The Twilight Zone Between Health and Sickness: A Qualitative Exploration with Asymptomatic BRCA1 and 2 Mutation Carriers

Abstract

Purpose. To explore the way in which asymptomatic women diagnosed with mutation in BRCA1 or BRCA2 genes give meaning to their family scripts and to the dialectic between being concurrently healthy and at high risk for breast and ovarian cancer, vis-à-vis their way of coping with risks.

Methods. Seventeen asymptomatic Israeli women diagnosed as BRCA1 or 2 mutation carriers participated in the study. In-depth semi-structured interviews were conducted. Data were analyzed using qualitative-phenomenological methods.

Results. The following themes were revealed: (1) Cancer or surgery: the dominant fear; (2) Family clock; (3) Knowledge is power, and (4) Mother's story shapes daughter's construction of experience.

Conclusion. Breast and ovarian cancer worry was a major factor in opting for prophylactic oophorectomy. Family scripts, the hope to be healthy and the wish to live through significant stages in family life may lead to the choice of prophylactic oophorectomy among asymptomatic BRCA1 or 2 mutation carriers. However, it does not propel these women to opt for bilateral prophylactic mastectomy. Listening to different voices regarding risk reduction modalities is crucial among genetic counselors and health providers for health promotion in women at high risk.

KEYWORDS:

• BRCA1 and 2 genes
• hereditary breast and ovarian cancer
• asymptomatic carriers
• women's health

Notes

*This range includes three women over 40 years of age.