<< Go back to the Podcast page EPISODE 30: BONE & BRAIN METASTASES IN NEUROENDOCRINE CANCER Download a Transcript of this Episode >> ABOUT THIS EPISODE When and how often do NETs spread to the bones or brain? How are they found? What is the treatment? Dr. Robert Ramirez of Vanderbilt University addresses concerns surrounding bone metastases (or “mets”) as well as rare brain metastases. MEET DR. ROBERT RAMIREZ, DO, FACP Dr. Robert Ramirez is a medical oncologist specializing in the treatment of thoracic and neuroendocrine malignancies and an Associate Professor of Medicine at Vanderbilt University Medical Center in Nashville, TN. He earned his medical degree from the University of Medicine and Dentistry of New Jersey School of Osteopathic Medicine. He completed an internal medicine residency at Cooper University Hospital in Camden, New Jersey. He then completed a hematology and medical oncology fellowship at the University of Tennessee Health Sciences Center in Memphis, Tennessee and served as chief fellow. He is a Fellow of the American College of Physicians, and a member of American Society of Clinical Oncology, the International Association for the Study of Lung Cancer (IASLC), and the North American Neuroendocrine Tumor Society (NANETS). He serves on the Board of Directors for NANETS as well as the Scientific Review and Research Committee. His clinical and research interests include neuroendocrine tumors (NETs) and lung cancer. He has a specific interest in NETs of the lung ranging from diffuse idiopathic pulmonary neuroendocrine tumor cell hyperplasia (DIPNECH) and carcinoid tumors to small cell lung cancer and other high-grade neuroendocrine carcinomas. He is active in clinical trial design including investigator-initiated trials. He enjoys teaching residents and fellows and has multiple publications and given many lectures for the scientific community on the topics of NETs and lung cancers. TOP TEN QUESTIONS Bone mets: 1. When and how often do NETs spread to the bones? 2. Where in the bones are tumors? What does it mean when NETs spread to the bones? How does this compare to other cancers? 3. How are bone spots found and monitored? Should they be biopsied? 4. What is the treatment for bone mets? Should I have radiation? Would radiation limit my ability to get PRRT? 5. Should I be on bone strengthening medication? Am I at higher risk for fractures (or breaking my bones) if I have NETs in the bones? 6. Do bone mets respond to PRRT? 7. Does having bone mets put me at a higher risk of MDS? Brain mets: 8. When and how often do NETs spread to the brain? Do all types of NETs have the potential to spread to the brain? 9. How are brain mets found and monitored? When should I suspect this? 10. How are brain mets treated? What does having brain mets mean for my life? *Bonus: What final words of hope do you have for the neuroendocrine cancer community? RESOURCES WATCH https://www.youtube.com/watch?v=eC5OGO6VvEE LISTEN LACNETS Lung NET Resources 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. THANK YOU TO OUR SPONSORS

Join NCF for Feb2026. 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=nrbsUI54nEM Some Topics Covered: Neuroendocrine, NET, clinical trials, PRRT, RLT, neoadjuvant trials, adjuvant trials, metastatic NET, symptom control Download the slides >>> ABOUT Join us for an overview of the latest clinical trials in neuroendocrine cancer with Dr. Heloisa Soares, a medical oncologist and physician-scientist at the Huntsman Cancer Institute (HCI) in Salt Lake City. Dr. Soares will walk through key neuroendocrine cancer clinical trials including what they are studying, what makes them exciting, and how they may shape future treatment options. She will also explain why clinical trials matter, how they benefit patients, and what to consider when exploring whether a trial might be right for you. Whether you’re a patient, caregiver, or simply trying to stay informed, this webinar will provide clear, practical insights to help you better understand emerging research and what it means for the neuroendocrine cancer community. The presentation will focus on current NET clinical trials. For information on NEC clinical trials, go to our high grade resources page: https://www.ncf.net/high-grade-nen-resources . ABOUT DR. HELOISA P. SOARES Medical Oncologist Huntsman Cancer Institute (HCI) University of Utah Dr. Heloisa Soares is a medical oncologist who focuses on neuroendocrine cancers. She is an associate professor at the Huntsman Cancer Institute (HCI) at the University of Utah, where she is also the Medical Director for the Clinical Trials Office. Nationally, she serves as the NCI NET task force co-chair and the chair of the North American Neuroendocrine Tumor Society (NANETS) inaugural NET Patient Action Team of the NETPact Committee. She also recently served as a member of the directors for NANETS. Dr. Soares is a passionate advocate for patients. You can follow her on Twitter at @helops79 RESOURCES https://www.youtube.com/watch?v=cmKEuKfOcGw The Latest on Immunotherapy for Neuroendocrine Cancer with Dr. Aman Chauhan (Dec 2025) Additional Clinical Trials Resources: https://www.ncf.net/clinical-trials/additional-resources https://www.youtube.com/watch?v=CXW71vedhIw "Navigating Clinical Trials: Expectations vs. Realities" with Taymeyah Al-Toubah • Aug 2023 https://www.youtube.com/watch?v=Kf3p_j5tFVU Clinical Trials: Why, What & How • Josh Mailman • 2023 Patient Education Conference THANKS TO OUR SPONSORS T he opinions expressed by the guest presenters, as well as the questions asked by the audience, have not been created or suggested by the Neuroendocrine Cancer Foundation or the sponsors of this program. The Neuroendocrine Cancer Foundation does not endorse or promote any of the views, opinions or information provided in this presentation. Audience members should not rely on the opinions or information expressed by the guest presenter and should seek guidance and direction from their own medical advisors regarding any choices they make about their health or treatments.

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

<< Go back to the Podcast page EPISODE 3: SURGERY FOR NETS Download a Transcript of this Episode >> ABOUT THIS EPISODE To cut or not to cut? A crossroad many neuroendocrine cancer patients are faced with along their journey. NET surgeon Dr. Gagandeep Singh of City of Hope answers the top 10 surgery questions for NETs. MEET DR. GAGANDEEP SINGH Gagandeep Singh, M.D., is an internationally recognized liver and pancreas surgeon. He is head of hepatobiliary and pancreatic surgery service City of Hope, a National Cancer Institute-designated comprehensive cancer center. He is also the surgical director of the Neuroendocrine Tumor Program and is the lead for the gastrointestinal disease team. He started his faculty academic career at Keck School of Medicine of USC in Los Angeles. From there, he was appointed as director of the Liver and Pancreas Center at the John Wayne Cancer Institute, Santa Monica, California, where he also served as chair of the Cancer Committee and vice president for Fellowship Education. In 2010, City of Hope asked Dr. Singh to spearhead the liver and pancreatic cancer program. He was appointed clinical professor of surgery and as the new chief of the Division of Surgical Oncology (2011 to 2019) and hoisted the program to national recognition. He has an extensive referral base that reflects peer recognition of his clinical acumen and surgical expertise and is listed in “America’s Top Surgeons,” “Best Doctors of America,” “Super Doctors” and “Top Doctors of America.” Prior to his tenure in the Unites States, he earned is his medical degree from the Mahatma Gandhi Institute of Medical Sciences in India, and then trained at some of the finest cancer centers and hepatobiliary institutes around the world. These international institutions include: Tata Memorial Hospital and Cancer Center (Bombay, India), René Descartes University - Hôpital Cochin (Paris, France) and the Royal Liverpool University Hospital (England). In the U.S., these institutes include: Marion Bessin Liver Center at the Albert Einstein College of Medicine (New York), Maricopa Medical Center (Phoenix) and the University of Iowa Hospitals & Clinics (Iowa City). Dr. Singh is a board-certified surgeon, a diplomate of the American Board of Surgery and a fellow of the American College of Surgeons. He is a member of some of the top elite surgical societies and has served as invited speaker/chair at several national and international conferences. He is also a panel member of the National Comprehensive Cancer Network for Hepatobiliary Cancers, that lays down the guidelines for the standard of care for these cancers; providing direction to both patients and physicians across the U.S. and the rest of the world. Dr. Singh has a very thoughtful, effective and yet forceful approach to beating cancer, in a systematic fashion working with an outstanding multidisciplinary team. Dynamic and compassionate, he is a skilled and an accomplished surgeon. He has extensive experience in liver and pancreatic diseases and other gastrointestinal cancers. His work is very well published with numerous publications in prestigious journals. His publications encompass complex liver resections for liver metastases, management algorithms for neuroendocrine tumors, vascular reconstructions following difficult pancreatic surgery for pancreatic cancer, and advanced robotic surgery. Currently, his group is advancing the scope and providing leading-edge surgery for complex liver and pancreatic operations using minimally invasive surgery techniques with the 3D high-definition da Vinci robotic surgical systems. His work in robotic surgery has been presented on the national podium at the Society of Surgical Oncology, Americas Hepato-Pancreato-Biliary Association, Society of Laparoscopic & Robotic Surgeons and other national meetings. An innovator at heart, Dr. Singh is in constant pursuit of enhancing the surgical experience and developing technical innovations in liver and pancreatic surgery. He has collaborative endeavors with engineers from California Institute of Technology (Caltech) & Harvey Mudd College. He has several invention disclosures and patents. In addition to a large clinical practice, Dr. Singh is passionately advancing leading-edge translational research. He collaborates with City of Hope’s molecular biologists, X-ray crystallographers, structural chemists and superresolution scientists. A visionary clinician, he is developing novel targeted molecules for neuroendocrine tumors, pancreatic cancers and metastatic colon and rectal cancers. He believes early detection is critical and is authenticating an early detection blood test for pancreatic cancers and colorectal cancers. ABOUT THIS EPISODE 1. Should all NET patients have surgery? How do I know if I’m a candidate for surgery? If 1 surgeon says I’m not, would another surgeon say something different? 2. How much control would a patient have regarding the approach and extent of surgery? 3. How do you control for carcinoid crisis during surgery? 4. Should all NET patients have their gallbladder removed? If mine wasn’t removed in my initial surgery, would you recommend going back to have it taken out? 5. If there are already liver mets, would you recommend having surgery? If so, how much should be taken out? Is there a role for taking out the primary tumor when there are liver mets? 6. Is there a role for surgery if there are bone mets? 7. What is the role of liver transplantation? 8. What are the risks of scar tissue from multiple surgeries? What can be done about it? (how many surgeries can a body handle?) 9. What is the role of adjuvant therapy for net? (Please also explain what adjuvant therapy is.) 10. What treatment or other development in this field are you most excited about? (What hope might you offer to those living with NET or their loved ones?) 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

<< Go back to the Podcast page EPISODE 44: UNDERSTANDING CLINICAL TRIALS & HOW THEY FIT IN THE NEUROENDOCRINE CANCER JOURNEY Download a Transcript of this Episode >>> ABOUT THIS EPISODE When in one’s neuroendocrine cancer journey might a clinical trial be considered? What factors influence treatment decisions, including whether to pursue a clinical trial? Dr. Alexandria Phan, medical oncologist at the Medical College of Wisconsin, offers thoughtful guidance on when and how clinical trials fit into the neuroendocrine cancer journey. This episode helps demystify the clinical trial process and empowers patients to engage in meaningful, proactive conversations with their care teams. MEET ALEXANDRIA PHAN, MD, FACP Dr. Alexandria Phan is a hematologist and medical oncologist at the Froedtert & Medical College of Wisconsin. Clinical practice, clinical research and education are three pillars important to Dr. Phan’s approach to cancer care. Her areas of focus for clinical research and patient care are neuroendocrine tumors and malignancies of the gastrointestinal system. She has held several leadership positions including cancer center director, founding program director for Hematology-Oncology fellowship, medical director of clinical research, and national director for GI cancer program. TOP TEN QUESTIONS: What is a clinical trial? When in one’s neuroendocrine cancer journey might a clinical trial be considered? Many people think of clinical trials as a “last resort” option? When in one’s neuroendocrine cancer journey should a clinical trial be considered? How do you, as a neuroendocrine expert, consider clinical trials for your patients? What is the process of considering clinical trials? Do you suggest them or do your patients suggest them? If a patient is interested, do you refer them to a clinical trial or is it their responsibility to reach out to the investigator (if it is not you)? If I am at a decision point and there are multiple treatment options available including clinical trials, what advice or insights do you have to help make this decision? When might a clinical trial be “better” than what is already available? How does timing factor into the decision? How long does it take to enroll/start a clinical trial? What if the trial is not available at the institution I’m going to? How do patients keep abreast of clinical trials? How can they better understand the trial? How long do clinical trials take? If I start a clinical trial, how long could I expect to be on it? How often do clinical trials open/close? How often do spots [slots] open? How do I optimize my options? If I want to keep my options open for future clinical trials, what are certain considerations in selecting current treatments to make sure to maximize future clinical trials options? What is on the horizon for neuroendocrine cancer that you’re most optimistic about? RESOURCES Clinical Trials Guide View more videos on research and clinical trials in our Video Library>>> READ CHD Guidelines & Articles: ENETS guidance paper for carcinoid syndrome and carcinoid heart disease Davar et al (2017) Diagnosing and Managing Carcinoid Heart Disease in Patients With Neuroendocrine Tumors: An Expert Statement. J Am Coll Cardiol.; 69 (10) 1288–1304 Jin et al (2021) Carcinoid Heart Disease: Pathophysiology, Pathology, Clinical Manifestations, and Management. Cardiology;146:65–73 Ram et al (2019) Carcinoid Heart Disease:Review of Current Knowledge. Texas Heart Institute Journal February 2019, Vol. 46, No. 1 Additional Resources: Xermelo or Telotristat Ethyl Interscience Institute provides NET Diagnostic Testing including pancreastatin and serotonin. DISCLAIMER The Neuroendocrine Cancer Foundation Podcasts are created for educational purposes only and do not substitute for medical advice. The views shared in this Podcast are the personal opinions of the experts and do not necessarily reflect the views of the Neuroendocrine Cancer Foundation. Please contact your medical team with questions or concerns about your individual care or treatment. THANK YOU TO OUR SPONSORS

<< Go back to the Podcast page EPISODE 28: TOP 10 HIGHLIGHTS OF THE 2023 NANETS SYMPOSIUM Download a Transcript of this Episode >> ABOUT THIS EPISODE In this special episode, Oregon Health & Sciences University (OHSU) Medical oncologist, Dr. Guillaume (Will) Pegna, recaps the North American Neuroendocrine Tumor Society (NANETS) 2023 Multidisciplinary NET Medical Symposium. He shares the latest developments in NET research and medical advances from the conference and discusses why they matter to the NET patient community. MEET DR. GUILLAUME PEGNA Dr. Pegna is a medical oncologist who specializes in the care of adults with neuroendocrine tumors (NETs). He is additionally interested and experienced in the management of rare tumors including pheochromocytomas, paragangliomas and adrenocortical carcinomas as well as other gastrointestinal cancers. Dr. Pegna is actively involved with clinical trials and cancer research to improve survival and quality of life for cancer patients and to better understand the biology of these diseases. He specializes in the use of chemotherapy, immunotherapy and multidisciplinary approaches to cancer care. Dr. Pegna finds it rewarding to help patients understand their disease, providing treatment options based on each individual patient, and supporting them through their treatment journeys. TOP 10 HIGHLIGHTS OF THE 2023 NANETS SYMPOSIUM REFERENCES Honorable Mentions: C-46 - " P eptide Receptor Radionuclide Therapy Improves Survival in Patients Who Progress After Resection of Gastroenteropancreatic Neuroendocrine Tumors" Luis C. Borbon et al C-51 - " A Prospective Phase II Single-Arm Trial on Neoadjuvant Peptide Receptor Radionuclide Therapy (PRRT) with 177Lu-DOTATATE Followed by Surgery for Pancreatic Neuroendocrine Tumors (NeoLuPaNET)" Stefano Partelli et al Top 10: 10. C-39 - " Repeat Peptide Receptor Radionuclide Therapy in Neuroendocrine Neoplasms: A NET Center of Excellence Experience" Dr. Grewal at University of Iowa Holden Cancer Center & Lindsay Hunter, MD, Huntsman Cancer Institute 9. C-25 - " Pilot Study of Pembrolizumab and Peptide Receptor Radionuclide Therapy for Patients with Metastatic Well-Differentiated Neuroendocrine Tumors " Preliminary results of a prospective clinical trial by Nicholas Fidelman, MD, et al 8. C-1 - " Clinical impact of unsuccessful subcutaneous administration of octreotide LAR instead of intramuscular administration in patients living with metastatic neuroendocrine tumors" Retrospective study by Dr. Krishnan and Dr. Loree out of Vancouver BC 7. O-5 - " Chromogranin A as Surveillance biomarker in Patients with cARcinoids (CASPAR)" Study by Dr. Halfdanarson, et al 6. C-55 - " Association of Long-Term PPI Use With Low-Risk Gastric Neuroendocrine Tumor" Oral presentation by Taymeyah Al-Toubah, MPH, and Jonathan Strosberg, MD 5. C-47 - " Surgical Cytoreduction vs Systemic therapy in Patients with Metastatic Gastroenteropancreatic Neuroendocrine Tumors (GEP-NETS): NCDB Analysis " Abstract from Dr. Mohamed et al, Case Western Reserve University, Cleveland Ohio 4.a. C-5 - "A Phase 2 Clinical Trial of Cabozantinib in Patients with Unresectable and Progressive Metastatic Pheochromocytoma or Paraganglioma: The NATALIE Trial" Dr. Camilo Jimenez from MD Anderson Cancer Center 4.b. C-22 - " Phase 2 Trial of Lu-177-DOTATATE in Metastatic or Inoperable Pheochromocytoma/Paraganglioma: Interim Analysis Results " NIH Trial led by Dr. Frank Lin 3.a. O-9 - " Prevalence of Clonal Hematopoiesis (CH) in Neuroendocrine Tumor (NET) Patients Prior to Lutetium 177 Dotatate (Lu177): A Prospective Study " Mohamad Bassam Sonbol et al 3.b. C-32 - " Myelodysplasia and Leukemia Instances After PRRT: Experience From a Tertiary Institution" Nikolaos Trikalinos, MD et al 2.a. C-11 - " Transformation of Low-Intermediate Grade Neuroendocrine Tumors into High Grade Morphology" Dr. McGlothlin and Dr. Halfdanarson at Mayo Clinic 2.b. C-48 - " Predictors of Low-to-High Grade Progression in Pancreatic Neuroendocrine Tumors" Poster by Stephanie Wang and Dr. Emily Bergsland at UCSF 1.a. C-14 - " Cabozantinib as Salvage Therapy for Well Differentiated Grade 3 Neuroendocrine Tumors (G3 NETs)" Rylie Schnell and Dr. Halfdanarson, Mayo Clinic Comprehensive Cancer Center 1.b. C-3 - " Real-World Evidence of Lenvatinib Use for Treatment of Metastatic Neuroendocrine Neoplasms" Joao Paulo Solar Vasconcelos et al ABOUT NANETS The North American Neuroendocrine Tumor Society (NANETS) provides NET medical educational programming designed exclusively for medical professionals. While our Podcast only features 10 presentations from the NANETS October 4-6, 2023 Symposium, there are many more noteworthy abstracts found (or listed) here: NANETS Abstracts Library 2023 NANETS Abstracts Booklet 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. RESOURCES LISTEN Previous NANETS Highlights Podcast CLINICAL TRIAL INFORMATION NET Retreat Trial Information 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. THANK YOU TO OUR SPONSORS

<< Go back to the Podcast page EPISODE 26: WHAT TO KNOW ABOUT LUNG NETS Download the transcript here: LACNETS Podcast Episode 26_Lung NETs .pdf Download PDF • 208KB ABOUT THIS EPISODE What are lung NETs? What is DIPNECH? How is lung NET similar or different from lung cancer? Dr. Vineeth Sukrithan from Ohio State University Comprehensive Cancer Center gives a comprehensive overview of lung NET and DIPNECH, including the work-up and treatment options. He also discusses open clinical trials and exciting advances in lung NET research on the horizon. MEET DR. VINEETH K. SUKRITHAN Dr. Vineeth Sukrithan is a medical oncologist who specializes in the study and treatment of neuroendocrine cancer, thyroid cancer and adrenocortical cancer. He utilizes traditional chemotherapy, molecularly targeted oral medications, novel immunotherapy and peptide-receptor radiotherapies in the treatment of these unique cancers. As a comprehensive cancer center, the OSUCCC – James has unrivaled experience and expertise in the treatment of neuroendocrine, thyroid and adrenal tumors. Their world-renowned faculty are leaders in the study and treatments of these rare cancers, and as such, they are able to provide their patients with options beyond standard therapies that may not be available anywhere else. The strong focus on translational research at The James means that the treatment breakthroughs of tomorrow are being discovered in their laboratories today. Dr. Sukrithan is part of a tight-knit team of surgical oncologists, radiation oncologists and interventional radiologists who work together to provide cutting-edge care for our patients with neuroendocrine tumors. In addition to his clinical work, Dr. Sukrithan is a member of the Translational Therapeutics Program at the OSUCCC – James and the co-director of the Adrenal Tumor Clinic. He was recently selected to lead an externally funded effort through the International Thyroid Oncology Group to operationalize a multi-institutional registry database for patients with medullary thyroid cancer. Dr. Sukrithan also serves as an assistant professor in the Division of Medical Oncology at The Ohio State University and has completed postdoctoral fellowships in clinical research at Johns Hopkins University. His research has been published in numerous peer-reviewed journals, including Cancer Research, American Journal of Clinical Oncology and Clinical Lung Cancer. As every individual’s cancer is molecularly unique in countless ways, Dr. Sukrithan believes in tailoring therapies to the individual with the precision made available through cutting-edge scientific research. He feels it is a privilege to make a difference in the lives of patients as we work together to achieve a cancer-free world. TOP 10 QUESTIONS What are lung NETs? Where are they located? How are lung NETs found? What are the symptoms of a lung NET? How is lung NETs different (or similar) to what is commonly referred to as “lung cancer”? How is it different or similar to DIPNECH? Do all lung NET patients have DIPNECH and do all DIPNECH patients have lung NET? How is lung NET similar or different from other types of NETs? What makes it unique? What types of labs, scans, or testing is done to determine if someone has a lung NET and DIPNECH? What is the best type of scan for lung NETs? How do you decide if the lung NET can be surgically removed? What type of surgeon would make that determination and when in their patient journey might they see a surgeon? How are lung NETs treated medically (or nonsurgically)? How are the treatments different from other NETs? How are treatments sequenced? How are lung NETs monitored? What types of blood work, tests and scans should be done and how often should they be done? What advances in the field or clinical trials should we be aware of? What new advances or treatments in the pipeline for lung NETs are you most excited about? RESOURCES Lung NET Clinical Trials mentioned in this episode: PRRT TRIAL for lung NET: phase 2 trial studying the effect of lutetium Lu 177 dotatate (PRRT) compared to the usual treatment (everolimus) in treating patients with somatostatin receptor positive ADVANCED bronchial Neuroendocrine Tumors CABINET: Cabozantinib in Advanced pNET and Carcinoid Tumors A Phase II Clinical Trial of Nivolumab and Temozolomide for Neuroendocrine Neoplasms in Clinical Cancer Research Lung NET Resources: LACNETS Lung NET Resources Lung NET Clinical Trials in the LACNETS Clinical Trials Guide WATCH: https://www.youtube.com/watch?v=21HKeWI0d3g NET Patient Dorinda shares her NET Journey https://www.youtube.com/watch?v=Mww9tKWZxfQ "Focus on Lung Carcinoid Tumors" with Dr. Robert Ramirez https://www.youtube.com/watch?v=STkKpCVNtXo "Update on Lung NETs" with Dr. Sukhmani K. Padda 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. THANK YOU TO OUR SPONSORS

<< Go back to the Podcast page EPISODE 11: PATHOLOGY FOR NETS Download a Transcript of this Episode >> ABOUT THIS EPISODE How do you understand your pathology report? What is tumor grade, differentiation, mitotic index, and ki67? How do you get a second opinion on your pathology? NET expert and pathologist Dr. Sue Chang of City of Hope answers ten common questions about pathology for neuroendocrine tumors. Dr. Chang defines important keywords to help you understand your pathology report which is instrumental in guiding treatment decisions. MEET DR. SUE CHANG Sue Chang, M.D., is an assistant clinical professor and interim chief of the Division of Anatomic Pathology in the Department of Pathology . Dr. Chang graduated cum laude from Harvard University in Cambridge, Massachusetts, and went on to receive her medical doctorate from New York Medical College in Valhalla, New York. Later, she completed an anatomical/clinical pathology residency at UCLA Health, where she was a chief resident and a resident informaticist. She furthered her training with a cytopathology fellowship at UCLA Health and a surgical pathology fellowship at Brigham and Women's Hospital in Boston. Board certified in anatomic pathology, clinical pathology, cytopathology and clinical informatics, Dr. Chang is the recipient of many honors and awards. She has published several articles in the peer reviewed literature, and has been invited to present her work nationally. Dr. Chang's professional interests include thyroid pathology and pathology informatics. She is active in the College of American Pathologists, currently serving as the chair for the Professional and Community Engagement Committee. She has written several blog posts and participates in patient-facing informational panels, with the goal of increasing public awareness and knowledge of pathology reports and laboratory testing. In her free time, she enjoys collecting rare and vintage medical books, reading historical fiction, karaoke and home gardening. TOP 10 PATHOLOGY QUESTIONS 1. How do I find and understand my pathology report? What should I pay attention to in my pathology report? 2. What type of staining should be done for NET tumors? 3. How does the tumor location play a role in what testing a pathologist might do? 4. What is tumor grade, why is it important, and how is that determined? How is grade different from stage? 5. What is ki67? How reliable is this? 6. What is mitosis or mitotic index? 7. What is differentiation and how do you decide this? Is it ever ambiguous? How are poorly differentiated tumors different from other tumors? 8. What do typical and atypical mean and when might we see this? 9. Can there be different grades within the same tumor or between multiple tumors? How do I understand a pathology report that showed mixed neuroendocrine neoplasms? 10. Should I get a second opinion with my pathology? If so, how is that done? Also, how long are pathology specimens typically stored? ADDITIONAL RESOURCES https://www.youtube.com/watch?v=VkgoByozjX0 "Your Pathologist & Your Pathology Report" with Dr. Chang and Dr. Li Click here for another helpful resource on how to read your pathology report. 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. THANK YOU TO OUR SPONSORS

<< Go back to the Podcast page EPISODE 49 - Understanding Carcinoid Syndrome & GLP-1 Drugs in Neuroendocrine Tumors Download a Transcript of this Episode >>> ABOUT THIS EPISODE 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. In the second half of the episode, Dr. Dillon shares insights from his separate line of research on GLP-1 receptor agonist weight-loss drugs (such as Ozempic® and Mounjaro®) and their potential implications for neuroendocrine tumor patients. (Note: this topic is unrelated to carcinoid syndrome.) MEET DR. JOSEPH DILLON Dr. Dillon is a Professor of Medicine in the Division of Endocrinology at the University of Iowa Hospitals and Clinics. He directs the University of Iowa Neuroendocrine Multidisciplinary Tumor Clinic. This was the first and only US NET Clinic to be recognized as a Center of Excellence by the European NET Society. He is also the Director of the PheoPara Alliance Center of Excellence at University of Iowa. His clinical practice is entirely focused on the care of people with neuroendocrine tumors, both carcinoid type and paraganglioma. He has participated in clinical trials and publications related to diagnostic and therapeutic nuclear agents and drug therapies in this population. Prior to focusing on NET he made important discoveries in the field of GLP-1 which are now becoming of importance to NET patients taking popular weight loss drugs. TOP TEN QUESTIONS: What is carcinoid syndrome? Who is affected by carcinoid syndrome? How does someone know if they have carcinoid syndrome? 3.What are the tests for carcinoid syndrome? How is carcinoid syndrome distinguished from other causes of my symptoms? *Could the tests be negative but someone still have carcinoid syndrome? Can someone have no evidence of neuroendocrine tumors and still have carcinoid syndrome? For those who have carcinoid syndrome, what additional tests should they have? Why should carcinoid syndrome be treated? What are the possible issues if it is not treated? How is carcinoid syndrome treated? *What is on the horizon for carcinoid syndrome treatment? Can carcinoid syndrome be prevented or detected early? Is there anything people can do to prevent or lessen carcinoid syndrome symptoms? Are there any factors that worsen carcinoid syndrome such as age, weight or other diseases? You recently published a study discussing possible risks of using certain weight loss drugs in people with neuroendocrine cancer. Could you tell us more about this study? What was the drug and what did you find? What does it mean? What do you want the NET patient community to understand about your recent findings? RESOURCES WATCH Educational Videos on Diarrhea Watch Dr. Dillon’s video (3:41min) - " How Do GLP-1 Agents Factor Into Neuroendocrine Tumor Care Strategies?" (Nov 5, 2025) LISTEN EXPLORE Carcinoid Heart Disease Resources Somatostatin Analogue (SSA) Resources Xermelo Resources Paltusotine in Carcinoid Syndrome Clinical Trial READ Shilyansky J. et al. (2025). " GLP-1R agonist promotes proliferation of neuroendocrine neoplasm cells expressing GLP-1 receptors " Download Article >>> DISCLAIMER The Neuroendocrine Cancer Foundation Podcasts are created for educational purposes only and do not substitute for medical advice. The views shared in this Podcast are the personal opinions of the experts and do not necessarily reflect the views of the Neuroendocrine Cancer Foundation. Please contact your medical team with questions or concerns about your individual care or treatment. THANK YOU TO OUR SPONSORS

<< Go back to the Podcast page EPISODE 27: WHAT TO KNOW ABOUT NEUROENDOCRINE TUMOR LIVER METASTASES Download the transcript here: LACNETS Podcast Episode 27 Transcript .pdf Download PDF • 206KB ABOUT THIS EPISODE What do you call NETs in the liver? How often do NETs spread and what causes NETs to spread? How do you determine if surgery is an option? Dr. Xavier Keutgen from University of Chicago brings clarity to NET tumors found in the liver and describes how surgery fits in with other treatments for metastatic NETs. MEET DR. XAVIER KEUTGEN Xavier M. Keutgen MD is a board-certified, double-fellowship trained surgeon who specializes in the treatment of gastro, entero, pancreatic neuroendocrine tumors and neoplasms of the thyroid, parathyroid and adrenal glands. A native from Belgium, Dr. Keutgen graduated magna cum laude from the University of Heidelberg Medical School in Germany and completed a general surgery residency and surgical oncology research fellowship at New York Presbyterian Hospital-Weill Cornell Medical Center. He then completed a hepato-pancreato-biliary fellowship at the University Hospital of Zurich in Switzerland as well as an endocrine oncology and surgery fellowship at the National Cancer Institute, National Institutes of Health (NIH) in Bethesda, Maryland. Dr. Keutgen currently serves as the director of the Neuroendocrine Tumor Program, director of the Endocrine Research Program and co-director of the Von Hippel-Lindau Clinical Care Program at the University of Chicago Medicine . Throughout his career Dr. Keutgen has developed a particular interest in clinical, translational and basic science research. His laboratory specializes in investigating the role of radiation therapy and DNA damage repair in pancreatic, lung and small bowel neuroendocrine tumors, discovering new actionable molecular targets for neuroendocrine tumors, and elucidating new mechanisms of drug delivery for endocrine malignancies. TOP TEN QUESTIONS What is liver NETs? How often do NETs spread? Is it expected that NETs will eventually spread? If the primary tumor was already removed, do you now call this liver NET or do you still refer to it by the primary site of origin – and why? How is this different from liver cancer? What causes NETs to spread? Is there anything that is done to cause NET tumors to spread? Is there anything that can be done to keep them from spreading? How do you determine if surgery is an option? What is involved in evaluating metastases? What scans or labs are needed? How do you decide what the “tumor burden” is? How do you weigh the grade or ki67? How do you weigh tumor size? Is there a cut-off for tumor size or the number of tumors that is too much to operate? How does one decide between surgery versus other options? How often can surgery or other treatments be done? How safe is liver surgery? How do you approach surgery for someone with liver tumors who also has tumors in the tail versus the head of the pancreas? When someone has had a Whipple surgery and later is found to have tumors in the liver, what are the options? What advances in the field are you most excited about? RESOURCES LACNETS Surgery Resources WATCH: LACNETS Surgery Playlist 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. THANK YOU TO OUR SPONSORS

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<< Go back to the Podcast page EPISODE 32: FOCUS ON SOMATOSTATIN ANALOGUES (SSAs) Download a Transcript of this Episode >>> ABOUT THIS EPISODE How do SSAs work? Should all NET patients be on one? What are the side effects? Dr. Edward Wolin from Mount Sinai Health System answers several common questions about the current and future role of somatostatin analogues in NET treatment. MEET DR. EDWARD M. WOLIN Professor of Medicine, Medical Oncology, Icahn School of Medicine Director, Center for Carcinoid and Neuroendocrine Tumors Tisch Cancer Institute, Mount Sinai Health System Dr. Edward M. Wolin is an internationally renowned authority on neuroendocrine tumors. Dr. Wolin is the Director of the Center for Carcinoid and Neuroendocrine Tumors at the Tisch Cancer Institute at Mount Sinai and Professor of Medicine, Medical Oncology at the Icahn School of Medicine at Mount Sinai. The multidisciplinary Center for Carcinoid and Neuroendocrine Tumors features a robust research program with clinical trials aimed at finding the most effective treatments, including immunotherapy, biologic agents, targeted radiation therapy, and new approaches in molecular imaging for diagnosis. Dr. Wolin has pioneered innovative therapies with novel somatostatin analogs, mTOR inhibitors, anti-angiogenic drugs, and peptide receptor radiotherapy. Prior to joining Mount Sinai, Dr. Wolin was Director of the Neuroendocrine Tumor Program at Montefiore Einstein Cancer Center. Previously, he worked for more than two decades with Cedars-Sinai Medical Center in Los Angeles, where he founded and directed one of the largest Carcinoid and Neuroendocrine Tumor Programs in the country, and subsequently directed the Neuroendocrine Tumor Program at University of Kentucky. Dr. Wolin is also the Co-Medical Director for the Carcinoid Cancer Foundation and is on the Carcinoid Cancer Research Grants Scientific Review Committee for the American Association for Cancer Research. He has published in many prestigious journals, including the New England Journal of Medicine and Journal of Clinical Oncology, and is a reviewer for numerous journals, including Journal of Clinical Oncology, Molecular Cancer Therapeutics, Clinical Cancer Research, and The Lancet Oncology. During Dr. Wolin’s two decades at Cedars-Sinai Medical Center in Los Angeles, he developed a close friendship with LACNETS founder Giovanna Joyce Imbesi. Dr. Wolin was instrumental in the co-founding and development of LACNETS. LACNETS has always been very dear to his heart and he cherishes and honors the memory of Giovanna. Dr. Wolin earned his medical degree from Yale School of Medicine. He completed both his residency in internal medicine and fellowship in medical oncology at Stanford Un iversity Hospital. He was also a clinical fellow at the National Cancer Institute of the National Institutes of Health. Dr. Wolin is board certified in internal medicine and medical oncology. TOP TEN QUESTIONS ABOUT SOMATOSTATIN ANALOGUES (SSAs) FOR NETS: (1) What are somatostatin analogues (SSAs)? How do they work? (2) When and how are SSAs used? (3) Which SSA should a patient be on? What is the difference? How do you decide? Do SSAs shrink tumors? (4) How do you know if a SSA will be helpful? Should ALL NET patients be on a SSA? (5) What about patients whose tumors don’t “light up” on a DOTATATE scan? (6) H ow long can someone stay on a SSA? Do SSAs stop working after a period of time? Do people develop a “resistance” to the medication? (7) What side effects may patients experience from the shot? What can patients do to prevent or manage these symptoms? How might it affect one’s day-to-day ability to work and function? Can I live a “normal life” while taking this medication? Many patients complain of diarrhea after getting the shot. What might you recommend to prevent or manage diarrhea from the injection? I’ve heard SSAs cause issues with the gallbladder. Could you explain more about the possible correlation? Do SSAs cause diabetes? Many patients note soreness after getting the shot. What might you recommend to prevent soreness from the injection? (8) If the tumor is growing does this mean the SSA did not work? Do you continue it when patients are treated with another treatment? When do you stop a SSA? (9) What is the future of SSAs? I heard there is a pill that is available in a clinical trial. Can I take a pill instead of getting the injection? (10) What words of hope do you have for the NET community? RESOURCES READ Lanreotide + Octreotide Resources LACNETS Blog Post - "A Focus on Somatostatin Analogs (Your Monthly Shots)" LACNETS Blog Post - "The Shot" LACNETS Blog Post - "Practical Tips for Patients on the Shot Somatostatin Analog" Somatostatin Analogue (SSA) Clinical Trials 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. THANK YOU TO OUR SPONSORS