Women with BRCA1 or BRCA2 mutations renegotiating a post-prophylactic mastectomy identity: Self-image and self-disclosure

Journal of Genetic Counseling

Volumn 16, Issue 6, 2007, Pages 789-798

  Kenen, Regina H ^a   Shapiro, Pamela J ^b   Hantsoo, Liisa ^c   Friedman, Susan ^d   Coyne, James C ^c  

^a Department of Health and Exercise Science   (United States)

^b FOX CHASE CANCER CENTER   (United States)

^c UNIVERSITY OF PENNSYLVANIA   (United States)

^d Facing Our Risk of Cancer Empowered FORCE   (United States)

Author keywords

Prophylactic mastectomy; Reconstruction; Renegotiation of the self; Self disclosure; Self image; Stigma; Web based support group

Indexed keywords

BRCA1 PROTEIN; BRCA2 PROTEIN;

ADULT; ARTICLE; BREAST CANCER; CANCER PATIENT; CANCER PREVENTION; CANCER RISK; CLINICAL ARTICLE; EMOTIONALITY; FAMILIAL CANCER; FAMILY HISTORY; FEMALE; GENE MUTATION; GENETIC COUNSELING; GENETIC SCREENING; HIGH RISK PATIENT; HUMAN; MASTECTOMY; OVARY CANCER; SELF CONCEPT; SELF DISCLOSURE; SUPPORT GROUP;

BREAST NEOPLASMS; FEMALE; GENES, BRCA1; GENES, BRCA2; GENETIC COUNSELING; HUMANS; INTERVIEWS AS TOPIC; MASTECTOMY; SELF CONCEPT; SELF DISCLOSURE; SOCIAL IDENTIFICATION; SURVIVORS;

EID: 35948946063     PISSN: 10597700     EISSN: 15733599     Source Type: Journal    
DOI: 10.1007/s10897-007-9112-5     Document Type: Article

References (51)

1. Aday, R. H., Kehoe, G. C., & Farney, L. A. (2006). Impact of senior center friendships on aging women who live alone. Journal of Women and Aging, 18(1), 57-73.
2. Altaha, R., Reed, E., & Abraham, J. (2003). Breast and ovarian cancer genetics and prevention. The West Virginia Medical Journal, 5, 187-191.
3. American Cancer Society (2006). Cancer facts and figures 2006. Atlanta: American Cancer Society.
4. Antoniou, A., Pharoah, P. D. P., Narod, S., Risch, H. A., Eyfjord, J. E., Hopper, J. L., 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. American Journal of Human Genetics, 72, 1117-1130.
5. Apter, T., & Josselson, R. (1998). Best friends: The pleasures and perils of girl's and women's friendships. New York: Crown Press.
6. Beeson, D. (1997). Nuance, complexity, and context: qualitative methods in genetic counseling research. Journal of Genetic Counseling, 6, 21-43.
7. Bresser, P. J., Seynaeve, C., Van Gool, A. R., Brekelmans, C. T., Meijers-Heijboer, H., Van Geel, A. N., et al. (2006). Satisfaction with prophylactic mastectomy and breast reconstruction in genetically predisposed women. Plastic and Reconstructive Surgery, 117(6), 1675-1682.
8. Brose, S. Rebbeck, T., Calzone, K., Stopfer, J., Nathanson, K., & Weber, B. (2002). Cancer risk estimates for BRCA1 mutation carriers identified in a risk evaluation program. Journal of the National Cancer Institute, 94, 1365-1372.
9. Charmaz, K. (1991). Good days, bad days. New Brunswick: Rutgers University Press.
10. deMichele, A., & Weber, B. (2002). Risk management in BRCA1 and BRCA2 mutation carriers: lessons learned, challenges posed. Journal of Clinical Oncology, 20(5), 1164-1166.
11. Druley, J. A., Stephens, M. A., & Coyne, J. C. (1997). Emotional and physical intimacy in coping with lupus: women's dilemmas of disclosure and approach. Health Psychology, 16(6), 506-514.
12. Fogel, J., Albert, S. M., Schnabel, F., Ditkoff, B. A., & Neugut, A. I. (2003) Racial/ethnic differences and potential psychological benefits in use of the internet by women with breast cancer. Psycho-Oncology, 12(2), 107-17.
13. Ford, D., Easton, D. F., Stratton, M. R., Narod, S., Goldgar, D., Derilee, P., et al. (1998). Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. American Journal of Human Genetics, 62(3), 676-689.
14. Fortenberry, J. D., McFarlane, M., Bleakley, A., Bull, S., Fishbein, M., Grimley, D. M., et al. (2002). Relationships of stigma and shame to gonorrhea and HIV screening. American Journal of Public Health, 92(3), 378-381.
15. Frost, M. H., Slezak, J. M., Tran, N. V., Williams, C. I., Johnson, J. L., Woods, J. E., et al. (2005). Satisfaction after contralateral prophylactic mastectomy: the significance of mastectomy type, reconstructive complications, and body appearance. Journal of Clinical Oncology, 23(31), 7849-56.
16. Glaser, B. G., & Strauss, A. L. (1967). Discovery of grounded theory: The strategies for qualitative research. Chicago: Aldine.
17. Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs: Prentice-Hall.
18. Grann, V. R., Jacobson, J. S., Thomason, D., Hershman, D., Heitjan, D. F., & Neugat, A. I. (2002). Effect of prevention strategies on survival and quality-adjusted survival of women with BRCA1/2 mutations: An updated decision analyses. Journal of Clinical Oncology, 20(10), 2520-2529.
19. Gui, G. P., Tan, S. M., Faliakou, E., Choy, C., A'Hern, R., & Ward, A. (2003). Immediate breast reconstruction using biodimensional anatomical permanent expander implants: A prospective analysis of outcome and patient satisfaction. Plastic and Reconstructive Surgery, 111(1), 125-138.
20. Harcourt, D. M., Rumsey, N. J., Ambler, N. R., Cawthorn, S. J., Reid, C. D., Maddox, P. R., et al. (2003). The psychological effect of mastectomy with or without breast reconstruction: A prospective, multicenter study. Plastic and Reconstructive Surgery, 111(3), 1060-1068.
21. Helft, P. R. (2004). Breast cancer in the information age: a review of recent developments. Breast Disease, 21, 41-46.
22. Hilbert, R. A. (1984). The acultural dimensions of chronic pain-flawed reality construction and the problem of meaning. Social Problems, 31, 365.
23. Hopwood, P., Lee, A., Shenton, A., Baildam, A., Brain, A., Lalloo, F., et al. (2000). Clinical follow-up after bilateral risk reducing ('prophylactic') mastectomy: mental health and body image outcomes. Psycho-Oncology, 9(6), 462-72.
24. Jacobson, D. (1999). Doing research in cyberspace. Field Methods, 11, 127-145.
25. Kelly, M. (1992). Self, identity and radical surgery. Sociology of Health and Illness, 14(3), 390-415.
26. Kenen, R., Ardern-Jones, R., & Eeles, R. (2003). Living with chronic risk: Women from hereditary breast/ovarian cancer families (HBOC). Health, Risk, and Society, 5(3), 315-331.
27. Kenen, R., Ardern-Jones, A., & Eeles, R. (2004). Healthy women from suspected hereditary breast and ovarian cancer (HBOC) families: The significant others in their lives. European Journal of Cancer Care, 13, 169-179.
28. Kenen, R., Shapiro, P., Friedman, S., & Coyne, J. (2007). Peer-support in coping with medical uncertainty: Discussion of oophorectomy and hormone replacement therapy on a web-based message board. Psycho-Oncology (in press)
29. Kroenke, C. H., Kyubzansky, L. D., Schernhammer, E. S., Homes, M. D., & Kawachi, I. (2006). Social networks, social support, and survival after breast cancer diagnosis. Journal of Clinical Oncology, 24(7), 1105-1111.
30. Lloyd, S. M., Watson, M., Oaker, G., Sacks, N., Querci Della Rovere, U., & Gui, G. (2000). Understanding the experience of prophylactic bilateral mastectomy: a qualitative study of ten women. Psycho-Oncology, 9(6), 473-485.
31. Lostumbo, L., Carbine, N., Wallace, J., & Ezzo, J. (2004). Prophylactic mastectomy for the prevention of breast cancer. Cochrane Database System Review, 18(4), CD002748.
32. Mathieson, C. M., & Stam, H. J. (1995). Renegotiating identity: Cancer narratives. Sociology of Health and Illness, 17, 283-306.
33. McDonnell, S. K., Schaid, J. L., Myers, C. S., Grant, J. H., Donohue, J. H., Woods, J. E., et al. (2001). Efficacy of contralateral prophylactic mastectomy in women with a personal and family history of breast cancer. American Journal of Clinical Oncology, 19(19), 3938-3943.
34. National Comprehensive Cancer Network (2007). Clinical practice guidelines in oncology: Guidelines for detection, prevention, and risk reduction of cancer. Jenkintown: National Comprehensive Cancer Network.
35. Nonnecke, B., Preece, J., Andrews, V., & Voukour, R. (2004). Online lurkers tell why. In Proceedings of the tenth Americas Conference on Information Systems (pp. 2688-2694). New York.
36. Ohlen, J., & Holm, A. K. (2006). Transforming desolation into consolation: being a mother with life-threatening breast cancer. Health Care Women International, 27, 18-44.
37. Peralta, E. A., Ellenhorn, J. D., Wagman, L. D., Dagis, A., Andersen, J. S., & Chu, D. Z. (2000). Contralateral prophylactic mastectomy improves the outcome of selected patients undergoing mastectomy for breast cancer. American Journal of Surgery, 180(6), 439-445.
38. Pidgeon, N. (1996). Grounded theory: Theoretical background. In J. T. E. Richardson (Ed.), Handbook of qualitative research methods (pp. 75-85). Leicester: The British Psychological Society.
39. Press, N., Reynolds, S., Pinsky, L., Murthy, V., Leo, M., & Burke, W. (2005). 'That's like chopping off a finger because you're afraid it might get broken': disease and illness in women's views of prophylactic mastectomy. Social Science and Medicine, 61(5), 1106-1117.
40. Ray, J. A., Loescher, L. J., & Brewer, M. (2005) Risk-reduction surgery decision in high-risk women seen for genetic counseling. Journal Genetics and Counseling, 14(6), 473-484.
41. Rebbeck, T. R., Lynch, H. T., Neuhausen, S. I., Narod, S. A., van't Veer, L., Garber, J. E., et al. (2002). Prophylactic oophorectomy in carriers of BRCA1 or BRCA2 mutations. New England Journal of Medicine, 346(21), 1616-1622.
42. Richards, T. (2001). Website of the week: Facing mastectomy. British Medical Journal, 2, 116.
43. Rozmovits, L., & Ziebland, S. (2004) What do patients with prostate or breast cancer want from and Internet site? A qualitative study of information needs. Patient Education Counseling, 53(1), 57-64.
44. Strauss, A., & Corbin, J. (1994). Grounded theory methodology: An overview. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research (pp. 273-285). Thousand Oaks: Sage Publications.
45. Suthers, G. K. (2007). Cancer risks for Australian women with a brca1 or a brca2 mutation. ANZ Journal of Surgery, 77(5), 314-319.
46. Taylor, S. E. (2002). The tending instinct: How nurturing is essential to who we are and how we live. New York: Henry Holt.
47. Taylor, S. E., Cousino, K. L., Lewis, B. P., Gruenewald, T. L., Gurung, R. A. R., & Updegraff, J. A. (2000). Biobehavioral responses to stress in females: Tend-and-befriend, not fight-or-flight. Psychological Review, 107(3), 411-429.
48. van Roosmalen, M. S., Verhoef, L. C., Stalmeier, P. F., Hoogerbrugge, N., & van Daal, W. A. (2002). Decision analysis of prophylactic surgery or screening for BRCA1 mutation carriers: a more prominent role for oophorectomy. Journal of Clinical Oncology, 20(8), 2092-2100.
49. Van Sprundel, T. C., Schmidt, M. K., Rookus, M. A., Brohet, R., van Asperen, C. J., Rutgers, E. J., et al. (2005). Risk reduction of contralateral breast cancer and survival after contralateral prophylactic mastectomy in BRCA1 or BRCA2 mutation carriers. British Journal of Cancer, 93(3), 287-292.
50. Weitz, R. (2004). The sociology of health, illness, and health care: A critical approach (3rd edition). Belmont: Wadsworth.
51. Zakaria, S., & Degnim, A. C. (2007) Prophylactic mastectomy. Surgical Clinics of North America, 87(2), 317-331.