The Neuroendocrine Cancer Foundation Podcast - Top 10 FAQs with neuroendocrine cancer experts

Neuroendocrine Cancer Foundation
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The Neuroendocrine Cancer Foundation Podcast is a monthly series where we interview neuroendocrine cancer experts on various NET topics. Each expert will answer the top 10 FAQs in their area of expertise. Whether a listener is newly diagnosed, a longtime NET survivor, or a family member or loved one, the Neuroendocrine Cancer Foundation Podcast serves as a tool to help anyone better understand neuroendocrine cancer. For more information, visit www.ncf.net/podcast.

  1. Aug 13

    Episode 54: "Focus on Cabozantinib" with Dr. Vijayvergia

    Since its FDA approval on March 26, 2025, cabozantinib has emerged as the newest treatment option for neuroendocrine tumors (NET) patients—adding another valuable tool to the treatment toolbox. It’s become a hot topic in support groups and forums, with many patients wondering what to expect. In this episode, Fox Chase Cancer Center medical oncologist Dr. Namrata (“Neena”) Vijayvergia answers the most frequently asked questions about cabozantinib. She explains how it works, how it differs from other therapies, what patients should know about dosing and side effects, and shares insights on a new clinical trial exploring the next generation of cabozantinib. TOP TEN QUESTIONS 1. What is cabozantinib? Is it considered chemotherapy?  2. How does cabozantinib work? What do we mean by “targeted therapies”? 3. Who is cabozantinib typically recommended for?  When in someone’s NET journey do you consider starting it? 4. Why might a patient take cabozantinib instead of other treatment options? Is this a “last resort” treatment option?  Does it limit future choices or “burn any bridges”? 5. What are the most common side effects?  Will I look like a cancer patient? Will my hair fall out? How might I feel while taking it—can most people keep working and doing their usual activities?                                              Do common side effects tend to develop or get worse over time, or pretty much stay the same? 6. What should patients watch out for or monitor while taking this medication? 7. What should patients know about dosing?  Is there a preferred starting dose or an “optimal” dose? If I tolerate a lower dose, should I go to a higher dose?  8. What happens if cabozantinib doesn’t work for me? What other treatments might be available? 9. I’ve heard about a drug called “Zanza,” the STELLAR-311 trial. What is it, and how does it fit into the current treatment landscape? 10. What practical tips or “tricks of the trade” do you share with patients who may start this medication? Bonus: What’s on the horizon in NET research or treatment that you’re most excited about? ABOUT THE SPEAKER Namrata (Neena) Vijayvergia, MD, FACP, is a GI medical oncologist, clinical trialist, and physician leader known for bringing science, collaboration, and heart to the care of patients with gastrointestinal and neuroendocrine cancers. She is Section Chief of Gastrointestinal Oncology at Fox Chase Cancer Center and an Associate Professor, where she leads a broad research program—from early-phase therapeutics to biomarker-driven strategies and patient-centered outcomes—supported by NIH, NCCN, industry partners, and foundations. Neena is a frequent speaker at national and international meetings, including ASCO, NANETS, ESMO, and SNMMI, and was recently honored with the 2025 Distinguished Clinical Award from NANETS. She helps set national standards through service on ASCO, NCCN, ENETS, NCI, and NANETS committees and guideline panels, chairs the NANETS Scientific Review Committee, and leads cooperative group efforts within ECOG-ACRIN.  A dedicated mentor and advocate, she supports trainees and junior faculty through formal mentoring programs, advises patient advocacy organizations, and engages in community-focused efforts to make cancer care more inclusive and equitable. Recognized in the ASCO Leadership Development Program and as a “40 Under 40 in Cancer,” she brings a strategic yet people-first approach to clinical trial development—always driven by the belief that teamwork, curiosity, and compassion can move the field forward for patients and the teams who care for them. Visit https://www.ncf.net/podcast/54 for more resources.  For more information, visit NCF.net.

    Episode 54: "Focus on Cabozantinib" with Dr. Vijayvergia

  2. Apr 12

    Episode 53: Spotlight on Surgical Oncology

    In this episode, surgical oncologist Dr. Seth Concors of Emory’s Winship Cancer Institute discusses the role of the surgical oncologist within the multidisciplinary care team for neuroendocrine cancer. We explore what surgical oncologists do, why NET-specific experience matters, how surgical decisions are made, and what patients can expect during a surgical consultation. The conversation highlights coordination across care teams, common patient concerns, and the importance of informed decision-making and second opinions, offering practical guidance for patients and caregivers navigating surgical care in neuroendocrine cancer. TOP TEN QUESTIONS  Understanding the Surgeon’s Role 1. What is a surgical oncologist, and what kind of training does that involve? How is a surgical oncologist similar to—or different from—other types of surgeons? Patients may hear the term “HPB surgeon.” What does that mean, and how can a patient tell if their surgeon is an HPB surgeon?  2. When a patient is looking for a surgeon, how can they find someone who is the “right fit” for them? How can patients know whether a surgeon has experience with the specific operation they may need—such as a Whipple procedure, liver surgery, or lung surgery? How important is it for a surgeon to be familiar with neuroendocrine tumors specifically? 3. What should patients expect at their first appointment with a surgical oncologist? What key information are you usually trying to communicate during that first visit? What questions do you encourage patients and caregivers to ask their surgeon? 4. How often should patients expect to see their surgical oncologist, and at what points in their care? Surgical Decision-Making 5. How do you determine whether someone is a surgical candidate?  What is the typical goal of surgery for neuroendocrine tumors? 6. If someone is not a surgical candidate initially, does that mean surgery is off the table forever? Are there treatments that can help make surgery possible in the future? How many NET surgeries can someone safely have over their lifetime?  Can major surgeries—such as extensive liver resections—affect eligibility for future treatment options? Multidisciplinary and Coordinated Care 7. How do surgical oncologists work within a multidisciplinary care team for NET patients?  How do you collaborate with providers at different institutions, such as a local oncologist working with a NET specialty center? 8. What is your perspective on second opinions, specifically for neuroendocrine cancer? 9. Many patients worry about carcinoid crisis during surgery. How do you address and manage those concerns? Preparing for Surgery 10. Patients often ask how they can best prepare—physically and emotionally—for surgery. What guidance do you typically offer? BONUS: What research is currently being done involving neuroendocrine surgery? ABOUT THE SPEAKER Seth Concors, MD, is an academic surgical oncologist at Emory University and the Winship Cancer Institute, where he serves as Associate Program Director for both the General Surgery Residency and the Complex General Surgical Oncology Fellowship, and Director of the Surgical Oncology Research Fellowship. He leads Emory’s Peritoneal Surface Malignancy and Neuroendocrine Tumor surgical programs, with clinical and research interests focused on gastrointestinal neuroendocrine tumors, cytoreductive surgery/HIPEC, and survivorship outcomes. Dr. Concors is actively involved in national surgical societies, including SSO, SSAT, NANETS, ACS, and ECOG-ACRIN, and his work emphasizes multidisciplinary collaboration, prospective outcomes research, and surgical education. He is committed to advancing patient-centered cancer care while mentoring the next generation of surgical oncologists. For more information, visit https://www.ncf.net/podcast/53 For more information, visit NCF.net.

    Episode 53: Spotlight on Surgical Oncology

  3. Feb 3

    Episode 52: "Spotlight on Genetic Counselors" with Samantha Greenberg, PhD, MS, MPH, CGC

    ABOUT THIS EPISODE Who is a genetic counselor, and who should see one? How do they fit into the neuroendocrine cancer care team? In this episode, Samantha Greenberg, PhD, MS, MPH, CGC, Director of the UT Southwestern Genetic Counseling Program, demystifies genetic counseling and testing for NET patients and their families. She explains what to expect before, during, and after a consultation—and how results can impact care, family members, and future planning. TOP TEN QUESTIONS Role & Training 1. What is a genetic counselor? What training is required? What’s your role in the care team?  Genetic Counseling & NETs 2. How are genetic counselors involved in NET care?  3. Who should get genetic testing? Do all NET patients need it? What if more than one family member has NET? Do you also see family members without a diagnosis?4. How does one’s age play a role? Testing Basics 5. Genetic vs. genomic vs. NGS—what are these terms? How do patients know they’re getting the right test?6. Walk us through a genetic counseling consultation—before, during, after. Results & Implications 7. What if the results are positive? How do you guide patients and families? What if the results are negative or inconclusive? How accurate are tests?8. What is a “variant of unknown significance”? 9. Can environment or toxins cause hereditary mutations? Practical Guidance 10. How can patients find the right genetic counselor? Do they need to be someone who specializes in neuroendocrine cancer? ABOUT THE SPEAKER Samantha Greenberg, PhD, MS, MPH, CGC Pronouns: she/her series Director, UT Southwestern Genetic Counseling Program Assistant Professor School of Health Professions Samantha Greenberg is the founding program director of the UT Southwestern Genetic Counseling Training Program. She received her Master of Science degree in genetic counseling and public health from the University of Michigan after teaching middle school science with Teach For America in Tulsa, Oklahoma. She recently completed her Ph.D. at the University of Utah. As a cancer genetic counselor, Greenberg has provided clinical care across a variety of indications and facilitated the development of multidisciplinary teams and genetics clinics for patients with prostate cancer, von Hippel-Lindau syndrome, and paraganglioma/pheochromocytoma. She is the co-director of the paraganglioma program at UT Southwestern, which recently received a Center of Excellence designation from Pheo Para Alliance. Her passion for raising awareness on the genetics of neuroendocrine tumors stems from working with patients and a curiosity for how to optimize identification of patients with hereditary risk. For more information, visit NCF.net/podcast/52 For more information, visit NCF.net.

    Episode 52: "Spotlight on Genetic Counselors" with Samantha Greenberg, PhD, MS, MPH, CGC

  4. 12/21/2025

    Episode 51: "Highlights of the 2025 NANETS Symposium" with Dr. Will Pegna

    ABOUT THIS EPISODE In this special annual episode, OHSU medical oncologist Dr. Guillaume (“Will”) Pegna joins us once again to break down the highlights from the 2025 North American Neuroendocrine Tumor Society (NANETS) Multidisciplinary NET Medical Symposium. He walks us through the latest clinical trial results and emerging research—covering PRRT, non-PRRT therapies, liver-directed treatments, and new biomarkers—and explains what these updates mean for the NET patient and caregiver community. ABOUT DR. 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. Visit NCF.net/podcast/51 for more information  For more information, visit NCF.net.

    Episode 51: "Highlights of the 2025 NANETS Symposium" with Dr. Will Pegna

  5. 11/28/2025

    "Spotlight on Pharmacists" with Amanda Cass, PharmD, BCPS, BCOP

    ABOUT THIS EPISODE  Who is a pharmacist, and how are they involved in the care of neuroendocrine cancer patients? In this episode, Dr. Amanda Cass, a clinical pharmacist in the Thoracic Oncology Clinic at Vanderbilt Medical Center, explains the unique role pharmacists play—why they’re sometimes called “doctor,” how they support patients starting treatments such as cabozantinib and CAPTEM, and practical tips for staying organized, managing side effects, and navigating medication costs.  TOP TEN QUESTIONS  Getting to Know the Pharmacist 1. What exactly does a pharmacist do, and what training do they go through? 2. Why are pharmacists sometimes called “doctor,” and how is that different from a physician?  3. What role does a pharmacist play on the cancer care team?  4. How are pharmacists involved in caring for neuroendocrine cancer patients, both directly and behind the scenes? How Pharmacists Support Treatment 5. How can a pharmacist help when someone is starting a new treatment for neuroendocrine cancer? Walk us through an example with Cabozantinib: how do you guide patients in understanding it, taking it, and managing side effects? 6. Walk us through another example with CAPTEM (capecitabine and temozolomide): how do you guide patients in understanding it, taking it, and managing side effects? Practical Tips for Patients 7. What are some simple ways to stay organized, like keeping a medication list or symptom journal?  8. What practical tips do you share with patients about tracking and managing side effects at home? Access and Communication 9. Who can patients talk to about medication costs or financial assistance? 10. How does someone find a pharmacist to talk to, and is it important to find one with neuroendocrine cancer experience? ABOUT AMANDA CASS Dr. Cass is a clinical pharmacist in the Thoracic Oncology Clinic at Vanderbilt University Medical Center. She received her Doctorate of Pharmacy from the University of Kentucky College of Pharmacy in 2016 and subsequently completed her Pharmacy Practice Residency at Grady Health System and became a Board Certified Pharmacotherapy Specialist in 2017. In 2018, she completed her Oncology Pharmacy Residency at the University of North Carolina Medical Center. Dr. Cass's previous research interests included opioid use in non-metastatic cancer patients after curative treatment and albumin effects on oxaliplatin related toxicities. Her current areas of interest are molecular mutations and use of targeted therapies in NSCLC, immunotherapy in SCLC, and global oncology care. Dr. Cass is the preceptor for the Outpatient Thoracic Oncology Rotation. For more information, visit NCF.net/podcast/50 For more information, visit NCF.net.

    "Spotlight on Pharmacists" with Amanda Cass, PharmD, BCPS, BCOP

  6. 11/22/2025

    "Understanding Carcinoid Syndrome & GLP-1 Drugs in Neuroendocrine Tumors" with Dr. Joseph Dillon

    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.) TOP TEN QUESTIONS  What is carcinoid syndrome? Who is affected by carcinoid syndrome? How does someone know if they have carcinoid syndrome? 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 can 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 the 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?ABOUT 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. For more information, visit NCF.net/podcast/49 For more information, visit NCF.net.

    "Understanding Carcinoid Syndrome & GLP-1 Drugs in Neuroendocrine Tumors" with Dr. Joseph Dillon

  7. 10/06/2025

    "NEN Treatments: Focus On DLL3" with Dr. Rohit Thummalapalli

    ABOUT THIS EPISODE DLL3 is emerging as a promising new target for neuroendocrine cancers. In this episode, Dr. Rohit Thummalapalli, medical oncologist at Memorial Sloan Kettering Cancer Center, explains what DLL3 is, how it works, who might benefit, and what current clinical trials are teaching us. He breaks down the science, treatment options, and future directions in a way that is clear, approachable, and designed to help patients and families better understand this developing area of care. TOP TEN QUESTIONS  Understanding the Basics 1. What is immunotherapy? How does immunotherapy work? 2. What is DLL3? How does it work in the context of neuroendocrine cancer? 3. How is DLL-targeted therapy similar to or different from other types of immunotherapy? Is there evidence that one works better than another? Indications, Use, Access & Availability 4. When is DLL3 used in neuroendocrine cancers?  What types of neuroendocrine cancer might express DLL3?How does someone know if this is a potential treatment option for them?At what point in a patient’s treatment journey might DLL3 be considered?How and where DLL3 is available for neuroendocrine cancer patients? What are other ways, if any, to access DLL3?Testing for DLL3 Expression 5. How does someone find out if their tumors express DLL3 receptors?  How & where is DLL3 expression tested? It it tested through tissue samples, imaging, or something else?Is there a minimal level of DLL3 expression that is required to receive the treatment? (Does the threshold vary by trial?)Does the level of DLL3 expression differ by institution? Does the level of DLL3 expression predict how well someone might respond to treatment?Can the tumor expression of DLL3 vary from tumor to tumor? Can it vary over time, meaning can tumors gain or lose expression?Do you measure the DLL3 expression following treatment?Treatment Considerations 6. How effective is DLL3-targeted therapy in neuroendocrine cancers? What is the goal of treatment with DLL3 – shrinkage, stabilization, symptom relief? How long is it expected to work? How do you measure the response to DLL3 treatment?  7. Can DLL3 be combined with other therapies?  Decision-Making and Patient Counseling 8. How do you decide when to offer DLL3 for someone with neuroendocrine cancer?  What factors or prior treatments might make someone ineligible for DLL3 therapy?Could receiving DLL3 exclude a patient from other treatments or clinical trials?9. How do you counsel patients who are considering DLL3?   What should they know about how the treatment is given, possible side effects, and what’s known (or unknown) about long-term safety?What should one expect in terms of frequency of visits, hospitalization and side effects?Can someone still work while receiving DLL3?Looking Ahead 10. What are the key questions you hope to answer about DLL3 in the next year? What do you hope to learn over the next 3 to 5 years? ABOUT DR. ROHIT THUMMALAPALLI  Rohit Thummalapalli is a gastrointestinal medical oncologist and assistant attending physician at Memorial Sloan Kettering Cancer Center specializing in clinical care and research in patients with neuroendocrine and biliary tract cancers. Originally from Florida, Dr. Thummalapalli completed medical training at Harvard and Johns Hopkins before arriving at MSK as a medical oncology fellow in 2021, and started on faculty in 2024. For more information, visit https://www.ncf.net/podcast/48 For more information, visit NCF.net.

    "NEN Treatments: Focus On DLL3" with Dr. Rohit Thummalapalli

  8. 10/06/2025

    "Spotlight on Endocrinology" with Dr. Run Yu

    ABOUT THIS EPISODE Every provider on a multidisciplinary neuroendocrine cancer (NET) team brings a distinct and valuable perspective. In this episode, UCLA endocrinologist Dr. Run Yu sheds light on the unique role of the endocrinologist. He explains what endocrinology is, which types of NETs may require an endocrinologist's care, and how endocrine issues intersect with NET management. Dr. Yu also explores the “endocrine” side of neuroendocrine—discussing key concerns related to diabetes, thyroid, parathyroid, and adrenals. TOP TEN QUESTIONS  1. What is an endocrinologist? What training is involved?  2. Since there is “endocrine” in neuroendocrine, would NET patients need to see an endocrinologist? When should one see an endocrinologist?  What is your role with your medical team? How is an endocrinologist different from a medical oncologist?If someone with neuroendocrine cancer needs to see an endocrinologist, does that person need to specialize in neuroendocrine cancer?3. If someone sees both an endocrinologist and a medical oncologist, what do you do and what does the medical oncologist do? How are treatment decisions made or coordinated? (Who is the “quarterback?”) 4. Who orders the somatostatin injections? Are they done through the oncologist or endocrinologist? What if I need something else to control my neuroendocrine cancer symptoms? 5. What are hormonal issues? How do I know if my neuroendocrine tumor produces hormones?  6.  What hormone tests do you check?  7. What tumor markers do you check? How do you interpret them? 8. When might endocrine issues arise with neuroendocrine cancer? ThyroidParathyroidAdrenal9. How do hyperglycemia and diabetes issues relate to neuroendocrine cancer? What is hyperglycemia, pre-diabetes and diabetes?Is diabetes inevitable with NET? Is diabetes inevitable with somatostatin analogue therapy?Does metformin potentially slow down NET tumor growth?What monitoring do you recommend?10. When does one encounter hypoglycemia with neuroendocrine cancer? What is insulinoma? What is the treatment?BONUS: What is on the horizon for neuroendocrine cancer that you’re most optimistic about?  ABOUT DR. RUN YU Run Yu, MD, PhD, received his MD degree from Peking Union Medical College in Beijing and his PhD degree in pharmacology from the University of Rochester in New York. Dr. Yu completed an endocrine research fellowship, an internal medicine residency, and a clinical endocrinology fellowship at Cedars-Sinai Medical Center. Dr. Yu’s clinical and research interests include diabetes, thyroid, and endocrine tumors and syndromes. Dr. Yu enjoys describing novel clinical findings in endocrinology. For more information, visit https://www.ncf.net/podcast/47 For more information, visit NCF.net.

    "Spotlight on Endocrinology" with Dr. Run Yu
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The Neuroendocrine Cancer Foundation Podcast is a monthly series where we interview neuroendocrine cancer experts on various NET topics. Each expert will answer the top 10 FAQs in their area of expertise. Whether a listener is newly diagnosed, a longtime NET survivor, or a family member or loved one, the Neuroendocrine Cancer Foundation Podcast serves as a tool to help anyone better understand neuroendocrine cancer. For more information, visit www.ncf.net/podcast.

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