Abstract
Individuals identified as at high risk of developing Hereditary Diffuse Gastric Cancer (HDGC) are advised to undergo prophylactic surgery - have their stomach removed - in their early twenties. Research with (older) cancer patients who undergo gastrectomy for curative reasons suggests that gastric resection has a number of physical and psychosocial sequelae. Because it is difficult to extrapolate the findings of studies of older cancer patients to younger healthy patients who are considering prophylactic total gastrectomy (PTG), the aim of this qualitative interview study was to determine the psychosocial implications of undergoing prophylactic surgery to manage genetic risk. Fourteen men and 13 women from the UK’s Familial Gastric Cancer study who had undergone PTG were invited to participate in qualitative interviews. Most reported that undergoing surgery and convalescence was easier than anticipated. There was evidence that age affected experiences of PTG, with younger patients tending to report faster recovery times and more transient aftereffects. All saw the benefits of risk reduction as outweighing the costs of surgery. Surgery was described as having a range of physical impacts (disrupted appetite, weight loss, fatigue, GI symptoms) that had related psychological, social and economic implications. Those considering PTG need to be aware that its impact on quality of life is difficult to predict and negative sequelae may be ongoing for some individuals.
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Acknowledgments
This study was funded by a grant from the Sir Halley Stewart Trust to NH, JL, CC and RCF; we gratefully acknowledge this support. The Familial Gastric Cancer Study, from which study participants were recruited, is funded by infrastructure grants to the Cambridge NIHR Biomedical Research Centre and the Cancer Research UK funded ECMC at the University of Cambridge. The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the National Institute for Health Research, the NHS or the Department of Health. NH would also like to thank the Fondation Brocher, Geneva, Switzerland who so generously supported her while she was writing this paper. The authors thank all individuals who so kindly participated in the interviews.
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Nina Hallowell, Julia Lawton, Shirlene Badger, Sue Richardson, Richard H Hardwick, Carlos Caldas, and Rebecca C. Fitzgerald declare they have no conflict of interest.
Human Studies and Informed Consent
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5).
Informed consent was obtained from all patients for being included in the study.
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No animal studies were carried out by the authors for this article.
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Hallowell, N., Lawton, J., Badger, S. et al. The Psychosocial Impact of Undergoing Prophylactic Total Gastrectomy (PTG) to Manage the Risk of Hereditary Diffuse Gastric Cancer (HDGC). J Genet Counsel 26, 752–762 (2017). https://doi.org/10.1007/s10897-016-0045-8
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DOI: https://doi.org/10.1007/s10897-016-0045-8