Skip to main content
Log in

Risk-Reduction Surgery Decisions in High-Risk Women Seen for Genetic Counseling

  • Research Article
  • Published:
Journal of Genetic Counseling

Abstract

Women at greatest risk for hereditary breast and ovarian cancer may consider prophylactic removal of breasts or ovaries as a risk-reduction measure. This report describes uptake of risk-reduction mastectomy (RRM), risk-reduction oophorectomy (RRO), and related factors in 62 high-risk women who received genetic counseling. Seven (11%) participants underwent RRM and 13 (21%) underwent RRO. Of these women, 37% did not have BRCA testing, suggesting other factors influence decisions to undergo surgery. Women who had indicated (pre-genetic counseling) their intent not to have surgery chose not to have surgery. Information received during genetic counseling that women perceived as being most important for influencing risk-reduction surgery decisions was BRCA test result (positive or negative), followed by discussion of family cancer history. Reasons for indecision about risk-reduction surgery included genetic testing results, concerns about surgery, timing in life, and early menopause. The findings enhance our understanding of information that is helpful to women considering this surgery.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Similar content being viewed by others

References

  • Armstrong, K., Schwartz, J. S., Randall, T., Rubin, S. C., & Weber, B. (2004). Hormone replacement therapy and life expectancy after prophylactic oophorectomy in women with BRCA1/2 mutations: a decision analysis. J Clin Oncol, 22, 1045–1054.

    PubMed  Google Scholar 

  • Barnes-Kedar, I. M., & Plon, S. E. (2002). Counseling the at risk patient in the BRCA1 and BRCA2 Era. Obstet Gynecol Clin North Am, 29, 341–366, vii.

    Google Scholar 

  • Byrne, C., Brinton, L. A., Haile, R. W., & Schairer, C. (1991). Heterogeneity of the effect of family history on breast cancer risk. Epidemiology, 2, 276–284.

    CAS  PubMed  Google Scholar 

  • Claus, E. B., Risch, N., & Thompson, W. D. (1991). Genetic analysis of breast cancer in the cancer and steroid hormone study. Am J Hum Genet, 48, 232–242.

    CAS  PubMed  Google Scholar 

  • Colditz, G. A., Willett, W. C., Hunter, D. J., Stampfer, M. J., Manson, J. E., Hennekens, C. H., et al. (1993). Family history, age, and risk of breast cancer. Prospective data from the Nurses' Health Study. Jama, 270, 338–343.

    Article  CAS  PubMed  Google Scholar 

  • Cull, A., Fry, A., Rush, R., & Steel, C. M. (2001). Cancer risk perceptions and distress among women attending a familial ovarian cancer clinic. Br J Cancer, 84, 594–599.

    Article  CAS  PubMed  Google Scholar 

  • Easton, D. F., Hopper, J. L., Thomas, D. C., Antoniou, A., Pharoah, P. D., Whittemore, A. S., et al. (2004). Breast cancer risks for BRCA1/2 carriers. Science, 306, 2187–2191; author reply 2187–2191.

    Google Scholar 

  • Egan, K. M., Stampfer, M. J., Rosner, B. A., Trichopoulos, D., Newcomb, P. A., Trentham-Dietz, A., et al. (1998). Risk factors for breast cancer in women with a breast cancer family history. Cancer Epidemiol Biomarkers Prev, 7, 359–364.

    CAS  PubMed  Google Scholar 

  • Fry, A., Rush, R., Busby-Earle, C., & Cull, A. (2001). Deciding about prophylactic oophorectomy: what is important to women at increased risk of ovarian cancer? Prev Med, 33, 578–585.

    Article  CAS  PubMed  Google Scholar 

  • Garber, J. E., & Hartman, A. R. (2004). Prophylactic oophorectomy and hormone replacement therapy: Protection at what price? J Clin Oncol, 22, 978–980.

    Article  PubMed  Google Scholar 

  • Ghosh, K., & Hartmann, L. C. (2002). Current status of prophylactic mastectomy. Oncology (Huntingt), 16, 1319–1325; discussion 1325, 1329–1330, 1332.

    Google Scholar 

  • Haber, D. (2002). Prophylactic oophorectomy to reduce the risk of ovarian and breast cancer in carriers of BRCA mutations. N Engl J Med, 346, 1660–1662.

    PubMed  Google Scholar 

  • Hallowell, N. (2000). A qualitative study of the information needs of high-risk women undergoing prophylactic oophorectomy. Psychooncology, 9, 486–495.

    Article  CAS  PubMed  Google Scholar 

  • Hartman, A. R., Daniel, B. L., Kurian, A. W., Mills, M. A., Nowels, K. W., Dirbas, F. M., et al. (2004). Breast magnetic resonance image screening and ductal lavage in women at high genetic risk for breast carcinoma. Cancer, 100, 479–489.

    Article  PubMed  Google Scholar 

  • Hartmann, L. C., Degnim, A., & Schaid, D. J. (2004). Prophylactic mastectomy for BRCA1/2 carriers: progress and more questions. J Clin Oncol, 22, 981–983.

    Article  PubMed  Google Scholar 

  • Irwig, L., Houssami, N., & van Vliet, C. (2004). New technologies in screening for breast cancer: a systematic review of their accuracy. Br J Cancer, 90, 2118–2122.

    CAS  PubMed  Google Scholar 

  • Kauff, N. D., Satagopan, J. M., Robson, M. E., Scheuer, L., Hensley, M., Hudis, C. A., et al. (2002). Risk-reducing salpingo-oophorectomy in women with a BRCA1 or BRCA2 mutation. N Engl J Med, 346, 1609–1615.

    Article  PubMed  Google Scholar 

  • King, M. C. (2004). Breast cancer risks for BRCA1/2 carriers. Science, 306, 2188–2191.

    CAS  Google Scholar 

  • Krippendorf, K. (1980). Content analysis: An introduction to its methodology. Beverly Hills, CA: Sage Publications.

    Google Scholar 

  • Lerman, C., Hughes, C., Croyle, R. T., Main, D., Durham, C., Snyder, C., et al. (2000). Prophylactic surgery decisions and surveillance practices one year following BRCA1/2 testing. Prev Med, 31, 75–80.

    Article  CAS  PubMed  Google Scholar 

  • Lynch, H. T., & Casey, M. J. (2001). Current status of prophylactic surgery for hereditary breast and gynecologic cancers. Curr Opin Obstet Gynecol, 13, 25–30.

    Article  CAS  PubMed  Google Scholar 

  • Lynch, H. T., Lynch, J. F., & Rubinstein, W. S. (2001). Prophylactic mastectomy: obstacles and benefits. J Natl Cancer Inst, 93, 1586–1587.

    Article  CAS  PubMed  Google Scholar 

  • Meijers-Heijboer, H., van Geel, B., van Putten, W. L., Henzen-Logmans, S. C., Seynaeve, C., Menke-Pluymers, M. B., et al. (2001). Breast cancer after prophylactic bilateral mastectomy in women with a BRCA1 or BRCA2 mutation. N Engl J Med, 345, 159–164.

    Article  CAS  PubMed  Google Scholar 

  • Moller, P., Borg, A., Evans, D. G., Haites, N., Reis, M. M., Vasen, H., et al. (2002). Survival in prospectively ascertained familial breast cancer: analysis of a series stratified by tumour characteristics, BRCA mutations and oophorectomy. Int J Cancer, 101, 555–559.

    CAS  PubMed  Google Scholar 

  • Morice, P., Pautier, P., & Delaloge, S. (2001). Prophylactic surgery in patients with inherited risk of ovarian cancer. Gynecologic Oncology, 83, 445–447.

    CAS  PubMed  Google Scholar 

  • Morris, K. T., Johnson, N., Krasikov, N., Allen, M., & Dorsey, P. (2001). Genetic counseling impacts decision for prophylactic surgery for patients perceived to be at high risk for breast cancer. Am J Surg, 181, 431–433.

    CAS  PubMed  Google Scholar 

  • NCCN. (2003). Guidelines for detection, prevention and risk reduction of cancer. Genetics/familial high risk assessment.National Comprehensive Cancer Network, from www.nccn.org

  • Petit, J. Y., & Greco, M. (2002). Quality control in prophylactic mastectomy for women at high risk of breast cancer. Eur J Cancer, 38, 23–26.

    Article  CAS  PubMed  Google Scholar 

  • Rebbeck, T. R., Friebel, T., Lynch, H. T., Neuhausen, S. L., Van't Veer, L., Garber, J. E., et al. (2004). Bilateral prophylactic mastectomy reduces breast cancer risk in BRCA1 and BRCA2 mutation carriers: the PROSE Study Group. J Clin Oncol, 22, 1055–1062.

    Article  PubMed  Google Scholar 

  • Rebbeck, T. R., Levin, A. M., Eisen, A., Snyder, C., Watson, P., Cannon-Albright, L., et al. (1999). Breast cancer risk after bilateral prophylactic oophorectomy in BRCA1 mutation carriers. J Natl Cancer Inst, 91, 1475–1479.

    Article  CAS  PubMed  Google Scholar 

  • Rebbeck, T. R., Lynch, H. T., Neuhausen, S. L., Narod, S. A., Van't Veer, L., Garber, J. E., et al. (2002). Prophylactic oophorectomy in carriers of BRCA1 or BRCA2 mutations. N Engl J Med, 346, 1616–1622.

    Article  PubMed  Google Scholar 

  • Redelmeier, D. A., Rozin, P., & Kahneman, D. (1993). Understanding patients' decisions. Cognitive and emotional perspectives. Jama, 270, 72–76.

    Article  CAS  PubMed  Google Scholar 

  • Rogozinska-Szczepka, J., Utracka-Hutka, B., Grzybowska, E., Maka, B., Nowicka, E., Smok-Ragankiewicz, A., et al. (2004). BRCA1 and BRCA2 mutations as prognostic factors in bilateral breast cancer patients. Ann Oncol, 15, 1373–1376.

    Article  CAS  PubMed  Google Scholar 

  • Scheuer, L., Kauff, N., Robson, M., Kelly, B., Barakat, R., Satagopan, J., et al. (2002). Outcome of preventive surgery and screening for breast and ovarian cancer in BRCA mutation carriers. J Clin Oncol, 20, 1260–1268.

    Article  PubMed  Google Scholar 

  • Schrag, D., Kuntz, K. M., Garber, J. E., & Weeks, J. C. (2000). Life expectancy gains from cancer prevention strategies for women with breast cancer and BRCA1 or BRCA2 mutations. Jama, 283, 617–624.

    Article  CAS  PubMed  Google Scholar 

  • Sifri, R., Gangadharappa, S., & Acheson, L. S. (2004). Identifying and testing for hereditary susceptibility to common cancers. CA Cancer J Clin, 54, 309–326.

    Article  PubMed  Google Scholar 

  • Smith, R. A., Saslow, D., Sawyer, K. A., Burke, W., Costanza, M. E., Evans, W. P., 3rd, et al. (2003). American Cancer Society guidelines for breast cancer screening: update 2003. CA Cancer J Clin, 53, 141–169.

    PubMed  Google Scholar 

  • SPSS. (2004). SPSS advanced models™ 12.0. Chicago, IL: SPSS, Inc.

  • Stalmeier, P., Unic, I., Verhoef, L., & Van Daal, W. (1999). Evaluation of a shared decision making program for women suspected to have a genetic predisposition to breast cancer. Medical Decision Making, 19, 230–241.

    CAS  PubMed  Google Scholar 

  • Stefanek, M., Hartmann, L., & Nelson, W. (2001). Risk-reduction mastectomy: clinical issues and research needs. J Natl Cancer Inst, 93, 1297–1306.

    Article  CAS  PubMed  Google Scholar 

  • Thull, D. L., & Vogel, V. G. (2004). Recognition and management of hereditary breast cancer syndromes. Oncologist, 9, 13–24.

    Article  PubMed  Google Scholar 

  • Wacholder, S., Struewing, J. P., Hartge, P., Greene, M. H., & Tucker, M. A. (2004). Breast cancer risks for BRCA1/2 carriers. Science, 306, 2187–2191; author reply 2187–2191.

    Google Scholar 

  • Weinstein, N. D., & Sandman, P. M. (2002). The precaution adoption process model. In K. Glanz, Rimer, B. K., Lewis, F. M. (Ed.), Health behavior and education. San Francisco: Jossey-Bass.

    Google Scholar 

  • Wood, W. C. (2004). Advising women at high risk of breast cancer. Oncology (Huntingt), 18, 28–32; discussion 32–24, 39, 42.

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Lois J. Loescher Ph.D.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Ray, J.A., Loescher, L.J. & Brewer, M. Risk-Reduction Surgery Decisions in High-Risk Women Seen for Genetic Counseling. J Genet Counsel 14, 473–484 (2005). https://doi.org/10.1007/s10897-005-5833-5

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10897-005-5833-5

Key Words

Navigation