Pheochromocytomas and paragangliomas are rare neuroendocrine tumors that occur inside or outside the adrenal glands. Affecting approximately 1 in 3,000 people, pheochromocytomas and paragangliomas are unique tumors in that they can produce excessive amounts of “fight or flight” hormones that can cause over 100 different signs and symptoms. The symptoms can come and go and without warning but if left untreated can cause life-threatening damage. 

In this episode of NETWise, we will explain what these tumors are and how they are different from other NETs, the genetic aspects of these tumors; why it’s so important for pheochromocytoma and paraganglioma patients to be managed by a team of doctors who specialize in these tumors, surgical options; drug therapies and new nuclear medicine treatments that are offering hope to patients.

On average, it takes three years from the time a patient begins experiencing symptoms before a correct diagnosis is reached. You’ll have a chance to hear Eli Soto’s story. He was diagnosed in 2018 but doctors estimate the pheo was slowing growing inside him for more than a decade. Eli shares his incredible journey and the lessons he learned that could help other patients.

NET experts featured in this episode:

Use our episode infographics to get a visual picture of some of the things we have discussed.

Bonnie Bennett
Nurse Coordinator for the Neuroendocrine Tumor program
University of Pennsylvania

Dr. Lauren Fishbein
UCHealth and the University of Colorado School of Medicine

Samantha Greenberg
Genetic Counselor and Paraganglioma Clinic Manager
Huntsman Cancer Institute 

Dr. Joseph Dillon
University of Iowa

Dr. Erik Mittra
Chief of Nuclear Medicine and Molecular Imaging
Oregon Health and Science University

Dr. Nancy Perrier
Head of Surgical Endocrinology
MD Anderson Cancer Center

Dr. Nancy Sharma
Medical Oncologist
Swedish Cancer Institute

Check out where pheochromocytomas and paragangliomas, both very rare NETs, can occur in the body.