Decision-making and regret in patients with germline variants undergoing prophylactic total gastrectomy.

Introduction: Prophylactic total gastrectomy (PTG) can eliminate gastric cancer risk and is recommended in carriers of a germline pathogenic variant. PTG has established risks and potential life-long morbidity. Decision-making regarding PTG is complex and not well-understood.

Methods: Individuals with germline pathogenic or likely pathogenic variants who underwent surveillance endoscopy and recommended for PTG were evaluated. Factors associated with decision to pursue PTG (PTG) or not (PTG) were queried. A decision-regret survey was administered to patients who elected PTG.

Results: Decision-making was assessed in 120 patients. PTG patients (63%, 76/120) were younger than PTG (median 45 vs 58 years) and more often had a strong family history of gastric cancer (80.3% vs 34.1%). PTG patients reported decision-making based on family history more often and decided soon after diagnosis (8 vs 27 months) compared with PTG. Negative endoscopic surveillance results were more common among PTG patients. Age >60 years, male sex and longer time to decision were associated with deferring PTG. Strong family history, a family member who died of gastric cancer and carcinoma on endoscopic biopsies were associated with decision to pursue PTG. In the PTG group, 30 patients (43%) reported regret which was associated with occurrence of a postoperative complication and no carcinoma detected on final pathology.

Conclusion: The decision to undergo PTG is influenced by family cancer history and surveillance endoscopy results. Regret is associated with surgical complications and pathological absence of cancer. Individual cancer-risk assessment is necessary to improve pre-operative counselling and inform the decision-making process.

Trial Registration Number: NCT03030404.