Skip to main content
Top
Published in: Journal of Genetic Counseling 4/2017

01-08-2017 | Original Research

The Psychosocial Impact of Undergoing Prophylactic Total Gastrectomy (PTG) to Manage the Risk of Hereditary Diffuse Gastric Cancer (HDGC)

Authors: Nina Hallowell, Julia Lawton, Shirlene Badger, Sue Richardson, Richard H Hardwick, Carlos Caldas, Rebecca C. Fitzgerald

Published in: Journal of Genetic Counseling | Issue 4/2017

Login to get access

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.
Literature
go back to reference Caldas, C., Carneiro, F., Lynch, H. T., et al. (1999). Familial gastric cancer: overview and guidelines. Journal of Medical Genetics, 36, 873–880.PubMedPubMedCentral Caldas, C., Carneiro, F., Lynch, H. T., et al. (1999). Familial gastric cancer: overview and guidelines. Journal of Medical Genetics, 36, 873–880.PubMedPubMedCentral
go back to reference Carey, S., Laws, R., Ferrie, S., et al. (2013). Struggling with food and eating – life after major upper gastrointestinal surgery. Support Care Cancer, 21, 2749–2757.CrossRefPubMed Carey, S., Laws, R., Ferrie, S., et al. (2013). Struggling with food and eating – life after major upper gastrointestinal surgery. Support Care Cancer, 21, 2749–2757.CrossRefPubMed
go back to reference Clarke, C., McCorry, N. K., & Dempster, M. (2011). The role of identity in adjustment among survivors of oesophageal cancer. J Health Psych, 16, 99–108.CrossRef Clarke, C., McCorry, N. K., & Dempster, M. (2011). The role of identity in adjustment among survivors of oesophageal cancer. J Health Psych, 16, 99–108.CrossRef
go back to reference Fitzgerald, R. C., Hardwick, R., Huntsman, D., et al. (2010). Hereditary diffuse gastric cancer: updated consensus guidelines for clinical management and directions for future research. Journal of Medical Genetics, 47, 436–444.CrossRefPubMedPubMedCentral Fitzgerald, R. C., Hardwick, R., Huntsman, D., et al. (2010). Hereditary diffuse gastric cancer: updated consensus guidelines for clinical management and directions for future research. Journal of Medical Genetics, 47, 436–444.CrossRefPubMedPubMedCentral
go back to reference Garland, S. N., Lounsberry, J., Pelletier, G., et al. (2011). How do you live without a stomach: a multiple case study examination of total gastrectomy for palliation or prophylaxis. Palliative and Supportive Care, 9, 305–313.CrossRefPubMed Garland, S. N., Lounsberry, J., Pelletier, G., et al. (2011). How do you live without a stomach: a multiple case study examination of total gastrectomy for palliation or prophylaxis. Palliative and Supportive Care, 9, 305–313.CrossRefPubMed
go back to reference Gayther, S. A., Gorringe, K. L., Ramus, S. J., et al. (1998). Identification of germ-line E-cadeherin mutations in gastric cancer families of European origin. Cancer Research, 58, 4086–4089.PubMed Gayther, S. A., Gorringe, K. L., Ramus, S. J., et al. (1998). Identification of germ-line E-cadeherin mutations in gastric cancer families of European origin. Cancer Research, 58, 4086–4089.PubMed
go back to reference Guilford, P. J., Hopkins, J. B., Grady, W. M., et al. (1999). E-cadeherin germline mutations define an inherited cancer syndrome dominated by diffuse gastric cancer. Human Mutation, 14, 249–255.CrossRefPubMed Guilford, P. J., Hopkins, J. B., Grady, W. M., et al. (1999). E-cadeherin germline mutations define an inherited cancer syndrome dominated by diffuse gastric cancer. Human Mutation, 14, 249–255.CrossRefPubMed
go back to reference Hallowell, N., Baylock, B., Heiniger, L., et al. (2012). Looking different, feeling different: Women’s reactions to risk-reducing breast and ovarian surgery. Familial Cancer, 11, 215–224.CrossRefPubMed Hallowell, N., Baylock, B., Heiniger, L., et al. (2012). Looking different, feeling different: Women’s reactions to risk-reducing breast and ovarian surgery. Familial Cancer, 11, 215–224.CrossRefPubMed
go back to reference Hansford, S., Kaurah, P., Li-Chang, H., et al. (2015). Hereditary diffuse gastric cancer syndrome: CDH1 mutations and beyond. JAMA Oncology, 1, 23–32.CrossRefPubMed Hansford, S., Kaurah, P., Li-Chang, H., et al. (2015). Hereditary diffuse gastric cancer syndrome: CDH1 mutations and beyond. JAMA Oncology, 1, 23–32.CrossRefPubMed
go back to reference Lee, S. S., Chung, H. Y., Kwon, O. K., et al. (2014). Quality of life in cancer survivors 5 years of more after total gastrectomy: a case control study. Int J Surgery, 12, 700–705.CrossRef Lee, S. S., Chung, H. Y., Kwon, O. K., et al. (2014). Quality of life in cancer survivors 5 years of more after total gastrectomy: a case control study. Int J Surgery, 12, 700–705.CrossRef
go back to reference Liedman, B. (2001). Symptom control may improve food intake, body composition, and aspects of quality of life after gastrectomy in cancer patients. Digestive Diseases and Sciences, 46, 2673–2680.CrossRefPubMed Liedman, B. (2001). Symptom control may improve food intake, body composition, and aspects of quality of life after gastrectomy in cancer patients. Digestive Diseases and Sciences, 46, 2673–2680.CrossRefPubMed
go back to reference Lynch, H. T., Grady, W., Suriano, G., et al. (2005). Gastric cancer: new genetic developments. Journal of Surgical Oncology, 90, 114–133.CrossRefPubMed Lynch, H. T., Grady, W., Suriano, G., et al. (2005). Gastric cancer: new genetic developments. Journal of Surgical Oncology, 90, 114–133.CrossRefPubMed
go back to reference Mallstrom, M., Ivarsson, B., Johansson, J., & Klefsgård, R. (2013). Long-term experiences after oesopagectomy/gastrectomy for cancer – a focus group study. Int J Nursing Studies, 50, 44–52.CrossRef Mallstrom, M., Ivarsson, B., Johansson, J., & Klefsgård, R. (2013). Long-term experiences after oesopagectomy/gastrectomy for cancer – a focus group study. Int J Nursing Studies, 50, 44–52.CrossRef
go back to reference Newman, E. A., & Mulholland, M. W. (2006). Prophylactic gastrectomy for hereditary diffuse cancer syndrome. Journal of the American College of Surgeons, 202, 612–617.CrossRefPubMed Newman, E. A., & Mulholland, M. W. (2006). Prophylactic gastrectomy for hereditary diffuse cancer syndrome. Journal of the American College of Surgeons, 202, 612–617.CrossRefPubMed
go back to reference Ollson, U., Bergbom, I., & Bosaeus, I. (2002). Patients’ experiences of their intake of food and fluid following gastrectomy due to tumour. Gastroenterology Nursing, 25, 146–153.CrossRef Ollson, U., Bergbom, I., & Bosaeus, I. (2002). Patients’ experiences of their intake of food and fluid following gastrectomy due to tumour. Gastroenterology Nursing, 25, 146–153.CrossRef
go back to reference Strauss, A., & Corbin, J. (1990). Basics of qualitative research. London: Sage. Strauss, A., & Corbin, J. (1990). Basics of qualitative research. London: Sage.
go back to reference Terdiman, J. P. (2007). Hereditary diffuse gastric cancer: surveillance endoscopy is not enough to save lives. Gastroenterology, 133, 1730–1732.CrossRefPubMed Terdiman, J. P. (2007). Hereditary diffuse gastric cancer: surveillance endoscopy is not enough to save lives. Gastroenterology, 133, 1730–1732.CrossRefPubMed
go back to reference Tyrvainen, T., Sand, J., Sintonen, H., & Nordback, I. (2008). Quality of life in the long-term survivors after total gastrectomy for gastric carcinoma. Journal of Surgical Oncology, 97, 121–124.CrossRefPubMed Tyrvainen, T., Sand, J., Sintonen, H., & Nordback, I. (2008). Quality of life in the long-term survivors after total gastrectomy for gastric carcinoma. Journal of Surgical Oncology, 97, 121–124.CrossRefPubMed
go back to reference van der Post, R. S., Vogelaar, I. P., Carneiro, F., et al. (2015). Hereditary diffuse gastric cancer: updated clinical guidelines with an emphasis on germline CDH1mutation carriers. Journal of Medical Genetics, 52, 361–374.CrossRefPubMedPubMedCentral van der Post, R. S., Vogelaar, I. P., Carneiro, F., et al. (2015). Hereditary diffuse gastric cancer: updated clinical guidelines with an emphasis on germline CDH1mutation carriers. Journal of Medical Genetics, 52, 361–374.CrossRefPubMedPubMedCentral
go back to reference Wainwright, D., Donovan, J. L., Kavadas, V., et al. (2007). Remapping the body: learning to eat again after surgery for oesophageal cancer. Qualitative Health Research, 17, 759–771.CrossRefPubMed Wainwright, D., Donovan, J. L., Kavadas, V., et al. (2007). Remapping the body: learning to eat again after surgery for oesophageal cancer. Qualitative Health Research, 17, 759–771.CrossRefPubMed
go back to reference Worster, E., Liu, X., Richardson, S., et al. (2014). The impact of prophylactic total gastrectomy on health-related quality of life: a prospective cohort study. Annals of Surgery, 260, 87–93.CrossRefPubMed Worster, E., Liu, X., Richardson, S., et al. (2014). The impact of prophylactic total gastrectomy on health-related quality of life: a prospective cohort study. Annals of Surgery, 260, 87–93.CrossRefPubMed
Metadata
Title
The Psychosocial Impact of Undergoing Prophylactic Total Gastrectomy (PTG) to Manage the Risk of Hereditary Diffuse Gastric Cancer (HDGC)
Authors
Nina Hallowell
Julia Lawton
Shirlene Badger
Sue Richardson
Richard H Hardwick
Carlos Caldas
Rebecca C. Fitzgerald
Publication date
01-08-2017
Publisher
Springer US
Published in
Journal of Genetic Counseling / Issue 4/2017
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI
https://doi.org/10.1007/s10897-016-0045-8

Other articles of this Issue 4/2017

Journal of Genetic Counseling 4/2017 Go to the issue