Precision Meets Compassion: Sylvester Launches New Pheochromocytoma and Paraganglioma Clinic
Summary
- Sylvester Comprehensive Cancer Center’s Pheochromocytoma and Paraganglioma Program is a dedicated, multidisciplinary clinic designed to streamline diagnosis, treatment and long-term management for these challenging conditions.
- Sylvester is the only institution in South Florida with a dedicated, multidisciplinary PPGL clinic.
- If undiagnosed, patients can develop end-organ damage from high blood pressure, including heart failure, kidney failure and other complications.
Patients with complex and often misdiagnosed tumors of the adrenal system called pheochromocytomas and paragangliomas now have access to a dedicated, multidisciplinary clinic at Sylvester Comprehensive Cancer Center, part of UHealth—University of Miami Health System. The new program brings together experts across specialties to streamline diagnosis, treatment and long-term management for these challenging conditions.
The Pheochromocytoma and Paraganglioma (PPGL) Program is led by Tanaz Vaghaiwalla, M.D., from the Miller School’s Division of Endocrine Surgery, and Mark Jara, M.D., from the Miller School’s Division of Endocrinology, Diabetes and Metabolism. Together, they have built a clinic designed to reduce the fragmentation patients often face when navigating these rare tumors.
Sylvester is the only institution in South Florida with a dedicated, multidisciplinary PPGL clinic, positioning it as a regional referral center for the diagnosis and management of these tumors.
“We provide specialized, coordinated care for patients with pheochromocytoma and paraganglioma through a dedicated clinic, offering both surgical and endocrine perspectives in real time,” said Dr. Vaghaiwalla. “This ensures our patients receive prompt and personalized treatment whether that is surgery, advanced medical therapies or access to clinical trials.”
Care for Frequently Misdiagnosed Tumors
Pheochromocytomas and paragangliomas are neuroendocrine tumors arising from the same family of cells. Pheochromocytomas develop in the adrenal gland and often produce excess adrenaline. Paragangliomas form outside the adrenal gland and may or may not secrete hormones. Both have malignant potential and require expert, individualized care.
Although more common than many realize, these tumors are frequently misdiagnosed because their symptoms can mimic everyday conditions such as high blood pressure or anxiety.
“One of the most serious risks of this disease is that, if it goes unrecognized for too long, patients can develop end-organ damage from high blood pressure, including heart failure, kidney failure and other complications in severe cases,” said Dr. Jara. “That’s why timely diagnosis and treatment of pheo and para tumors is absolutely critical.”
Diagnosing PPGL requires a high index of suspicion to recognize patterns of symptoms and avoid attributing them solely to cardiac or mental health causes. For example, a young patient presenting with high blood pressure, palpitations and chest pain may appear to have a heart problem. But these symptoms can also reflect tumor-driven surges of adrenaline.
From a management standpoint, pheochromocytomas and paragangliomas are equally complex. Their location near critical structures and their hormonal activity demand meticulous preparation. Blood pressure must be precisely and individually controlled to ensure patients can safely undergo anesthesia and surgery. Without careful management, sudden adrenaline spikes can trigger life-threatening events such as heart attack or stroke.
One patient with a known pheochromocytoma was highly symptomatic, experiencing palpitations, severe hypertension and chest pain. She spent months searching for a physician who felt comfortable managing her tumor. When she arrived at Sylvester, she was on the wrong medications. The PPGL team quickly corrected her regimen, closely monitored her blood pressure and prepared her for surgery. Within weeks, she underwent successful surgery and is now cancer-free.
“She feels like a new person now and is off all medication—no more adrenaline surges and no more uncontrolled blood pressure,” said Dr. Vaghaiwalla.
Advancing Care Through Research and Clinical Trials
Sylvester’s PPGL Program also provides access to leading-edge research and clinical trials, an important resource for patients with advanced or metastatic disease. These include studies evaluating novel systemic therapies, targeted treatments, radiopharmaceuticals and genetic approaches for hereditary forms of PPGL. Patient cases are also presented at a dedicated tumor board for expert review and consensus.
“For patients with recurrent, metastatic or hereditary tumors we offer opportunities for therapies that aren’t widely available in many places in the state,” said Dr. Jara.
With its multidisciplinary clinic, Sylvester aims to serve as a central hub for PPGL care in Florida, delivering expert diagnosis, coordinated treatment and compassionate support for patients and their families navigating these rare and complex tumors.
Tags: cancer research, Division of Endocrinology Diabetes and Metabolism, Dr. Mark Jara, Dr. Tanaz Vaghaiwalla, endocrinology, neuroendocrine cancer, neuroendocrine disorders, Neuroendocrine Tumor Program, Newsroom, Sylverster Comprehensive Cancer Center