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Hereditary pheochromocytoma and paraganglioma (SDHx, VHL, RET, NF1, MAX and TMEM127): lines of therapy

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6 standard-of-care settings across 3 lines and 1 biomarker subgroup. Rows come from the cancer page's standard of care; the grid places each on its line and subgroup.

LineAll comers
Screening, prevention and diagnosis3
Advanced, first line1
Other settings2

Screening, prevention and diagnosis

SubgroupSettingApproachProducts and trialsEvidence
All comersGenetic diagnosisGermline panel testing offered to every patient; SDHB immunohistochemistry on tumour tissue; cascade testing of relatives with genetic counselling.94
All comersBiochemical and imaging work-upPlasma or urinary metanephrines; CT or MRI; 68Ga-DOTATATE PET as the preferred functional scan for SDHx and other cluster 1 disease.89
All comersSurveillance of carriersAnnual metanephrines and clinical review from childhood, with whole-body MRI every two to three years in SDHB and SDHD carriers; screening for associated tumours (GIST, renal cell carcinoma, pituitary).94

Advanced, first line

SubgroupSettingApproachProducts and trialsEvidence
All comersAdvanced disease in carriersBelzutifan (approved for VHL-associated tumours 2021 and for advanced pheochromocytoma and paraganglioma 2025); lutetium-177 dotatate for somatostatin-receptor-positive disease; see the metastatic record.92

Other settings

SubgroupSettingApproachProducts and trialsEvidence
All comersAdrenal tumours in VHL and MEN2Alpha-blockade then cortical-sparing (partial) adrenalectomy to preserve adrenal function given the risk of bilateral disease.40
All comersHead and neck paragangliomasObservation for small asymptomatic tumours; surgery or fractionated or stereotactic radiotherapy when growing or symptomatic, weighing cranial nerve risk.93

Lines and subgroups are parsed from the setting text of each standard-of-care row and can misclassify an unusual phrasing; the row’s own setting is always shown. Guideline chips reflect the NCCN category and ESMO-MCBS grade recorded on the cancer page, checked on its stated date. Not medical advice.