“How do you live without a stomach?”: A multiple case study examination of total gastrectomy for palliation or prophylaxis

Abstract

This currently represents the only study to investigate the lived experience of TG for prophylaxis or palliation in individuals with and without genetic risk for stomach cancer. Understanding this process will allow all members of the cancer care team, and the patients themselves, to better understand the factors involved in decision making and postoperative adjustment. Fruitful avenues for future research are discussed.

An investigation of the factors effecting high-risk individuals’ decision-making about prophylactic total gastrectomy and surveillance for hereditary diffuse gastric cancer (HDGC)

“…Our data suggest that family history of disease, particularly witnessing a relative’s illness and death from gastric cancer, is a powerful incentive for surgery. In this respect our findings concur with case studies of surgical decision-making for HDGC, for example, Garland et al report that one of their patients regarded his sister’s death as the ultimate trigger for his decision to undergo PTG [16]. Similarly, Lynch et al argue that growing awareness of the familial cancer burden was a particularly important determinant of risk perceptions and surgical decisions in one of their families in which eleven first cousins underwent PTG after receiving confirmation of their CDH1 carrier status and witnessing a parent die of gastric cancer[10].…”

“…It is suggested that the speed of decision-making may be related to the fact that some interviewees have definite thresholds or triggers for surgical risk management, for example, a positive genetic test result or a positive biopsy. Similar observations have been made by Garland et al, [16], who report a series of case studies of patients undergoing gastrectomy for prophylactic and palliative reasons and suggest that surgical decisions are primarily prompted by a triggering event; specifically, a relative dying from gastric cancer, having a positive biopsy result or receiving a diagnosis of metastatic disease. The impact of objective confirmation of cancer risks on surgical decision-making has also been observed in carriers of HNPCC and FAP mutations [19,21].…”

“…While risk perception and cancer burden may be important triggers for surgical decisions, our data suggest individuals’ perceptions of surgical outcomes and attitudes about endoscopic screening are also very influential. Gastrectomy has some very obvious or visible consequences such as extreme weight loss, altered eating habits and fatigue [4], all of which may negatively affect individuals’ ability to work, socialise or parent, and, thus, potentially impact individuals’ quality of life post surgery [16, 26–27]. Indeed, some of our interviewees reported that they had been deterred initially from undergoing PTG as a result of observing negative clinical and psychosocial sequelae in other family members.…”

“…There has been no systematic attempt to study the factors affecting decisions to undergo PTG. Anecdotal accounts and case reports of CDH1 testing suggest that anxiety about developing cancer; worry about long-term impact of surgery on quality of life and responsibility to family and others influence surgical decisions [10,16–17] There is evidence that mutation carriers are generally satisfied with their decision to have PTG [10]. Lynch et al, [10] report that those who refuse surgery cite as reasons: variable age of disease onset/no disease in CDH1 carriers; the potential negative impact upon employment, family life and insurance status; confidence in surveillance and regarding surgery as too extreme.…”

Patient, nursing and medical staff experiences and perceptions of the care of people with palliative esophagogastric cancer: a systematic review of the qualitative evidence

“…21 This review found that patients became more aware of their body and specifically swallowing as a result of their illness and that eating became a chore. The management of dysphagia and the physical experience of dysphagia in EG cancer have been extensively studied 22,25,31,32,35,38,39 and it was not the purpose of this study to specifically investigate the impact and management of dysphagia. …”