Webinar on Pheochromocytoma and Paraganglioma

Introduction

• Speaker: Rochelle Michette, moderator and data manager at University of New Mexico's Cancer Research Center.
• Personal story about pheochromocytoma (referred to as "Theo").
  • Intense abdominal pain led to tumor discovery on adrenal gland.
  • Eight months to see an endocrinologist due to provider shortage.
  • Blood and urine tests showed borderline plasma results.
  • Functional test imaging (MIBG) confirmed pheochromocytoma.
  • Surgery confirmed the tumor.
• Need for proper diagnosis protocols.

Theopara Alliance

• Empowerment and education for patients, families, medical professionals.
• Upcoming events:
  • Peer support meeting: July 11th.
  • Webinar: July 18th.
  • Regional conferences: Omaha, Bethesda, Gainesville, Phoenix.
  • Awareness Week: Last week of August.

Presenters

Dr. Jaap Lenders

• Background in internal medicine and pheochromocytoma research.
• Developed diagnostic test for pheochromocytoma.
• Key contributions to medical guidelines and research.

Dr. Christina Pomperocchi

• Specializes in internal medicine, endocrinology, and diabetes.
• Holds patents related to endocrinology.
• Focus on adrenal unit research.

Presentation Overview

• Focus on biochemical testing for pheochromocytoma and paraganglioma.
• Key questions addressed:
  • Measurement of catecholamines vs. metanephrines.
  • Blood vs. urine testing.
  • Impact of medication on results.
  • Reference values and reliability of diagnostic tests.
  • Follow-up protocols.

Key Topics

Measurement of Metanephrines

• Metanephrines preferred over catecholamines due to continuous production.
• Blood testing recommended for free metanephrines.
• Urine testing for fractionated metanephrines (24-hour collection preferred).

Collection Protocols

• Blood sampling: Supine rest for at least 20 minutes.
• Avoid testing under stress or illness.
• Diet has minimal impact unless measuring 3-methoxytyramine.

Diagnostic Performance

• Plasma metanephrines have a higher diagnostic performance than urine.
• Considerations for test precision and patient convenience.

Medication Impact

• Potential analytical and pharmacodynamic interferences.
• LC-MS method minimizes interference.

Reference Values

• Age-adjusted cutoffs for metanephrines.
• Variation in reference values between labs.

Test Performance

• False negatives and false positives: Importance of correct sampling methods.
• Reliability of metanephrines over catecholamines.

Follow-up and Recurrence

• Importance of longitudinal follow-up post-surgery.

Q&A Highlights

• Supine vs. upright catecholamines testing.
• Chromogranin A not recommended for testing.
• Disparity in plasma vs. urine norepinephrine results explained.
• Teaching healthcare teams about VEO testing.

Closing Remarks

• The importance of educational and support resources for pheochromocytoma and paraganglioma patients.
• Acknowledgment of contributions from sponsors and organizers.