Accessibility Skip to Global Navigation Skip to Local Navigation Skip to Content Skip to Search Skip to Site Map Menu

CDH1 and HDGC - the key facts

  • Hereditary Diffuse Gastric Cancer (HDGC) is caused by inherited mutations in the E-cadherin gene (CDH1).
  • Mutation carriers have a 70% lifetime risk of developing stomach cancer.
  • Female carriers have an additional 30-40% risk of developing breast cancer (lobular type).
  • It is recommended that mutation carriers have their stomachs removed after the age of about 20 years to eliminate further risk. Otherwise, annual endoscopic surveillance is recommended, although this comes with some risk.
  • Most people return to largely normal lives 6-12 months after stomach removal (gastrectomy).
  • Annual MRIs are recommended for breast cancer surveillance.

HDGC in New Zealand

  • There are about 450 known HDGC families worldwide, with new families being identified each week.
  • There are approximately 25 known HDGC families in New Zealand.
  • HDGC was first identified in New Zealand in a research partnership between an affected whanaū from the Bay of Plenty and the University of Otago.

HDGC Management Guidelines

  • The guidelines for CDH1 testing criteria and clinical management        

  IGCLC guidelines 2015 pdf

  • Patient guidelines 

CDH1 journey by our whānau - my hospital passport pdf

Research into CDH1 at Te Aho Matatū