Learning About a Twist in the Road: Perspectives of At-Risk Relatives Learning of Potential for Cancer

Cheryl B. Crotser

Suzanne S. Dickerson

ONF 2010, 37(6), 723-733. DOI: 10.1188/10.ONF.723-733

Purpose/Objectives: To describe the experiences of women who accessed the Facing Our Risk of Cancer Empowered (FORCE) Web site after learning of a family BRCA1 or BRCA2 mutation.

Research Approach: Interpretive phenomenology based on Heideggerian hermeneutics.

Setting: Telephone interviews of women living in the United States who accessed FORCE.

Participants: A purposive sample of eight women aged 19-47 years.

Methodologic Approach: Team interpretation using Diekelmann, Allen, and Tanner's seven-step process.

Main Research Variables: Experience of family communication of BRCA results.

Findings: Women described (a) finding out, (b) unexpected feelings, (c) mulling it over, (d) finding support, (e) seeking direction from healthcare professionals, (f) redefining future possibilities, and (g) navigating a twist in the road.

Conclusions: Many healthcare professionals are not prepared to address genetic risk. Some women who learned of potential risk experienced turmoil as potential risk for cancer unfolded. They felt isolated and unsupported by healthcare providers. They desired assistance in navigating the healthcare system to protect their future health.

Interpretation: Healthcare professionals have important roles in (a) assessing support networks of individuals seeking BRCA testing, (b) providing anticipatory guidance on risk communication, (c) remaining sensitive to the impact of seeing cancer as a future possibility, (d) allowing time for individuals to process such news, (e) assessing the psychosocial impact of news of a family BRCA mutation, and (f) providing referrals for support and health needs. Women desire decision support from healthcare providers. Future research should examine cancer risk communication in diverse groups of women.

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    American Cancer Society. (2009). Breast cancer facts and figures 2009-2010. Retrieved from
    Blandy, C., Chabal, F., Stoppa-Lyonnet, D., & Julian-Reynier, C. (2003). Testing participation in BRCA1/2-positive families: Initiator role of index cases. Genetic Testing, 7, 225-233.
    Claes, E., Evers-Kiebooms, G., Boogaerts, A., Decruyenaere, M., Denayer, L., & Legius, E. (2003). Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients. American Journal of Medical Genetics. Part A, 116A, 11-19.
    Coward, D. D. (2003). Facilitation of self-transcendence in a breast cancer support group: II. Oncology Nursing Forum, 30, 291-300.
    Crotser, C. B., & Boehmke, M. (2009). Survivorship considerations in adults with hereditary breast and ovarian cancer syndrome: State of the science. Journal of Cancer Survivorship, 3, 21-42.
    d'Agincourt-Canning, L. (2006). Genetic testing for hereditary breast and ovarian cancer: Responsibility and choice. Qualitative Health Research, 16, 97-118.
    Daly, M. B., Barsevick, A., Miller, S. M., Buckman, R., Costalas, J., Montgomery, S., & Bingler, R. (2001). Communicating genetic test results to the family: A six-step, skills-building strategy. Family and Community Health, 24(3), 13-26.
    Diekelmann, N., Allen, D., & Tanner, C. (1989). The NLN criteria for appraisal of baccalaureate programs: A critical hermeneutic analysis. New York, NY: Springer.
    Di Prospero, L. S., Seminsky, M., Honeyford, J., Doan, B., Franssen, E., Meschino, W., … Warner, E. (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. Canadian Medical Association Journal, 164, 1005-1009. Retrieved from
    Draucker, C. B. (1999). The critique of Heideggerian hermeneutical nursing research. Journal of Advanced Nursing, 30, 360-373.
    Eysebach, G. (2008). Medicine 2.0: Social networking, collaboration, participation, apomediation, and openness. Journal of Medical Internet Research, 10(3). Retrieved from
    Finlay, E., Stopfer, J. E., Burlingame, E., Evans, K. G., Nathanson, K. L., Weber, B. L., … Domchek, S. M. (2008). Factors determining dissemination of results and uptake of genetic testing in families with known BRCA1/2 mutations. Genetic Testing, 12, 81-91.
    Forrest, K., Simpson, S. A., Wilson, B. J., van Teijlingen, E. R., McKee, L., Haites, N., & Matthews, E. (2003). To tell or not to tell: Barriers and facilitators in family communication about genetic risk. Clinical Genetics, 64, 317-326.
    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. Psychology and Health, 19, 439-455.
    Green, J., Richards, M., Murton, F., Statham, H., & Hallowell, N. (1997). Family communication and genetic counseling: The case of hereditary breast and ovarian cancer. Journal of Genetic Counseling, 6, 45-60.
    Hallowell, N., Ardern-Jones, A., Eeles, R., Foster, C., Lucassen, A., Moynihan, C., & Watson, M. (2005). Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: Patterns, priorities and problems. Clinical Genetics, 67, 492-502.
    Hamilton, R. J., & Bowers, B. J. (2007). The theory of genetic vulnerability: A Roy model exemplar. Nursing Science Quarterly, 20, 254-265.
    Heidegger, M. (1962/1927). Being and time [J. Macquarrie & E. Robinson, Trans.]. New York, NY: Harper and Row.
    Heidegger, M. (1977). The question concerning technology and other essays [W. Lovitt, Trans.]. New York, NY: Harper and Row.
    Helgeson, V. S., & Cohen, S. (1996). Social support and adjustment to cancer: Reconciling descriptive, correlational, and intervention research. Health Psychology, 15, 135-148.
    Hughes, C., Lerman, C., Schwartz, M., Peshkin, B. N., Wenzel, L., Narod, S., … Main, D. (2002). All in the family: Evaluation of the process and content of sisters' communication about BRCA1 and BRCA2 genetic test results. American Journal of Medical Genetics, 107, 143-150.
    Johnson, M. E. (2000). Heidegger and meaning: Implications for phenomenological research. Nursing Philosophy, 1(2), 134-146.
    Kenen, R., Ardern-Jones, A., & 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., Ardern-Jones, A., & Eeles, R. (2006). "Social separation" among women under 40 years of age diagnosed with breast cancer and carrying a BRCA1 or BRCA2 mutation. Journal of Genetic Counseling, 15, 149-162.
    Koehly, L. M., Peters, J. A., Kuhn, N., Hoskins, L., Letocha, A., Kenen, R., … Greene, M. H. (2008). Sisters in hereditary breast and ovarian cancer families: Communal coping, social integration, and psychological well-being. Psycho-Oncology, 17, 812-821.
    Leonard, V. W. (1989). A Heideggerian phenomenologic perspective on the concept of the person. Advances in Nursing Science, 11(4), 40-55.
    Liede, A., Metcalfe, K., Hanna, D., Hoodfar, E., Snyder, C., Durham, C., … Narod, S. A. (2000). Evaluation of the needs of male carriers of mutations in BRCA1 or BRCA2 who have undergone genetic counseling. American Journal of Human Genetics, 67, 1494-1504.
    McGivern, B., Everett, J., Yager, G. G., Baumiller, R. C., Hafertepen, A., & Saal, H. M. (2004). Family communication about positive BRCA1 and BRCA2 genetic test results. Genetics in Medicine, 6, 503-509.
    McInerney-Leo, A., Biesecker, B. B., Hadley, D. W., Kase, R. G., Giambarresi, T. R., Johnson, E., … Struewing, J. P. (2005). BRCA1/2 testing in hereditary breast and ovarian cancer families II: Impact on relationships. American Journal of Medical Genetics. Part A, 133, 165-169.
    National Cancer Institute. (2010). Genetics of breast and ovarian cancer. Retrieved from
    Peters, J. A., Kenen, R., Giusti, R., Loud, J., Weissman, N., & Greene, M. H. (2004). Exploratory study of the feasibility and utility of the colored eco-genetic relationship map (CEGRM) in women at high genetic risk of developing breast cancer. American Journal of Medical Genetics. Part A, 130A, 258-264.
    Schwartz, M. D., Peshkin, B. N., Tercyak, K. P., Taylor, K. L., & Valdimarsdottir, H. (2005). Decision making and decision support for hereditary breast-ovarian cancer susceptibility. Health Psychology, 24(4, Suppl.), S78 S84.
    Segal, J., Esplen, M. J., Toner, B., Baedorf, S., Narod, S., & Butler, K. (2004). An investigation of the disclosure process and support needs of BRCA1 and BRCA2 carriers. American Journal of Medical Genetics. Part A, 125A, 267-272.
    Smith, K. L., & Issacs, C. (2006-2007). Management of women at increased risk for hereditary breast cancer. Breast Disease, 27, 51-67.
    Wagner Costalas, J., Itzen, M., Malick, J., Babb, J. S., Bove, B., Godwin, A. K., & Daly, M. B. (2003). Communication of BRCA1 and BRCA2 results to at-risk relatives: A cancer risk assessment program's experience. American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, 119C(1), 11-18.