Abstract
Women who carry BRCA1/2 mutations have a significantly elevated risk for breast and ovarian cancer. The positive test result and subsequent decisions about risk reducing behaviors can evoke distress, anxiety and worry. Psychological adaptation, or the process of coming to terms with the implications of a health threat, is an understudied construct in BRCA1/2 carriers. Little is known about adaptation and how it relates to other aspects of living at high risk for cancer. Even less is understood about adaptation among partners of BRCA1/2 carriers, and its relationship to adaptation in high risk individuals. Women at increased risk of breast/ovarian cancer (N = 103) and a subset of partners (N = 39) completed questionnaires that assessed risk management decisions (e.g. screening, risk-reducing surgery), dyadic coping, and the outcome of psychological adaptation. Women who had undergone risk-reducing mastectomy (RRM) had significantly higher levels of adaptation than those who had not (t = 5.5, p < 0.001, d = 1.10). Partners of women who had undergone RRM also had higher levels of adaptation than partners of women who had not undergone RRM (t = 3.7, p = 0.01, d = 0.96), though this association was not statistically significant when controlling for carriers’ adaptation. Undergoing risk-reducing oophorectomy was not associated with adaptation for BRCA1/2 carriers or their partners. Risk-reducing mastectomy is a significant event in the process of adapting to life at risk for hereditary cancer. Further, adaptation among partners is highly related to adaptation in carriers. These results aid in the understanding of the experience of couples living with cancer risk and the medical decisions related to adaptation.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
Chen S, Parmigiani G (2007) Meta-analysis of BRCA1 and BRCA2 penetrance. J Clin Oncol 25(11):1329–1333
Hamilton JG, Lobel M, Moyer A (2009) Emotional distress following genetic testing for hereditary breast and ovarian cancer: a meta-analytic review. Health Psychol 28(4):510
Graves KD et al (2007) Predictors and outcomes of contralateral prophylactic mastectomy among breast cancer survivors. Breast Cancer Res Treat 104(3):321–329
Biesecker B, Erby L (2008) Adaptation to living with a genetic condition or risk: a mini-review. Clin Genet 74(5):401–407
Taylor SE (1983) Adjustment to threatening events: A theory of cognitive adaptation. Am Psychol 38(11):1161
Lazarus RS, Folkman S (1984) Stress, appraisal, and coping. Springer, New York
Biesecker BB et al (2013) Development and validation of the psychological adaptation scale (PAS): use in six studies of adaptation to a health condition or risk. Patient Education Couns 93(2):248–254
Aspinwall LG et al (2013) Psychological aspects of hereditary cancer risk counseling and genetic testing, in psychological aspects of cancer. Springer, New York, pp 31–64
Frost MH et al (2000) Long-term satisfaction and psychological and social function following bilateral prophylactic mastectomy. Jama 284(3):319–324
den Heijer M et al (2012) Body image and psychological distress after prophylactic mastectomy and breast reconstruction in genetically predisposed women: a prospective long-term follow-up study. Eur J Cancer 48(9):1263–1268
Hatcher MB, Fallowfield L, A’Hern R (2001) The psychosocial impact of bilateral prophylactic mastectomy: prospective study using questionnaires and semistructured interviews. BMJ 322(7278):76
Glassey R et al (2016) Decision making, psychological wellbeing and psychosocial outcomes for high risk women who choose to undergo bilateral prophylactic mastectomy: a review of the literature. Breast 28:130–135
Sherman KA, Kasparian NA, Mireskandari S (2010) Psychological adjustment among male partners in response to women’s breast/ovarian cancer risk: a theoretical review of the literature. Psycho-Oncology 19(1):1–11
Wylie JE, Smith KR, Botkin JR (2003) Effects of spouses on distress experienced by BRCA1 mutation carriers over time. Am J Med Genet C 119:35–44
Mireskandari S et al (2007) Psychological adjustment among partners of women at high risk of developing breast/ovarian cancer. Genet Med 9(5):311–320
Hoskins LM, Roy KM, Greene MH (2012) Toward a new understanding of risk perception among young female BRCA1/2 previvors. Families Systems Health 30(1):32
Lloyd S et al (1999) Understanding the experience of prophylactic bilateral mastectomy: a qualitative study of ten women. Psycho-oncology 9(6):473–485
van Driel C et al (2016) Psychological factors associated with the intention to choose for risk-reducing mastectomy in family cancer clinic attendees. Breast 30:66–72
Hartmann LC, Lindor NM (2016) The role of risk-reducing surgery in hereditary breast and ovarian cancer. N Engl J Med 374(5):454–468
Weinstein ND et al (2007) Risk perceptions: assessment and relationship to influenza vaccination. Health Psychol 26(2):146
Ledermann T et al (2010) Psychometrics of the Dyadic Coping Inventory in three language groups. Swiss J Psychol 69(4):201
Cohen JS (2009) Adaptation and quality of life among adults with Neurofibromatosis type 1. Unpublished ScM thesis, Johns Hopkins University, Baltimore
Lynch HT, Krush AJ (1971) Genetic predictability in breast cancer risk: surgical implications. Arch Surg 103(1):84–88
Nelson HD et al (2014) Risk assessment, genetic counseling, and genetic testing for BRCA-related cancer in women: a systematic review to update the US Preventive Services Task Force recommendation. Ann Intern Med 160(4):255–266
Chai X et al (2014) Use of risk-reducing surgeries in a prospective cohort of 1,499 BRCA1 and BRCA2 mutation carriers. Breast Cancer Res Treat 148(2):397–406
Wagner TMU, Möslinger R, Langbauer G, Ahner R (2000) Attitude towards prophylactic surgery and effects of genetic counselling in families with BRCA mutations. Br J Cancer 82(7):1249
Morgan D et al (2010) Perceptions of high-risk care and barriers to care among women at risk for hereditary breast and ovarian cancer following genetic counseling in the community setting. J Genet Couns 19(1):44–54
Klitzman R, Chung W (2010) The process of deciding about prophylactic surgery for breast and ovarian cancer: Patient questions, uncertainties, and communication. Am J Med Genet A 152A(1):52–66
Watts KJ et al (2011) Predictors of relationship adjustment among couples coping with a high risk of developing breast/ovarian cancer. Psychol Health 26(sup1):21–39
Rowland E, Metcalfe A (2014) A systematic review of men’s experiences of their partner’s mastectomy: coping with altered bodies. Psychooncology 23(9):963–974
Ben-Zur H, Gilbar O, Lev S (2001) Coping with breast cancer: patient, spouse, and dyad models. Psychosom Med 63(1):32–39
Hooker GW et al (2014) Long-term satisfaction and quality of life following risk reducing surgery in BRCA1/2 mutation carriers. Hereditary Cancer Clin Pract 12(1):1
Mireskandari S et al (2006) Evaluation of the needs and concerns of partners of women at high risk of developing breast/ovarian cancer. Psycho-Oncology 15(2):96–108
Acknowledgements
This study was supported by the National Human Genome Research Institute Intramural Research Program.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Conflict of interest
Gillian Hooker is employed by Concert Genetics and serves on the leadership team in her capacity as Vice President of Clinical Development. All other authors report no conflicts.
Rights and permissions
About this article
Cite this article
Shapira, R., Turbitt, E., Erby, L.H. et al. Adaptation of couples living with a high risk of breast/ovarian cancer and the association with risk-reducing surgery. Familial Cancer 17, 485–493 (2018). https://doi.org/10.1007/s10689-017-0065-z
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10689-017-0065-z