The twilight zone between health and sickness: A qualitative exploration with asymptomatic BRCA1 and 2 mutation carriers

Women and Health

Volumn 49, Issue 4, 2009, Pages 263-279

  Dagan, Efrat ^a,b   Goldblatt, Hadass ^a  

^a UNIVERSITY OF HAIFA   (Israel)

^b Institute of Human Genetics   (Israel)

Author keywords

Asymptomatic carriers; BRCA1 and 2 genes; Hereditary breast and ovarian cancer; Women's health

Indexed keywords

ADAPTIVE BEHAVIOR; ADULT; ARTICLE; BREAST TUMOR; DECISION MAKING; FEMALE; GENETIC COUNSELING; GENETIC PREDISPOSITION; GENETICS; HEALTH STATUS; HETEROZYGOTE; HUMAN; ISRAEL; LITERATURE; MASTECTOMY; MIDDLE AGED; PSYCHOLOGICAL ASPECT; QUESTIONNAIRE; RISK FACTOR; TUMOR SUPPRESSOR GENE; WOMEN'S HEALTH;

ADAPTATION, PSYCHOLOGICAL; ADULT; ANECDOTES AS TOPIC; BREAST NEOPLASMS; DECISION MAKING; FEMALE; GENES, BRCA1; GENES, BRCA2; GENETIC COUNSELING; GENETIC PREDISPOSITION TO DISEASE; HEALTH STATUS; HETEROZYGOTE; HUMANS; ISRAEL; MASTECTOMY; MIDDLE AGED; QUESTIONNAIRES; RISK FACTORS; WOMEN'S HEALTH;

EID: 70350767359     PISSN: 03630242     EISSN: 15410331     Source Type: Journal    
DOI: 10.1080/03630240903158321     Document Type: Article

References (50)

1. American Society of Clinical Oncology. 2003. Policy statement update: Genetic testing for cancer susceptibility. J Clin Oncol 21:2397-406.
2. Antoniou, A., P. D. Pharoah, S. Narod, H. A. Risch, J. E. Eyfjord, J. L. Hopper, et al. 2003. Average risks of breast and ovarian cancer associated with BRCA1 or BRCA2 mutations detected in case series unselected for family history: A combined analysis of 22 studies. Am J Hum Genet 72:1117-30.
3. Babrow, A. S., and K. N. Kline. 2000. From "reducing" to "coping with" uncertainty: Reconceptualizing the central challenge in breast self-exams. Soc Sci & Med 51:1805-16.
4. Becker, C. S. 1992. Living and relating. Newbury Park, CA: Sage.
5. Becker, G. 1999. Disrupted lives - How people create meaning in a chaotic world. Berkeley, CA: University of California Press.
6. Borgen, P. I., A. D. Hill, K. N. Tran, K. J. Van Zee, M. J. Massie, D. Payne, et al. 1998. Patient regrets after bilateral prophylactic mastectomy. Ann Surg Oncol 5:603-6.
7. Boss, P., C. Dahl, and L. Kaplan. 1996. The use of pheonomenology for family therapy research. In Research methods in family therapy, eds. D. H. Sprenkle and S. M. Moon, pp. 83-105. New York: Guilford Press.
8. Braithwaite, D., J. Emery, F. Walter, A. T. Prevost, and S. Sutton. 2004. Psychological impact of genetic counseling for familial cancer: A systematic review and metaanalysis. J Natl Cancer Inst 96:122-33.
9. Bruner, J. 1990. Acts of meaning. Cambridge, MA: Harvard University Press.
10. Burke, W., M. Daly, J. Garber, J. Botkin, M. J. Kahn, P. Lynch, et al. 1997. Recommendations for follow-up care of individuals with inherited predisposition to cancer. II. BRCA1 and BRCA2. J Amer Med Assoc 77:997-1003.
11. Calderon-Margalit, R., and O. Paltiel. 2004. Prevention of breast cancer in women who carry BRCA1 or BRCA2 mutations: A critical review of the literature. Intl J Can 112:357-64.
12. Colyer, H. 1996. Women's experience of living with cancer. J Adv Nurs 23:496-501.
13. Eisen, A., J. Lubinski, J. Klijn, P. Moller, H. T. Lynch, K. Offit, et al. 2005. Breast cancer risk following bilateral oophorectomy in BRCA1 and BRCA2 mutation carriers: An international case-control study. J Clin Oncol 23:7491-6.
14. Ford, L. A., A. S. Babrow, and C. Stohl. 1996. Social support messages and the management of uncertainty in the experience of breast cancer: An application of problematic integration theory. Commun Monogr 63:189-207.
15. Frost, M. H., D. J. Schaid, T. A. Sellers, J. M. Slezak, P. G. Arnold, J. E. Woods, et al. 2000 Long-term satisfaction and psychological and social function following bilateral prophylactic mastectomy. J Amer Med Assoc 19:319-24.
16. Gee, J. 1985. The narrativization of experience in oral style. J Education 167:9-35.
17. Hallowell, N. 2000. A qualitative study of the information needs of high-risk women undergoing prophylactic oophorectomy. Psychooncology 9:486-95.
18. Hallowell, N., C. Foster, R. Eeles, A. Ardern-Jones, and M. Watson. 2004. Accommodating risk: Responses to BRCA1/2 genetic testing of women who have had cancer. Soc Sci & Med 59:553-65.
19. Hallowell, N., I. Jacobs, M. Richards, J. Mackay, and M. Gore. 2001. Surveillance or surgery? A description of the factors that influence high risk premenopausal women's decisions about prophylactic oophorectomy. J Med Genet 38:683-91.
20. Hartmann, L. C., D. J. Schaid, J. E. Woods, T. P. Crotty, J. L. Myers, P. G. Arnold, et al. 1999. Efficacy of bilateral prophylactic mastectomy in women with a family history of breast cancer. New Engl J Med 340:77-84.
21. Josephson, U., M. Wickman, and K. Sandelin. 2000. Initial experiences of women from hereditary breast cancer families after bilateral prophylactic mastectomy: A retrospective study. Euro J Surg Oncol 26:351-6.
22. Kauff, N. D., J. M. Satagopan, M. E. Robson, L. Scheuer, M. Hensley, C. A. Hudis, et al. 2002. Risk-reducing salpingo-oophorectomy in women with a BRCA1 or BRCA2 mutation. New Engl J Med 346:1609-15.
23. King, M. C., J. H. Marks, J. B. Mandell, and New York Breast Cancer Study Group. 2003. Breast and ovarian cancer risks due to inherited mutations in BRCA1 and BRCA2. Science 302:643-6.
24. Kram, V., T. Peretz, and M. Sagi. 2006. Acceptance of preventive surgeries by Israeli women who had undergone BRCA testing. Famil Can 5:327-35.
25. Lincoln, Y. S., and E. G. Guba. 1985. Naturalistic inquiry. Newbury Park, CA: Sage.
26. Lloyd, S. M., M. Watson, G. Oaker, N. Sacks, U. Querci della Rovere, and G. Gui. 2000. Understanding the experience of prophylactic bilateral mastectomy: A qualitative study of ten women. Psychooncology 9:473-85.
27. Lodder, L. N., P. G. Frets, R. W. Trijsburg, E. J. Meijers-Heijboer, J. G. Klijn, C. Seynaeve, et al. 2002. One year follow-up of women opting for presymptomatic testing for BRCA1 and BRCA2: Emotional impact of the test outcome and decisions on risk management (surveillance or prophylactic surgery). Breast Can Res & Treat 73:97-112.
28. Mathieson, M. C., and J. H. Stam. 1995. Renegotiating identity: Cancer narratives. Sociol Health & Ill 17:283-306.
29. Meijers-Heijboer, H., B. van Geel, W. L. van Putten, S. C. Henzen-Logmans, C. Seynaeve, M. B. Menke-Pluymers, et al. 2001. Breast cancer after prophylactic bilateral mastectomy in women with a BRCA1 or BRCA2 mutation. New Engl J Med 345:159-64.
30. Meiser, B., and J. L. Halliday. 2002. What is the impact of genetic counseling in women at increased risk of developing hereditary breast cancer? A meta-analytic review. Soc Sci & Med 54:1463-70.
31. Metcalfe, K. A., M. J. Esplen, V. Goel, and S. A. Narod. 2004. Psychosocial functioning in women who have undergone bilateral prophylactic mastectomy. Psychooncology 13:14-25.
32. Metcalfe, K. A., D. Birenbaum-Carmeli, J. Lubinski, J. Gronwald, H. Lynch, P. Moller, et al. 2008. International variation in rates of uptake of preventive options in BRCA1 and BRCA2 mutation carriers. Intl J Can 122:2017-22.
33. Mishler, E. 1986. Research interview: Context and narrative. Cambridge, MA: Harvard University Press.
34. Moustakas, C. E. 1994. Phenomenological research methods. Thousand Oaks, CA: Sage.
35. Oktay, J. S. 2005. Breast cancer: Daughters tell their stories. Binghamton, NY: Haworth Press.
36. Osborn, T. 2007. The psychosocial impact of parental cancer on children and adolescents: A systematic review. Psychooncology, 16:101-26.
37. Patton, M. Q. 1990. Qualitative evaluation and research methods (2nd ed). Newbury Park, CA: Sage.
38. Payne, D. K., C. Biggs, K. N. Tran, P. I. Borgen, and M. J. Massie. 2000. Women's regrets after bilateral prophylactic mastectomy. Ann Surg Oncol 7:150-4.
39. Rebbeck, T. R., H. T. Lynch, S. L. Neuhausen, S. A. Narod, L. Van't Veer, J. E. Garber, et al. 2002. Prophylactic oophorectomy in carriers of BRCA1 or BRCA2 mutation. New Engl J Med 346:1616-22.
40. Renzetti, C. M., and R. M. Lee. 1993. The problems of researching sensitive topics: An overview and introduction. In Researching sensitive topics, eds. C. M. Renzetti and R. M. Lee, pp. 3-13. Newbury Park, CA: Sage.
41. Rosenblatt, P. C., and L. R. Fischer. 1993. Qualitative family research. In Sourcebook of family theories and methods: A contextual approach eds. P. G. Boss, W. J. Doherty, R. LaRossa, W. R. Schumm, and S. K. Steinmetz, pp. 167-77. New York: Plenum Press.
42. Simchoni, S., E. Friedman, B. Kaufman, R. Gershoni-Baruch, A. Orr-Urtreger, I. Kedar-Barnes, et al. 2006. Familial clustering of site-specific cancer risks associated with BRCA1 and BRCA2 mutations in the Ashkenazi Jewish population. Proc Natl Acad Sci U.S.A. 103:3770-4.
43. Snyder, C. R., J. Cheavens, and S. T. Michael. 1999. Hopping. In Coping: The psychology of what works, ed. C. R. Snyder, pp. 205-31. New York: Oxford University Press.
44. Spinelli, E. 1989. The interpreted world. London: Sage.
45. Stanton, A. L., S. Danoff-Burg, and M. E. Huggins. 2002. The first year after breast cancer diagnosis: Hope and coping strategies as predictors of adjustment. Psychooncology 11:93-102.
46. Strauss, A. L. 1987. Qualitative analysis for social scientists. Cambridge, UK: Cambridge University Press.
47. Strauss, A. L., and J. Corbin. 1998. Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). Newbury Park, CA: Sage.
48. van Maanen, M. 1990. Researching lived experience: Human science for an active sensitive pedagogy. Albany, NY: State University of New York Press.
49. Wainberg, S., and J. Husted. 2004. Utilization of screening and preventive surgery among unaffected carriers of a BRCA1 or BRCA2 gene mutation. Can Epidemi, Biomark & Prev 13:1989-1995.
50. Watson, M., C. Foster, R. Eeles, D. Eccles, S. Ashley, R. Davidson, et al. 2004. Psychosocial impact of breast/ovarian (BRCA1/2) cancer-predictive genetic testing in a UK multi-centre clinical cohort. Br J Can 91:1787-94.