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.