Access valuable resources and information about PRRT treatment options for neuroendocrine cancer to support your health journey. Essential Resources for PRRT in Neuroendocrine Cancer EDUCATIONAL WEBINARS Navigating Targeted Therapies & PRRT • Dr. Jennifer Chan • 2026 NCF Conference June 20, 2026 Download the Presentation Slides Here >>> 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. Watch here Preparing for PRRT: What Patients Need to Know • Dr. Muzahir • 2026 Patient Conference in Atlanta May 16, 2026 Download the Presentation Slides Here >>> 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. Watch here Understanding Your Scans and PRRT: How Imaging Guides Treatment • Dr. Cole • Atlanta Conference May 16, 2026 Download the Presentation Slides Here >>> 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 Watch here "Understanding Alpha & The Evolving PRRT Landscape" Sep 22, 2025 Download the Presentation Slides Here >>> 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. Watch here "PRRT Nurse's Perspective: What to Expect With PRRT" March 7, 2025 Click here to download the transcript >>> Download the Presentation Slides Here >>> 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. Watch here "What Matters About PRRT: What is PRRT & How Does it Work" - 2025 NCF Patient Conference June 20, 2025 Watch here "What Matters About PRRT: Preventing and Managing Toxicities & Latest Advances" 2025 NCF Patient Conference June 20, 2025 Watch here "Understanding PRRT" - 2024 LACNETS Neuroendocrine Tumor Patient Conference June 15, 2024 Watch here LACNETS Educational Event January 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. Watch here "The Latest in PRRT" with Carina Mari Aparici, MD 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. Watch here "What's New in PRRT" with Amir Iravani, MD Nuclear Medicine Physician and Theranostics Director at Fred Hutchinson Cancer Center, Dr. Amir Iravani, shares 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. Watch here "The Latest in NET Imaging & PRRT" with Thomas Hope, MD NET expert and radiologist Dr. Thomas Hope of UCSF addresses the latest in NET imaging and PRRT. Watch here "Future of PRRT" with Erik S. Mittra, MD, PhD 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. Watch here "Exciting Advances in NET Management: Cu64 DOTATATE & Alpha PRRT" with Ebrahim S. Delpassand, M.D., F.A.C.N.M. Nuclear medicine specialist Dr. Delpassand provides an update on the exciting advances in NET Management including Cu64 DOTATATE & Alpha PRRT. Watch here Click Here For Our Full PRRT Video Playlist READ Radioligand Therapy and Sequencing in Gastroenteropancreatic Neuroendocrine Tumors: A Patient Perspective Review This review looks at the factors that influence patients’ decisions about radioligand therapy, how they feel about when it should be used in their care, the challenges they may face in accessing this treatment, and the disparities—such as those related to race or geography—that can affect access to high-quality care. NETTER-2 Study Results: Looking Beyond The Headlines New Article: Sequencing of Somatostatin-Receptor–Based Therapies in Neuroendocrine Tumor Patients This is an excellent review article giving a thorough overview of the evidence behind somatostatin receptor targeted therapies, which includes long-acting somatostatin analogues (SSAs) octreotide LAR and lanreotide, and radiolabeled SSAs, otherwise known as PRRT. The article offers insights regarding optimal patient selection, assessment of benefit versus risk, and treatment sequencing. PRRT PATIENT/CAREGIVER STORIES Patient Story: NET Patient shares his experience with PRRT (LACNETS) Play Video Patient Story: NET Patient shares her experience with PRRT (LACNETS) Play Video Patient & Caregiver Story: NET patient & caregiver share about their experience with PRRT (LACNETS) Play Video Patient Story: NET Patient shares her experience with Alpha PRRT Play Video PRRT Patient/Caregiver Stories Watch Now Share Whole Channel This Video Facebook Twitter Pinterest Tumblr Copy Link Link Copied Share Channel Info Close PODCAST What is PRRT? How is it different from the more commonly used radiation treatment? What are the possible side effects? Dr. Riham El Khouli from the University of Kentucky in Lexington discusses common questions and concerns about PRRT and shares some of the latest advances. Listen here Administrative Nurse Lindy Gardner of UCLA Health answers 10 common questions about the before, during and after of PRRT. Listen here Nuclear Medicine Physician Dr. Martin Auerbach of UCLA Health answers 10 common questions about the decision-making process of PRRT. Listen here Patient advocate Josh Mailman answers ten common questions about the past, present, and future of PRRT. Listen here BLOG POSTS Read here Read here Read here READING MATERIALS Detectnet Patient Brochure by Curium Download here 'Alpha Radioligand Therapy in Neuroendocrine Neoplasms: Current Landscape and Spotlight on RYZ101' Download here Explore PRRT Clinical Trials in our Clinical Trials Guide Explore NANETS NET GUIDELINES BY TOPIC 2017 (Joint with SNMMI) Appropriate Use Criteria for Somatostatin Receptor PET Imaging in Neuroendocrine Tumors 2020 NANETS/SNMMI Consensus Statement on Patient Selection and Appropriate Use of 177Lu-DOTATATE Peptide Receptor Radionuclide Therapy Click here for Imaging Resources This is for informational use only. Neuroendocrine Cancer Foundation is not endorsing or recommending any particular treatment or trials. Neuroendocrine Cancer Foundation encourages you to discuss your individual needs and options with your medical team. For more information about available clinical trials, go to www.clinicaltrials.gov .

Learn about functional NETs, the hormones they produce, and the symptoms they can cause. Explore resources for symptom management and treatment! Understanding Functional NETs and Their Symptoms WATCH When Hormones Interfere With Quality of Life in Neuroendocrine Cancers Aug 27, 2026 When hormones are out of balance, the symptoms can have a significant impact on quality of life for people living with neuroendocrine cancer. In this Neuroendocrine Cancer Foundation (NCF) educational webinar, Dr. Jaydira Del Rivero, medical oncologist at the National Cancer Institute, explores how hormone excess, hormone deficiencies, and cancer treatments can affect the endocrine system—and what patients and caregivers should know. Topics covered include: How hormone excess and hormone deficiency can affect the body Hormone-related symptoms associated with neuroendocrine tumors Carcinoid syndrome vs. serotonin syndrome How immunotherapy may affect the pituitary, thyroid, adrenal glands, and pancreas Adrenal insufficiency and cortisol deficiency Thyroid dysfunction associated with cancer therapies Endocrine effects of tyrosine kinase inhibitors (TKIs) and somatostatin analogs Changes in blood glucose and insulin production Sex hormone changes during treatment Flushing related to carcinoid syndrome and menopause GLP-1 agonists in the setting of neuroendocrine tumors Symptoms and patterns patients should discuss with their healthcare team Warning signs that may require urgent medical attention The goal of this session is to help patients and caregivers recognize symptoms earlier, understand when hormone testing may be appropriate, and have more informed conversations with their oncology and endocrinology teams. Watch Navigating Treatment Side Effects Jason Starr, DO June 20, 2026 Dr. Run Yu, Endocrinologist from UCLA, discusses "The Endocrine in Neuroendocrine" at the 2024 NET Cancer Day Symposium. Watch The Latest in the Management of Functional Neuroendocrine Cancers Jan 21, 2026 Join us for an easy-to-understand overview of functional neuroendocrine tumors (NETs) with Dr. Jaydira Del Rivero, a medical oncologist and endocrinologist at the National Cancer Institute. Functional NETs can cause the body to produce too many hormones, leading to challenging symptoms such as low blood sugar (often seen in insulinoma), high blood sugar (glucagonoma), carcinoid syndrome (excess serotonin), and other hormone-related issues and symptoms. Dr. Del Rivero will explain what these syndromes are, how they’re diagnosed, and the latest updates in treatment. She will also discuss conditions that can occur because of NETs or their treatments such as adrenal insufficiency. She will help patients understand why symptoms like hypoglycemia are more common in some NET types. Whether you’re a patient, caregiver, or simply want to better understand functional NETs, this webinar will offer practical, up-to-date information to help you feel more informed and empowered. Watch Managing Side Effects of Systemic Therapy Jason Starr, MD November 9, 2025 Dr. Jason Starr speaks about "Managing Side Effects of Systemic Therapy" at the 2025 NET Cancer Day Symposium. Watch What Matters About Symptom Management Vineeth Sukrithan, MD June 14, 2025 Dr. Jason Starr speaks about "Managing Side Effects of Systemic Therapy" at the 2025 NET Cancer Day Symposium. Watch The Endocrine in Neuroendocrine Run Yu, MD November 9, 2024 Dr. Run Yu, Endocrinologist from UCLA, discusses "The Endocrine in Neuroendocrine" at the 2024 NET Cancer Day Symposium. Watch Symptom Management David Metz, MD October 10, 2023 Neuroendocrinologist Dr. David Metz from the University of Pennsylvania discusses symptom management. The presentation covers carcinoid syndrome, pancreatic enzymes, bile acid secretion, and short bowel syndrome. He explains current treatments, supplements, and diets that might be helpful to control NET-related symptoms. Watch Managing NET Symptoms and Treatment Side Effects Sandy Kotiah, MD June 18, 2022 Dr. Sandy Kotiah addresses the management of NET symptoms and treatment side effects. Watch Symptom Management Jaydira Del Rivero, MD June 19, 2021 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Watch Management of Diarrhea in Neuroendocrine Tumors Shirley Paski, MD Oct 14, 2020 Watch LISTEN Gastric NET, Gastrinomas & Zollinger-Ellison Syndrome (ZES) David Metz, MD Gastroenterologist and Neuroendocrinologist Dr. David C. Metz discusses important concepts in Gastric NET, Gastrinomas and Zollinger-Ellison Syndrome, including detection, treatments, associated risks and monitoring. He also lends valuable insight on ulcers, MEN and proton pump inhibitors. Explore the Podcast Page Understanding Carcinoid Syndrome & GLP-1 Drugs in Neuroendocrine Tumors Joseph DIllon, MD Carcinoid syndrome can be confusing and often difficult to diagnose. In this episode, Dr. Joseph Dillon, Endocrinologist and Director of the University of Iowa Neuroendocrine Multidisciplinary Tumor Clinic, explains what carcinoid syndrome is, how it’s diagnosed, and the various ways it can be treated. He highlights key symptoms, testing, and treatment approaches—including somatostatin analogs and telotristat—and discusses how to distinguish carcinoid syndrome from other causes of diarrhea and flushing. Explore the Podcast Page EXPLORE 24-Hour Urine Collection Instructions Click Here for Instructions Symptom Tracking Tool Evernote Download Here

Diarrhea < Back to Topics Diarrhea Play Video Play Video 01:37:36 "The Latest in the Management of Functional Neuroendocrine Cancers • Jan, 2026 • Dr. Del Rivero Join this @NCFCancer educational patient event for an easy-to-understand overview of functional neuroendocrine tumors (NETs) with Dr. Jaydira Del Rivero, a medical oncologist and endocrinologist at the National Cancer Institute. Functional NETs can cause the body to produce too many hormones, leading to challenging symptoms such as low blood sugar (often seen in insulinoma), high blood sugar (glucagonoma), and other hormone-related issues. Dr. Del Rivero will explain what these syndromes are, how they’re diagnosed, and the latest updates in treatment. She will also discuss conditions that can occur because of NETs or their treatments. She will help patients understand why symptoms like hypoglycemia are more common in some NET types. Whether you’re a patient, caregiver, or simply want to better understand functional NETs, this webinar will offer practical, up-to-date information to help you feel more informed and empowered. Potential Topics: Functional NET, Hormone-producing, Insulinoma, Gastrinoma, VIPoma, Zollinger-Ellison syndrome (ZES), Carcinoid, Hypoglycemia, Diarrhea, Flushing ABOUT DR. JAYDIRA DEL RIVERO Medical Oncologist & Endocrinologist National Cancer Institute, National Institutes of Health 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. For more information, visit https://www.ncf.net/events/jan2026 Play Video Play Video 01:33:48 LACNETS • "Symptom Management" with Dr. David Metz • Oct 2023 Join LACNETS to hear Neuroendocrinologist, Dr. David Metz from University of Pennsylvania discuss symptom management. The presentation will cover carcinoid syndrome, pancreatic enzymes, bile acid secretion, and short bowel syndrome. He will explain current treatments, supplements, and diets that might be helpful to control NET-related symptoms. For more information, visit LACNETS.org. Play Video Play Video 53:27 Episode 2: Diarrhea & NETs • The LACNETS Podcast ABOUT THIS EPISODE: For our second episode, NET expert and gastroenterologist Dr. David Metz answers the top 10 GI questions for NETs. Dr. Metz addresses diarrhea, diet, the difference between carcinoid tumor vs. carcinoid syndrome, and effective symptom management. MEET DR. DAVID METZ Dr. Metz is the Professor of Medicine and Co-director of the Neuroendocrine Tumor Program at the University of Pennsylvania. He is actively involved in clinical research, patient care, and teaching of students, residents, and fellows. Dr Metz’s clinical research program is particularly active in acid-peptic conditions including hypersecretory states such as Zollinger-Ellison syndrome, Helicobacter pylori infection, nonsteroidal anti-inflammatory drug gastropathy, and gastroesophageal reflux disease. He also has particular expertise in the diagnosis and management of patients with functional and non-functional neuroendocrine tumors of the pancreas and alimentary tract. He has been a principal investigator on a number of trials evaluating upper gastrointestinal disease states. He is also active in national gastroenterology societies and was a prior member of the Liason Committee for Recertification of the American Board of Internal Medicine (American Gastroenterological Association representative), the US Food and Drug Administration Gastrointestinal Drugs Advisory Committee and chair emeritus of the North American neuroendocrine Tumor Society (NANETS). Dr. Metz earned his MBBCh (MD equivalent) from the University of the Witwatersrand in Johannesburg, South Africa. He moved to the United States in 1986 and pursued a residency in internal medicine at Albert Einstein Medical Center in Philadelphia. He completed a fellowship in gastroenterology in Washington, DC, in the combined Georgetown/Veterans Affairs Medical Center/National Institutes of Health (NIH) program. He remained on staff at the NIH for 2 more years as a senior staff fellow, performing basic research in pancreatic acinar cell secretion and clinical research in Zollinger-Ellison syndrome specifically. In 1993, Dr. Metz moved to Philadelphia in the role of Assistant Professor in the clinician educator track at the University of Pennsylvania. He was promoted to Associate Professor in 1998 and Full Professor in 2003. TOP 10 QUESTIONS 1. What is the difference between carcinoid syndrome and carcinoid tumor? 2. What are the most common causes of diarrhea? How do I know if my diarrhea is from NET, medication, diet, or another reason? (What is the difference between diarrhea and fat-absorption diarrhea?") 3. How do I know if diarrhea is part of carcinoid syndrome or not? 4. Discuss cramping, bloating, and abdominal pain. Is this part of carcinoid syndrome? (How do I know if these are from the tumor, treatment, or something else?) 5. Why do they take out the gallbladder and what effect does this have on GI symptoms? 6. Are there other syndromes besides carcinoid syndrome that cause diarrhea? 7. How might my doctor evaluate my diarrhea? When should someone have EGD, colonoscopy, and capsule endoscopy and how might it affect symptom management? 8. What do I do to control my diarrhea? 9. What treatment/diet/meds would help prevent chronic cramping, bloating, loud gurgling of GI tract for a midgut patient on SSAs ? 10. What is the best diet for diarrhea? For more resources and a transcript of this episode, visit https://www.lacnets.org/podcast2. Play Video Play Video 49:02 Symptom Management: Diarrhea, Hyperglycemia & Diabetes - 2020 LACNETS Virtual NET Conference Virtual 2020 Los Angeles Neuroendocrine Tumor Patient Education Conference Presented by LACNETS Presentations & Times: "Patient Story" (0:00 - 6:30) Brent, NET Patient "Symptom Management: Diarrhea" (6:30 - 29:05) David C. Metz, MD, Gastroenterology Penn Medicine "Symptom Management: NET-related Hyperglycemia and Diabetes" (29:05 - end of video) Run Yu, MD, PhD , Endocrinology UCLA Health For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 01:38:07 LACNETS Webinar: "Management of Diarrhea in NETs” with Dr. Shirley Paski Management of Diarrhea in NETs” with Dr. Shirley Paski Recorded on October 13th, 2020 Speaker: Shirley Paski, MD, IM/Gastroenterology, Cedars-Sinai Medical Center Learn more here: www.LACNETS.org Audio/Video - www.TVPlive.com < Back to Topics Next Topic >

< Back to the supporters page ABOUT CRINETICS At Crinetics Pharmaceuticals, our singular focus is on transforming the lives of patients living with endocrinology-related conditions. Our goal is to discover, develop, and commercialize novel therapeutics that leverage our unique understanding of endocrinology and G-protein coupled receptors (GPCRs). Endocrinology impacts nearly every aspect of human health, and our passion for this work runs deep. Our novel molecules that have been purposefully designed by our world-class, in-house R&D team have the potential to lift the burden of disease across a wide range of endocrine diseases and endocrine-related tumors so that patients can focus on life. Learn about Crinetics work in Carcinoid Syndrome >> Learn more about Crinetics and our groundbreaking work here >> This information is for educational purposes only and does not substitute for medical advice or constitute an endorsement by the Neuroendocrine Cancer Foundation. Talk to your medical team about your individual care and treatment. Confirm Your Visit to the Novartis Virtual Booth! First name Last name Email Submit << Previous Next >>

ABOUT CURIUM "At Curium, we have a singular focus – to develop, manufacture and supply world-class radiopharmaceutical products around the globe. We strive to innovate further in nuclear diagnostics and therapies so we can enhance the lives of people with cancer." Download the Detectnet™ Brochure >>> Download the Oncology Patient Education Brochure >>> Download the Nuclear Medicine Patient Education Brochure >>> CONTACT Jenny Yessaian RN, MBA Sr Director of Marketing C: +1.626.696.0535 111 Westport Plaza, Suite 800 St. Louis, MO 63146 This information is for educational purposes only and does not substitute for medical advice or constitute an endorsement by the Neuroendocrine Cancer Foundation. Talk to your medical team about your individual care and treatment.

Pheo/Para Resources EDUCATIONAL VIDEOS "Update on Pheochromocytoma and Paraganglioma: Focusing on Advanced/Metastatic Disease" with Jaydira Del Rivero, MD Have you wondered if NETs might be hereditary? What do you know about pheochromocytoma and paraganglioma (pheo/para)? NET expert Dr. Jaydira Del Rivero gives a full update on these rare and often misdiagnosed conditions. *This presentation was recorded on February 17, 2022. Dr. Del Rivero’s presentation slides can be downloaded here. This presentation is available in Spanish, found here . "Focus on Pheochromocytoma/Paraganglioma" Join LACNETS for a unique webinar with a live presentation of three pheochromocytoma and paraganglioma (PPGL) cases and an engaging panel discussion with experts Dr. Jaydira Del Rivero, Dr. Erik Mittra, and Dr. Karel Pacak. Click here for more information>> Aimee Powell Shares Her NET Journey Aimee Powell, a caregiver and advocate for family members diagnosed with pheochromocytoma and paraganglioma shares what led her to a life of patient advocacy and assisting patients with these rare tumors. Aimee is the founder of The Pheo Para Project – www.pheoparaproject.org . PODCAST The LACNETS Podcast: "Pheochromocytoma & Paraganglioma" with Jaydira Del Rivero, MD 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. Listen here READING MATERIALS NANETS Guidelines for Surveillance and Management of Metastatic and/or Unresectable Pheochromocytoma and Paraganglioma Download here BLOG "The Notorious PCC" - by Aimee Powell "El Notorio Feo/Para" (Spanish) CLINICAL TRIALS Pheo Para Clinical Trials PHEO/PARA ORGANIZATIONS Pheo Para Alliance Pheo Para Project VHL Alliance AMEND PHEiPAS

Learn about liver-directed therapy for NETs, including treatment approaches that may help manage liver metastases & improve symptom control. Liver-Directed Therapy for Neuroendocrine Tumors LEARNING RESOURCES Liver Directed Therapy Liver Directed Therapy Play Video Share Whole Channel This Video Facebook Twitter Pinterest Tumblr Copy Link Link Copied Now Playing 7. Navigating Liver-Directed Therapy • Dr. Michael Soulen • Penn Medicine • 2026 NCF Conference 20:09 Play Video Now Playing 3. Liver-Directed Therapy • Dr. Lindsay Thornton • 2025 NET Cancer Day Symposium 12:56 Play Video Now Playing 06. Liver-Directed Therapy: Killing Liver Tumors Without a Big Scar • Gregory Woodhead, MD, PhD 15:59 Play Video PODCAST EPISODES

Exelixis is innovating at the forefront of cancer care. Their comprehensive approach is powered by a broad array of diverse biotherapeutics and small molecule programs for the treatment of cancer exploring multiple modalities and mechanisms of action. Learn more at https://www.exelixis.com/. This information is for educational purposes only and does not substitute for medical advice or constitute an endorsement by NCF. Talk to your medical team about your individual care and treatment.

Be Inspired < Back to Topics Above & Beyond Awards Above & Beyond Awards Play Video Play Video 08:07 Dusty Hurley • Above and Beyond Award • 2025 NET Cancer Day Symposium The video captures a meaningful moment from the 2025 NET Cancer Day Symposium, where the Giovanna Joyce Imbesi Above and Beyond Award is presented to Dusty Hurley. This award honors outstanding individuals who have made a significant and lasting impact on the neuroendocrine tumor (NET) community through advocacy, volunteerism, education, or peer support. The 2025 award recipient, Dusty Hurley, is recognized for her dedication to helping others navigate a NET diagnosis, offering guidance, mentorship, and compassionate support. The presentation serves as a reminder that while medical advances and research remain important, the emotional and community aspects of living with a rare cancer are equally meaningful. The award reinforces the values of generosity, leadership, and unity within the NET community. Through this recognition, the Neuroendocrine Cancer Foundation highlights the power of peer connection and honors those whose commitment helps others feel informed, supported, and less alone. #NETCancer #NeuroendocrineCancer #NETAwareness #RareCancer #CancerCommunity #Advocacy #NCF #LACNETS #AboveAndBeyondAward #NETCancerDay #CancerEducation #NETSupport Play Video Play Video 03:23 Above and Beyond Award • 2024 LACNETS NET Cancer Day Symposium The video captures a meaningful moment from the 2024 NET Cancer Day Symposium, where the Giovanna Joyce Imbesi Above and Beyond Award is presented. This award honors outstanding individuals who have made a significant and lasting impact on the neuroendocrine tumor (NET) community through advocacy, volunteerism, education, or peer support. The 2024 award recipient, Val Tippy, is recognized for her dedication to helping others navigate a NET diagnosis, offering guidance, mentorship, and compassionate support. Although she was unable to attend the event in person, the award was celebrated during a family brunch, surrounded by loved ones — reflecting not only her personal contribution, but also the shared journey of patients, caregivers, and community members affected by NETs. The presentation serves as a reminder that while medical advances and research remain important, the emotional and community aspects of living with a rare cancer are equally meaningful. The award reinforces the values of generosity, leadership, and unity within the NET community. Through this recognition, the Neuroendocrine Cancer Foundation highlights the power of peer connection and honors those whose commitment helps others feel informed, supported, and less alone. #NETCancer #NeuroendocrineCancer #NETAwareness #RareCancer #CancerCommunity #Advocacy #NCF #LACNETS #AboveAndBeyondAward #NETCancerDay #CancerEducation #NETSupport Play Video Play Video 04:33 @NCFCancer Above & Beyond Award: Tom, Musician/Composer & NET Patient • 2023 NET Cancer Day Symposium The Giovanna Joyce Imbesi Above & Beyond Award is given to individuals in recognition of outstanding dedication to NET patient advocacy. Recipients of this award demonstrate an attitude of excellence, awareness, and hope for the neuroendocrine cancer community. The award is in honor of the late founder of @NCFCancer, Giovanna Joyce Imbesi. In 2023, NET Patient, Musician and Composer Tom received the Above & Beyond Award for his dedication to patient advocacy. For more information, visit LACNETS.org. Play Video Play Video 03:45 7 - Above & Beyond Award with Michel DeQuevedo & Lisa Yen Honor NET Cancer Day with LACNETS! Three NET patient advocates, including one who is also a NET oncologist, who joins us for the 2022 Annual NET Cancer Day Virtual Symposium This year’s theme is, “Patient Perspectives on Making NET Decisions.” (Re-broadcast from original Live Webcast on on Wednesday, November 9) For more info, visit www.LACNETS.org. Play Video Play Video 09:36 2018 LA NET Conf 10 - LACNETS 2018 Above and Beyond Award LACNETS 2018 Above and Beyond Award Awarded to Beth DeBlase NET Patient Play Video Play Video 45:34 Patient Panel + Above & Beyond Award- 2019 LA NET Conf Patient Panel 2019 Annual Los Angeles NET Patient Education Conference Saturday, June 8th www.LACNETS.org Play Video Play Video 05:56 2020 Giovanna Joyce Imbesi Above & Beyond Award (LACNETS) 2020 Giovanna Joyce Imbesi Above & Beyond Award December 8, 2020 2020 Recipient: Mary Donlevy, NET Patient To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 06:10 Announcing the recipient of the 2021 Giovanna Joyce Imbesi Above & Beyond Award Watch as we announce the recipient of the 2021 Giovanna Joyce Imbesi Above & Beyond Award. In memory of our late founder, this annual award is given to individuals who demonstrate outstanding dedication to NET patient advocacy. 2021 Recipient: Samuel Prentice Jr. To learn more about this award, visit www.lacnets.org/lacnets-above-beyond-award. Giovanna Joyce Imbesi, LACNETS Founder Giovanna Imbesi Play Video Play Video 10:07 Tribute Video: In Loving Memory of Giovanna Joyce Imbesi, LACNETS Founder Tribute Video honoring Giovanna Joyce Imbesi by Rich Tamayo, TVP Live, 12/10/2020 Learn more about Giovanna: https://www.lacnets.org/giovanna Inspirational Inspirational Play Video Play Video 46:54 "Riding the Cancer Wave – Spiritually Speaking" with Chaplain Michael Eselun TEDx speaker Michael Eselun, BCC of Simms/Mann UCLA joins LACNETS for his inspirational talk, "Riding the Cancer Wave – Spiritually Speaking." Michael explores the qualities he’s observed that help patients and families ride the cancer wave with greater ease. He shares what can sometimes happen when lifelong beliefs meet the challenge of cancer—to the religious and secular alike. Michael discusses how it is that we tend to find meaning in the unlikeliest of places—including on the cancer wave. To learn more about LACNETS, please visit www.LACNETS.org. Play Video Play Video 01:32:34 LACNETS Webinar: "How to Live with Neuroendocrine Cancer" with Dr. Eric Liu How do you navigate decisions in your NET journey? How do you learn to cope with your cancer diagnosis? How do you find your "new normal" and learn to thrive? Renowned NET Surgeon Dr. Eric Liu of Rocky Mountain Cancer Center addresses the importance of finding your NET team, prioritizing self-care, and how to let go of what you can't control. This video includes a presentation and Q&A. Speaker: Eric Liu, MD Surgeon, NET Specialist Rocky Mountain Cancer Center To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 07:12 12. Patient Story: From Diagnosis to Patient Advocacy - 2022 LACNETS NET Patient Conference Diagnosed with neuroendocrine cancer (NET) in 2021, NET patient Michel shares how the lack of information and awareness of his uncommon diagnosis inspired him to start a patient support group in Mexico called NETs Mexico. This patient story is also available in Spanish, found here: www.LACNETS.org/spanish-resources 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 01:38:00 LACNETS Webinar: The Fortune & Folly of Self-Diagnosis" with Dr. Mark Lewis NET expert Dr. Mark Lewis shares how he was diagnosed with NET and how he has been navigating the patient journey. Dr. Lewis addresses the importance of shared decision-making and patient-physician communication. This webinar was recorded on May 6, 2022. Speaker: Mark A. Lewis, MD Medical Oncologist, Director of Gastrointestinal Oncology, Intermountain Healthcare To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 04:17 "Hush" by Giovanna Joyce Imbesi (Photography by David F. Coppedge) [Written by David F. Coppedge] "Giovanna Imbesi, founder of LACNETS (Los Angeles County Neuroendocrine Tumor Society), died on November 24, 2019 after a 14-year battle with the disease. She worked tirelessly to educate and help patients with neuroendocrine cancer and support efforts to find new treatments. Giovanna was also an accomplished musician, pianist and composer. This is her song "Hush" from her album "Short Stories" that I put to some of my photographs of fall colors in Utah and Colorado. When I presented it to her in 2016, she was very appreciative, calling it "beautiful and touching." I offer it here on YouTube as a tribute to her hard work on behalf of others suffering from this rare cancer, and as a sample of her quiet spirit and desire for peace in the midst of years of surgeries and treatments for the life-threatening disease." Play Video Play Video 05:17 Patient Story: NET Patient shares how she is thriving as a NET patient (LACNETS) NET Patient Cindy shares how she is thriving as a NET patient. November 7, 2020 To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 12:03 Patient Story: NET Patient shares her inspiring story of strength & resilience (LACNETS) NET Patient Beth shares her inspiring story of strength and resilience titled "A Shared Experience." December 8, 2020 To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 07:56 NET Patient shares how she has learned not just to survive, but also to thrive. Kelli Edwards is a 19-year NET thriver. Kelli shares how her world initially crumbled after her diagnosis and how she has since learned not just to survive, but also to thrive. Check out her recent LACNETS blog post titled "Cancer Thriver," found here: www.lacnets.org/blog/2021/9/6/cancer-thriver To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 01:05:15 LACNETS - "Cancer: Journey or Pilgrimage?" with Michael Eselun, BCC Chaplain (UCLA) LACNETS meeting, "Cancer: Journey or Pilgrimage?" Tuesday, December 10th, 2020 Venue: UCLA Faculty center SPEAKER: Michael Eselun, BCC Chaplain Board Certified Chaplain, Simms/Mann-UCLA Center for Integrative Oncology www.LACNETS.org Play Video Play Video 01:41:38 LACNETS Webinar: "Restringing the Beads of Our Own Story" with Michael Eselun, BCC LACNETS Webinar: "Restringing the Beads of Our Own Story" with Michael Eselun, BCC He shares an honest perspective and rich insights that resonates with cancer patients. Speaker: Michael Eselun Board Certified Chaplain, Simms/Mann UCLA Center for Integrative Oncology Learn more about LACNETS: www.LACNETS.org Audio/Video - www.TVPlive.com Patient Advocacy Patient Advocacy Play Video Play Video 15:35 8. Role of Advocacy in Advancing Care for Neuroendocrine Cancer • Dr. Estelamari Rodriquez Dr. Estelamari Rodriquez speaks about the "Role of Advocacy in Advancing Care for Neuroendocrine Cancer" 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 35:20 5 - Q&A Panel Three NET patients advocates from around the country answer your questions about patient advocacy work. Speakers: Cindy Lovelace, Co-founder & Executive Director of The Healing NET Foundation Josh Mailman, President of NorCal CarciNET Community Dr. Mark Lewis, NET patient AND a NET oncologist of Intermountain Healthcare To learn more, visit www.LACNETS.org. Play Video Play Video 15:23 3 - “Patient Advocacy: How can YOU bring about change?” with Josh Mailman, MBA Josh Mailman, President of NorCal CarciNET Community, shares how YOU can become involved in patient advocacy work and inspire change within the NET community. 2021 Annual NET Cancer Day Virtual Symposium November 10, 2021 To learn more, visit www.LACNETS.org. Play Video Play Video 03:43 6 - Wrap Up with LACNETS Patient advocates from around the country join us for the 2021 Annual NET Cancer Day Virtual Symposium. To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 17:27 2 - “Navigating a NET Cancer Journey & Living Life with Joy” with Cindy Lovelace Cindy Lovelace, Co-founder & Executive Director of The Healing NET Foundation, shares how she has learned to navigate her NET cancer journey while also living her life with joy. 2021 Annual NET Cancer Day Virtual Symposium November 10, 2021 To learn more, visit www.LACNETS.org. Play Video Play Video 35:20 4 - "NET Advocacy in the Modern Era: From A Patient-Physician Perspective" with Dr. Mark Lewis Dr. Mark Lewis, NET patient AND a NET oncologist of Intermountain Healthcare, joins us for his talk, "NET Advocacy in the Modern Era: From A Patient-Physician Perspective." perts from around the country. 2021 Annual NET Cancer Day Virtual Symposium November 10, 2021 To learn more, visit www.LACNETS.org. Play Video Play Video 42:50 Finding a NET Expert + Surgery for NETs - 2020 LACNETS Virtual NET Conference Virtual 2020 Los Angeles Neuroendocrine Tumor Patient Education Conference Presented by LACNETS Presentations & Times: LACNETS Conference Welcome (0:00 - 5:44) Lindsey Jeu De Vine, Director of Communications, LACNETS Lisa Yen, NBC-HWC, Program Director, LACNETS "Finding a NET Expert" (5:44 - 22:25) Cindy Lovelace , Executive Director Healing NET Foundation "Surgery for NETs" (22:25 - end of video) Alexandra Gangi, MD , Surgical Oncology Cedars-Sinai Medical Center For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 13:14 17. Patient Advocacy & Support (Josh Mailman) - 2021 LACNETS Virtual Conference 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS Presenter: Josh Mailman, MBA, Advocate, President NorCal CarciNet For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 01:38:00 LACNETS Webinar: The Fortune & Folly of Self-Diagnosis" with Dr. Mark Lewis NET expert Dr. Mark Lewis shares how he was diagnosed with NET and how he has been navigating the patient journey. Dr. Lewis addresses the importance of shared decision-making and patient-physician communication. This webinar was recorded on May 6, 2022. Speaker: Mark A. Lewis, MD Medical Oncologist, Director of Gastrointestinal Oncology, Intermountain Healthcare To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 08:05 1 - Welcome Statements: 2021 Annual NET Cancer Day Virtual Symposium Patient advocates from around the country join us for the 2021 Annual NET Cancer Day Virtual Symposium. To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 15:11 15. Being an Engaged Patient (Josh Mailman) - 2022 LACNETS Conference NET patient advocate Josh Mailman discusses the importance of being an engaged patient. Speaker: Josh Mailman, MBA President, NorCal CarciNET Community 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. Patient/Caregiver Stories Patient/Caregiver Stories Play Video Play Video 06:50 Patient Journey • Katie Shares Her Story • 2026 NCF Patient Conference In this patient story from NCF’s 2026 Virtual Annual Patient Conference, Katie shares her experience living with grade 3, stage 4 pancreatic neuroendocrine cancer. Katie discusses surgery, CapTEM, systemic chemotherapy, liver ablation, recurrence, and her decision to join a clinical trial. She reflects on weighing treatment risks, preserving future options, managing uncertainty, and balancing aggressive treatment with quality of life. Learn more 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 care or treatment. #NeuroendocrineCancer #PancreaticNET #NETCancer #ClinicalTrials #PatientStory #CancerTreatment #NCF #PatientConference Play Video Play Video 06:12 Patient & Caregiver Journey - Serra & Quintin In this patient and caregiver story from NCF’s 2026 Virtual Annual Patient Conference, Serra and Quintin share Serra’s journey with small bowel neuroendocrine cancer, from diagnosis and surgery to caregiving, support, and hope. Serra reflects on the importance of second opinions, expert care, NCF resources, community support, and staying resilient while living with stage IV neuroendocrine cancer. Quintin shares his perspective as Serra’s husband and caregiver, highlighting the role of partnership, humor, and support through appointments, scans, surgeries, and everyday life. Learn more 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 care or treatment. #NeuroendocrineCancer #NETCancer #NeuroendocrineTumors #PatientStory #CaregiverStory #SmallBowelNET #CancerSupport #NCF #PatientConference Play Video Play Video 05:47 Bob, NET Patient Bob, NET Patient Play Video Play Video 06:45 Dusty shares her NET journey • NET Patient • LACNETS Dusty, a NET Patient shares her NET Journey. Play Video Play Video 05:52 Gwendolyn shares her NET journey • NET Patient • LACNETS Gwendolyn, a NET patient, shares her NET journey. Play Video Play Video 08:41 LACNETS • NET Patient Mary Donlevy's Story Play Video Play Video 08:09 03. Patient Story - Kimberly, NET Patient • 2025 Regional Patient Event • Arizona • ⁨@NCFCancer⁩ Kimberly, a NET patient, shares her NET journey. Play Video Play Video 03:38 A Patient Journey • Aramís Lorié • 2025 NET Cancer Day Symposium NET Patient Aramís Lorié shares this story 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 01:16:25 Living with NET: The Patient Perspective • 2025 NCF Event • July 10, 2025 Patients share their experiences on topics, including decision-making, coping strategies, lessons learned, challenges, and navigating relationships while living with neuroendocrine cancer. Hear about their personal journeys—filled with resilience, realities, and hope, that offer powerful insight into what it's like living with neuroendocrine cancer. Visit NCF.net/July2025 for more information. Play Video Play Video 05:33 17. Jud, NET Patient • NET Patient Journey • @NCFCancer 2025 Annual Patient Conference Jud, a NET patient, shares his journey during the 2025 Neuroendocrine Cancer Foundation Annual Patient Conference. Play Video Play Video 06:22 10. Rashilda, NET Patient • NET Patient Journey • @NCFCancer 2025 Annual Patient Conference Rashilda, a NET Patient, shares her journey during the 2025 NCF Annual Patient Conference Play Video Play Video 06:49 Jesse & Ellen • NET Patient & Caregiver Share Their Story of Living With Carcinoid Heart Disease Jesse & Ellen share their NET journey • NET Patient & Caregiver Play Video Play Video 10:53 "A NET Journey with Samantha, daughter of a NET patient" • 2024 NET Cancer Day Symposium Samantha, a daughter of a NET patient, shared her NET journey at the 2024 NET Cancer Day Symposium. Play Video Play Video 07:51 "A NET Journey: Dorinda, NET Patient" • 2024 NET Cancer Day Symposium Dorinda Gardner shares her NET journey at the 2024 NET Cancer Day Symposium. Play Video Play Video 32:58 Patient Panel with NET Patients Beth, Burt, Denny & Mary • 2023 NET Cancer Day @NCFCancer Patient Panel with NET Patients Beth, Burt, Denny & Mary • 2023 NET Cancer Day Symposium • Santa Monica, CA • @LACNETS For more information, visit LACNETS.org Play Video Play Video 04:50 13) "A NET Journey" - Ilka & Shane Share Their Story • 2024 Neuroendocrine Tumor Patient Conference 13) A NET Journey - Ilka & Shane • 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 08:13 "A NET Journey" - Karla Shares her Story • 2024 Neuroendocrine Tumor Patient Conference 4) A NET Journey - Karla • 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 03:40 NET Patient Dorinda Shares her Journey - LACNETS Hear Dorinda's story Play Video Play Video 06:59 Don & Beth Share Their NET Journey • 2023 LACNETS Patient Conference Don & Beth share their inspiring NET journey. For more information, visit LACNETS.org. Play Video Play Video 05:02 Kimberly Shares About Her NET Journey • 2023 LACNETS Patient Education Conference Kimberly shares her inspiring NET journey as part of the 2023 LACNETS Patient Education Conference. Play Video Play Video 05:49 Patient Story: Zollinger-Ellison Syndrome and Gastrinoma Patient story of someone living with Zollinger-Ellison syndrome and a functioning gastrinoma of the pancreas Play Video Play Video 07:53 Patient Story: How to Prepare for Surgery NET patient Julie’s “show and tell” of tips, tricks, and specific items she found useful during her hospital stay and recovery at home Click here for a list of the items Julie mentioned in this video: bit.ly/3vEenQf Read our blog post, 'Practical Tips for Patients Preparing for Surgery" here: bit.ly/3Ac0xHF For more information on LACNETS, visit www.LACNETS.org. Play Video Play Video 06:38 04. Patient Story: Treatment Decisions & Navigating Insurance - 2022 LACNETS NET Patient Conference Diagnosed in 2021 with NETs in the small bowel, NET Patient Julie shares her path to treatment in hopes of providing guidance to newly-diagnosed patients. 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 07:12 12. Patient Story: From Diagnosis to Patient Advocacy - 2022 LACNETS NET Patient Conference Diagnosed with neuroendocrine cancer (NET) in 2021, NET patient Michel shares how the lack of information and awareness of his uncommon diagnosis inspired him to start a patient support group in Mexico called NETs Mexico. This patient story is also available in Spanish, found here: www.LACNETS.org/spanish-resources 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 01:38:00 LACNETS Webinar: The Fortune & Folly of Self-Diagnosis" with Dr. Mark Lewis NET expert Dr. Mark Lewis shares how he was diagnosed with NET and how he has been navigating the patient journey. Dr. Lewis addresses the importance of shared decision-making and patient-physician communication. This webinar was recorded on May 6, 2022. Speaker: Mark A. Lewis, MD Medical Oncologist, Director of Gastrointestinal Oncology, Intermountain Healthcare 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 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 09:47 Caregiver Story - Pheo/Para Aimee Powell, a caregiver and advocate for family members diagnosed with pheochromocytoma and paraganglioma shares what led her to a life of patient advocacy and assisting patients with these rare tumors. Aimee is the founder of The Pheo Para Project – www.pheoparaproject.org. To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 07:56 NET Patient shares how she has learned not just to survive, but also to thrive. Kelli Edwards is a 19-year NET thriver. Kelli shares how her world initially crumbled after her diagnosis and how she has since learned not just to survive, but also to thrive. Check out her recent LACNETS blog post titled "Cancer Thriver," found here: www.lacnets.org/blog/2021/9/6/cancer-thriver To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 05:40 16. Caregiver Story (Federico and Gilda) - 2021 LACNETS Virtual Conference NET caregiver Gilda shares her story about the importance of NET patient advocacy and support. 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS This video is also available in Spanish, found here: www.LACNETS.org/spanish-resources. For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. 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Videos en Español < Back to Topics Play Video Play Video 20:24 Dr. Carina Mari Aparici “Lo ultimo en PRRT” en español Dr. Carina Mari Aparici shares the latest in PRRT in Spanish. Play Video Play Video 09:47 Historia del paciente - vivir con cancer neuroendocrino Michél vive con cáncer neuroendocrino. Escuche su historia inspiradora y cómo mantiene la esperanza. Gracias a Michél por compartir su inspiradora historia. Para obtener más información sobre el cáncer neuroendocrino, visite www.LACNETS.org. Play Video Play Video 19:53 Tratamientos de Tumores Neuroendocrinos: Terapias médicas y ensayos clínicos with Dr. Reidy-Lagunes Tratamientos de Tumores Neuroendocrinos: Terapias médicas y ensayos clínicos Presentadora: Diane Reidy-Lagunes, MD Oncólogo Médico, Memorial Sloan Kettering Para obtener más recursos en español, visite www.LACNETS.org/spanish-resources. Play Video Play Video 58:55 "Feocromocitomas y Paragangliomas" con Dr. Jaydira Del Rivero "Feocromocitomas y Paragangliomas" con Dr. Jaydira Del Rivero. Download a copy of the presentation slides here: bit.ly/3Mdj226 Presentadora: Jaydira Del Rivero, MD Endocrinologist, Oncologist; NIH Para obtener más recursos en español, visite www.LACNETS.org/spanish-resources. Play Video Play Video 45:02 "Manejo Sintomatico de los Tumores Neuroedocrinos Funcionales" con Dr. Jaydira Del Rivero "Manejo Sintomatico de los Tumores Neuroedocrinos Funcionales" con Dr. Jaydira Del Rivero Presentadora: Jaydira Del Rivero, MD Endocrinologist, Oncologist; NIH Para obtener más recursos en español, visite www.LACNETS.org/spanish-resources. Play Video Play Video 12:40 "Medicina Complementaria" con Dr. Narjust Duma (LACNETS) "Medicina Complementaria" Presentadora: Narjust Duma, MD Assistant Professor & Thoracic Oncologist; UW Madison Para obtener más recursos en español, visite www.LACNETS.org. Play Video Play Video 50:48 "Tratamiento de Tumores Neuroendocrinos Avanzados" con Jaydira Del Rivero (LACNETS) "Tratamiento de Tumores Neuroendocrinos Avanzados" Presentadora: Jaydira Del Rivero, MD Endocrinologist, Oncologist; NIH Para obtener más recursos en español, visite www.LACNETS.org. Play Video Play Video 04:46 Historia de un paciente (LACNETS) Historia de un paciente, Federico. Para obtener más recursos en español, visite www.LACNETS.org. Play Video Play Video 04:37 Historia de una cuidadora (LACNETS) Historia de una cuidadora, Gilda. Para obtener más recursos en español, visite www.LACNETS.org. Play Video Play Video 20:22 "Qué esperar de una consulta de expertos de NET" con Dr. Heloisa Soares (LACNETS) "Qué esperar de una consulta de expertos de NET" con Dr. Heloisa Soares (LACNETS) Presentadora: Heloisa Soares, MD, PhD Medical Oncologist; Huntsman Cancer Institute Para obtener más recursos en español, visite www.LACNETS.org. < Back to Topics Next Topic >

Resources Navigation Guide Carcinoid Heart Disease Caregiver Resources Financial Resources Functional NETs & Symptom Management Grief and Loss Resources Health and Wellness Resources High Grade NET or Neuroendocrine Carcinoma (NEC) Imaging Resources Lanreotide + Octreotide Resources Lung NET Resources Liver Directed Therapy Multilingual NET Info Packs from INCA NET Groups & Organizations NET Glossary/Index NET Guidelines Newly Diagnosed Nutrition Open Clinical Trials Para Los Recién Diagnosticados Patient & Caregiver Stories Pheo/Para Resources PRRT Resources for Children Spanish Resources Surgery Resources Can't find what you're looking for? Send us an email at info@lacnets.org.

Join NCF for Jan2025. Explore event details, dates, times, and discover opportunities to connect, learn, and get involved. < Back to the upcoming events page https://www.youtube.com/watch?v=Q3ji1Zdo9oE ABOUT Learn from renowned Neuroendocrinologist Dr. David Metz, who discusses neuroendocrine tumors (NETs) found on endoscopy, including gastric, duodenal, colon and rectal NETs. Dr. Metz discusses which NETs can be found on endoscopies and how they are managed and treated. ABOUT DR. METZ David Metz, MD Gastroenterologist University of Pennsylvania School of Medicine Retired Professor CE of Medicine, Perelman School of Medicine, Co-director, GI Physiology Laboratory, Director, Acid Peptic Disorders Specialty Program, Co-director, Penn Program for Swallowing Disorders, Associate Chief for Clinical Affairs, Division of Gastroenterology, Co-director, University of Pennsylvania Neuroendocrine Tumor Program After earning his MD from the University of the Witwatersrand's Medical School, Dr. Metz was a resident at both the Albert Einstein Medical Center and the Johannesburg General Hospital. He went on to complete fellowships at Georgetown University Hospital as well as the National Institutes of Health. Arriving at Penn Medicine in 1993, David Metz, MD, held a variety of leadership roles within the Department of Gastroenterology, including Co-Directorship of the Neuroendocrine Tumor Center and Penn NET Treatment Program. Dr. Metz was previously a staff fellow at the National Institutes of Health, where he performed basic research in pancreatic acinar cell secretion and clinical research in Zollinger-Ellison syndrome. While at Penn Medicine, he served as Chair of the North American Neuroendocrine Tumor Society (NANETS), as a member of the Liaison Committee for Recertification of the American Board of Internal Medicine (American Gastroenterological Association representative), and on the Food and Drug Administration Gastrointestinal Drugs Advisory Committee, among other positions. Dr. Metz's clinical interests at Penn included Zollinger-Ellison syndrome and other acid-peptic conditions, Helicobacter pylori infection, non-steroidal anti-inflammatory drug gastropathy and the diagnosis and management of patients with functional and non-functional neuroendocrine tumors of the pancreas and alimentary tract. An investigator for a series of prominent clinical trials in all of these areas, Dr. Metz has published more than 200 articles on topics of clinical interest and research. He retired in July 2021 after 28 years at Penn Medicine. In 2021 Dr. Metz received the NANETS Lifetime Achievement Award that honors an individual who, over the course of their career, has provided outstanding contributions to neuroendocrine disease management through research, clinical practice or educational initiatives, as well as exceptional leadership in NANETS and dedication to its mission. RESOURCES Listen Read Our Cancer Stories: "Understanding Gastric Neuroendocrine Tumors" "Stages of Gastric Neuroendocrine Tumors" "Hormone Therapy for Gastric Neuroendocrine Tumors" "Types and Grades of Gastric Neuroendocrine Tumors" The opinions expressed by the guest presenters, as well as the questions asked by the audience, have not been created or suggested by LACNETS or the sponsors of this program. LACNETS does not endorse or promote any of the views, opinions or information provided in this presentation. Audience members should not rely solely on the opinions or information expressed by the guest presenter and should seek guidance and direction from their own medical advisors regarding any choices they make about their health or treatments.