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Hereditary papillary renal cell carcinoma

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A patient is diagnosed with bilateral papillary type 1 renal cell carcinoma. Several family members have had similar kidney tumors.

AD; MET (proto-oncogene)

  • Type 1 papillary renal cell carcinoma
  • Bilateral/multifocal
  • No extrarenal manifestations
  • Suspect with bilateral, multifocal type 1 papillary RCC, particularly with a family history of papillary kidney tumors
  • Histology shows type 1 papillary RCC; the absence of cutaneous, uterine, or other extrarenal findings helps distinguish it from HLRCC and Birt-Hogg-Dube
  • Confirm with germline MET testing (activating proto-oncogene variants)
  • Renal surveillance with periodic abdominal imaging (MRI preferred to limit cumulative radiation given the lifelong, multifocal risk)
  • Active surveillance of small renal masses with nephron-sparing surgery at a ~3 cm threshold, reflecting the relatively indolent course of type 1 papillary tumors
  • MET-directed tyrosine kinase inhibitors are an option for advanced or metastatic disease
  • Cascade testing of at-risk relatives