Background: Hereditary diffuse gastric cancer (HDGC) is a familial cancer syndrome causing an increased risk of diffuse gastric cancer, particularly in young adults. Individuals known to carry a genetic mutation in the E-cadherin gene (CDH1) have a 70% lifetime risk of developing gastric cancer and women have a 20-40% risk of developing breast cancer. Individuals known to carry CDH1 mutations are provided with a personalized cancer risk management plan coordinated by the genetics and gastrointestinal teams.
The two options open to individuals who carry an altered CDH1 gene are surveillance or risk-reducing surgery. Surveillance is unproven and there is no evidence that early detection impacts on morbidity/mortality. Thus, high risk individuals are encouraged to consider the option of prophylactic (preventive) risk reducing gastrectomy (RRG) or stomach removal, in their early twenties, with the aim of reducing morbidity and mortality from cancer. Women are recommended to undergo MRI/mammography or consider risk-reducing mastectomy
Although the medical benefits of RRG are well understood very little is known about the psychosocial implications of total gastrectomy, including the impact on quality of life and how patients adjust in the short and long term. What is it like to live without a stomach?
Aims:
1. to explore the psychosocial implications of having a RRG and
2. to explore and understand these individuals’ information and support needs.

Results: To date a total of 7 in depth telephone or face to face semi-structured interviews have been undertaken. Participants report RRG is “life changing’. They describe the surgery as worthwhile although physically and mentally challenging in the short and long term. Recovery is more than healing of their wound. Participants describe having to find a new normal in areas such as adjusting to the side effects from surgery, change in relationship to food, and adjustment required when socialising.