We conducted an exploratory, qualitative study investigating experiences of women who had developed breast cancer under the age of 40 and who were identified as BRCA1 or BRCA2 mutation carriers. These germline mutation carriers face an increased lifetime risk of a second primary breast cancer and an increased risk for a primary ovarian cancer. Thirteen women who fit this criteria participated in three focus groups conducted at a major cancer center in the UK during Spring 2003. We asked broad, open-ended questions that allowed for a wide range of responses about their cancer and genetic testing experiences, physical and psycho-social concerns, family and partner reactions and their need for social support. The women expressed feelings of devastation, loneliness, feeling different and isolation, ambivalence about having to support family members, worries about partner’s anxiety and depression, and anxiety about talking to family members, especially children. These feelings were stronger after the cancer diagnosis and compounded by the genetic test results that occurred at a later time. We also found that, at least temporarily, the women experienced what we call “social separation”—emotional distance from, or dissonance with groups they interact with or are part of, e.g., family and friends, frequently leading to a reduction in communication or a change in previously unstated, but accepted normal interaction. We concentrate on a few characteristics of social separation—feelings of aloneness, isolation and separation, use of silence and verbal discretion, the relationship between estrangement and kinship interaction and norm disruption, and are looking at social patterns of interpersonal relationships that may occur when risk and illness statuses are new and framing and feeling rules have not as yet been clearly developed due to a cultural lag.
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REFERENCES
Ardern-Jones, A., Kenen, R., & Eeles, R. (2005). Too much, too soon? Patients and health professionals’ views concerning the impact of genetic testing at the time of breast cancer diagnosis in women under the age of 40. Eur J Cancer Care, 14, 272–281.
Beeson, D. (1997). Nuance, complexity, and context: Qualitative methods in genetic counseling research. J Genet Couns, 6, 21–43.
Bury, M. R. (1991). The sociology of chronic illness: A review of research and prospects. Sociol Health Illn, 13, 451–468.
Bury, M. R. (1982). Chronic illness as biographical disruption. Sociol Health Illn, 4, 167–182.
Camp, D. L., Finlay, W. M. L., & Lyons, E. (2002). Is low self-esteem an inevitable consequence of stigma? An example from women with chronic mental health problems. Soc Sci Med, 55(5), 823–834.
Campbell, T. L. (2003). The effectiveness of family interventions for physical disorders. J Marital Fam Ther, 29(2), 263–281.
Corbin, J., & Strauss, A. (1988). Unending work and care: Managing chronic illness at home. San Francisco: Jossey-Bass.
DiProspero, L. S., Seminsky, M., Honeyford, J., Doan, B., Franssesn, E., Meschino, W., et al. (2001). Psychosocial issues following a positive result of genetic testing for BRCA1 and BRCA2 mutations findings from a focus group and a needs-assessment survey. Can Med Assoc, 1634(7), 1005–1009.
Fern, E. F. (2001). Advanced focus group research. Thousand Oaks, CA: Sage.
Ford, D., Easton, D. F., Stratton, M., Narod, S., Goldgar, D., Devilee, P., et al. (1998). Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. The Breast Cancer Linkage Consortium. Am J Hum Genet, 62(3), 676–689.
Foster, C., Eeles, R., Ardern-Jones, A., Moynihan, C., & Watson, M. (2004). Juggling roles and expectations: Dilemmas faced by women talking to relatives about cancer and genetic testing. Psychol Health, 19(4), 439–455.
Foucault, M. (1978). The history of sexuality: An introduction (Vol. 1). New York: Pantheon.
Garber, M. (1991). Vested interests. London: Routledge.
Glaser, B. (1978). Theoretical sensitivity. Mill Valley, CA: Sociology Press.
Hallowell, N. (2000). Reconstructing the body or reconstructing the woman? Problems of prophylactic mastectomy for hereditary breast cancer risk. In L. Potts (Ed.), Ideologies of breast cancer: Feminist perspectives. New York: St. Martin’s Press.
Hamilton, F., Bowers, B., & Williams, J. (2005). Disclosing genetic test results to family members. J Nurs Scholarsh, 37(1), 18–24.
Hochschild, A. (1979). Emotion work, feeling rules and social structure. Am J Sociol, 85, 551–575.
Kenen, R., Ardern-Jones, A., & Eeles, R. (2003). Living with chronic risk: Women from hereditary breast/ovarian cancer families (HBOC). Health Risk Soc, 5(3), 315–331.
Kenen, R., Ardern-Jones, R., & Eeles, R. (2004). We are talking, but are they listening? Communication patterns in families with a history of breast/ovarian cancer (HBOC). Psycho-oncology, 13, 335–345.
Kenen, R., & Moller, D. (1996). Medical diagnosis and the creation of an emotional stranger, discussion round table. New York City: American Sociological Association Meeting.
Krueger, R. A., & Casey, M. A. (2000). Focus groups: A practical guide for applied research. Thousand Oaks, CA: Sage.
Lakhani, S., van de Vijver, M., Jacquemier, J., Anderson, T. J., Osin, P. P., McGuffog, L., et al., for the Breast Cancer Linkage Consortium (2002). The pathology of familial breast cancer: Predictive value of immunohistochemical markers estrogen receptor, progesterone receptor, HER-2 and P53 in patients with mutations in BRCA1 and BRCA2. J Clin Oncol, 20(9), 2310–2318.
Lloyd, S. M., Waston, M., Oaker, G., Sacks, N., Querci della Reovere, U., & Gui, G. (2000). Understanding the experience of prophylactic bilateral mastectomy: A qualitative study of ten women. Psycho-oncology, 6, 473–485.
Mathieson, C. M., & Stam, H. J. (1995). Renegotiating identity: Cancer narratives. Sociol Health Illn, 17, 283–306.
Merton, R. K., Fiske, M., & Kendall, P. L. (1990). The focused interview: A manual of problems and procedures (2nd ed.). New York: Free Press.
Metcalfe, K. A., Liede, A., Hoodfar, E., Scott, A., Foulkes, W. D., & Narod, S. A. (2000). An evaluation of needs of female BRCA1 and BRCA2 carriers undergoing genetic counseling. J Med Genet, 37, 866–874.
Morgan, D. L. (1997). Focus groups as qualitative research. Thousand Oaks, CA: Sage.
Odets, W. (1995). In the shadow of the epidemic. Durham, NC: Duke University Press.
Palacios, J., Honrado, E., Osorio, A., et al. (2003). Immunohistochemical characteristics defined by tissue microarray of hereditary breast cancer not attributable to BRCA1 or BRCA2 mutations: Differences from breast carcinomas arising in BRCA1 and BRCA2 mutation carriers. Clin Cancer Res, 9(10), 3606–3614.
Parsons, E., & Atkinson, P. (1992). Lay constructions of genetic risk. Sociol Health Illn, 14, 437–454.
Parsons, T. (1951). The social system. New York: Free Press.
Rolland, J. S. (1994). Families, illness & disability: An integrative treatment model. New York: Basic Books.
Rolland, J. S., & Williams, J. K. (2005). Toward a biopsychosocial model for 21st century genetics. Fam Process, 44(1), 3–24.
Weihs, K., Fisher, L., & Baird, M. (2002). Families, health and behavior: A section of the commissioned report by the committee on health and behavior research, practice and policy. Fam Syst Health, 20(1), 7–46.
Roth, J. A. (1963). Timetables: Structuring the passage of time in hospital treatment and other careers. New York: Bobbs-Merrill.
Smith, J. A. (1996). Evolving issues for qualitative psychology. In J. T. E. Richardson (Ed.), Handbook of qualitative research methods (pp. 273–285). Leicester, UK: The British Psychological Society.
Sowter, H., & Ashworth, R. (2005). BRCA1 and BRCA2 as ovarian cancer susceptibility genes. Carcinogenesis, May 25 (Reprint ahead of print).
Struewing, J. P., Hartge, P., & Wacholder, S. (1997). The risk of cancer associated with specific mutations of BRCA1 and BRCA2 among Ashkenazi Jews. N Engl J Med, 336, 1401–1408.
Thompson, D., Easton, D., Eeles, R. A., Breast Cancer Linkage Consortium (2001). Variation in cancer risks by mutation position in BRCA2 mutation carriers. Am J Hum Genet, 68(2), 410–419.
Wexler, A. (1995). Mapping fate: A memoir of family, risk, and genetic research. New York: Times Books.
Wolf, J. (2004). The information needs of women who have undergone breast reconstruction. Part I. Eur J Oncol Nurs, 8(3), 211–223.
ACKNOWLEDGMENTS
We thank the women who graciously participated in this study and to Nina Hallowell, Peter Kenen, Linda Levine, June Peters, the anonymous reviewers, and the editor who commented on previous drafts. We also appreciate the long discussions in the past with David Moller on this topic.
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Kenen, R., Ardern-Jones, A. & Eeles, R. “Social Separation” Among Women Under 40 Years of Age Diagnosed with Breast Cancer and Carrying a BRCA1 or BRCA2 Mutation. J Genet Counsel 15, 149–162 (2006). https://doi.org/10.1007/s10897-005-9015-2
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DOI: https://doi.org/10.1007/s10897-005-9015-2