Abstract
Individuals who carry a single pathogenic CDH1 variant have a high lifetime risk of developing gastric cancer. National guidelines recommend those with CDH1 variants undergo a prophylactic total gastrectomy (PTG) in their twenties, a surgery that greatly reduces the risk of developing gastric cancer but has significant comorbidities. While research has defined various ways in which emerging adults face challenges post-gastrectomy, there is limited information about the experiences of individuals who pursued gastrectomies during, or prior to, college. This qualitative study is the first, to our knowledge, to explore individuals’ experiences going through college without a stomach.Three participants who had their stomachs removed during college were interviewed to explore their lived experiences surrounding their gastrectomies. All interviews were transcribed and coded using an inductive approach in Atlas.ti9. Twenty-two codes were utilized and six major themes surrounding participants’ gastrectomies emerged from this coding analysis: 1) Timing, 2) Physical Considerations, 3) Mental Health Considerations, 4) Academic Experiences, 5) Social Experiences, and 6) Reflections and Recommendations. Within these themes, we found that participants largely felt the surgery did not significantly compromise their college experiences. Institutions were supportive of our participants’ needs to a great degree, offering accommodations when needed. Furthermore, despite varying challenges surrounding recovery, no participant regretted having a gastrectomy when they did and all three graduated on time.
Through these findings, we offer insights for those in similar situations; we suggest ways to prepare for college without a stomach, highlight considerations when choosing a college or university, and provide support in their surgical decision-making process.