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 

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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

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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 

1. What is carcinoid syndrome? 
2. 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 can still have carcinoid syndrome?
4. Can someone have no evidence of neuroendocrine tumors and still have carcinoid syndrome?
5. For those who have carcinoid syndrome, what additional tests should they have?
6. Why should carcinoid syndrome be treated? What are the possible issues if it is not treated?
7. How is carcinoid syndrome treated? *What is on the horizon for carcinoid syndrome treatment?
8. Can carcinoid syndrome be prevented or detected early? 
9. 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? 
10. 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

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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

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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?

• Thyroid
• Parathyroid
• Adrenal

9. 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

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ABOUT THIS EPISODE

Neuroendocrine cancer care typically involves a multidisciplinary team which sometimes involves an Advanced Practice Provider (APP). In this episode, Moffitt Physician Assistant Tiffany Valone clarifies the role of an APP in neuroendocrine cancer.

TOP TEN QUESTIONS 

1. What is a NP/PA/APP? -Are you a doctor? How are you different from or similar to a doctor? - How is your role similar to or different from a nurse practitioner? 
2. How did you enter the neuroendocrine cancer or NET world? How did you learn about neuroendocrine cancer? Could you be considered a NET expert? 
3. What is your role in the neuroendocrine cancer world? What is your role with your medical team? 
4. If I go to your institution to see a neuroendocrine cancer expert, how is it determined which provider I will see?
5. If I see you (or another NP/PA), would I also see a doctor? If yes, when/how? If not, why/why not and how does this work? What does a “team approach” mean?
6. Who goes over scan results? Is this something you can do?
7. Who orders my scans and treatments?
8. If I have a question or concern, who do I communicate with and what’s the best way to communicate?
9. How are your recommendations communicated with someone’s local oncologist?
10. What advice do you have for patients when they receive differing opinions?

*Bonus: How do you continue to learn and keep up to date with neuroendocrine cancer? What recommendations would you have for patients who would like to encourage their local oncologists or APPs to learn about neuroendocrine cancer?

ABOUT TIFFANY VALONE

Tiffany Valone is a Physician Assistant and Manager of the GI and Senior Adult Advanced Practice Providers at Moffitt Cancer Center in Tampa, FL. She started her career at Moffitt in 2006 in GI medical oncology focusing on treating patients with colorectal and pancreaticobiliary cancers. A few years into her career she joined Dr. Jonathan Strosberg to help with his growing neuroendocrine practice.  For the past 16 years she has been an integral provider within this multidisciplinary team.  She was awarded Moffitt’s Advanced Practice Provider of the Year in 2012 and the North American Neuroendocrine Tumor Society’s AHP/APP of the Year in 2024. She is also a member of Moffitt's APP Professional Clinical Ladder Executive Committee and spearheads Moffitt’s APP Grand Rounds lecture series. She has a passion for teaching and mentoring new providers in the NET field. She has given presentations on NETs and other GI malignancies at both state and national conferences. In her spare time, she enjoys traveling with her husband and three children or relaxing at the beach.  

For more information, visit https://www.ncf.net/podcast/46

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One of the key aspects of one’s neuroendocrine cancer care is building your medical team, which typically includes a medical oncologist. In this episode, Medical Oncologist Dr. Sandy Kotiah from Mercy Medical Center in Baltimore expounds on the role of a medical oncologist. She sheds light on the first appointment, communication, and care coordination. 

TOP TEN QUESTIONS

1. What is your role in the neuroendocrine cancer world? What is your role with your medical team?
2. What is a medical oncologist? What training is involved? Is a medical oncologist the same thing as a hematologist oncologist? 
   • What’s the difference between a medical oncologist & surgical oncologist (& radiation oncologist)?
3. What is a NET expert and how does someone become a NET expert?
   • When I’m looking for a NET expert, what type of doctor am I looking for? 
   • How do I know if I’m with a “NET expert”? If I call a medical institution, will I automatically get assigned to a “NET expert?” If someone tells me they are a “NET expert,” does that mean that person is a NET expert?
4. What can I expect on my first appointment? What type of information do you try to communicate with your patients during the first appointment? 
   • Newly diagnosed patients often come to their first appointment feeling scared and overwhelmed. They wonder “how long do I have,” worry about how fast the cancer is growing, and are unsure of what to tell their family and friends. How do you address these concerns?
   • What questions should I be asking my oncologist?
5. When/how often should I see my medical oncologist? 
   • Who goes over my scan results with me? When does that happen/How soon after a scan should I expect results? 
   • Who communicates the tumor board discussions?
6. How is care coordinated with other providers on my team within the same institution? 
   • How is care coordinated with other providers from different institutions (i.e. with a local oncologist and a NET expert)?
7. What happens if someone wants a second opinion? How do you feel about second opinions?
   • How do I navigate or work through a situation in which there are differing opinions between doctors? 
8. If I have a question, concern, or symptoms, who do I communicate with and what’s the best way to communicate? 
   • What if we “run out of time” during an appointment? 
   • What if it’s a question or concern I’m shy about communicating?
9. Some people struggle with trust because of past experiences with providers who might have ignored or minimized their symptoms. What advice do you have to help build trust with my doctor? What would you say is my responsibility as a patient and your responsibility as the oncologist? 
10. If there is one thing you would like all people living with neuroendocrine cancer to know, what would it be?

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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 DR. ALEXANDRIA PHAN

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.

For more information, visit NCF.net.

What is Carcinoid Heart Disease (CHD)? Which NET patients develop CHD?  Retired cardiologist and carcinoid heart disease specialist Dr. Jerome Zacks provides an overview of CHD and describes the appropriate screening, diagnosis, and treatment. 

MEET DR. JEROME ZACKS

Dr. Jerome Zacks is a Cardiologist/Carcinoid Heart Disease Specialist; retired since December of 2021; but remain active as Associate Clinical Professor of Medicine at the Icahn Medical School at Mount Sinai in New York City and founding member of the Center for Carcinoid and Neuroendocrine Tumors at the Icahn Medical School at Mount Sinai; founder of the Carcinoid Heart Center; formerly on the Medical Advisory Board of the Carcinoid Cancer Foundation;  currently head the Electrocardiography course for the 4th Year Medical Student elective at the Mt. Sinai Medical Center which has resulted in an international reputation among students seeking Cardiology training in the United States. 

 He has expertise in matters of health care Insurance Carriers' theft of funds from the Medicare program, has studied patterns of abuse in the Medicaid program and has extensive knowledge of pharmaceutical company abusive practices. 

Dr. Zacks continues to devote time to the care of patients with Carcinoid Heart Disease. He has served as a member of the Guidelines Committees of the European Neuroendocrine Tumor Society (ENETS) and of the North American Neuroendocrine Tumor Society (NANETS).   He developed a new approach to compression stockings for patients with leg edema; he was granted a patent for this innovation.  He has authored two national petitions urging Congress to mandate that any health care professional who uses one’s license, in making decisions which influence a patient’s care, be held to the SAME STANDARD OF CARE as the patient’s treating professional. (These two petitions were blocked by Senator Cory Booker.)  In his role as patients’ physician, he has attempted to remove barriers of communication.  His business card includes his personal mobile phone number as well as his email address and website information; He encourages patients to phone for immediate answers to urgent matters.  Along with his wife, Yelena - an RN- they have devoted their professional lives to patients with heart disease from rare Neuroendocrine tumors. They have mentored 5 children, and are now learning from them and their 6 grandchildren have provided the real fuel and excitement for their lives.

For more information, visit https://www.ncf.net/podcast/43

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In this special episode, medical oncologist and NET expert Dr. Diane Reidy-Lagunes engages in an open and honest discussion on sensitive topics, including sexual health, family planning and end-of-life discussions. She also answers common questions regarding cannabis use with cancer, as well as the relationship between sugar and cancer. Dr. Reidy shares information and insights from her decades of experience as well as from the award-winning “Cancer Straight Talk” podcast from Memorial Sloan Kettering Cancer Center (MSKCC) that she created and hosted, and she relates these topics to NET patients and their loved ones.

TOP TEN QUESTIONS 

1. What is cancer? Is NET cancer?
2. Should I follow a certain diet? Does sugar feed cancer? 
3. Can I exercise if I have metastatic neuroendocrine cancer?
4. What does having neuroendocrine cancer mean for my romantic life? How does it affect dating?
5. What does having neuroendocrine cancer mean for my sexual health?
6. What does having neuroendocrine cancer mean for fertility and family planning? Can I have children?
7. How do I talk to my kids about cancer?
8. How will I know when it’s time for end-of-life discussions?
9. Should I consider cannabis?
10. What advice do you have about improving communication with my doctor?

For more information, visit NCF.net.