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Episode 12: Pheochromocytoma & Paraganglioma (PPGL)
ABOUT THIS EPISODE In honor of Pheo Para Awareness Week, NET endocrinologist and medical oncologist Dr. Jaydira Del Rivero of the National Cancer Institute answers ten common questions about pheochromocytoma and paraganglioma (PPGL). Dr. Del Rivero defines PPGL and describes the unique symptoms, genetic testing, and treatment options for PPGL. MEET DR. JAYDIRA DEL RIVERO Dr. Del Rivero earned her medical degree from the University of Veracruz in Veracruz, Mexico and completed her internal medicine residency at Woodhull Medical and Mental Health Center/NYU-Langone Medical Center. Dr. Del Rivero completed a fellowship in Endocrinology, Diabetes and Metabolism at The Inter-Institute Endocrinology Training Program (IETP) at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), The National Institute of Child Health and Human Development (NICHD), and The National Institute of Dental and Craniofacial Research (NIDCR) where she was part of a research team developing clinical trials for pheochromocytoma and paraganglioma. She then joined as Assistant Professor at the Montefiore Einstein Center for Cancer Care (MECCC) where she specialized in endocrine oncology involving thyroid cancer, parathyroid and adrenal tumors, and clinical research for gastroenteropancreatic neuroendocrine tumors. She subsequently completed a second fellowship in medical oncology at the National Cancer Institute (NCI) with a research focus on endocrine malignancies. Dr. Del Rivero is board certified in Internal Medicine, Endocrinology, Diabetes and Metabolism and Medical Oncology. TOP 10 PPGL QUESTIONS 1. Who should be listening to this podcast episode? Do all NET patients need to know about PPGL? 2. What is PPGL? Is this a cancer? How common is PPGL? How do we know which ones have a higher risk of metastasis? 3. Is this genetic? Who should get genetic testing and when should they get it? Should family members/children get genetic testing or cancer screening? 4. What are the symptoms of PPGL? 5. How is PPGL diagnosed? What labs should be done for PPGL? What scans should I get if have PPGL? Is there a certain priority or order to which scans should get done and when? 6. What is the treatment for PPGL? How do I get appropriate treatment? How do I know what appropriate treatment is? 7. What if my disease is metastatic? What are my treatment options? 8. What if my disease recurs after surgery? What are my treatment options? Could I have surgery again? 9. Will my symptoms be gone after surgery or treatments? 10. I’ve been told I can’t get a biopsy and that surgeries might be dangerous. What do I need to know and what do I need to do? For more resources and a transcript of this episode, visit https://www.lacnets.org/podcast12. Dr. Del Rivero is a Physician Scientist in the Developmental Therapeutics Branch. She is the Principal Investigator of the Natural History Study for Neuroendocrine Neoplasm and Adrenocortical Cancer to provide the basis of further development of therapeutic interventions, prevention/screening guidelines, endpoints for future clinical trials, and patient reported outcome measures. Dr. Del Rivero’s current efforts is the development of novel treatment approaches and targeted therapies for endocrine malignancies such as advanced gastroenteropancreatic neuroendocrine tumors, adrenocortical cancer and pheochromocytoma/paraganglioma.
"Focus on Pheochromocytoma and Paraganglioma" - Jan 2023 LACNETS Educational Event
Join LACNETS for a Rebroadcast of the unique webinar presentation of three pheochromocytoma and paraganglioma (PPGL) cases and an engaging panel discussion with experts Dr. Jaydira Del Rivero, Dr. Erik Mittra, and Dr. Karel Pacak. (Original broadcast on Wednesday, January 11, 2023)
Caregiver Story - Pheo/Para
Aimee Powell, a caregiver and advocate for family members diagnosed with pheochromocytoma and paraganglioma shares what led her to a life of patient advocacy and assisting patients with these rare tumors. Aimee is the founder of The Pheo Para Project – www.pheoparaproject.org. To learn more about LACNETS, visit www.LACNETS.org.
LACNETS Webinar: "Update on Pheochromocytoma and Paraganglioma" with Dr. Jaydira Del Rivero
Have you wondered if NETs might be hereditary? What do you know about pheochromocytoma and paraganglioma (pheo/para)? NET expert Dr. Jaydira Del Rivero gives a full update on these rare and often misdiagnosed conditions. Recorded on February 17, 2022. To download a copy of Dr. Del Rivero's presentation slides, go to bit.ly/slides_feb2022. This presentation is also available in Spanish, found here: youtu.be/moN-iwvoTsI Speaker: Jaydira Del Rivero, MD, Endocrinologist, Oncologist, National Institute of Health To learn more about LACNETS, visit www.LACNETS.org.
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