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NET Testing < Back to Topics Play Video Play Video 18:28 06. NET Testing: The What, When, How and Why (Dr. Namrata Vijayvergia) - 2022 LACNETS Conference Dr. Neena Vijayvergia addresses the what, when, how and why of NET testing. Presenter: Namrata Vijayvergia, MD Medical Oncologist, Fox Chase Cancer Center 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 35:16 "Understanding NET Diagnosis" with Dr. Chandrasekharan • 2024 #LACNETS Patient Conference 2. "Understanding NET Diagnosis" with #Dr.Chandrasekharan 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. < Back to Topics Next Topic >

<< Go back to the Podcast page EPISODE 20: GASTRIC NET, GASTRINOMAS & ZOLLINGER-ELLISON SYNDROME (ZES) Download a Transcript of this Episode >> ABOUT THIS EPISODE 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. MEET DR. DAVID C. METZ 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. TOP 10 QUESTIONS 1. What is Gastric NET? How is it found? What are the symptoms? How does it differ from “stomach cancer” or other types of NETs? 2. How is Gastric NET treated and how is it monitored? 3. What is a Gastrinoma? How and where is it found? Are Gastrinomas and Gastric NET the same thing? 4. How is a Gastrinoma treated? 5. How is a Gastrinoma monitored? How often do you recommend Endoscopies or Gastrin level lab testing? Does a high Gastrin level mean someone has a Gastrinoma or are there other causes? Can you have a high Gastrin level without having a gastrinoma? 6. What is Zollinger-Ellison Syndrome? How is it found? What are the common symptoms from ZES/functioning Gastrinomas? 7. How is Zollinger-Ellison Syndrome treated? How is Zollinger-Ellison Syndrome monitored? Does ZES put you at risk for other conditions/complications? 8. What is a common Proton Pump Inhibitor dose for someone with ZES? Is there a danger in taking PPIs for a long time or in high doses? 9. I’ve been told I have an ulcer? Am I at risk for cancer? 10. What are advances for gastric nets, gastrinomas or Z-E syndrome that we should be aware of or excited about? *Bonus question: What last words of hope would you like to leave the NET community with? RESOURCES https://www.youtube.com/watch?v=dVY3Ws3qm0s Patient Story: Zollinger-Ellison Syndrome and Gastrinoma Shaunie shares her experience living with Zollinger-Ellison syndrome and a functioning gastrinoma of the pancreas. READ Consensus Guidelines for the Management and Treatment of Neuroendocrine Tumors The North American Neuroendocrine Tumor Society Consensus Paper on the Surgical Management of Pancreatic Neuroendocrine Tumors The North American Neuroendocrine Tumor Society Consensus Guidelines for Surveillance and Medical Management of Pancreatic Neuroendocrine Tumors Diagnosis of Zollinger-Ellison syndrome in the era of PPIs, faulty gastrin assays, sensitive imaging and limited access to acid secretory testing Diagnosis of the Zollinger–Ellison Syndrome Gastric Neuroendocrine Tumors (Carcinoids) Neuroendocrine Tumors: Reappraisal of Type in Predicting Outcome 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 18: MENTAL HEALTH & NETS Download a Transcript of this Episode >> ABOUT THIS EPISODE What are the common mental health issues associated with NET? How can they be managed? How does NET impact young adults, NET patients and children of NET patients? Health psychologist Dr. Kersting of the Medical College of Wisconsin elaborates on mental health challenges facing NET patients and their loved ones. Hear coping strategies for anxiety, eating and sleeping difficulties, fatigue and depression. Dr. Kersting discusses what you can expect when meeting a mental health professional and why supporting your mental health is an integral part of your overall care. MEET DR. KAREN KERSTING Karen Kersting, PhD, is a licensed clinical psychologist who provides counseling and psychotherapy to patients treated by surgeons in the Division of Surgical Oncology at the Medical College of Wisconsin. She completed an undergraduate degree in Journalism at the University of Wisconsin—Madison, a PhD in Counseling Psychology at Virginia Commonwealth University in Richmond, VA, and a postdoctoral fellowship in clinical health psychology at the Dayton Veterans Administration Medical Center in Dayton, OH. She joined the faculty of MCW in 2016. Dr. Kersting’s research interests include the development and assessment of integrated psychosocial services for people coping with cancer diagnosis and treatment, with an emphasis on patients diagnosed with cancer of the pancreas. Additionally, her work aims to highlight issues related to social determinants of health and Acceptance and Commitment Therapy interventions. TOP 10 QUESTIONS 1. How common are mental health issues in NET patients? What are the most common mental health issues you see in NET and what can be done about it? 2. How does anxiety impact NET patients? Why is it so prevalent in these patients? When do I know I need to reach out for support with my anxiety? What does treatment for anxiety look like? 3. How does depression impact NET patients? 4. What kind of sleep problems do you see in NET patients? 5. How do you work with patients who have long periods of fatigue? 6. How can a psychologist help people who are struggling to eat after treatment? 7. How can a patient, loved one, or physician tell the difference between a symptom such as fatigue or anxiety caused by NET tumors vs. a psychological trigger? Does it matter? How does one’s mental health impact one’s NET disease or the effectiveness of treatments? 8. Discuss how NET may impact young adult NET patients? How does NET impact young adult children, teenagers, and young children of NET patients? 9. Who should see a psychologist? When should someone see a psychologist? How does one find a psychologist? What should a patient expect when they come for a first visit with a mental health professional such as a psychologist, therapist, social worker or other? 10. What coping strategies or advice do you have for NET patients? What coping strategies or advice for family members or loved ones? RESOURCES READ Acceptance and Commitment Therapy Dr. Kersting's Publications Elephant & Tea Magazine JOIN AYA Neuroendocrine Cancer Group (Young Adult Private Facebook Group) LACNETS RESOURCES Wellness Resources Resources for Children Grief Resources Caregivers 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 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 31: CLINICAL TRIALS: EXPECTATIONS VS. REALITIES (PART I & II) Download a Transcript of Part 1 >> Download a Transcript of Part 2 >> ABOUT THIS EPISODE In this 2-part series, we reprise “Navigating Clinical Trials: Expectations vs Realities” with Taymeyah Al-Toubah. This was previously broadcast on August 19th, 2023, as a LACNETS monthly educational webinar. In Part 1, Taymeyah discusses clinical trial terminology, timeline, questions to ask, and misconceptions. In Part 2, Taymeyah answers questions about logistics and practical aspects of clinical trials, such as costs, response time, and follow-up. She also answers frequently asked questions about PRRT trials, including alpha trials. MEET TAYMEYAH AL-TOUBAH, MPH Taymeyah Al-Toubah is a clinical researcher, currently at Moffitt Cancer Center, who has been in the research field for 10 years. She began her career in 2013 while obtaining her bachelors degrees in biomedical sciences and psychology, working in pediatric and neonatal research at Johns Hopkins All Children’s Hospital. In 2016, she shifted her career focus to oncology, beginning with phase I trials and working in all solid tumors. She completed her Master of Public health in epidemiology in 2017 and focused her graduate thesis on neuroendocrine tumors. In 2018, she switched departments to focus exclusively on NETs. From 2018 – 2023, she was the primary NET coordinator in the GI department, managing all clinical trials while leading the GI team, managing the NET clinic coordination amongst the ancillary departments, and working on all retrospective and non-interventional NET research. She has worked on protocol development, database analysis, and manuscript writing, resulting in over 30 published manuscripts and presented her research at several national and international oncology and NET conferences, with oral abstracts at several ENETS and NANETS conferences. In April 2023, she formally transitioned to a new position as a project manager of the NET program where she will continue to mentor new coordinators, while working on protocol development and writing, manuscript writing, non-interventional clinical trials, and retrospective NET research. One of her first major projects will be to curate and develop a master database of all NET patients seen at her institution that will provide the basis for all future NET research to be published at Moffitt. She is currently on the board of one of the first NET patient advocacy groups in Florida (FLaNET Carcinoid Community), which kicked off alongside the Tampa Regional NANETS meeting in November 2022. She is an active member in NANETS on the Continuing Education and Symposium Planning committees. She plans to dedicate the remainder of her career to this disease and community. Her ultimate plan is to attend medical school, specialize in medical oncology, and continue to serve the academic NET community and patient base as a physician and clinical investigator. RESOURCES READ Glossary: Common Terms in Clinical Trials Navigating Clinical Trials: Expectations vs Realities - Slides from August 19, 2023 LACNETS Educational Event "How to Prepare for Clinical Trials" Info Sheet WATCH https://www.youtube.com/watch?v=CXW71vedhIw 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 6: DECISION-MAKING FOR NETS Download a Transcript of this Episode >> ABOUT THIS EPISODE How do NET experts decide what treatments are right for you? How do I learn about current clinical trials? In our sixth episode, NET expert and medical oncologist Dr. Daneng (Dan) Li of City of Hope answers 10 common questions about decision-making for NETs including finding the primary tumor site, bone mets, tumor grades, and the role of adjuvant therapy. MEET DR. DANENG (DAN) LI Daneng Li, M.D. , is an assistant professor in the Department of Medical Oncology & Therapeutics Research at City of Hope, specializing in treating gastrointestinal cancers. Dr. Li currently leads the liver tumors program and is also the co-director of the Neuroendocrine Tumor Program at City of Hope. Dr. Li earned his undergraduate degree from The Ohio State University in Columbus, Ohio, graduating summa cum laude. He then went on to receive his medical doctorate from Weill Cornell Medical College in New York, before pursuing an internship and residency in internal medicine at New York-Presbyterian Hospital/Weill Cornell Medical Center. He then completed a hematology/oncology fellowship at Memorial Sloan-Kettering Cancer Center in New York City. Board certified in internal medicine and medical oncology, Dr. Li serves on several national committees focused on his specialty tumor types. He has authored several publications in the peer reviewed literature, and has presented his work nationally. TOP 10 QUESTIONS 1. How important is it to find the primary tumor site? How much effort should go into pursuing this? How common is it to have a NET with an unknown primary site? 2. What do you do when someone who has been diagnosed with NET has elevated tumor markers and symptoms but scans show no evidence of disease? 3. What’s the difference between a functional and nonfunctional NET? 4. How are bone mets treated? 5. How concerned would you be with a patient’s bone marrow during PRRT treatment especially if they have bone lesions? 6. Do tumor grades ever change? 7. When would you recommend doing another biopsy? 8. What is the role of adjuvant therapy for NET? 9. When do YOU consider clinical trials for NET patients? 10. How do patients or advocates find out about clinical trials and decide if that’s the best option for them? DISCLAIMER LACNETS Podcasts are created for educational purposes only and do not substitute for medical advice. The views shared in this Podcast are the personal opinions of the experts and do not necessarily reflect the views of LACNETS. Please contact your medical team with questions or concerns about your individual care or treatment. THANKS TO OUR SPONSORS

< Back to the upcoming events page MONTHLY Virtual NET Caregiver Support Group Meetings Typically the last Saturday of every month 8:00 - 10:00 AM Pacific 2025 Dates: Jan 18, 2025 Apr 26, 2025 Jul 19, 2025 Oct 18, 2025 Feb 15, 2025 May 31, 2025 Aug 23, 2025 Nov 22, 2025 Mar 22, 2025 Jun 28, 2025 Sep 27, 2025 Dec 20, 2025 We provide a safe space where NET Caregivers can come together virtually for support, connection and community. We encourage you to express your experiences, thoughts and feelings in this safe space. Unlike our weekly networking group, our Caregiver Support Group does not focus on exchanging information on medical resources. Instead, we focus on the unique experiences and concerns of caregivers and provide emotional support to those affected by NET. *OPEN TO NET CAREGIVERS ONLY. The zoom link is provided in the RSVP confirmation and will also be emailed to you prior to the support meeting. Questions? Need technical support? Email events@LACNETS.org . *Limited spots available. REGISTER THANKS TO OUR SUPPORTERS

<< Go back to the Podcast page EPISODE 8: PRRT (PART 1) Download a Transcript of this Episode >> Listen to Episode 9: PRRT (Part Two) with the Director of Nuclear Medicine of UCLA Health >> Listen to Episode 10: PRRT (Part Three) with Josh Mailman >> ABOUT THIS EPISODE Curious about PRRT? Wondering what a PRRT day looks like, what side effects you might experience, and what precautions you should take? NET expert and Administrative Nurse Lindy Gardner of UCLA Health answers 10 common questions about the before, during and after of PRRT. Lindy explains how to prepare for your treatment day, what to expect on the day of the treatment, and radiation precautions following PRRT including travel, vaccinations, and fertility and breastfeeding recommendations. MEET LINDY GARDNER, MSN Lindy Gardner, MSN is the lead nurse for the UCLA Peptide Receptor Radionuclide Therapy (PRRT) program. She is one of the authors of the NANETS/SNMMI Procedure Standard for Somatostatin Receptor–Based Peptide Receptor Radionuclide Therapy with 177Lu-DOTATATE. Lindy earned a Bachelors of Science in Nursing from Dundee University Scotland. TOP 10 PRRT QUESTIONS 1. What can I expect on the day of PRRT infusion? What is the day like and what side effects might I experience? 2. What do I need to do to prepare for PRRT? Can I eat and drink normally the day of the treatment 3. What are the side effects after PRRT and how are they managed? 4. How concerned should I be about the radiation I’m receiving and the long-term effects? 5. What precautions should be taken, especially with small children or pets or others in the house that might be immunocompromised? 6. Does PRRT affect fertility and are there issues with pregnancy or breastfeeding after getting PRRT? 7. How should I travel home? Do I need to sit in the back seat of the car? 8. How soon can one travel after PRRT? In particular, when can one get on a plane? 9. Do I need to sleep in a separate bed and if so, how long? 10. Am I immunocompromised after my PRRT treatment? Do I need to avoid getting vaccines and am I more susceptible to bacteria and viruses? ADDITIONAL RESOURCES Read the LACNETS Blog Post "These Four Letters: PRRT" >> 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

< Back to the upcoming events page COMPREHENSIVE GUIDE TO LUNG NEUROENDOCRINE CANCERS This is a 2-session comprehensive guide to lung neuroendocrine cancers. Session A covers Typical Carcinoid and Atypical Carcinoid. Session B covers Large Cell Neuroendocrine Carcinoma and Small Cell Lung Cancer. Watch the session that pertains to your diagnosis. Session A: "Typical Carcinoid & Atypical Carcinoid" https://www.youtube.com/watch?v=owZRDf3ISM4 Session B: "Large Cell Neuroendocrine Carcinoma & Small Cell Lung Cancer" https://www.youtube.com/watch?v=LxXdXMKpaCo Click here for the presentation slides from the above video. ABOUT AMAN CHAUHAN, M.D. Aman Chauhan, MD, earned his medical degree from the Kasturba Medical College in Manipal, Karnataka, India, followed by a dual residency in internal medicine and pediatrics at Louisiana State University in New Orleans. Dr. Chauhan completed his fellowship in hematology and oncology at the University of Kentucky, especially focusing on neuroendocrine tumor (NETs). Additionally, Dr. Chauhan completed a Cancer Therapy Evaluation Program (CTEP) physician externship at the National Cancer institute (NCI) that focused on designing clinical trials and clinical research projects. His clinical interests include treating NETs, including carcinoid tumors, high-grade neuroendocrine carcinomas, and small and large cell neuroendocrine carcinoma. Dr Chauhan leads the University of Miami Neuroendocrine Cancer Program and co-leads Sylvester Theranostics Drug Development Program. He is national principal investigator on several investigator initiated neuroendocrine cancer clinical trials. He has authored over 70 scientific publications and book chapters and has received a career development award from NCI CTEP. Dr Chauhan also serves on AJCC and ASCO NET guideline committees and is an active member of NANETS communication committee. Dr. Chauhan is board certified in internal medicine and medical oncology. He is a member of the American Society of Clinical Oncology as well as the American Association of Cancer Research and the North American Neuroendocrine Tumor Society. 'OUR CANCER STORIES' SURVEY Researchers are currently conducting an international study approved by the NUS Ethics Committee (NUS-IRB-2023-320) to examine the relationship between emotional well-being and recovery for cancer patients. Our Cancer Stories' goal is to gather anonymous insights from individuals (aged 30-70) diagnosed with prostate and lung cancer about their personal experiences. To ensure the success of this research, they are seeking cancer patients willing to share their stories through an online survey with the option of reimbursement of $20 USD upon completion. This is a confidential, online survey that will take about 30 minutes to complete. Survey responses will be used to create stories that will be published on a website called Our Cancer Stories ( www.ourcancerstories.com ). These stories are aimed at providing readers (e.g. cancer patients, survivors, caregivers, and those with loved ones affected by cancer) with information useful in making informed decisions in fighting cancer, while providing comfort and solidarity. Take the Survey 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. THANKS TO OUR SPONSORS

<< Go back to the Podcast page EPISODE 13: NET ONCOLOGY Download a Transcript of this Episode >> ABOUT THIS EPISODE Is it okay for NET patients to take “statin” medications to lower cholesterol or SSRI medication for depression? How often should full body scans be done? NET oncologist Dr. Jun Gong of Cedars-Sinai Medical Center addresses ten common questions you might ask your NET oncologist along your NET journey. MEET DR. JUN GONG Dr. Jun Gong is a medical oncologist of the Gastrointestinal Disease Research and Carcinoid and Neuroendocrine Tumors Group in the Samuel Oschin Comprehensive Cancer Institute at Cedars-Sinai. His primary clinical interests are in gastrointestinal (GI) cancers with a multidisciplinary focus of care along with colleagues from surgery, gastroenterology, radiation oncology, and radiology. He is focused on translational and clinical cancer research in early therapeutic trials and biomarker development to improve patient outcomes in GI cancers. TOP 10 NET ONCOLOGY QUESTIONS 1. Which is better -- if the tumor is expressing somatostatin on its receptors by DOTATATE scan or biomarker in tissue biopsy? 2. Since the somatostatin analogues bind to somatostatin receptors, can NET patients take “statin” medications for high cholesterol? 3. Is there a link between psychiatric medications and NETS? Can someone with NET take selective serotonin receptor inhibitors SSRI or SNRI? 4. What is the difference between genetic and genomic testing? When would you do genetic screening/testing and when would you do genomic testing/tumor sequencing? 5. Is it possible to find NET markers on serum or blood by using mass spectrum without biopsies? Is there a promising liquid biopsy? 6. How often should full body scans be done to discover metastases to other body parts? 7. Can well differentiated tumors become poorly differentiated? 8. Can NETs produce multiple hormones? Should one try to control any production of any hormones for general prevention? Should we control serotonin production generally? 9. How aggressive should you be to seek out new treatments when tumor burden is stable? (Some patients want to get rid of tumors so side effects of tumors are lessened.) 10. How common is having issues with liver functionality? What are the signs of liver failure due to tumor burden? 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 4: NET BASICS Download a Transcript of this Episode >> ABOUT THIS EPISODE Newly diagnosed? Or need to brush up on your NET basics? Medical oncologist and NET expert Dr. Andrew Hendifar of Cedars-Sinai Medical Center addresses 10 common questions including labs, scans, genetic testing, and prognosis. MEET DR. ANDREW HENDIFAR The current research focus of Andrew Hendifar, MD , is on developing new therapies for pancreatic cancer and neuroendocrine tumors. Dr. Hendifar has helped form multidisciplinary teams that specialize in the treatments of pancreatic cancer, and carcinoid and neuroendocrine tumors. Dr. Hendifar is the primary investigator for several groundbreaking therapies, including radioimmunotherapy for neuroendocrine tumors, anti-inflammatory therapy for pancreatic cancer and novel approaches to cancer cachexia. His national roles include SWOG GI Committee Member and a member of NIH Neuroendocrine Tumor Task Force. He also serves on the steering committee member for the Precision Promise Consortium and chairs the associated Supportive Care Committee. At Cedars Sinai he leads the Gastrointestinal Disease Research Group and is the founding Director of the Hematology and Oncology Fellowship Program. TOP 10 NET BASICS QUESTIONS 1. I’ve just been diagnosed with NET. What do I need to know? (3:45) 2. What do I do now? (4:53) 3. What causes NET? (Did I do anything to cause it? Does stress cause NET?) What makes NET tumors grow or spread? (7:40) 4. Is it genetic/should I have genetic testing? Do my family members need to get screened or tested for NET? (12:34) 5. How long do I have? (15:55) 6. How do I know if my tumors are growing or spreading? (20:19) 7. What labs do I need to have and how often? What tumor markers should I be getting? What does it mean if my Chromogranin A is high? (26:00) 8. What scans do I need to have and how often? Should I be getting a CT scan or MRI? What’s the difference? (29:37) 9. How do I know if my tumors are functional or nonfunctional? (33:17) 10. How can we as patients or caregivers help YOU as our NET oncologist make the appointment go better (or help you do your job better)? (41:24) 11. *Bonus: How might I prepare for the appointment? What’s the best way to communicate? (43:35) ADDITIONAL NET BASICS RESOURCES NET VITALS LACNETS Newly Diagnosed Information & Resources https://www.youtube.com/watch?v=r2NKM35a46I NETS 101 - Dr. Sandy Kotiah https://www.youtube.com/watch?list=PLPAgUIq-85n-RDzmx4FMlnn767YTicsHI&v=MLYx_vY4PV0 "What to Expect with a NET Expert Consultation" with Dr. Heloisa Soares https://www.youtube.com/watch?list=PLPAgUIq-85n9pZE-B5NadOH0Znb1rfjPR&v=q9bgkYB6A7w "Qué esperar de una consulta de expertos de NET" con Dr. Heloisa Soares (Spanish) https://www.youtube.com/watch?list=PLPAgUIq-85n9pZE-B5NadOH0Znb1rfjPR&v=fCxxPvBM3Eo "Manejo Sintomatico de los Tumores Neuroedocrinos Funcionales" - Dr. Jaydira Del Rivero (Spanish) https://www.youtube.com/watch?list=PLPAgUIq-85n-RDzmx4FMlnn767YTicsHI&v=WA02D1F48sg "Symptom Management" with Dr. Jaydira Del Rivero 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

Caregiver Resources Virtual NET Caregiver Support Group 1. Virtual NET Caregiver Support Group 2. Free Health Coaching for Caregivers 3. Organizations Offering Resources for Caregivers 4. Organizing Help/Communication 5. Caregiver Self-Care Resource 6. End-of-Life Planning 7. Resources for Children 8. Learning Resources About Caregiving 9. Patient & Caregiver Stories VIRTUAL NET CAREGIVER SUPPORT GROUP Join LACNETS via Zoom every month. We would like to provide a safe space where NET caregivers can virtually come together for support and community. Register Here FREE HEALTH COACHING FOR CAREGIVERS LACNETS offers a series of FREE one-on-one telephonic coaching sessions (8-10 total) to NET caregivers within the Southern California region who are motivated to invest in their own self-care. Sign Up Here ORGANIZATIONS OFFERING RESOURCES FOR CAREGIVERS Cancer Support Community Centers for Disease Control and Prevention Springboard Beyond Cancer Cancer & Careers National Cancer Institute Click here to download the "When Someone You Love Has Advanced Cancer" booklet American Cancer Society Click here to download the Interactive Caregiver Resource Guide Triage Cancer Quick Guide to Caregiving Animated Video: Supporting Caregivers (available in English, Spanish, and closed captioning) Caregiving Resources Page Legal & Financial Navigation Program Additional Resources for Caregivers Share Your Story (NETRF) The Emotions of Living With Neuroendocrine Tumors (NETRF) Assistance and Support for Neuroendocrine Tumors (NETRF) Living Well with Serious Illness (NETRF) Livestrong Caregiver Support Oncolink Caregivers Information & Resources www.HelpForCancerCaregivers.org National Alliance for Caregiving Family Caregiver Alliance NCI: Caring for the Caregiver and Taking Time: Support for People With Cancer Cancer Hope Network American Cancer Society: Caregivers and Family AARP - Senior Care Needs ORGANIZING HELP/COMMUNICATION www.mealtrain.com www.lotsahelpinghands.com www.caringbridge.org https://www.abridge.com/patients CAREGIVER SELF-CARE RESOURCE https://www.caregiver.org/resource/taking-care-you-self-care-family-caregivers/ END-OF-LIFE PLANNING LACNETS Webinar - "Meaningful Advance Care Planning as a Gift to Your Loved Ones" EverPlans - To help prepare/plan for challenging times Practical Considerations when providing Palliative Care to patients with Neuroendocrine Tumors in the context of routine disease management or hospice care EndWell Project Five Wishes Hospice Foundation Guide (useful for more than hospice) Death Over Dinner Coda Alliance - Empowering easier, early, end-of-life conversations Click here for Grief and Loss Resources RESOURCES FOR CHILDREN CancerCare for Kids® provides free, professional support services for parents, children and adolescents affected by cancer, as well as information about helping children understand cancer and additional resources. Learn more here. Help with Hope is a support group to the children whose parent has cancer. If you are a parent with cancer and have a child between the ages of 8 and 17, they can attend an online meditation support group with other kids who understand what they are going through, parents are also invited! Learn more here. Kesem is committed to creating a world where every child who has a parent with a cancer diagnosis or has lost a parent to cancer is never alone. Kesem supports these children through and beyond their parent’s cancer with free, fun-filled creative programs and a lasting community. Learn more here. Lynn Lyons helps families navigate through fear and anxiety. Click here to learn more. LEARNING RESOURCES ABOUT CAREGIVING LACNETS Webinar: " How to Ask For, Accept and Get the Help You Need" with Kim Hamer LACNETS Webinar: “Meaningful Advance Care Planning as a Gift to your Loved One” with Redwing Keyssar, RN Listen Now: NETwise Podcast PATIENT & CAREGIVER STORIES Patient/Caregiver Stories Play Video Share Whole Channel This Video Facebook Twitter Pinterest Tumblr Copy Link Link Copied Now Playing 03. Patient Story - Kimberly, NET Patient • 2025 Regional Patient Event • Arizona • ⁨@NCFCancer⁩ 08:09 Play Video Now Playing A Patient Journey • Aramís Lorié • 2025 NET Cancer Day Symposium 03:38 Play Video Now Playing Living with NET: The Patient Perspective • 2025 NCF Event • July 10, 2025 01:16:25 Play Video Resources for Children Organizing Help/Communication Free Health Coaching for Caregivers Caregiver Self-Care Resource End-of-Life Planning Organizations Offering Resources for Caregivers Learning Resources About Caregiving Patient & Caregiver Stories BLOG POSTS "What Matters Most" - Lisa Yen "What it Means to be a Caregiver" - Beth Voyles