<< Go back to the Podcast page EPISODE 12: PHEOCHROMOCYTOMA & PARAGANGLIOMA (PPGL) Download a Transcript of this Episode >> ABOUT THIS EPISODE In honor of Pheo Para Awareness Week, NET endocrinologist and medical oncologist Dr. Jaydira Del Rivero of the National Cancer Institute answers ten common questions about pheochromocytoma and paraganglioma (PPGL). Dr. Del Rivero defines PPGL and describes the unique symptoms, genetic testing, and treatment options for PPGL. MEET DR. JAYDIRA DEL RIVERO Dr. Del Rivero earned her medical degree from the University of Veracruz in Veracruz, Mexico and completed her internal medicine residency at Woodhull Medical and Mental Health Center/NYU-Langone Medical Center. Dr. Del Rivero completed a fellowship in Endocrinology, Diabetes and Metabolism at The Inter-Institute Endocrinology Training Program (IETP) at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), The National Institute of Child Health and Human Development (NICHD), and The National Institute of Dental and Craniofacial Research (NIDCR) where she was part of a research team developing clinical trials for pheochromocytoma and paraganglioma. She then joined as Assistant Professor at the Montefiore Einstein Center for Cancer Care (MECCC) where she specialized in endocrine oncology involving thyroid cancer, parathyroid and adrenal tumors, and clinical research for gastroenteropancreatic neuroendocrine tumors. She subsequently completed a second fellowship in medical oncology at the National Cancer Institute (NCI) with a research focus on endocrine malignancies. Dr. Del Rivero is board certified in Internal Medicine, Endocrinology, Diabetes and Metabolism and Medical Oncology. Dr. Del Rivero is a Physician Scientist in the Developmental Therapeutics Branch. She is the Principal Investigator of the Natural History Study for Neuroendocrine Neoplasm and Adrenocortical Cancer to provide the basis of further development of therapeutic interventions, prevention/screening guidelines, endpoints for future clinical trials, and patient reported outcome measures. Dr. Del Rivero’s current efforts is the development of novel treatment approaches and targeted therapies for endocrine malignancies such as advanced gastroenteropancreatic neuroendocrine tumors, adrenocortical cancer and pheochromocytoma/paraganglioma. TOP 10 PPGL QUESTIONS 1. Who should be listening to this podcast episode? Do all NET patients need to know about PPGL? 2. What is PPGL? Is this a cancer? How common is PPGL? How do we know which ones have a higher risk of metastasis? 3. Is this genetic? Who should get genetic testing and when should they get it? Should family members/children get genetic testing or cancer screening? 4. What are the symptoms of PPGL? 5. How is PPGL diagnosed? What labs should be done for PPGL? What scans should I get if have PPGL? Is there a certain priority or order to which scans should get done and when? 6. What is the treatment for PPGL? How do I get appropriate treatment? How do I know what appropriate treatment is? 7. What if my disease is metastatic? What are my treatment options? 8. What if my disease recurs after surgery? What are my treatment options? Could I have surgery again? 9. Will my symptoms be gone after surgery or treatments? 10. I’ve been told I can’t get a biopsy and that surgeries might be dangerous. What do I need to know and what do I need to do? PPGL RESOURCES PPGL resources page PPGL blogpost The Pheo Para Alliance Website https://www.youtube.com/watch?v=0KtyDucuT-U https://www.youtube.com/watch?v=vcb3GoGyA24 "Update on Pheochromocytoma and Paraganglioma: Focusing on Advanced/Metastatic Disease" with Dr. Del Rivero Download Dr. Del Rivero’s presentation slides . This presentation is available in Spanish here . 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

<< Back Surgery Trials SWOG S2104: Adjuvant CAPTEM for High Risk pNET SWOG 2408: Lanreotide vs Placebo Before Surgery to Prevent Pancreatic Fistula

ComPareNET: Lu-177 DOTATATE vs CAPTEM in Advanced pNETs << Back Comparing Capecitabine and Temozolomide in Combination to Lutetium Lu-177 Dotatate in Patients with Advanced Pancreatic Neuroendocrine Tumors CLINICALTRIALS.GOV IDENTIFIER: NCT05247905 DRUG/TREATMENT: Lutetium Lu-177 Dotatate PRRT (Peptide Receptor Radionuclide Therapy) versus CAPTEM (Capecitabine and Temozolomide) PHASE: 2 STATUS: Closed SPONSOR: Alliance for Clinical Trials in Oncology, National Cancer Institute (NCI) https://www.youtube.com/watch?v=jEO6in8giTk Dr. Heloisa Soares Discusses ComPareNET: Lu-177 DOTATATE vs CAPTEM DESCRIPTION: This phase II trial compares capecitabine and temozolomide to lutetium Lu-177 dotatate for the treatment of pancreatic neuroendocrine tumors that have spread to other parts of the body (advanced) or are not able to be removed by surgery (unresectable). 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. Radioactive drugs, such as lutetium Lu-177 dotatate, may carry radiation directly to tumor cells and may reduce harm to normal cells. The purpose of this study is to find out whether capecitabine and temozolomide or lutetium Lu-177 dotatate may kill more tumor cells in patients with advanced 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.

Learn more about the Neuroendocrine Cancer Foundation's mission to provide a community of support and education for patients (those with neuroendocrine cancer), history, and community. About the Neuroendocrine Cancer Foundation MISSION STATEMENT The mission of the Neuroendocrine Cancer Foundation is to provide a community of support and education for patients (those with neuroendocrine cancer or neuroendocrine tumor or NET) and to advocate for all people impacted by this rare disease by expanding awareness and by voicing the patient’s perspective in collaborative dialogue with healthcare professionals. We aim to improve the quality of life of those with neuroendocrine cancer by offering support and expanded access to information on diagnosis, treatment options, research, and resources. The Neuroendocrine Cancer Foundation makes it possible for patients to share experiences, encouragement, and hope. We work to improve outcomes for patients through early diagnosis by raising awareness among healthcare professionals and the public about neuroendocrine and carcinoid cancers. HISTORY Giovanna Joyce Imbesi , a NET patient and patient advocate, founded a non-profit organization named GeneratePossibility in 2012. She launched Los Angeles Carcinoid Neuroendocrine Tumor Society (LACNETS) to offer Patient Education Speaker Series. Since 2012, LACNETS has presented leading NET experts in oncology, gastroenterology, radiology, nuclear medicine, clinical trials, pain management, surgery, and psychiatry and has addressed patient concerns about insurance coverage and nutrition. Starting in 2014, the patient educational programs are recorded for a global audience and posted on the LACNETS YouTube Channel. In November 2022, LACNETS changed its name to Learn Advocate Connect Neuroendocrine Tumor Society, keeping the acronym to reflect the intent for the NET community to learn, advocate and connect. In March 2025, the organization chose "Neuroendocrine Cancer Foundation" as its name to better represent the organization it is today and the broader community it serves. Although the Neuroendocrine Cancer Foundation will expand its reach and provide more access to educational resources, experts, and support, its commitment to the Neuroendocrine Cancer Community remains steadfast and reaffirmed. Contact: info@ncf.net The Neuroendocrine Cancer Foundation is a 501(c)(3) California non-profit corporation. All or part of your donation may be tax deductible as a charitable contribution.

NET Glossary/Index NET Reference Guide for Patients & Families by CNETS Download Here Neuroendocrine Tumors: A Primer for Healthcare Professionals by Healing NET Foundation Download Here

Recursos en Español Información en Español Aquí hay recursos útiles en español para pacientes y cuidadores con tumores neuroendocrinos. A continuación, encontrará videos educativos, grupos de apoyo, historias de pacientes y cuidadores, información útil sobre seguros medicos y otros servicios de apoyo. Haga clic aquí para obtener recursos para los recién diagnosticados. Para comunicarse con NCF, envíe un correo electrónico a info@NCF.net . Tenga en cuenta que no podemos responder en español. Lo sentimos. Presentaciones Educativas Presentaciones Educativas Mas Videos en español ¿Qué importa sobre: las terapias dirigidas al hígado? Dr. Alejandro Gabutti 2025 NCF Conference Lo Importante de PRRT: ¿Qué es PRRT y Cómo Funciona? Cecilia Carreras Velázquez, MD Medicina Nuclear Hospital Ángeles Lomas 2025 NCF Conference Download "Comprensión de las Guías de losTumores Neuroendocrinos (TNEs)" Presentation Slides >>> Download "Actualizaciónes en los Tumores Neuroendocrinos" Presentation Slides >>> Click here to download the presentation slides. Historias de Pacientes Historias de Pacientes Michél vive con cáncer neuroendocrino. Escuche su historia inspiradora y cómo mantiene la esperanza. ver el vídeo Historias de Pacientes y Cuidadores Historias de Pacientes y Cuidadores Introducción NETs Introducción NETs La “Presentación NETs de Elevador” es una forma de presentarte. La razón por la que se llama de “Elevador" es porque debe ser lo suficientemente breve para poder decirla durante un viaje en elevador. Aprende más aquí Tumores neuroendocrinos Cancer.NET ofrece información sobre los tumores neuroendocrinos. Aprende más aquí Guías ASCO Terapia sistémica para control de tumores en tumores neuroendocrinos gastroenteropancreáticos bien diferenciados metastásicos Publicado antes de su impresión el 29 de septiembre de 2023, DOI: 10.1200/JCO.23.01529 Haga clic aquí "El notorio Feo/Para" - Escrito por Aimee Powell - 23 de agosto de 2021 Información Adicional Información Adicional Un analisis del cancer neuroendocrino The Carcinoid Cancer Foundation proporciona un analisis del cancer neuroendocrino. Haga clic aquí Recursos en español - videos, materiales, y seminarios web Triage Cancer tiene información disponible en español. Haga clic aquí. Haga clic aquí Cancer Support Community Los Angeles - grupos de apoyo CSC ofrece varios grupos de apoyo para pacientes y cuidadores. Haga clic aquí INCA - videos y guías educativas INCA tiene mas información en español sobre tumores neuroendocrinos. Haga clic aquí. Descargue el paquete de información para pacientes de Global NET - haga clic aquí. UCLA Health - meditación guiada UCLA ofrece sesiones de meditación guiadas en español. Haga clic aquí La Sociedad Estadounidense de Oncología Clínica Información confiable y compasiva para personas con cáncer, sus familiares y sus cuidadores, de parte de expertos de la American Society of Clinical Oncology (la Sociedad Estadounidense de Oncología Clínica, ASCO por sus siglas en inglés), la voz de los médicos del cáncer y los profesionales oncológicos del mundo. Haga clic aquí

Learn more about the NET experts presenting on various topics during the 2023 LACNETS Neuroendocrine Tumor Patient Conference. 2023 LACNETS Conference Speakers NETS 101: OVERVIEW OF NET TERMS & CONCEPTS AMAN CHAUHAN, MD Medical Oncologist, University of Miami 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 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. A CONVERSATION WITH THREE NET SURGEONS CALLISIA CLARKE, MD Surgical Oncologist, Medical College of Wisconsin Dr. Callisia N. Clarke completed her medical degree at the University of Cincinnati College of Medicine where she was elected to the Alpha Omega Alpha Honors Society. She completed a general surgery residency at the University of Cincinnati Medical Center in Cincinnati, Ohio in 2013 and a fellowship in Complex General Surgical Oncology at The University of Texas MD Anderson Cancer Center in 2016. She joined the faculty at the Medical College of Wisconsin in 2016 as an Associate Professor of Surgery in the Division of Surgical Oncology. Dr. Clarke specializes in hepato-pancreatic-biliary malignancies, melanoma and sarcoma, with her research efforts centered on epigenetic regulation of Neuroendocrine Tumors. She holds numerous leadership positions in national organizations including the American Hepato Pancreato-Biliary Association, the Association for Academic Surgery, the North American Neuroendocrine Tumor Society, and the Society of Surgical Oncology. ALEXANDRA GANGI, MD Surgical Oncologist, Cedars-Sinai Medical Center Dr. Alexandra Gangi is a board-certified surgical oncologist at Cedars-Sinai Medical Center in Los Angeles. Dr. Gangi completed a general surgical residency at Cedars-Sinai and completed her surgical oncology fellowship at the H. Lee Moffitt Cancer Center in Tampa, Florida. She currently serves as the director of the Gastrointestinal Tumor and Cancer Regional Therapies Programs with specialization in Pancreatic and GI Neuroendocrine tumors, Metastatic colorectal cancer, and Peritoneal Surface Malignancies. Her research focuses on understanding GEPNET heterogeneity between and within tumors subtypes and mechanisms of chemotherapy induced liver injury. DANIEL ANAYA SAENZ, MD Surgical Oncologist, Moffitt Cancer Center Dr. Daniel Anaya is a Senior Member, Chief of GI Surgery and Head of Hepatobiliary Section in the Department of Gastrointestinal Oncology, at Moffitt Cancer Center. Dr. Anaya is a fellowship trained Surgical Oncologist with a particular focus on the surgical treatment of patients with liver malignancies (primary and metastatic) and neuroendocrine tumors. His academic interests focus on improving the quality of cancer care and implementing models to improve the delivery of care for patients with complex cancers. He is an expert in developing academic programs that facilitate the delivery of the highest quality of care, while also providing a framework to support research and innovation in the field of cancer and surgery. THE LATEST IN LIVER-DIRECTED THERAPY OSMAN AHMED, MD Interventional Radiologist, University of Chicago Osman Ahmed, MD, is an expert vascular and interventional radiologist who diagnoses and treats a wide range of conditions. Using image-guided technology and small, sophisticated instruments, Dr. Ahmed performs minimally invasive procedures for acute and chronic deep vein thrombosis, benign prostatic hyperplasia, peripheral vascular disease, liver/bone/lung/kidney cancer, spinal fractures, uterine fibroids and more. He also implants inferior vena cava (IVC) filters, which prevent a blood clot from traveling around the body or creating a blockage. In addition to his clinical expertise, Dr. Ahmed researches novel treatment options that improve outcomes for patients. His research on liver cancer, IVC filters and venous diseases has been published in several high-impact, peer-reviewed journals, including the Journal of Vascular and Interventional Radiology, Radiology, Chest, Journal of American College of Radiology, and Journal of Surgical Oncology. Dr. Ahmed also believes in the importance of educating medical students, residents, fellowships and peers in order to enhance health care across the world. He has been invited to speak at a number of symposiums, practicums and national/international meetings about the newest advancements in interventional radiology. THE LATEST IN NET IMAGING NADINE MALLAK, MD Radiologist & Nuclear Medicine, Oregon Health & Science University Nadine Mallak, MD is an Associate Professor of Diagnostic Radiology at Oregon Health and Science University (OHSU), in the divisions of Body Imaging, and Molecular Imaging and Therapy. She is the clinical director of the PET/MRI program at OHSU. The scope of her clinical practice encompasses all aspects of molecular imaging and therapy, in addition to abdominal and pelvic imaging with modalities including ultrasound, CT, and MRI. Her research interests focus on molecular and hybrid imaging, particularly for neuroendocrine tumors and prostate cancer. THE LATEST IN PRRT CARINA MARI APARICI, MD Radiologist & Nuclear Medicine, Stanford University Health Care Mari Aparici, MD is a Clinical Professor in Radiology at Stanford University. She is a Nuclear Physician with residencies in both Europe (Barcelona) and US (Stanford), and with Molecular imaging fellowships from Stanford University. After her training, she joined the Faculty at UCSF where she became a Clinical Professor in Radiology. Dr Mari Aparici is a physician-scientist in the development of Molecular Imaging and therapies. She has more than 20 years of clinical and research experience in the field and now serves as the Director of the Targeted Radionuclide Therapy Program/Theragnostics Clinic at Stanford University. She has published more than 100 papers, serves as an editorial board member of reputed journals, is PI of NIH and non-NIH grants and serves as a member/chair of several committees at her University and Societies related to her medical specialty. THE LATEST IN SYSTEMIC TREATMENTS & CONSIDERATIONS FOR TREATMENT SEQUENCING PAMELA KUNZ, MD Medical Oncologist, Yale Cancer Center Dr. Pamela Kunz is an Associate Professor of Medicine in the Division of Oncology at Yale School of Medicine and Director of the Center for Gastrointestinal at Yale Cancer Center and Smilow Cancer Hospital. She received her medical degree from the Dartmouth Geisel School of Medicine. Her postgraduate training included a medical residency, chief residency and oncology fellowship at Stanford University School of Medicine. Dr. Kunz is an international leader in the treatment and clinical research of patients with gastrointestinal (GI) malignancies and neuroendocrine tumors (NETs). She holds key leadership positions in the field including Chair of the Neuroendocrine Tumor Taskforce of the NCI and vice president of the North American Neuroendocrine Tumor Society. In addition, she has emerged as a leading voice for promoting gender equity in the medical workforce and serves as the Vice Chief for DEI for the Section of Medical Oncology at Yale. She was recently awarded the Woman Oncologist of the Year by Women leaders in Oncology. THE LATEST IN NET CLINICAL TRIALS SIMRON SINGH, MD Medical Oncologist, Sunnybrook Health Sciences Center Dr. Simron Singh is an Associate Professor of Medicine, at the University of Toronto and co-founder of the Susan Leslie Clinic for Neuroendocrine Cancers at the Odette Cancer Centre Sunnybrook Health Sciences Centre. In addition, he is a principal investigator and associate scientist with the Institute for Clinical Evaluative Sciences and Sunnybrook Research Institute. He completed his B. Sc as well as MD at University of Alberta in Edmonton, Alberta. He completed postgraduate training in Internal Medicine at Queens University in Kingston, Ontario, Canada and Medical Oncology at the University of Toronto. After completing his clinical training, Dr. Singh completed his Master's degree in Public Health from Harvard University in Boston, MA, USA. In 2013, Dr. Singh joined Cancer Care Ontario/Ontario Health (CCO/OH) as the Provincial Head, Person-Centred Care Strategy, responsible for the development and execution of CCO corporate strategic priority around person-centred care. He’s had numerous other board and administrative roles both at the national and international level. Dr. Singh is the symposium chair for the North American Neuroendocrine Tumor Society as well as the co-chair of the Commonwealth Neuroendocrine Tumour Group. He is the Canadian Clinical Trial group NET disease site group co-chair, as well as on the European Neuroendocrine Tumour Society advisory board. He currently is the co-chair of the Neuroendocrine Advisory Committee at Cancer Care Ontario which has been able to bring PRRT and Ga-68 imaging to Ontario. Dr. Singh is an internationally recognized clinical and research leader in the field of neuroendocrine cancers. He is a leader in health services research and system level quality improvement and measurement. Dr. Singh has been published in numerous high impact journals such as Lancet, Lancet Oncology, JAMA Oncology and the Journal of Clinical Oncology as lead or senior author. He has been the primary author of numerous guidelines to improve the care of NET patients. He holds a number of peer reviewed grants as well as clinical trial leadership positions. Dr. Singh has numerous international speaking invitations as well as leads a number of research and quality initiatives to improve the ongoing care of patients with cancer. CLINICAL TRIALS: WHY, WHAT & HOW JOSH MAILMAN, MBA President, NorCal CarciNET Josh Mailman was diagnosed with PNET in 2007. Josh is an internationally recognized advocate for NET patients as well as an advocate for integrative oncology and nuclear medicine and molecular imaging. He is the inaugural chair of the Society of Nuclear Medicine and Molecular Imaging’s (SNMMI) Patient Advocacy Advisory Board, Board Member and Treasure of the Neuroendocrine Tumor Research Foundation (NETRF), a member of The Education and Research Foundation for Nuclear Medicine and Molecular Imaging (ERF) Board, and president of NorCal CarciNET Community, one of the largest NET patient communities in the United States. He is currently the sole patient rights advocate for the Nuclear Regulatory Commission’s Advisory Committee for the Medical Use of Isotopes (ACMUI). Josh is also a member of National Cancer Institute’s GI Steering Committee and serves as co-chair of the Patient Advocate Steering Committee. In 2015, Josh was honored with the Warner Advocacy Award, given annually by Novartis Oncology Patient Advocacy and The NET Alliance. The award recognizes an individual for leadership and advocacy for neuroendocrine patients. In the same year, Josh was given the SNMMI’s President’s Award for his work on behalf of patients in the nuclear medicine field. Josh is a former executive board member of the Society for Integrative Oncology (SIO) and was named SIO Patient Advocate of Year in 2010. Josh is a frequent and sought-after speaker for his passionate and highly informed perspective on how patients can effectively participate in the process of working with key stakeholders to improve treatments and advance progress for better quality of life and eventual cures. MODERATORS ANDREW HENDIFAR, MD Medical Oncologist, Cedars-Sinai Medical Center The current research focus of Andrew Hendifar, MD, is on developing new therapies for pancreatic cancer and neuroendocrine tumors. Dr. Hendifar has helped form multidisciplinary teams that specialize in the treatments of pancreatic cancer, and carcinoid and neuroendocrine tumors. Dr. Hendifar is the primary investigator for several groundbreaking therapies, including radioimmunotherapy for neuroendocrine tumors, anti-inflammatory therapy for pancreatic cancer and novel approaches to cancer cachexia. His national roles include SWOG GI Committee Member and a member of NIH Neuroendocrine Tumor Task Force. He also serves as the steering committee member for the Precision Promise Consortium and chairs the associated Supportive Care Committee. At Cedars-Sinai, he leads the Gastrointestinal Disease Research Group and is the founding Director of the Hematology and Oncology Fellowship Program. DANENG LI, MD Medical Oncologist, City of Hope Daneng Li, M.D., is an associate professor in the Department of Medical Oncology & Therapeutics Research at City of Hope Comprehensive Cancer Center, 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 embraces a multidisciplinary approach to treatment of patients with neuroendocrine tumors. He leads several clinical trials focused on improving outcomes for patients with NETs and works closely with scientists in the development of the next generation of novel therapeutics. Nationally, he has served on several NET committees including the NANETS Research Committee, NANETS Continuing Medical Education Committee, and the Patient-Physician Communication Task Force for the Healing NET Foundation, allowing him to work closely to support NET patient advocacy programs. For all his efforts, he was honored as a recipient of the inaugural 40 Under 40 in Cancer Award during the American Society of Clinical Oncology annual meeting in 2018. MARY DONLEVY LACNETS Board member and NET Patient Advocate Mary Donlevy joined the LACNETS Board in 2020. She brings the patient perspective as she has been thriving despite living with pancreatic neuroendocrine tumor since 2005. She has been close friends with LACNETS Founder Giovanna Joyce since 2010 and involved with LACNETS since then. Mary has served as a NET CONNECT mentor and Advisory Committee member. She has been actively involved in the monthly meetings and virtual NET support groups. Mary received her Bachelor's Degree in Communications from University of San Diego and has over 10 years of medical and sales training. Her passion is to help those dealing with this difficult diagnosis and still enjoy a very full and active life. She is the mother of four children, two of which are identical twins, born after her cancer diagnosis. Mary enjoys ocean swimming, yoga and traveling with her husband and children in her free time. << Go back to the 2023 Annual Conference Page

Confirmation page of the Support Line, provided in collaboration with the Carcinoid Cancer Foundation Confirmation Thank you for providing this information so we can better support you or your loved one. You will receive a confirmation email after your submission containing various NET resources. We are here to help and look forward to connecting with you soon. The Neuroendocrine Cancer Foundation does not substitute for medical advice, diagnosis, treatment or other healthcare services. The Neuroendocrine Cancer Foundation may provide information and connections to physicians, products, services, clinical trials or treatments related to neuroendocrine cancer, but the Neuroendocrine Cancer Foundation neither recommends nor endorses any particular healthcare institution or provider. Please consult your medical team about your individual care or treatment.

High Grade NENs < Back to Topics 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 01:31:30 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 01:28:05 "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 01:30:41 "High Grade Neuroendocrine Neoplasms & Small Cell Lung Cancer" • LACNETS Event • May 7, 2024 Learn about the latest in high grade neuroendocrine neoplasms and small cell lung cancer with medical oncologist Dr. Aman Chauhan, Leader of the Neuroendocrine Tumor Program and Co-Director of the Theragnostic Program at the Sylvester Comprehensive Cancer Center, University of Miami. For more information, visit LACNETS.org. Play Video Play Video 45:52 Episode 25 - What to Know About Grade 3 Poorly Differentiated Neuroendocrine Carcinoma (NEC) ABOUT THIS EPISODE What are Grade 3 Poorly Differentiated Neuroendocrine Carcinoma (NEC)? What makes NEC unique? Can a NET transform to NEC? Dr. Nitya Raj from Memorial Sloan Kettering Cancer Center in New York City explains NEC tumor biology and how it guides treatment strategy. She also discusses current clinical trials and research. MEET DR. NITYA RAJ Nitya Raj, MD is a gastrointestinal medical oncologist with a clinical practice devoted to caring for people with gastrointestinal and endocrine cancers, including neuroendocrine tumors, adrenal cancer, colorectal cancer, pancreatic cancer, and other gastrointestinal cancers. Dr. Raj’s research focuses on advancing treatments for neuroendocrine cancers (a rare group of tumors that often begin in the body’s digestive organs as well as adrenocortical cancers. Dr. Raj is also studying ways to improve our understanding of how neuroendocrine tumors change at the genetic level over time and as a result of different treatments, in order to better personalize our care for people with these cancers. Dr. Raj’s work has been recognized and supported by the American Society of Clinical Oncology with a Young Investigator Award and Career Development Award, as well as by the Neuroendocrine Tumor Research Foundation with a Pilot Award. Nationally, Dr. Raj serves on the Neuroendocrine Tumor Task Force of the National Cancer Institute. Dr. Raj is on the faculty of Memorial Sloan Kettering Cancer Center and Weill Cornell Medical College. TOP 10 QUESTIONS 1. What is a poorly differentiated grade 3 neuroendocrine carcinoma (NEC)? Are all NEC poorly differentiated and are all poorly differentiated NEC? Where are they located? 2. How are NEC found? How does one know it is a NEC? 3. How is NEC unique compared to other types of neuroendocrine cancers? In particular, how is it different from grade 3 NET? 4. What types of labs, scans, or testing for NEC? 5. Can a NEC be surgically removed? How would you decide if, when, and how? 6. How are NEC treated medically (or nonsurgically)? 7. What treatment might you use as second-line? What is the role of liver-directed therapy? What is the role of immunotherapy? 8. What are clinical trials we should be aware of or exciting new treatments in the pipeline for NEC? 9. How are NEC monitored? What types of bloodwork or tests should be done and how often should they be done? 10. What words of hope would you like to leave the neuroendocrine cancer community with? For more information, visit https://www.lacnets.org/podcast/25. Play Video Play Video 40:58 Episode 24 - What to Know About Grade 3 Well-Differentiated NETs ABOUT THIS EPISODE What are grade 3 NETs and how is it different from grade 3 NEC and other types of NETs? Dr. Mohamad (Bassam) Sonbol from Mayo Clinic in Phoenix, Arizona, enlightens us on this fairly new entity, including treatment options, treatment sequencing and clinical trials. MEET DR. MOHAMAD BASSAM SONBOL Mohamad Bassam Sonbol, M.D., is an Oncologist, with special interest in neuroendocrine tumors and gastrointestinal malignancies. In addition to his clinical activities, Dr. Sonbol is active in research that focuses on investigating novel treatments including targeted therapies, immunotherapy, and other agents that could potentially help patients with neuroendocrine and gastrointestinal cancers. Dr. Sonbol focuses on the holistic treatment for cancer patients taking into consideration their medical and social aspects that have been affected by their cancer diagnosis. TOP 10 QUESTIONS 1) What are grade 3 NETs? Where are they located? How is grade 3 NETs different from other types of NETs? In particular, how is it different from grade 3 NEC? Can NET change into NEC? 2) How are grade 3 NETs found? How does one know it is grade 3? 3) What types of labs, scans, or testing is done to determine if someone has a grade 3 NET? 4) Can a grade 3 NET be surgically removed? How would you decide if, when, and how? 5) How are grade 3 NETs treated medically (or nonsurgically)? How are treatments sequenced? 6) How are the treatments different from other NETs? 7) How are grade 3 NETs monitored? What types of bloodwork or tests should be done and how often should they be done? What is the best type of scan for grade 3 NETs? 8) Can the tumors change in grade, Ki-67, and differentiation? What is the likelihood of NET changing to NEC and is there anything that can predict this or prevent this from happening? 9) What are clinical trials we should be aware of or exciting new treatments in the pipeline for grade 3 NETs? 10) What words of hope would you like to leave the NET community with? For more information, visit https://www.lacnets.org/podcast/24. 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 01:39:00 LACNETS Webinar - "Updates in High Grade Neuroendocrine Tumors" with Dr. Aman Chauhan NET expert Dr. Aman Chauhan provides an update on high grade neuroendocrine tumors and treatment decisions. *The information of this presentation is valid as of March 2022. To download a copy of Dr. Chauhan's presentation slides, go to bit.ly/slides_march2022 Speaker: Aman Chauhan, MD, Medical Oncologist, University of Kentucky's Markey Cancer Center High grade NETs resources can be found here: lacnets.org/high-grade-nets-resources To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 07:20 Patient Story - Living with High Grade Neuroendocrine Cancer A patient living and thriving with high grade neuroendocrine cancer shares her inspiring story. This video was recorded in March 2022. High grade NETs resources can be found here: lacnets.org/high-grade-nets-resources To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 05:44 Patient Story: NET Patient shares about living with high grade neuroendocrine cancer (LACNETS) NET Patient Cindy shares about living with high grade neuroendocrine cancer. November 17, 2020 To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 01:41:35 LACNETS Webinar: Focus on Immunotherapy & High-Grade NETs with Dr. Neena Vijayvergia Webinar: Focus on Immunotherapy & High-Grade NETs with Dr. Neena Vijayvergia Recorded on November 17th, 2020 Speaker: Neena Vijayvergia, MD, Hematology/Oncology, Fox Chase Cancer Center Learn more here: www.LACNETS.org Audio/Video - www.TVPlive.com < Back to Topics Next Topic >

PRRT < Back to Topics PRRT (Peptide Receptor Radionuclide Therapy) Educational Videos Play Video Play Video 19:58 10. Navigating Targeted Therapies & PRRT • Dr. Jennifer Chan • 2026 NCF Conference In this session from the Neuroendocrine Cancer Foundation’s 2026 Virtual Annual Patient Conference, Dr. Jennifer Chan, medical oncologist at Dana-Farber Cancer Institute, presents “Navigating Targeted Therapies and PRRT.” Dr. Chan explains how peptide receptor radionuclide therapy, or PRRT, and molecularly targeted therapies are used to treat advanced neuroendocrine tumors. She discusses how PRRT targets somatostatin receptor-positive tumors, how Lutetium-177 dotatate works, when PRRT may be considered, and what patients should know about treatment schedule, radiation safety precautions, benefits, and possible side effects. This presentation also covers targeted therapy options for neuroendocrine tumors, including everolimus, cabozantinib, sunitinib, and belzutifan for patients with VHL disease. Dr. Chan explains how these treatments work, what side effects patients may experience, and why treatment decisions should be individualized based on tumor type, somatostatin receptor status, disease burden, symptoms, medical history, quality of life, and multidisciplinary input. Learn more about the Neuroendocrine Cancer Foundation and access patient resources at www.NCF.net. For more information about this conference, visit https://www.ncf.net/events/2026conference This video is for educational purposes only and is not a substitute for professional medical advice. Please consult your medical team with questions about your individual care or treatment. #NeuroendocrineCancer #NeuroendocrineTumors #NETCancer #NETs #PRRT #PRT #Lutetium177Dotatate #TargetedTherapy #Everolimus #Cabozantinib #Sunitinib #DanaFarber #JenniferChan #NCF #PatientConference #CancerEducation Play Video Play Video 15:19 Preparing for PRRT: What Patients Need to Know • Dr. Muzahir • 2026 Patient Conference in Atlanta In this video, Dr. Muzahir explains the role of nuclear medicine in peptide receptor radionuclide therapy, or PRRT, for patients with neuroendocrine tumors. The presentation discusses how PRRT uses a targeted treatment called lutetium dotatate to deliver radiation directly to neuroendocrine tumor cells that express somatostatin receptors. Dr. Muzahir also explains the concept of theranostics, which combines diagnosis and therapy to help guide personalized cancer care. Topics include: • What PRRT is and how it works • The role of nuclear medicine in neuroendocrine tumor care • How lutetium dotatate targets somatostatin receptors • The meaning of theranostics • The importance of a multidisciplinary care team • What patients may expect during treatment • Possible side effects and long-term risks • Radiation safety for patients, caregivers, and families This talk is helpful for patients, caregivers, and anyone interested in learning more about PRRT and nuclear medicine treatment options for neuroendocrine tumors. ___________________________________________________________ ABOUT Neuroendocrine Cancer Patient Education Conference Atlanta, GA May 16, 2026 The Neuroendocrine Cancer Foundation (NCF) hosted a free, in-person educational conference at the Emory Winship Cancer Institute 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 neuroendocrine cancer 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. For more information, visit https://www.ncf.net/events/atlanta. ___________________________________________________________ #PRRT #PeptideReceptorRadionuclideTherapy #NeuroendocrineTumors #NETs #NuclearMedicine #Theranostics #LutetiumDotatate #SomatostatinReceptors #CancerTreatment #CancerCare #PatientEducation #EmoryHealthcare #VanderbiltHealth #Lu-177 #Lu-177DOTATATE #BetaRays #Radiation #SSTRReceptors #Radioisotope #SSTR #peptides #SomatostatinAnalog Play Video Play Video 14:38 Understanding Your Scans and PRRT: How Imaging Guides Treatment • Dr. Cole • Atlanta Conference In this video, Dr. Heather Cole from Vanderbilt Health explains the important role imaging plays in diagnosing and treating neuroendocrine cancer and neuroendocrine carcinoma (NEC). The talk covers how different scans help doctors understand where tumors are located, how they behave, and which treatment options may be most appropriate. Dr. Cole discusses common imaging tools such as CT, MRI, and PET/CT, including how each scan is used in staging, surgical planning, and therapy decisions. She also explains how molecular imaging can help identify somatostatin receptors and guide treatments like peptide receptor radionuclide therapy or PRRT. Topics include: • What neuroendocrine neoplasms are • Why imaging is important in neuroendocrine cancer care • The roles of CT, MRI, and PET/CT • How imaging helps guide treatment decisions • When PRRT or FDG PET may be considered _____________________________________________________________________________ ABOUT Neuroendocrine Cancer Patient Education Conference Atlanta, GA May 16, 2026 The Neuroendocrine Cancer Foundation (NCF) hosted a free, in-person educational conference at the Emory Winship Cancer Institute 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 neuroendocrine cancer 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. For more information, visit https://www.ncf.net/events/atlanta. _____________________________________________________________ #NeuroendocrineNeoplasms #NeuroendocrineTumors #NENs #NETs #CancerImaging #PETCT #MRI #CTScan #PRRT #VanderbiltHealth #DOTATATE #Gallium-68 #Copper64 Play Video Play Video 15:02 08. PRRT: Current & New Trends • Holly Thompson, MD, MPH • @NCFCancer Play Video Play Video 20:02 5. PRRT for NETs • Dr. Boris Naraev • 2025 NET Cancer Day Symposium Dr. Boris Naraev speaks about "PRRT for NETs" at the 2025 NET Cancer Day Symposium. The 2025 NET Cancer Day Symposium was a collaboration between the Neuroendocrine Cancer Foundation and the Sylvester Comprehensive Cancer Center, part of UHealth – University of Miami Health System, in Miami, Florida, on Sunday, November 9th. #netcancer #neuroendocrinecancer #netawareness #rarecancer #cancercommunity #advocacy #ncf #lacnets #AboveAndBeyondAward #netcancerday #cancereducation #netsupport 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 12:35 13. "What Matters About PRRT: What is PRRT & How Does It Work" • Dr. Carreras • @NCFCancer "What Matters About PRRT: What is PRRT & How Does It Work" 2025 Neuroendocrine Cancer Foundation Annual Patient Conference Cecilia Carreras Valazquez, MD Nuclear Medicine Hospital Angeles Lomas Play Video Play Video 22:05 14. What Matters About PRRT: Preventing and Managing Toxicities & Latest Advances • Aman Chauhan, MD "What Matters About PRRT: Preventing and Managing Toxicities & Latest Advances" 2025 Neuroendocrine Cancer Foundation Annual Patient Conference Aman Chauhan, MD Medical Oncologist University of Miami Sylvester Cancer Center @NCFCancer Play Video Play Video 16:42 "Alpha vs Beta PRRT: Which is for me?” • Martin Auerbach, MD, Nuclear Medicine, UCLA • 2024 Dr. Martin Auerbach speaks at the 2024 LACNETS NET Cancer Day Symposium. 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 18:21 "The Nuts & Bolts of PRRT" • Linda Gardner, RN • 2023 NET Cancer Day Symposium @NCFCancer "The Nuts & Bolts of PRRT" • Linda Gardner, RN • 2023 NET Cancer Day Symposium • Santa Monica, CA • @NCFCancer Speaker: Linda Garner, RN UCLA For more information, visit LACNETS.org. Play Video Play Video 20:50 "The Latest in PRRT" • Martin Auerbach, MD • 2023 NET Cancer Day Symposium @NCFCancer "The Latest in PRRT" • Martin Auerbach, MD • 2023 NET Cancer Day Symposium • Santa Monica, CA @NCFCancer Speaker: Martin Auerbach, MD Nuclear Medicine, UCLA For more information, visit LACNETS.org. Play Video Play Video 19:06 "Understanding PRRT" Dr. Erik Mittra • 2024 #LACNETS Patient Conference 9) Understanding PRRT • 2024 Neuroendocrine Tumor Patient 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. #LACNETS #neuroendocrinecancer #clinicaltrials #lungcancer #NETcancer #Letstalkaboutnets For more information, visit LACNETS.org. 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 50:49 Episode 10: PRRT (Part III) ABOUT THIS EPISODE How can patients make decisions about where, when, and what kind of PRRT to receive? How does PRRT in the USA differ from other parts of the world? Why does each institution have different post-PRRT radiation safety precautions? What is the patient experience with traveling after PRRT? Internationally recognized patient advocate and President of NorCal CarciNET Community, Josh Mailman, answers ten common questions about the past, present, and future of PRRT. Josh, whose journey has taken him from PRRT recipient to a seat on the Nuclear Regulatory Commission Advisory Committee, shares from his years of patient advocacy work in nuclear medicine and clarifies some misunderstandings about PRRT. MEET JOSH MAILMAN, MBA Josh Mailman was diagnosed with PNET in 2007. Josh is an internationally recognized advocate for NET patients as well as an advocate for integrative oncology and nuclear medicine and molecular imaging. He is the inaugural chair of the Society of Nuclear Medicine and Molecular Imaging’s (SNMMI) Patient Advocacy Advisory Board, a member of The Education and Research Foundation for Nuclear Medicine and Molecular Imaging (ERF) Board, acting COO the World Association of Radiopharmaceutical and Molecular Therapy (WARMTH), and president of NorCal CarciNET Community, one of the largest NET patient communities in the United States. In addition, he is a member of National Cancer Institute’s GI Steering Committee after being a member of the NCI Task Force on Neuroendocrine Tumors for seven years. Josh is also a member of the Board of Directors and Executive Committee of the Neuroendocrine Tumor Research Foundation(NETRF). He sits as the single patient member of NETRF's Scientific Advisory Committee which reviews research applications for private funding by this 501c3 foundation. In 2015, Josh was honored with the Warner Advocacy Award, given annually by Novartis Oncology Patient Advocacy and The NET Alliance. The award recognizes an individual for leadership and advocacy for neuroendocrine patients. In the same year, Josh was given the SNMMI’s President’s Award for his work on behalf of patients in the nuclear medicine field. Josh is a former executive board member of the Society for Integrative Oncology (SIO)and was named SIO Patient Advocate of Year in 2010. Josh is a frequent and sought-after speaker for his passionate and highly informed perspective on how patients can effectively participate in the process of working with key stakeholders to improve treatments and advance progress for better quality of life and eventual cures. TOP 10 PRRT QUESTIONS 1. PRRT was available for years outside the USA before it was available here. Why did it take so long before PRRT was available in the US? 2. How does PRRT differ in the USA versus in Europe and other parts of the world? 3. Why is PRRT so much more expensive in the US vs other places in the world? Is it covered by insurance / for lung NETS? 4. Now that Lutathera is more widely available, how does one go about deciding where to get treatment? (Does it matter if I get it locally vs a “NET center?”) / Does it matter where you go to receive your PRRT treatment? (Do I need to be going to a NET center to receive PRRT treatment?) 5. Some people are told they can only receive 4 doses of PRRT in their lifetime. What are your thoughts about this? Do we always need 4 treatments? / How might patients decide when to have repeat PRRT versus having another type of PRRT or another treatment? What might you need to consider as a patient and advocate? 6. What is the patient experience regarding traveling after PRRT? (Do I need to worry about setting off security alarms at airports? What about other security alarms such as at event venues or courthouses?) 7. How might patients go about deciding between various PRRT options (i.e. alpha versus beta)? What might you consider as a patient and as an advocate? 8. Some people are told that PRRT should be saved as a “last resort.” How would you respond? 9. What is your role as a member of the Nuclear Regulatory Commission’s Advisory Committee on the Medical Use of Isotope? 10. Talk a little bit about the release criteria and radiation safety precautions following Lutathera. Why is there a range of what patients are told? How does the process & procedure of radiation safety in the USA differ in the USA vs Europe and other parts of the world? For more resources and a transcript of this episode, visit https://www.lacnets.org/podcast10. Play Video Play Video 26:22 Episode 9: PRRT (Part II) ABOUT THIS EPISODE Who is eligible for PRRT? What are the side effects? Should somatostatin analogues be continued? Can PRRT be repeated when there is disease progression? NET expert and Nuclear Medicine Physician Dr. Martin Auerbach of UCLA Health answers 10 common questions about the decision-making process of PRRT. Dr. Auerbach addresses how to manage side effects, carcinoid crisis, labs, and post-PRRT imaging. MEET DR. MARTIN AUERBACH Dr. Auerbach is the Director of Nuclear Medicine at the Westwood and Santa Monica UCLA Hospitals, and Associate Professor in Nuclear Medicine, Division of Pharmacology, at the David Geffen School of Medicine at UCLA. Apart from serving as attending physician in Nuclear Medicine at the UCLA Santa Monica and Westwood Hospital, active research includes clinical studies investigating the role of molecular imaging with PET/CT to gain insights into malignant disease processes, and monitoring of cancer treatment. TOP 10 PRRT QUESTIONS 1. Who is eligible for PRRT? When considering PRRT, is there a minimum or maximum tumor size? What is the effect if a patient receives half the planned dose or a delay in receiving a dose due to low counts? 2. How do you decide on doses of radioactive agents in PRRT? Do they consider the individual’s weight or does everyone get the same dose? 3. What are the side effects of PRRT and how are they managed? 4. Do you continue SSA with PRRT and if so when should one receive it? 5. Can people have carcinoid crisis with PRRT? If so, how is this treated? 6. When or how often are labs done? Which labs and what are you looking for? 7. When do you do imaging? Which imaging to you do? 8. When would you expect to see a response with PRRT and what is the statistics about the shrinkage or response that is expected? 9. For those who have received 4 doses of Luthatera, what happens if/when there is progression, can PRRT be repeated? Can people have more than 4 doses of Lutathera? 10. What is the difference between alpha and beta PRRT? How would you decide between the alpha or beta PRRT? For more resources and a transcript of this episode, visit https://www.lacnets.org/podcast9. Play Video Play Video 49:18 Episode 8: PRRT (Part 1) ABOUT THIS EPISODE Curious about PRRT? Wondering what a PRRT day looks like, what side effects you might experience, and what precautions you should take? NET expert and Administrative Nurse Lindy Gardner of UCLA Health answers 10 common questions about the before, during and after of PRRT. Lindy explains how to prepare for your treatment day, what to expect on the day of the treatment, and radiation precautions following PRRT including travel, vaccinations, and fertility and breastfeeding recommendations. MEET LINDY GARDNER, MSN Lindy Gardner, MSN is the lead nurse for the UCLA Peptide Receptor Radionuclide Therapy (PRRT) program. She is one of the authors of the NANETS/SNMMI Procedure Standard for Somatostatin Receptor–Based Peptide Receptor Radionuclide Therapy with 177Lu-DOTATATE. Lindy earned a Bachelors of Science in Nursing from Dundee University Scotland. TOP 10 PRRT QUESTIONS 1. What can I expect on the day of PRRT infusion? What is the day like and what side effects might I experience? 2. What do I need to do to prepare for PRRT? Can I eat and drink normally the day of the treatment? 3. What are the side effects after PRRT and how are they managed? 4. How concerned should I be about the radiation I’m receiving and the long-term effects? 5. What precautions should be taken, especially with small children or pets or others in the house that might be immunocompromised? 6. Does PRRT affect fertility and are there issues with pregnancy or breastfeeding after getting PRRT? 7. How should I travel home? Do I need to sit in the back seat of the car? 8. How soon can one travel after PRRT? In particular, when can one get on a plane? 9. Do I need to sleep in a separate bed and if so, how long? 10. Am I immunocompromised after my PRRT treatment? Do I need to avoid getting vaccines and am I more susceptible to bacteria and viruses? For more resources and a transcript of this episode, visit https://www.lacnets.org/podcast8. Play Video Play Video 17:55 The Latest in PRRT • Dr. Carina Mari Aparici • 2023 LACNETS Patient Education Conference Watch "The Latest in PRRT" with Dr. Carina Mari Aparici. This presentation is part of the 2023 LACNETS Neuroendocrine Tumor Patient Education Conference held on June 17, 2023. 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 01:33:28 LACNETS Webinar: "NET Imaging: Scans & Reports" with NET Radiologist Dr. Gary Ulaner NET radiologist Dr. Gary Ulaner from Hoag Family Cancer Institute explains different scans used for NET imaging and how to understand your radiology reports. This webinar includes a presentation and live Q&A. Additional NET imaging resources can be found here: lacnets.org/imaging To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 16:32 10. The Latest in NET Imaging & PRRT (Dr. Thomas Hope) Radiologist Dr. Thomas Hope addresses the latest in NET imaging and PRRT. Speaker: Thomas Hope, MD Radiologist, UCSF 2022 LACNETS NET Patient Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 01:29:42 LACNETS Webinar - "Future of PRRT" with Dr. Erik Mittra Nuclear Medicine Physician Dr. Erik Mittra provides an update on PRRT. Plus, hear from a NET patient who has received multiple rounds of PRRT treatments. This webinar was recorded on April 19, 2022. Speaker: Erik S. Mittra, MD, PhD Nuclear Medicine Physician Oregon Health & Science University Additional PRRT resources can be found here: https://www.lacnets.org/prrt To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 06:41 NET Patient Story: Re-treatment with PRRT (salvage PRRT) A patient living with neuroendocrine cancer shares his experience undergoing multiple rounds of PRRT treatments. This video was recorded in April 2022. Additional PRRT resources can be found here: https://www.lacnets.org/prrt To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 01:39:40 LACNETS Webinar - "Exciting Advances in NET Management: Cu64 DOTATATE & Alpha PRRT” (disclaimer) Join LACNETS & Dr. Delpassand for his presentation on "Exciting Advances in NET Management: Cu64 DOTATATE & Alpha PRRT.” Recorded on March 16th, 2021. Speaker: Ebrahim S. Delpassand, MD, FACNM, Chairman and Medical Director, Excel Diagnostics and Nuclear Oncology Center To learn more about LACNETS, visit www.LACNETS.org. Audio/Video - www.TVPlive.com Play Video Play Video 19:16 08. Radiation Safety with PRRT (Dr. Hope) - 2021 LACNETS Virtual Conference 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS Presenter: Tom Hope, MD Radiologist UCSF For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 07:35 Patient Story: NET Patient shares his experience with PRRT NET Patient Denny shares his experience with PRRT. April 13th, 2021 To learn more about the LACNETS , visit www.LACNETS.org. Play Video Play Video 01:34:37 LACNETS Webinar: “PRRT: 3 years after its introduction in the US" with Dr. Lisa Bodei Join LACNETS & Dr. Lisa Bodei for her presentation on "PRRT: 3 years after its introduction in the US." Recorded on April 13th, 2021. Speaker: Lisa Bodei, MD, PhD Nuclear Medicine Physician Memorial Sloan Kettering Cancer Center To learn more about LACNETS, visit www.LACNETS.org. Audio/Video - www.TVPlive.com Play Video Play Video 07:10 Patient Story: NET Patient shares her experience with Alpha PRRT NET Patient DeAnne shares her experience with Alpha PRRT. March 16th, 2021 To learn more about the LACNETS , visit www.LACNETS.org. Play Video Play Video 05:54 Patient & Caregiver Story: NET patient & caregiver share about their experience with PRRT (LACNETS) NET patient Shaunie and her daughter/advocate Heather share about their experience with PRRT. June 20, 2020 To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 07:02 Patient Story: NET Patient shares her experience with PRRT (LACNETS) NET Patient Kelli Edwards shares her experience with PRRT. April 24, 2020 To learn more about LACNETS, visit www.LACNETS.org. Load More PRRT Patient and Caregiver Stories Play Video Play Video 05:52 Patient Story: NET Patient shares his experience with PRRT (LACNETS) NET Patient Tom Bajoras shares his experience with PRRT. April 24th, 2020 To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 07:02 Patient Story: NET Patient shares her experience with PRRT (LACNETS) NET Patient Kelli Edwards shares her experience with PRRT. April 24, 2020 To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 05:54 Patient & Caregiver Story: NET patient & caregiver share about their experience with PRRT (LACNETS) NET patient Shaunie and her daughter/advocate Heather share about their experience with PRRT. June 20, 2020 To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 07:10 Patient Story: NET Patient shares her experience with Alpha PRRT NET Patient DeAnne shares her experience with Alpha PRRT. March 16th, 2021 To learn more about the LACNETS , visit www.LACNETS.org. Play Video Play Video 07:35 Patient Story: NET Patient shares his experience with PRRT NET Patient Denny shares his experience with PRRT. April 13th, 2021 To learn more about the LACNETS , visit www.LACNETS.org. Play Video Play Video 06:41 NET Patient Story: Re-treatment with PRRT (salvage PRRT) A patient living with neuroendocrine cancer shares his experience undergoing multiple rounds of PRRT treatments. This video was recorded in April 2022. Additional PRRT resources can be found here: https://www.lacnets.org/prrt To learn more about LACNETS, visit www.LACNETS.org. < Back to Topics Next Topic >

Privacy Policy Last Updated: March 23, 2026 Objective This policy applies to all personal data processing carried out by the Company and aims to inform the user about the way in which the Company processes personal data (including details of the type of personal data collected and the purpose of processing) and regarding the rights of the user in relation to their personal data. Contact Information In case a user has any questions about the Privacy Policy or would like to establish communication, the user can contact the Company through the following means: Address: 2108 N ST # 9937 Sacramento, CA 95816 Phone Number: (310) 800-2999 Email Address: info@ncf.net In addition, information about the officer in charge of processing your personal data is listed below: Company Name: Neuroendocrine Cancer Foundation referred to in this document as “Company” Identity of the Controller: Neuroendocrine Cancer Foundation Address: Email Address: info@ncf.net referred to in this document as “Email Address” Approval Your use of the Site constitutes your acknowledgment and approval of the Company's Privacy Policy and the Company’s Terms and Conditions, if any. Categories of Personal Information We Collect About You In compliance with current regulations on the protection of personal data and depending on your interaction with us, we may collect the following categories of personal information about you directly from you, from third parties, and automatically through your use of our Site. Identifiers, such as your name, postal address, telephone number, date of birth, IP address, unique online identifier, or similar identifier. Protected classifications, such as age and gender. Payment information, such as your financial account information, credit card number, debit card number, or other payment card information. Commercial Information, such as records of products or services purchased or obtained, membership records, and records of gifts. Professional information, such as the name of your employer and business title. Internet or other electronic network activity, such as your browser type and operating system; web pages you view, links you click, search history on the site, and other information regarding your interaction with an internet website, email, newsletter, or advertisement; the length of time you visit our site; and the referring URL, or the webpage that led you to our site. Geolocation data, as defined under applicable law. Inferences, such as inferences drawn to create a profile reflecting your preferences, characteristics, psychological trends, predispositions, behavior, attitudes, intelligence, abilities, or aptitudes. Sensitive personal information, as defined under applicable law, such as your precise geolocation data and financial account information. Information We Collect Directly From You. We collect personal information directly from you when you use our Service. If you sign up to receive information or services from us or if you register for an account on our site, we may collect your contact information (e.g., name, home address, telephone number, or email address) and account login credentials. If you contact us, we may collect your contact information, as well as the contents of a message or attachments that you may send to us, and other information that you choose to provide. Information We Collect From Other Sources. We may collect personal information from our parent, affiliate, and other related entities, as well as from third parties that perform functions on our behalf, such as our advertising and analytics partners. When you sign in to our Service using a social media account, you give permission to the social media platform to share your personal information with us. Information We Collect Automatically. We, and our third-party business partners, automatically collect personal information when you use our Service using cookies, pixel tags, clear GIFs, or similar technologies. This may include information such as your IP address and the types of personal information described above as “Internet or other electronic network activity.” This may also include information about your location if you give us permission to do so (“Geolocation Data”) by setting your device to allow for location tracking/data or by opting into browser prompts that ask for location tracking. You can enable or disable location services when you use our Service at any time, through your device settings. Please review our section below on Cookies for additional information regarding our use of cookies and related technologies. How We Use Your Information Depending on your interaction with us, we may use the categories of personal information described above for the following business and commercial purposes: To provide our Service and fulfill your requests. We use your information to provide and maintain our Service, to process and fulfill your requests, to communicate with you about your use of our Service or changes to our Service, to respond to your inquiries, and for other customer service and business administration purposes. To improve our Service. We use your information to understand and analyze our user base and how you use the Service, to improve and enhance the Service, and to develop new products, services, features, and functionality. Identification and authentication purposes. We may use your information for identification and authentication purposes. For example, when you enter your account login ID and password to enter one of our registration or login portals, we use your login credentials to authenticate your identity. Personalization. We use your information to tailor the content and information that we may send or display to you, offer location customization, personalized help and instructions, and otherwise personalize your experience while using the Service. For example, if you allow us to collect geolocation data, we use this information to deliver content related to your specific location and identify business locations/listings around your location. Marketing and promotional purposes. We may use your information to send you news and newsletters, event updates, and to communicate with you about new features, offers, events, or products, or to otherwise contact you about information we think may be of interest to you. Research and reporting. We may use your information to administer surveys and questionnaires (online and offline) for research and reporting purposes to help us better serve individuals by learning more about their needs and the quality of the products, services, and educational information we provide. The survey responses may be utilized to determine the effectiveness of our Service, various types of communications, advertising campaigns and/or promotional activities. Combining information. We (and our third-party business partners on our behalf) may merge, co-mingle, or otherwise combine information, including your personal information, in furtherance of the purposes described above. To comply with legal obligations. We may use your information to comply with our legal obligations or to exercise or defend our rights or the rights of a third party, including complying with law enforcement or government authority requests and participating in compliance audits. To protect us and others. We may use your information where we believe it necessary to investigate, prevent, or take action regarding suspected or actual illegal activities, fraud, situations involving potential threats to the safety of any person, or to otherwise enforce this Policy, our Terms and Conditions, and the integrity of the Service. Deidentified data. We may also deidentify or anonymize your data in such a way that you may not reasonably be re-identified by us or another party, and we may use this deidentified data for any purpose permitted under applicable law. To the extent we deidentify any data originally based on personal information, we will maintain and use such data in deidentified form and will not attempt to reidentify the data. If we want to use your information for any other purpose, we will ask for your consent and use your information only when we receive your consent and then only for the purpose(s) for which consent will be granted, unless we are required by law to do otherwise. We will retain your personal information with us for an unspecified amount of time after user accounts remain idle or for as long as necessary to fulfill the purposes for which it was collected, as detailed in this Privacy Policy. Data Retention Your personal information will be held for only so long as it is necessary for the purpose for which it was originally collected, and in accordance with applicable local law. We will retain your personal information for the period necessary to fulfill the purposes outlined in this Policy. When assessing retention periods, we first examine whether it is necessary to retain the personal information collected and, if retention is required, work to retain the personal information for the shortest possible period permissible under applicable law. To determine the appropriate retention period for personal information, we consider the amount, nature and sensitivity of the personal information, the potential risk of harm from unauthorized use or disclosure of the personal information, the purposes for which we process the personal information, and whether we can achieve those purposes through other means, and the applicable legal, regulatory, tax, accounting or other requirements. How We Disclose the Information We Collect We may disclose each of the categories of personal information described above for our business and commercial purposes as follows: Related Entities. We may disclose the personal information we collect about you to our parent, affiliate, and related entities. Service Providers. We may disclose the personal information we collect about you to service providers, contractors, and agents who perform functions and business operations on our behalf, for the purposes set out above. Third Parties. We may disclose the personal information we collect about you to third-party business partners, such as entities that provide us with advertising and analytics services, as well as business partners with whom we may jointly offer products, services, or educational information or whose products or services we believe may be of interest to you. We may also disclose your personal information in the following circumstances: Business Transfers. If (i) we or our affiliates are or may be acquired by, merged with, or invested in by another company, or (ii) if any of our assets are or may be transferred to another company, whether as part of a bankruptcy or insolvency proceeding or otherwise, we may transfer the information we have collected about you to the other company. As part of the business transfer process, we may disclose certain of your information to lenders, auditors, and third-party advisors, including attorneys and consultants. In Response to Legal Process. We may disclose your personal information to comply with the law, a judicial proceeding, a court order, or other legal process, such as in response to a court order or a subpoena. To Protect Us and Others. We may disclose your personal information where we believe it is appropriate to do so to investigate, prevent, or take action regarding illegal activities, suspected fraud, situations involving potential threats to the safety of any person, violations of our Terms and Conditions, or this Policy, or as evidence in litigation in which we are involved. Aggregate and Deidentified Information. We may disclose aggregate, anonymized, or deidentified information about you for any purpose permitted under applicable law. Consent. We may disclose your personal information with your consent. Our Use of Cookies and Related Technologies When you visit the Site, the Company and third parties may store certain information on your browser, app, or device in the form of a "cookie" or similar file. The Site uses cookies and other technologies to (i) track advertising, (ii) collect traffic data from the Site, and (iii) improve the user experience when using the Site. The user should be aware that, in order to browse the Site, it is not necessary for him or her to allow the installation of cookies sent by the Site. This may only be required in relation to certain services. Most browsers allow you to manage how cookies are set and used as you’re browsing, and to clear cookies and browsing data. Also, your browser may have settings letting you manage cookies on a site-by-site basis. Most mobile devices and applications allow you to manage how similar technologies, such as unique identifiers used to identify an app or device, are set and used. For example, the Advertising ID on Android devices or Apple’s Advertising Identifier can be managed in your device’s settings, while app-specific identifiers may typically be managed in the app’s settings. Cookies. Cookies are small text files containing a string of alphanumeric characters. We may use both session and persistent cookies. A session cookie disappears after you close your browser. A persistent cookie remains after you close your browser and may be used by your browser on subsequent visits to our Site. Please review your browser’s “Help” file to learn the proper way to modify your cookie settings. Please note that if you delete or choose not to accept cookies from the Service, you may not be able to utilize the features of the Service to their fullest potential. To learn more about cookies, visit http://www.allaboutcookies.org . Clear GIFs, pixel tags, and other technologies. Clear GIFs are tiny graphics with a unique identifier, similar in function to cookies. In contrast to cookies, which are stored on your computer’s hard drive, clear GIFs are embedded invisibly on web and app pages. We may use clear GIFs (a.k.a. web beacons, web bugs, or pixel tags) to among other things, track the activities of site visitors, help us manage content, and compile statistics about Service usage. A clear GIF can collect information such as: the IP address of the computer that downloaded the page on which the tag appears; the URL of the page on which the pixel tag appears; the time the page containing the pixel tag was viewed; the browser type and language; the device type; geographic location; and, the identification number of any cookie on the computer previously placed by that server. We and our third-party business partners may also use clear GIFs in HTML emails to our customers to help us track email response rates, identify when our emails are viewed, and track whether our emails are forwarded. Analytics. We may use Google Analytics and other analytics tools to collect information regarding visitor behavior and visitor demographics on our Site. For more information about Google Analytics, please visit www.google.com/policies/privacy/partners . You can opt out of Google’s collection and processing of data generated by your use of the Services by going to http://tools.google.com/dlpage/gaoptout . Interest-based advertising. We may set tracking tools (e.g., cookies, clear GIFs) provided by third-party advertising partners on our site to collect information regarding your activities on our site (e.g., your IP address, page(s) visited, time of day) for advertising purposes. We may also share such information with third-party advertising partners. These advertising partners may use this information (and similar information collected from other websites) for purposes of delivering targeted advertisements to you when you visit non-Site related websites. This practice is commonly referred to as “interest-based advertising” or “online behavioral advertising.” If you do not want interest-based advertising, you may be able to opt-out by visiting US-based https://thenai.org/opt-out/ and www.aboutads.info/choices/ . Data Security We implement physical, technical, and organizational security measures designed to safeguard personal information. These measures are aimed to protect the personal information we collect from loss, misuse, and unauthorized access, disclosure, alteration, and destruction. Please be aware that despite our efforts, no data security measures can guarantee security. Third-Party Links Our Site may contain links to third-party websites. Any access to and use of such linked websites is not governed by this Policy but is instead governed by the privacy policies of those third-party websites. We are not responsible for the information practices of such third-party websites, and we encourage you to review the privacy policies of any third-party sites you choose to visit. Children's Privacy At the Company, we recognize the importance of protecting the privacy of children. Our Service is not intended for children or minors under the age of sixteen years. Accordingly, we do not store information from minors under the age of sixteen years. If you believe that a child has submitted personal information to us, please contact us at our Email Address and we will take reasonable steps to delete the information. We do not knowingly “sell” or “share” the personal information of children under the age of 16. Additional Disclosures Under Applicable Laws You may have certain rights regarding our processing of your personal information under applicable local law. If our processing of your personal information is governed by such laws, this section provides you with additional information regarding your rights and our processing of your personal information under applicable local law. We may disclose each of the categories of personal information described above for our business and commercial purposes. We may “sell” or “share” each of the categories of personal information described above for cross-context behavioral advertising (as those terms are defined under applicable local law). We do not disclose your sensitive personal information for purposes other than permitted under applicable local law. MARKETING COMMUNICATIONS We may send periodic promotional emails to you. You may opt-out of promotional emails by following the opt-out instructions contained in the email. Please note that it may take up to 10 business days for us to process opt-out requests. If you opt-out of receiving promotional emails, we may still send you emails about your account or any services you have requested or received from us. YOUR PRIVACY CHOICES AND RIGHTS Depending on the jurisdiction in which you live, you may have the following rights under applicable local law: Right to request access and a copy of your personal information and information relating to how it is processed; Right to request deletion of your personal information; Right to request the correction or update of the personal information we hold about you; Right to opt-out of “sales” of your personal information and “sharing” of your personal information for cross-context behavioral advertising purposes (as these terms are defined under applicable law) Right to opt-out of targeted advertising; Right to limit our use of your sensitive personal information; Right to not be unlawfully discriminated against for exercising your rights. These rights may be limited or denied in some circumstances. For example, we may retain your personal information where required or permitted under applicable law. You may also opt-out of our “sale” or “sharing” of your personal information through privacy preference signals recognized under applicable local law, such as the Global Privacy Control (GPC), but please note that this signal will be linked to your browser only. For more information on the GPC and how to use a browser or browser extension incorporating the GPC signal, see https://globalprivacycontrol.org/ . VERIFICATION PROCESS In order to protect your information, we will confirm a requestor’s identity before responding to any request. To start the process, you must provide your name and email. We will ask you at least one question, and you must reply by email with the correct answer for each question based on your previous interaction with us. If we still cannot verify your identity as required by applicable laws, we will let you know and may ask additional questions. Otherwise, we will acknowledge your request and contact you later with our full response. We will only send verification questions from our Email Address. Before sending a verification response, please double-check the email address. If you receive an email that appears to be from us but is not from our verification email address listed above, do not respond. Any information we gather through this process will only be used for consumer verification, security procedures, or fraud prevention. We will delete any verification information as soon as practical after processing your request. AUTHORIZED AGENTS You may designate an authorized agent to exercise your rights under applicable laws on your behalf. Pursuant to applicable laws: You must provide the authorized agent written permission to exercise your rights under applicable laws on your behalf. We may deny a request from an authorized agent on your behalf if the authorized agent does not submit proof that he, she, or it has been authorized by you to act on your behalf if we request such proof, as permitted by applicable laws. Even if you use an authorized agent to exercise your rights under applicable laws on your behalf, pursuant to applicable laws we may still require that you verify your own identity directly to us. FINANCIAL INCENTIVES We do not offer financial incentives to collect personal information, and we will not discriminate against you if you exercise any of the rights provided by applicable laws set forth in this Privacy Policy. Please note that a legitimate denial of a request for information, deletion, or to opt-out is not discriminatory, nor is charging a fee for excessive or repetitive consumer requests as permitted by applicable laws. APPEALS You may have a right to appeal a decision we make relating to requests to exercise your rights under applicable local law. To appeal a decision, please contact us at our Email Address. ADDITIONAL CALIFORNIA PRIVACY RIGHTS California Civil Code Section § 1798.83 permits users of our website that are California residents to request certain information regarding our disclosure of personal information to other parties for their direct marketing purposes. To make such a request, please send an email to our Email Address with the subject “Shine the Light Request.” Data Subject Access Requests You have certain data protection rights in certain circumstances. Please contact us if you would like to exercise any of these rights. Withdraw their consent at any time. Users have the right to withdraw consent where they have previously given their consent to the processing of their Personal Data. Object to processing of their Data. Users have the right to object to the processing of their Data if the processing is carried out on a legal basis other than consent. Access their Data. Users have the right to learn if Data is being processed by the Owner, obtain disclosure regarding certain aspects of the processing and obtain a copy of the Data undergoing processing. Verify and seek rectification. Users have the right to verify the accuracy of their Data and ask for it to be updated or corrected. Restrict the processing of their Data. Users have the right to restrict the processing of their Data. In this case, the Owner will not process their Data for any purpose other than storing it. Have their Personal Data deleted or otherwise removed. Users have the right to obtain the erasure of their Data from the Owner. Receive their Data and have it transferred to another controller. Users have the right to receive their Data in a structured, commonly used and machine readable format and, if technically feasible, to have it transmitted to another controller without any hindrance. Lodge a complaint. Users have the right to bring a claim before their competent data protection authority. The deletion of some data shall not be carried out where it may cause damage to the legitimate rights or interests of third parties, or where there is a legal obligation to retain the data. The data owner user may at any time exercise the rights of access, rectification, cancellation, opposition, limitation of processing, portability, confidentiality and deletion of his/her personal data. The exercise of these rights may be carried out by the user him/herself by means of an email addressed to our Email Address, or by any of the methods provided for in the applicable regulations referred to above. The Company may request the data necessary to validate the identification of the data owner. Changes to This Policy? This Policy is current as of the Last Updated date set forth above. We may change this Policy from time to time, so please be sure to check back periodically. If we make any changes to this Policy that materially affect our practices with regard to the information we have previously collected about you, we will endeavor to provide you with notice in advance of such change by highlighting the change on the Site. Contact Us If you have any questions, comments, concerns, or complaints regarding your personal information or our privacy practices, please contact us at our Email Address.

NET Groups & Organizations PATIENT ADVOCACY ORGANIZATIONS AMEND USA (Association for Multiple Endocrine Neoplasia Disorders USA) is an MEN patient advocacy organization. We’re here to connect those who are impacted by MEN disorders–patients, family, friends, and providers with useful resources and cultivate community across all of those impacted by and interested in learning more about MEN disorders. We also actively support research on MEN disorders to improve the quality of life of those with MEN disorders and to eventually find a cure for MEN. Learn more, visit https://amendusa.org/ . The Healing NET Foundation mission: To optimize the care of those with neuroendocrine cancer through the education of and collaboration among physicians, health care providers, patients, and caregivers. Healing NET offers free downloadable guides for patients, healthcare professionals and high grade neuroendocrine tumors: Navigating the NET Patient Journey Neuroendocrine Tumors: A Primer for Healthcare Professionals High-Grade Neuroendocrine Cancers Visit www.thehealingnet.org for more information. The mission of the Neuroendocrine Tumor Research Foundation (NETRF) is to fund research to discover cures and more effective treatments for neuroendocrine cancers. To achieve rapid discovery of cures, the NET Research Foundation directs its donations to fund breakthrough scientific research of neuroendocrine cancers. Click here to complete the request form for the NETRF Guide for NET Patients & Families. Learn more: www.NETRF.org NorCal CarciNET is a patient support group in Northern California. Their mission is to help those with neuroendocrine tumors and carcinoid to share challenges and experiences, learn about prognosis and treatments, find information, and improve communications between the medical community, patients and caregivers. For more information: www.norcalcarcinet.org The Neuroendocrine Cancer Awareness Network (NCAN) is a non-profit organization dedicated to raising awareness of Neuroendocrine Cancer, providing support for caregivers and people with NETs, and funding for NET cancer research. Since 2003, it has been their mission, or as they like to say, their passion, to educate and support the NET community as a whole. To learn more, visit www.netcancerawareness.org/patient-info . The International Neuroendocrine Cancer Alliance’s mission is to be the global advocate for neuroendocrine cancer patients. INCA provides NET patient information packs in 11 languages for patients, health professionals, and anyone wanting to better understand NETs. Go to incalliance.org to learn more. The Carcinoid-NeuroEndocrine Tumour Society (CNETS) – Canada was formed in 2007 to assist the Canadian community, primarily patients, with this type of disease. For more information, visit cnets.ca ; check out the NET reference guide. Neuroendocrine Cancer UK is a UK wide charity set up to help, inform and guide anyone affected by Neuroendocrine Cancer. To learn more, visit https://www.neuroendocrinecancer.org.uk/ . Association for Multiple Endocrine Neoplasia Disorders (AMEND-UK) - A patient group set up in 2002 to support and inform anyone affected by or interested in multiple endocrine neoplasia disorders and their associated endocrine tumors. Click here to download the AMEND guide to starting a family. MEDICAL SOCIETY The North American Neuroendocrine Tumor Society (NANETS) is dedicated to educating medical professionals on the diagnosis and treatment of NET disease and supporting research and innovation in the field. While NANETS does not provide direct patient education, patients may help further NET education of medical professionals by sharing the organization's educational meetings and NET guidelines with their providers. NANETS provides the following educational programs and resources for medical providers: Regional NET education programs Monthly virtual education programs Annual NET Medical Symposium NETCAST podcast NET Guidelines to support the treatment and management of NET For patient resources, visit NANETS Patient Resources. OTHER PRRTinfo.org is a site for patients considering PRRT (Peptide Receptor Radionuclide Therapy) treatment in Germany written by patients for patients. www.PRRTinfo.org Inspired by responses to the Carcinoid Impact Survey, The About Carcinoid Community was created to connect people who are living with Carcinoid Syndrome. Ask questions, receive answers, and access support tools all in one online community. Learn more here: www.aboutcarcinoid.com Ronny Allan, Patient advocate and blogger - International Awareness of Neuroendocrine Cancer and associated issues. Supporting and helping Neuroendocrine Cancer Patients. Learn more: ronnyallan.net DRLC’s Cancer Legal Resource Center (CLRC) was founded in 1997 to address the legal issues faced by people with cancer, unique in the larger disability community, and is committed to providing information and resources about cancer-related legal issues to members of the cancer community across the nation. CLRC is the only national dedicated center for patients, survivors, caregivers, and health care professionals to access confidential cancer-related legal information and resources at no cost. More info here: www.cancerlegalresources.org . Triage Cancer provides education on legal and practical issues that may impact individuals diagnosed with cancer and their caregivers. Triage Cancer provides education on issues related to work, insurance, disability benefits, finances, estate planning, medical decision-making, and more. Offers free in-person and online educational events, materials, animated videos, and state-specific resources. Provides free one-on-one help to assist individuals understand their options and possible next steps, as well as CancerFinances.org , which helps people navigate finances after cancer. For more information, visit TriageCancer.org . American Cancer Society Personal Health Manager - This organizational portfolio for newly diagnosed patients – with information tailored to their type of cancer – can help patients and caregivers make educated health decisions and get connected to local resources and services. bit.ly/ACS_Resource (Free Personal Health Manager kit for patients) National Comprehensive Cancer Network - Guidelines for Patients Click here to download NCCN Guidelines for Patients. Our Cancer Stories draws inspiration from the real-life accounts of individuals who have been affected by cancer. Access stories from our database according to your needs, stage or location, and learn from and be empowered by the experience of hundreds of patients and survivors. For more information, visit ourcancerstories.com.