NCCN Guidelines for Patients
Stomach Cancer, Version 1.2016
Preparing for treatment
I came upon an old photo recently, circa 1962, of my mother with my three brothers and me; a typical,
ordinary family of the time. Never would I have imagined that four of my five family members in the
photo were destined to become stomach cancer patients. In 1982, my mom (52) died shortly after
her stage IV stomach cancer diagnosis. Then 25 years later, in 2007, my oldest brother (56) received
the same diagnosis. These events led me on a quest for answers: could this stomach cancer be
I learned about Hereditary Diffuse Gastric Cancer (HDGC), a syndrome sometimes related to a CDH1
gene mutation. We did not meet genetic testing criteria, but gut instinct pushed us to pursue testing.
Yes, this was the culprit.
Our lives were forever changed – this was a family cancer diagnosis. My brother was undergoing the
challenges of cancer treatment while other family members were going through genetic counseling,
testing and prophylactic (preventive) total gastrectomy (PTG).
I was first in my family to undergo surgery, followed by my younger brother. Tragically, we lost my
oldest brother in February of 2009, 17 months following his diagnosis, and just weeks before his son’s
PTG was to take place. By 2015, five family members have undergone successful PTG, proactively
eliminating the high risk of developing stomach cancer – and in each case, pathology revealed the
presence of undetected cancer in our stomachs. What an incredible gift of knowledge to have!
Back in the 80’s there were no resources, and in 2007 resources were still sorely lacking, not only for
diagnosis and treatment, but also for awareness of hereditary risk.
I am thrilled that this guide is available to help you make informed decisions about your treatment, and
to reinforce the important role that genetic risk assessment plays in the prevention and treatment of
Karen Chelcun Schreiber
Founder, No Stomach For Cancer