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Journal of Gastrointestinal Surgery

, Volume 20, Issue 12, pp 1950–1958 | Cite as

Prophylactic Total Gastrectomy: a Prospective Cohort Study of Long-Term Impact on Quality of Life

  • Jennifer Muir
  • Melyssa Aronson
  • Mary-Jane Esplen
  • Aaron Pollett
  • Carol J. SwallowEmail author
Original Article

Abstract

Background

Hereditary diffuse gastric cancer (HDGC) syndrome is caused by germline mutations in the CDH1 gene and carries a lifetime gastric cancer risk of approximately 70 % in men and 56 % in women. Current consensus guidelines recommend that people of age ≥20 who harbor a CDH1 mutation undergo prophylactic total gastrectomy (PTG). However, the decision to proceed with a major visceral resection for prophylactic reasons may be difficult, especially since long-term outcomes are not well defined. We examined the decision-making process, physical symptoms, and psychosocial outcomes in adults who underwent PTG.

Methods

Participants completed pre- and post-operative questionnaires that included standardized measures of health-related quality of life (HRQOL), body image, psychological distress, regret, and decisional conflict. Those who declined surgery completed a questionnaire that measured decisional conflict and explored reasons for their choice.

Results

Forty of fifty (80 %) questionnaires distributed to 18 individuals were completed. In the 13 patients who underwent PTG, global HRQOL tended to decrease immediately post-operatively, climb to baseline by 6–12 months, then decrease again at 24 months. Body image and level of psychological distress remained relatively stable, and most patients expressed little decisional conflict or regret. All five individuals who declined surgery did so for practical reasons and would consider surgery in the future.

Conclusions

While most patients do not experience negative psychosocial consequences following PTG, mild physical symptoms persist and may affect long-term HRQOL. The present study emphasizes the need for long-term follow-up of this unique population of survivors.

Keywords

Stomach neoplasms Gastrectomy Quality of life Body image Decision-making 

Notes

Authors’ Contribution

All authors have reviewed and approved the final manuscript. JM, MA, MJE, and CJS were involved in the conception/design of the study and JM, MA, and AP were involved in data acquisition/analysis. JM and CJS drafted the manuscript.

Compliance with Ethical Standards

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 1964 and later versions. Informed consent or substitute for it was obtained from all patients for being included in the study.

Conflict of Interest

The authors declare that they have no conflict of interest.

Funding Sources

Not applicable.

Supplementary material

11605_2016_3287_MOESM1_ESM.docx (24 kb)
ESM 1 (DOCX 24 kb)

References

  1. 1.
    Jemal A, Bray F, Center MM, Ferlay J, Ward E, Forman D. Global cancer statistics. CA Cancer J Clin. 2011;61: 69–90.CrossRefPubMedGoogle Scholar
  2. 2.
    Cisco RM, Ford JM, Norton JA. Hereditary diffuse gastric cancer: implications of genetic testing for screening and prophylactic surgery. Cancer. 2008;113: 1850–1856.CrossRefPubMedGoogle Scholar
  3. 3.
    Carneiro F. Hereditary gastric cancer. Pathologe. 2012;33 Suppl 2: 231–234.CrossRefPubMedGoogle Scholar
  4. 4.
    Guilford P, Hopkins J, Harraway J, McLeod M, McLeod N, Harawira P, et al. E-cadherin germline mutations in familial gastric cancer. Nature. 1998;392: 402–405.CrossRefPubMedGoogle Scholar
  5. 5.
    Hansford S, Kaurah P, Li-Chang H, Woo M, Senz J, Pinheiro H, et al. Hereditary Diffuse Gastric Cancer Syndrome: CDH1 Mutations and Beyond. JAMA Oncol. 2015;1: 23–32.CrossRefPubMedGoogle Scholar
  6. 6.
    van der Post RS, Vogelaar IP, Carneiro F, Guilford P, Huntsman D, Hoogerbrugge N, et al. Hereditary diffuse gastric cancer: updated clinical guidelines with an emphasis on germline CDH1 mutation carriers. J Med Genet. 2015;52: 361–374.CrossRefPubMedPubMedCentralGoogle Scholar
  7. 7.
    Hebbard PC, Macmillan A, Huntsman D, Kaurah P, Carneiro F, Wen X, et al. Prophylactic total gastrectomy (PTG) for hereditary diffuse gastric cancer (HDGC): the Newfoundland experience with 23 patients. Annals of Surgical Oncology. 2009;16: 1890–1895.CrossRefPubMedGoogle Scholar
  8. 8.
    Newman EA, Mulholland MW. Prophylactic gastrectomy for hereditary diffuse gastric cancer syndrome. J Am Coll Surg. 2006;202: 612–617.CrossRefPubMedGoogle Scholar
  9. 9.
    Dixon M, Seevaratnam R, Wirtzfeld D, McLeod R, Helyer L, Law C, et al. A RAND/UCLA appropriateness study of the management of familial gastric cancer. Annals of Surgical Oncology. 2013;20: 533–541.CrossRefPubMedGoogle Scholar
  10. 10.
    Avery K, Hughes R, McNair A, Alderson D, Barham P, Blazeby J. Health-related quality of life and survival in the 2 years after surgery for gastric cancer. Eur J Surg Oncol. 2010;36: 148–154.CrossRefPubMedGoogle Scholar
  11. 11.
    Takiguchi N, Takahashi M, Ikeda M, Inagawa S, Ueda S, Nobuoka T, et al. Long-term quality-of-life comparison of total gastrectomy and proximal gastrectomy by Postgastrectomy Syndrome Assessment Scale (PGSAS-45): a nationwide multi-institutional study. Gastric Cancer. 2014.Google Scholar
  12. 12.
    Karanicolas PJ, Graham D, Gonen M, Strong VE, Brennan MF, Coit DG. Quality of life after gastrectomy for adenocarcinoma: a prospective cohort study. Ann Surg. 2013;257: 1039–1046.CrossRefPubMedPubMedCentralGoogle Scholar
  13. 13.
    Worster E, Liu X, Richardson S, Hardwick RH, Dwerryhouse S, Caldas C, et al. The Impact of Prophylactic Total Gastrectomy on Health-Related Quality of Life: A Prospective Cohort Study. Ann Surg. 2014.Google Scholar
  14. 14.
    Fitzgerald RC, Hardwick R, Huntsman D, Carneiro F, Guilford P, Blair V, et al. Hereditary diffuse gastric cancer: updated consensus guidelines for clinical management and directions for future research. J Med Genet. 2010;47: 436–444.CrossRefPubMedPubMedCentralGoogle Scholar
  15. 15.
    Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, et al. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. Journal of the National Cancer Institute. 1993;85: 365–376.CrossRefPubMedGoogle Scholar
  16. 16.
    Vickery CW, Blazeby JM, Conroy T, Arraras J, Sezer O, Koller M, et al. Development of an EORTC disease-specific quality of life module for use in patients with gastric cancer. European Journal of Cancer. 2001;37: 966–971.CrossRefPubMedGoogle Scholar
  17. 17.
    Hopwood P, Fletcher I, Lee A, Al Ghazal S. A body image scale for use with cancer patients. European Journal of Cancer. 2001;37: 189–197.CrossRefPubMedGoogle Scholar
  18. 18.
    Zabora J, BrintzenhofeSzoc K, Jacobsen P, Curbow B, Piantadosi S, Hooker C, et al. A new psychosocial screening instrument for use with cancer patients. Psychosomatics. 2001;42: 241–246.CrossRefPubMedGoogle Scholar
  19. 19.
    Brehaut JC, O’Connor AM, Wood TJ, Hack TF, Siminoff L, Gordon E, et al. Validation of a decision regret scale. Med Decis Making. 2003;23: 281–292.CrossRefPubMedGoogle Scholar
  20. 20.
    O’Connor AM. Validation of a decisional conflict scale. Med Decis Making. 1995;15: 25–30.CrossRefPubMedGoogle Scholar
  21. 21.
    Kobayashi D, Kodera Y, Fujiwara M, Koike M, Nakayama G, Nakao A. Assessment of quality of life after gastrectomy using EORTC QLQ-C30 and STO22. World J Surg. 2011;35: 357–364.CrossRefPubMedGoogle Scholar
  22. 22.
    Kim AR, Cho J, Hsu YJ, Choi MG, Noh JH, Sohn TS, et al. Changes of quality of life in gastric cancer patients after curative resection: a longitudinal cohort study in Korea. Ann Surg. 2012;256: 1008–1013.CrossRefPubMedGoogle Scholar
  23. 23.
    McHorney CA, Ware JE, Jr., Raczek AE. The MOS 36-Item Short-Form Health Survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Med Care. 1993;31: 247–263.CrossRefPubMedGoogle Scholar
  24. 24.
    Metcalfe KA, Poll A, O’Connor A, Gershman S, Armel S, Finch A, et al. Development and testing of a decision aid for breast cancer prevention for women with a BRCA1 or BRCA2 mutation. Clin Genet. 2007;72: 208–217.CrossRefPubMedGoogle Scholar
  25. 25.
    Rogers WM, Dobo E, Norton JA, Van Dam J, Jeffrey RB, Huntsman DG, et al. Risk-reducing total gastrectomy for germline mutations in E-cadherin (CDH1): pathologic findings with clinical implications. American Journal of Surgical Pathology. 2008;32: 799–809.CrossRefPubMedGoogle Scholar
  26. 26.
    Chun YS, Lindor NM, Smyrk TC, Petersen BT, Burgart LJ, Guilford PJ, et al. Germline E-cadherin gene mutations: is prophylactic total gastrectomy indicated? Cancer. 2001;92: 181–187.CrossRefPubMedGoogle Scholar
  27. 27.
    Lynch HT, Kaurah P, Wirtzfeld D, Rubinstein WS, Weissman S, Lynch JF, et al. Hereditary diffuse gastric cancer: diagnosis, genetic counseling, and prophylactic total gastrectomy. Cancer. 2008;112: 2655–2663.CrossRefPubMedPubMedCentralGoogle Scholar
  28. 28.
    Norton JA, Ham CM, Van Dam J, Jeffrey RB, Longacre TA, Huntsman DG, et al. CDH1 truncating mutations in the E-cadherin gene: an indication for total gastrectomy to treat hereditary diffuse gastric cancer. Ann Surg. 2007;245: 873–879.CrossRefPubMedPubMedCentralGoogle Scholar
  29. 29.
    Huntsman DG, Carneiro F, Lewis FR, MacLeod PM, Hayashi A, Monaghan KG, et al. Early gastric cancer in young, asymptomatic carriers of germ-line E-cadherin mutations. New England Journal of Medicine. 2001;344: 1904–1909.CrossRefPubMedGoogle Scholar

Copyright information

© The Society for Surgery of the Alimentary Tract 2016

Authors and Affiliations

  1. 1.Department of Laboratory Medicine and PathobiologyUniversity of TorontoTorontoCanada
  2. 2.Department of SurgeryUniversity of TorontoTorontoCanada
  3. 3.Familial Gastrointestinal Cancer RegistryMount Sinai HospitalTorontoCanada
  4. 4.Department of PsychiatryUniversity of TorontoTorontoCanada
  5. 5.Department of Surgical OncologyMount Sinai Hospital and Princess Margaret Cancer CentreTorontoCanada

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