Ohio State University Comprehensive Cancer Center gives a comprehensive overview of lung NET and DIPNECH, including the work-up and treatment options. He also discusses open clinical trials and exciting advances in lung NET research on the horizon. LISTEN NOW LISTEN OTHER RESOURCES Lung NET infographic, courtesy of Neuroendocrine Tumor Research Foundation. ADDITIONAL LUNG NET RESOURCES: NetWise Podcast - Lung NETS Episode Our Cancer Stories - "Neuroendocrine Tumors of the Lung" Our Cancer Stories - "What is Lung Carcinoid?" Our Cancer Stories - "Key Statistics for Lung Carcinoid Tumor" Our Cancer Stories - "Hormonal Syndromes Caused by Lung Neuroendocrine Tumors" OPEN CLINICAL TRIALS: PRRT TRIAL for lung NET: phase 2 trial studying the effect of lutetium Lu 177 dotatate (PRRT) compared to the usual treatment (everolimus) in treating patients with somatostatin receptor positive ADVANCED bronchial Neuroendocrine Tumors OTHER CLINICAL TRIALS FOR LUNG NETS: Lung/Bronchial NETs TREATMENT GUIDELINES & RESEARCH ARTICLES: 2021 CommNETS/NANETS Guidelines for the Diagnosis and Management of Patients With Lung NETs: An International Collaborative Endorsement and Update of the 2015 European Neuroendocrine Tumor Society Expert Consensus Guidelines SPINET Trial Scholarly articles on Lung Carcinoid Tumors (Recommended by Dr. Robert Ramirez) 2022 Review Article by Dr Robert Ramirez et al: A multidisciplinary approach to the work up and management of pulmonary carcinoid tumors and DIPNECH: a narrative review 'OUR CANCER STORIES' SURVEY Researchers are currently conducting an international study approved by the NUS Ethics Committee (NUS-IRB-2023-320) to examine the relationship between emotional well-being and recovery for cancer patients. Our Cancer Stories' goal is to gather anonymous insights from individuals (aged 30-70) diagnosed with prostate and lung cancer about their personal experiences. To ensure the success of this research, they are seeking cancer patients willing to share their stories through an online survey with the option of reimbursement of $20 USD upon completion. This is a confidential, online survey that will take about 30 minutes to complete. Survey responses will be used to create stories that will be published on a website called Our Cancer Stories (www.ourcancerstories.com ). These stories are aimed at providing readers (e.g. cancer patients, survivors, caregivers, and those with loved ones affected by cancer) with information useful in making informed decisions in fighting cancer, while providing comfort and solidarity. PATIENT STORIES NET Patient Dorinda Shares Her Journey "In Sickness and in Health" shares Lauren's journey. Lauren is a former beauty pageant queen turned professional dancer for the Sacramento Kings.

NETCONNECT A Peer-to-Peer Program NETCONNECT is a peer-to-peer network to connect neuroendocrine cancer patients and caregivers with those who can truly relate, listen, provide support and resources. We were all once the newly diagnosed, or the loved one of someone newly diagnosed, and we understand what that feels like. Our community members know how important it is to connect with others who “speak NET,” are familiar with neuroendocrine cancer terms, medical experts and treatment options. Or just to be reminded to take a deep breath and know you're not alone in this journey. CONNECT WITH A PEER Whether you are newly diagnosed or a long-term survivor, our peers are here for you. Please send us an email to be connected with a peer. Email us at info@ncf.net MEET THE NETCONNECT PEERS Brent Currie Heather Davis Beth Deblase Michel DeQuevedo Mary Donlevy Dusty Hurley Denny Organ Shane Peters Aimee Powell Samuel Prentice David Schrimmer Valerie Tippy Beth Voyles Brent Currie BRENT CURRIE NET Patient Brent was diagnosed mid-2017 during an ER visit for blockage and had his large midgut primary NET near the ileum resected. His local oncologist closely monitors bloodwork and scans for new metastases and coordinates results with his multidisciplinary NET center and NET specialist. His past treatments include a second major resection, and lanreotide which he worked hard with his medical team to minimize the severe side-effects unique to him. He is happy to be working with newly diagnosed patients, helping folks understand the terminology and preparing for specialist visits using the NET Vitals worksheet. He is finding this stage of life to be a faith journey just as much as it is a medical journey. He is also a caregiver to his cancer-survivor mom, and enjoys technology and singing/playing music. Watch Brent share about his NET journey here. Heather Davis HEATHER DAVIS Director of Community Engagement Neuroendocrine Cancer Foundation Heather was a medical advocate and caregiver for 12 years for her mother, Shaunie, who was diagnosed with pancreatic neuroendocrine cancer in 2012. The efforts required to navigate and manage a rare disease, with complications of Zollinger-Ellison Syndrome, motivated Heather to shift her 20-year marketing career to patient engagement. After learning from and volunteering for LACNETS, she was pleased to join the LACNETS Team in the Fall of 2022. Heather is passionate about supporting those affected by NET. She aspires to bridge the information gap between patients, physicians and healthcare resources. Spending time with her nephews, friends & family brings her levity and joy. Watch Heather and her mother share about their experience with PRRT. Beth Deblase BETH DEBLASE NET Patient Beth was diagnosed in 2016 with metastatic, midgut NET. In that time, she has made aesthetic oncology and integrative therapies her passion. Her mission is to help enhance the quality of life for fellow cancer patients and caregivers, including herself, her four children, and husband. Watch Beth share her inspiring story of strength and resilience titled, “A Shared Experience” here. Michel DeQuevedo MICHEL DEQUEVEDO NET Patient Michel DeQuevedo is a Mexican – Canadian musician living with NETs. After almost 10 years of being “diagnosed” with pretty much every single gastrointestinal condition, changing his diet almost as often as his socks, constantly visiting everybody’s bathrooms and taking tons and tons of non-recreational drugs, he was diagnosed with functional, grade 1, Gastrointestinal NETs, small bowel primary with mets in his liver, appendix, right lung and omentum in September 2021. Michel had an open surgery in December 2021 where some of his factory original parts where removed, along with 90% of the tumors. He is currently on Lanreotide, 120mg every 21 days and can finally have a conversation with someone without having to take bathroom breaks! Michel is an active patient advocate and the founder of NETs México, working to raise awareness about NETs in México and Latin America. He believes keeping a positive attitude is extremely important, as it helps us maintain a clear mind and keeps us moving forward. Watch Michel’s story of diagnosis to patient advocacy here. This video is also available in Spanish, found here . Mary Donlevy MARY DONLEVY NET Patient & NCF Board Member Mary was diagnosed in 2005 with a Pancreatic NET. She had a Whipple surgery after her initial diagnosis and a decade of stable disease afterwards on Afinitor and Sandostatin treatments. After a liver resection surgery in 2023 Mary is currently managing her liver metastases with Lanreotide. While living well with this disease for over 21 years Mary has raised four children, two of which are identical twins born after her diagnosis. Mary enjoys ocean swimming and traveling with her family. Watch "Against the Tide: The Mary Donlevy Story". Watch Mary share about her experience in a clinical trial. Watch Mary also share about "scan-xiety," the common anxiety patients sometimes have when undergoing scans here. Watch Mary share her story of living with pancreatic neuroendocrine tumor. DUSTY HURLEY NET Patient Dusty Hurley is wife to a charming Irishman; mom to two loving, fun, and bright elementary-aged daughters; and the favorite human of two fluffy, playful dogs. Her professional background includes ministry, nonprofit and government leadership, and grant writing. She enjoys spending time with friends and family…bonus points if it can be around a campfire or traveling to somewhere new. Diagnosed with a pancreatic neuroendocrine tumor (pNET) in 2022, Dusty brings faith, optimism, and determination to her roles as both patient and advocate. She’s passionate about helping others navigate NET with clarity, courage, and hope. Watch Dusty on a recent patient panel: "Living With NET: A Patient Perspective" Dusty Hurley Denny Organ DENNY ORGAN NET Patient Denny likes to say that he is living quite well with well-differentiated grade 3 NETs first diagnosed in June of 2020, with significant mets in his liver. Early in his NET journey he dedicated the time to gain as much understanding and knowledge as possible about his disease, treatment options and prognosis. His path has been somewhat unique in having his first-line treatment be Lu-177 PRRT in 2020, and following progression in 2024, two additional rounds of Lu-177. Denny is a very engaged self-advocate and has assembled a strong cross-functional medical team of NET specialists for support. He is a strong believer in integrative oncology being a partner with traditional oncology on his cancer journey and continues to learn and implement strategies for whole body health. Denny’s goal is to keep his cancer, carcinoid heart disease, coronary heart disease and gallstones stable so that he can enjoy the best possible quality of life. He continues to have the time and energy to enjoy a wide variety of hobbies, keep physically active, connect with other NET patients throughout the west coast, and even occasionally provide a patient perspective at NET medical conferences! Watch Denny share his experience with PRRT. Shane Peters SHANE PETERS NET Caregiver & Advocate Shane dove headfirst into the world of neuroendocrine tumors after his mother was diagnosed with stage four, pancreatic NET in 2020. Shane's mom, Ilka, is his best friend and he is determined to do everything and anything possible to make sure his mom forever receives the best cancer care. Shane's mother has undergone a distal pancreatectomy, splenectomy, cholecystectomy, five bland liver embolizations, countless Lanretoide injections and a second liver debulking surgery at the NIH to manage her diagnosis Shane has found such a loving community within LACNETS, in which many of these connections have become dear friends and supporters in his life. Shane is so grateful to be able to give back to the community and help those facing similar journeys as his mother. When Shane is not learning about NETs, he spends his days teaching chorus, piano and music in southern New York! Watch "The Strength of Support: the Shane and Ilka Peters Story." Watch Shane and his mother share their NET journey. Read Shane Peters' blog post 'Scan Results: To Check or Not to Check' Aimee Powell AIMEE POWELL NET Caregiver & Advocate Aimee Powell's involvement with the NET cancer community has its roots in her work as a caregiver for family members diagnosed with pheochromocytoma and paraganglioma (pheo/para). She has worked in an administrative capacity with nonprofits since 2005, and as a professional communicator for over twenty-five years. After her brother's death from malignant paraganglioma, she dedicated herself to raising awareness of para/pheo, and to assisting patients with these rare tumors. Aimee is the founder of the Pheo Para Project, past Executive Director of the Pheo Para Alliance, and currently sits on the board of directors for the SDH-Deficient Cancer Research Advocates. She lives in the Greater Los Angeles area. Watch Aimee share about her pheo/para journey here. Samuel Prentice Jr. SAMUEL PRENTICE JR. NET Patient Samuel is 78, widowed with three children, a retired professional social worker, holistic counselor and educator. He was officially diagnosed in 2017 with NET originating in the small bowel with liver metastases, resulting in the removal of nine feet of small intestine, ileum, iliosacral valve, and his appendix. Samuel then began monthly Sandostatin injections, but in 2018 had a NET colon blockage which led to a colostomy and multiple hospitalizations. In January, 2019 he completed four cycles of PRRT resulting in five years without NET growth. In 2023, he had ⅓ of his neuroendocrine tumorous colon and colostomy removed. The surgeries, however, resulted in struggles with gastrointestinal motility and weight loss. Regardless, Samuel maintains quality of life and energy by swimming and QiGong exercise, singing, dancing, traveling between homes in Southern California and the Indiana Dunes to visit family and friends, continuing his personal holistic growth, progressive political activism and doing one-on-one volunteer counseling with NET patients. He also has fun driving his Acura NSX, and attending hockey, theatre, music, fine art live events and handing out Lollipops! Laugh and sing along as Samuel shares his “Circle Song.” DAVID SCHRIMMER NET Patient David was born and raised in California, spending most of his life in San Diego where he and his wife raised two beautiful daughters. Most recently, the family has welcomed a new grandson who has provided much joy to an already happy family. In addition, a new puppy has successfully turned life upside down with his unbridled enthusiasm for simply being a “part of the pack.” Professionally, David worked at the University of California for many years, practicing and teaching medicine until the time of his diagnosis with neuroendocrine cancer. Opening a new chapter in life, David now spends much of his time as a patient advocate, continuing to seek avenues to educate patients with the same diagnosis. In addition, he now serves on several task force committees, including the National Cancer Institute at the National Institutes of Health, serving to help provide the patient voice to proposed studies designed to advance our knowledge and treatment options for patients with NET’s. In his free time, David is an avid photographer, taking pictures since his first camera purchase at the age of 8. Currently, his passion is in the growing area of astrophotography, travelling to some of the darkest skies in the world in search of the light from our universe, trying to capture and record its beauty. Watch David on a recent patient panel: "Living With NET: A Patient Perspective" David Valerie Tippy VALERIE TIPPY NET Patient Val was diagnosed with Carcinoid Syndrome in October 2015 with an unknown primary. Along with the unpredictable diarrhea and fatigue, she also deals with sudden shortness of breath, coughing and a hoarse voice. Val’s doctors feel her NET is hiding, so routine tests and scans are done to try and locate the elusive tumor. This can be an ongoing challenge for some NET patients, so getting to the right NET specialist is crucial. In early 2016, Val began doing Lanreotide shots every 4 weeks. When that did not seem to control the symptoms, she was given Lanreotide every 3 weeks, with 5 – 8 rescue shots per day, as needed. In November 2021, her doctor decided to try using an insulin pump with hourly infusions of Octreotide. It was quite a process to find the right dosage, but it has helped tremendously with controlling the syndrome. Val recently retired after spending the last 20 years working with hospitals on designing security systems for patient protection. Her goal is to travel with her husband and spend time with her two adult children. Watch Val share about her NET journey here. BETH VOYLES NET Caregiver Beth was the primary advocate and caregiver for her husband Don. Don began this roller coaster ride when he was diagnosed in November 2019 with midgut NETs and metastases to his liver, pancreas, and bones. He also had carcinoid syndrome from functional tumors. Don underwent numerous treatments for his NETs as well as replacement of both his tricuspid and pulmonary heart valves. His symptoms were very difficult to control. Beth’s professional career as a palliative care nurse provides a unique perspective on the role of advocacy and caregiving. Beth and Don experienced both highs and lows on this journey, but took it one day at a time. They travelled when they could and made memories with family and friends along the way. Watch Beth and Don share about their NET journey here. Read Beth's blog post, "What It Means To Be A Caregiver." Beth Voyles

Join NCF for Apr29. Explore event details, dates, times, and discover opportunities to connect, learn, and get involved. < Back to the upcoming events page https://www.youtube.com/watch?v=jU1HE38G8JQ ABOUT Learn from Cardiologist and Congenital Heart Disease Specialist, Dr. Prashanth Venkatesh from Cedars-Sinai Smidt Heart Institute in a virtual educational event on carcinoid heart disease. Dr. Venkatesh demystifies the topic and shares the latest developments in its diagnosis and treatment, including a novel minimally invasive approach to replace heart valves damaged by carcinoid heart disease. Prior to the event, we encourage you to watch our February 2024 webinar with Mayo Cardiologist Dr. S Allen Luis at https://www.youtube.com/watch?v=DcewKhYm8uY . Click here for more Carcinoid Heart Disease resources >>> ABOUT DR. PRASHANTH VENKATESH Cardiologist & Congenital Heart Disease Specialist, Cedars-Sinai Smidt Heart Institute Prashanth Venkatesh, MD, FACC is a cardiologist at the Smidt Heart Institute at Cedars-Sinai Medical Center in Los Angeles, California. He is an assistant professor of cardiology at Cedars-Sinai, and also an assistant professor of medicine at the David Geffen School of Medicine at the University of California, Los Angeles. At Cedars-Sinai, he is part of the multidisciplinary neuroendocrine clinic where he cares for patients with carcinoid heart disease. Additionally, Dr. Venkatesh is a specialist adult congenital cardiologist at the Guerin Congenital Heart Program at Cedars-Sinai, and also a member of the echocardiography faculty. He leverages his clinical expertise in these subspecialties to improve care for his patients with carcinoid heart disease. Dr. Venkatesh also is actively involved in clinical research and has authored several first-author publications and book chapters. His research interests include echocardiography and adult congenital heart disease, in addition to outcomes and quality improvement in the contemporary care of carcinoid heart disease. T he opinions expressed by the guest presenters, as well as the questions asked by the audience, have not been created or suggested by the Neuroendocrine Cancer Foundation or the sponsors of this program. The Neuroendocrine Cancer Foundation does not endorse or promote any of the views, opinions or information provided in this presentation. Audience members should not rely on the opinions or information expressed by the guest presenter and should seek guidance and direction from their own medical advisors regarding any choices they make about their health or treatments. THANKS TO OUR SPONSORS

<< Go back to the Podcast page EPISODE 6: DECISION-MAKING FOR NETS Download a Transcript of this Episode >> ABOUT THIS EPISODE How do NET experts decide what treatments are right for you? How do I learn about current clinical trials? In our sixth episode, NET expert and medical oncologist Dr. Daneng (Dan) Li of City of Hope answers 10 common questions about decision-making for NETs including finding the primary tumor site, bone mets, tumor grades, and the role of adjuvant therapy. MEET DR. DANENG (DAN) LI Daneng Li, M.D. , is an assistant professor in the Department of Medical Oncology & Therapeutics Research at City of Hope, specializing in treating gastrointestinal cancers. Dr. Li currently leads the liver tumors program and is also the co-director of the Neuroendocrine Tumor Program at City of Hope. Dr. Li earned his undergraduate degree from The Ohio State University in Columbus, Ohio, graduating summa cum laude. He then went on to receive his medical doctorate from Weill Cornell Medical College in New York, before pursuing an internship and residency in internal medicine at New York-Presbyterian Hospital/Weill Cornell Medical Center. He then completed a hematology/oncology fellowship at Memorial Sloan-Kettering Cancer Center in New York City. Board certified in internal medicine and medical oncology, Dr. Li serves on several national committees focused on his specialty tumor types. He has authored several publications in the peer reviewed literature, and has presented his work nationally. TOP 10 QUESTIONS 1. How important is it to find the primary tumor site? How much effort should go into pursuing this? How common is it to have a NET with an unknown primary site? 2. What do you do when someone who has been diagnosed with NET has elevated tumor markers and symptoms but scans show no evidence of disease? 3. What’s the difference between a functional and nonfunctional NET? 4. How are bone mets treated? 5. How concerned would you be with a patient’s bone marrow during PRRT treatment especially if they have bone lesions? 6. Do tumor grades ever change? 7. When would you recommend doing another biopsy? 8. What is the role of adjuvant therapy for NET? 9. When do YOU consider clinical trials for NET patients? 10. How do patients or advocates find out about clinical trials and decide if that’s the best option for them? DISCLAIMER LACNETS Podcasts are created for educational purposes only and do not substitute for medical advice. The views shared in this Podcast are the personal opinions of the experts and do not necessarily reflect the views of LACNETS. Please contact your medical team with questions or concerns about your individual care or treatment. THANKS TO OUR SPONSORS

SWOG S2104: Adjuvant CAPTEM for High Risk pNET << Back SWOG S2104 - Testing the Use of Chemotherapy After Surgery for High-Risk Pancreatic Neuroendocrine Tumors CLINICALTRIALS.GOV IDENTIFIER: NCT05040360 DRUG/TREATMENT: Oral treatment; capecitabine and temozolomide PHASE: 2 STATUS: Recruiting SPONSOR: Southwest Oncology Group (SWOG) COLLABORATOR: National Cancer Institute (NCI) https://www.youtube.com/watch?v=f32z9MhrHio Dr. Heloisa Soares Discusses SWOG S2104 Adjuvant CAPTEM for pNET https://www.youtube.com/watch?v=8evkiZfcpJQ Dr. Will Pegna Discusses SWOG S2104 Adjuvant CAPTEM for pNET Starting at 4:23 DESCRIPTION: This phase II trial studies the effect of capecitabine and temozolomide after surgery in treating patients with high-risk well-differentiated pancreatic neuroendocrine tumors. Chemotherapy drugs, such as capecitabine and temozolomide, work in different ways to stop the growth of tumor cells, either by killing the cells, by stopping them from dividing, or by stopping them from spreading. Giving capecitabine and temozolomide after surgery could prevent or delay the return of cancer in patients with high-risk well-differentiated pancreatic neuroendocrine tumors. For more information on eligibility criteria, trial locations, study details, etc., go to ClinicalTrials.gov to view this trial here. CONTACT: This is a multicenter trial with various locations. Go to the “Contacts and Locations” section of this trial page at ClinicalTrials.gov for site-specific contact information. PRINCIPAL INVESTIGATOR: Heloisa Soares , MD, PhD Southwest Oncology Group (SWOG)

<< Go back to the Podcast page EPISODE 52 - Spotlight on Genetic Counselors Download a Transcript of this Episode >>> ABOUT THIS EPISODE Who is a genetic counselor, and who should see one? How do they fit into the neuroendocrine cancer care team? In this episode, Samantha Greenberg, PhD, MS, MPH, CGC, Director of the UT Southwestern Genetic Counseling Program, demystifies genetic counseling and testing for NET patients and their families. She explains what to expect before, during, and after a consultation—and how results can impact care, family members, and future planning. TOP TEN QUESTIONS Role & Training 1. What is a genetic counselor? What training is required? What’s your role in the care team? Genetic Counseling & NETs 2. How are genetic counselors involved in NET care? 3. Who should get genetic testing? Do all NET patients need it? What if more than one family member has NET? Do you also see family members without a diagnosis? 4. How does one’s age play a role? Testing Basics 5. Genetic vs. genomic vs. NGS—what are these terms? How do patients know they’re getting the right test? 6. Walk us through a genetic counseling consultation—before, during, after. Results & Implications 7. What if the results are positive? How do you guide patients and families? What if the results are negative or inconclusive? How accurate are tests? 8. What is a “variant of unknown significance”?9. Can environment or toxins cause hereditary mutations? Practical Guidance 10. How can patients find the right genetic counselor? Do they need to be someone who specializes in neuroendocrine cancer? MEET SAMANTHA GREENBERG Samantha Greenberg, PhD, MS, MPH, CGC Pronouns: she/her Director, UT Southwestern Genetic Counseling Program Assistant Professor School of Health Professions Samantha Greenberg is the founding program director of the UT Southwestern Genetic Counseling Training Program. She received her Master of Science degree in genetic counseling and public health from the University of Michigan after teaching middle school science with Teach For America in Tulsa, Oklahoma. She recently completed her Ph.D. at the University of Utah. As a cancer genetic counselor, Greenberg has provided clinical care across a variety of indications and facilitated the development of multidisciplinary teams and genetics clinics for patients with prostate cancer, von Hippel-Lindau syndrome, and paraganglioma/pheochromocytoma. She is the co-director of the paraganglioma program at UT Southwestern, which recently received a Center of Excellence designation from Pheo Para Alliance. Her passion for raising awareness on the genetics of neuroendocrine tumors stems from working with patients and a curiosity for how to optimize identification of patients with hereditary risk. RESOURCES Watch https://www.youtube.com/watch?v=VWMdD5LJAFo Genetics of NET: Do I Need Genetic Testing with Samantha Greenberg (Feb 2023) https://www.youtube.com/watch?v=wgEoFAQ7lp8 Deciphering Genetics & Genomics in Neuroendocrine Cancers with Dr. Kimberly Perez (Feb 2025) EXPLORE FindaGeneticCounselor.com https://pheopara.org/ DISCLAIMER The Neuroendocrine Cancer Foundation Podcasts are created for educational purposes only and do not substitute for medical advice. The views shared in this Podcast are the personal opinions of the experts and do not necessarily reflect the views of the Neuroendocrine Cancer Foundation. Please contact your medical team with questions or concerns about your individual care or treatment. THANK YOU TO OUR SPONSORS

Our Vision The Vision initiative is in memory of Giovanna Joyce Imbesi, the late founder of LACNETS (now Neuroendocrine Cancer Foundation), whose vision was to empower neuroendocrine cancer patients and caregivers by providing a healing exchange of educational resources. The Neuroendocrine Cancer Foundation provides education, advocacy, and support through its programs, which play a key role in treatment decisions. Giovanna left behind a profound legacy. The Neuroendocrine Cancer Foundation has a great responsibility to help sustain this organization and keep her vision alive due to the impact she had on the neuroendocrine cancer community. The Neuroendocrine Cancer Foundation invites you to participate in our vision initiative supporting neuroendocrine cancer patients and their loved ones. Be a part of the healing. Make a difference today! Large or small, every gift matters and is genuinely appreciated. Your generous contribution will go towards funding the Neuroendocrine Cancer Foundation's greatest needs, such as the production of our educational webinars, podcasts, and conferences. Donate to the Neuroendocrine Cancer Foundation to carry on Giovanna's legacy and vision. Thanks to the generosity of a few committed donors, your gift will be matched dollar for dollar. Help Fund the Vision Watch the tribute video honoring Giovanna Joyce Imbesi by Rich Tamayo, Emmy Winning Video Producer & a friend In Loving Memory Giovanna Joyce Imbesi Our founder, hero & inspiration to live life fully… Giovanna Joyce Imbesi, LACNETS founder, was a patient advocate, pianist, and composer based in Los Angeles. She lived fully with neuroendocrine cancer for 14 years and served as a model of compassion, love and kindness. In 2005, after several years of misdiagnosis, Giovanna was diagnosed with metastatic small bowel neuroendocrine cancer. She understood that those with a rare cancer may feel isolated, and sharing similar experiences may lessen the fear of the unknown and offer comfort. It became her mission to help others in the NET community. Her vision was to create a community for a healing exchange of educational resources and emotional support for all affected by neuroendocrine cancer. Against all odds, Giovanna went on to receive an MBA from UCLA Anderson School of Management with the sole intent of launching LACNETS. In 2012, she founded the non-profit GeneratePossibility and the Los Angeles Carcinoid Neuroendocrine Tumor Society (LACNETS) program. Giovanna's physician, Dr. Edward Wolin, was the inaugural speaker for the first LACNETS' patient education meeting. Through LACNETS, Giovanna's aspiration was to create a more "NET-fluent" world. She wanted to change the narrative from associating NET with famous people who die from the disease to raising awareness of the more than 180,000 people who live with the disease. Giovanna wrote, "Each one of us has the ability to help change those numbers in our own community. There are more opportunities to share more about NET and add one more person to the extended global family of NET awareness." Giovanna helped create tools, such as NET VITALS, to improve communication between patients and physicians. She believed that increased awareness equates to more research, which leads to improved treatments and patient outcomes. Giovanna received the 2016 Monica Warner Advocacy Award, as well as the 2019 Cedars-Sinai Patient Leadership Award , for her inspiring work in patient advocacy. Giovanna Joyce Imbesi passed away peacefully on November 24th, 2019. On her last day, Giovanna said with great pride that her greatest legacy was LACNETS. She felt blessed by this community. Giovanna often said, "Aging is a privilege." She celebrated life and connectedness. She believed in practicing gratitude, even appreciating the difficult times. She was grateful for the thousands of neuroendocrine tumor physicians, researchers and healthcare providers who work on the behalf of NET patients every day. The Neuroendocrine Cancer Foundation works daily to honor Giovanna's vision by serving the NET community she established and helping others to live life richly and fully with NET like she did. Participate in the Vision GENERATE POSSIBILITY For Giovanna, music was medicine. Her musical compositions can be heard on "Short Stories - piano music for healing, meditation & relaxation" recorded while in recovery from neuroendocrine cancer surgery. These pieces were inspired by her belief in the healing power of music as a vital element of our well-being. She frequently contributed music to NET causes. A frequent speaker on living with neuroendocrine cancer and the healing power of music, Giovanna was featured as one of six leaders in Integrative Cancer Care at the 2018 Symington Public Forum at Commonweal. We hope that Giovanna's song and her own words, "Give Me Peace," bring some comfort and peace. I’ll always be grateful for Giovanna and her work through LACNETS (now Neuroendocrine Cancer Foundation). The information I learned and connections I made through the educational meetings changed the course of my medical care and helped me to get back to a place where I could enjoy life. — Tom, NET Patient

Xermelo Resources https://www.xermelo.com/ Talk to a NET nurse about carcinoid syndrome diarrhea. Go to www.enrollxermelo.com . Download the TerSera Nursing Support Program brochure Download the Xermelo Patient Brochure