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  • Hereditary Diffuse Gastric Cancer (HDGC) is caused by inherited mutations in the E-cadherin gene (CDH1).
  • Mutation carriers have a 56-70% lifetime risk of developing stomach cancer.
  • Female carriers have an additional 39-55% risk of developing breast cancer (lobular type).
  • It is recommended that mutation carriers have their stomachs removed after the age of about 20-30 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 from age 30.

HDGC in New Zealand

  • There are over 500 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 whānau from the Bay of Plenty and the University of Otago.

HDGC Management Guidelines

There is a wealth of information to be found on Diffuse Gastric Cancer specific websites including:

A pamphlet for NZ based patients:

Research into CDH1 at Te Aho Matatū

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