Prophylactic Total Gastrectomy: a Prospective Cohort Study of Long-Term Impact on Quality of Life

Hereditary diffuse gastric cancer (HDGC) syndrome is caused by germline mutations in the CDH1 gene and carries a lifetime gastric cancer risk of approximately 70 % in men and 56 % in women. Current consensus guidelines recommend that people of age ≥20 who harbor a CDH1 mutation undergo prophylactic total gastrectomy (PTG). However, the decision to proceed with a major visceral resection for prophylactic reasons may be difficult, especially since long-term outcomes are not well defined. We examined the decision-making process, physical symptoms, and psychosocial outcomes in adults who underwent PTG.

Participants completed pre- and post-operative questionnaires that included standardized measures of health-related quality of life (HRQOL), body image, psychological distress, regret, and decisional conflict. Those who declined surgery completed a questionnaire that measured decisional conflict and explored reasons for their choice.

Forty of fifty (80 %) questionnaires distributed to 18 individuals were completed. In the 13 patients who underwent PTG, global HRQOL tended to decrease immediately post-operatively, climb to baseline by 6-12 months, then decrease again at 24 months. Body image and level of psychological distress remained relatively stable, and most patients expressed little decisional conflict or regret. All five individuals who declined surgery did so for practical reasons and would consider surgery in the future.

While most patients do not experience negative psychosocial consequences following PTG, mild physical symptoms persist and may affect long-term HRQOL. The present study emphasizes the need for long-term follow-up of this unique population of survivors.