A message from Dr. Karel Pacak, Chair of PPA’s Medical Advisory Board
For decades, biopsy has been avoided in patients with pheochromocytoma and paraganglioma (PPGL) out of concern that disturbing the tumor could trigger a dangerous surge of catecholamines — the “fight or flight” hormones these tumors can produce. This caution shaped guidelines worldwide, including recommendations I have helped develop throughout my career.
But that caution was built mostly on individual case reports, not large-scale evidence. As a co-author on a major new international study just published in The Lancet Diabetes & Endocrinology, I’m glad to share findings that should reassure our community.
What researchers found:
Across 19 hospitals in 11 countries, researchers reviewed 234 biopsies performed in 222 PPGL patients over more than 30 years. The results were striking:
- Only 1 death occurred among the biopsies studied for this outcome, and it was caused by infection, not by hormone release.
- Serious complications related to catecholamine surges occurred in fewer than 2 out of 100 biopsies.
- Complications from the biopsy procedure itself (mainly bleeding or infection) were more common than hormone-related complications, but still low, affecting about 4 out of 100 biopsies.
- Patients without elevated hormone levels, and those who had a gentler biopsy technique (fine-needle aspiration) or biopsy of a metastatic site, had no serious hormone-related complications at all in this study.
What this means for patients:
This doesn’t mean biopsy is right for everyone — it remains a decision that should be made carefully, together with your care team, especially at centers experienced with PPGL. But this research challenges the idea that a biopsy should be automatically avoided. When a diagnosis is unclear, or when tissue is needed to guide treatment for advanced disease, biopsy may be a reasonable and safe option for many patients — not the high-risk procedure it was once assumed to be.
Talk to Your Care Team
This research is encouraging, but it doesn’t replace multidisciplinary medical advice. Whether a biopsy is appropriate for you depends on your specific tumor, hormone levels, and overall health. If a biopsy has been recommended — or avoided — as part of your care, this is a great study to bring up with your doctor. Ask whether it changes anything about your situation, and whether your care team has access to PPGL-experienced radiology or surgical support.