Clinical Management of HDGC

HDGC Clinical Guidelines Updated

strand of DNA

Increasing awareness of HDGC and the rapid advances in genetic diagnostic tools, endoscopic modalities, and the increasing use of laparoscopic surgery led a group of clinical geneticists, gastroenterologists, surgeons, oncologists, pathologists, molecular biologists, dietitians, and patients’ representatives from nine different countries to convene a workshop in order to update the management guidelines for this condition set in 2010 and to propose directions for future research.

Read the latest HDGC Clinical Guidelines

The workshops were held in 2014 and 2019. Our Founder, Karen Chelcun Schreiber, had the privilege of participating in the workshops, and to represent those patients and families she has talked with and learned from over the years through her work with No Stomach For Cancer.

IGCLC guideline 2015 JMG 1 pg1
The new guideline was published online in August 2020 in the Lancet Oncology

The groups organize to discuss a variety of topics including genetic testing, surgery, surveillance strategies, pathology reporting, and the patient’s perspective on multiple aspects, including diet post gastrectomy.

Workshop discussions are focused on five major topics:

  • Genetic counseling and mutation analysis
  • Endoscopic surveillance and screening of cancer
  • Risk-reduction surgery of the stomach and breasts
  • Pathological specimen processing and diagnosis
  • Patients’ and dietician’ perspective

Updates and new areas addressed in the latest guideline include:

Diffuse Gastric Cancer map
Diffuse Gastric Cancer map
  • Updated cancer risks for CDH1 mutation carriers
  • Broadened criteria for genetic testing
  • Genetic testing lab perspective
  • Panel sequencing
  • Psychosocial effects of counseling
  • Pregnancy and assisted reproduction
  • Post-gastrectomy symptoms and treatment options
  • Post-surgical care and nutrition
  • Patient advocacy and the next steps in patient care and HDGC research

In addition, supplementary protocols have been published along with the guidelines:

Updated Consensus Guidelines for HDGC

Download the updated guideline here.


Hereditary Diffuse Gastric Cancer: The past, the present, and hope for the future

Speaker: Dr. Parry Guilford, BSC, MSC, PHD
Professor, Cancer Genetics Laboratory University

No Stomach for Cancer benefit concert