'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

Volumn 61, Issue 5, 2005, Pages 1106-1117

  Press, Nancy ^a   Reynolds, Susan ^b   Pinsky, Linda ^b   Murthy, Vinaya ^c   Leo, Michael ^a   Burke, Wylie ^b  

^a OREGON HEALTH AND SCIENCE UNIVERSITY   (United States)

^b UNIVERSITY OF WASHINGTON   (United States)

^c UNIVERSITY OF PITTSBURGH GRADUATE SCHOOL OF PUBLIC HEALTH   (United States)

Author keywords

Breast cancer; Disease and illness; Genetic susceptibility; Prophylactic mastectomy; USA

Indexed keywords

CANCER;

ARTICLE; BREAST CANCER; CANCER PREVENTION; CANCER RISK; CANCER SCREENING; CANCER SURGERY; CANCER SUSCEPTIBILITY; DEMOGRAPHY; ETHNIC GROUP; FEMALE; GENETIC RISK; GENETIC SCREENING; GENETIC SUSCEPTIBILITY; HUMAN; ILLNESS BEHAVIOR; MASTECTOMY; PERCEPTION; UNITED STATES;

BREAST NEOPLASMS; DECISION MAKING; FEMALE; GENETIC PREDISPOSITION TO DISEASE; HUMANS; MASTECTOMY; SOCIOECONOMIC FACTORS;

EID: 20444383159     PISSN: 02779536     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.socscimed.2005.01.012     Document Type: Article

References (39)

1. S. Ariyan, L.C. Hartmann, T.A. Sellers, D.J. Schaid, T.S. Frank, and C.L. Soderberg Prophylactic mastectomy for precancerous and high-risk lesions of the breast: Efficacy of bilateral prophylactic mastectomy in BRCA1 and BRCA2 gene mutation carriers Canadian Journal of Surgery 28 3 1985 262 264, 266
2. J.R. Botkin, K.R. Smith, R.T. Croyle, B.J. Baty, J.E. Wylie, and D. Dutson Genetic testing for a BRCA1 mutation: Prophylactic surgery and screening behavior in women 2 years post testing American Journal of Medical Genetics 118A 3 2003 201 209
3. L. Bouchard, I. Blancquaert, F. Eisinger, W.D. Foulkes, G. Evans, H. Sobol, and C. Julian-Reynier Prevention and genetic testing for breast cancer: Variation in medical decisions Social Science and Medicine 58 6 2004 1085 1096
4. C.H. Browner, and N. Press The normalization of prenatal screening: Women's acquiescence to the alpha fetoprotein blood test F. Ginsburg R. Rapp Conceiving the new world order: The global politics of reproduction 1995 University of California Press Berkeley, CA
5. A. Eisen, T.R. Rebbeck, W.C. Wood, and B.L. Weber Prophylactic surgery in women with a hereditary predisposition to breast and ovarian cancer Journal of Clinical Oncology 18 9 2000 1980 1995
6. L. Eisenberg The physician as interpreter: Ascribing meaning to the illness experience Comprehensive Psychiatry 22 3 1981 239 248
7. J. Erblich, D.H. Bovbjerg, and H.B. Valdimarsdottir Looking forward and back: Distress among women at familial risk for breast cancer Annals of Behavioral Medicine 22 1 2000 53 59
8. G. Geller, B.A. Bernhardt, T. Doksum, K.J. Helzlsouer, P. Wilcox, and N.A. Holtzman Decision-making about breast cancer susceptibility testing: How similar are the attitudes of physicians, nurse practitioners, and at-risk women? Journal of Clinical Oncology 16 8 1998 2868 2876
9. L.C. Hartmann, D.J. Schaid, J.E. Woods, T.P. Crotty, J.L. Myers, and P.G. Arnold Efficacy of bilateral prophylactic mastectomy in women with a family history of breast cancer New England Journal of Medicine 340 2 1999 77 84
10. L.C. Hartmann, T.A. Sellers, D.J. Schaid, T.S. Frank, C.L. Soderberg, and D.L. Sitta Efficacy of bilateral prophylactic mastectomy in BRCA1 and BRCA2 gene mutation carriers Journal of the National Cancer Institute 93 21 2001 1633 1637
11. M.B. Hatcher, L. Fallowfield, and R. A'Hern The psychosocial impact of bilateral prophylactic mastectomy: Prospective study using questionnaires and semistructured interviews British Medical Journal 322 7278 2001 76
12. C.M. Julian-Reynier, L.J. Bouchard, D.G. Evans, F.A. Eisinger, W.D. Foulkes, and B. Kerr Women's attitudes toward preventive strategies for hereditary breast or ovarian carcinoma differ from one country to another: Differences among English, French, and Canadian women Cancer 92 4 2001 959 968
13. A. Kleinman The illness narratives: Suffering, healing, and the human condition 1988 Basic Books, Inc New York
14. A. Kleinman, L. Eisenberg, and B. Good Culture, illness, and care: Clinical lessons from anthropologic and cross-cultural research Annals of Internal Medicine 88 2 1978 251 258
15. C. Lerman, S. Narod, K. Schulman, C. Hughes, A. Gomez-Caminero, and G. Bonney BRCA1 testing in families with hereditary breast-ovarian cancer. A prospective study of patient decision making and outcomes [see comments] Journal of the American Medical Association 275 24 1996 1885 1892
16. B.H. Lerner Fighting the war on breast cancer: Debates over early detection, 1945 to the present Annals of Internal Medicine 129 1 1998 74 78
17. L.N. Lodder, P.G. Frets, R.W. Trijsburg, E.J. Meijers-Heijboer, J.G. Klijn, and C. Seynaeve 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 Cancer Research and Treatment 73 2 2002 97 112
18. E.J. Meijers-Heijboer, L.C. Verhoog, C.T. Brekelmans, C. Seynaeve, M.M. Tilanus-Linthorst, and A. Wagner Presymptomatic DNA testing and prophylactic surgery in families with a BRCA1 or BRCA2 mutation Lancet 355 9220 2000 2015 2020
19. H. Meijers-Heijboer, C.T. Brekelmans, M. Menke-Pluymers, C. Seynaeve, A. Baalbergen, and C. Burger Use of genetic testing and prophylactic mastectomy and oophorectomy in women with breast or ovarian cancer from families with a BRCA1 or BRCA2 mutation Journal of Clinical Oncology 21 9 2003 1675 1681
20. H. Meijers-Heijboer, B. van Geel, W.L. van Putten, S.C. Henzen-Logmans, C. Seynaeve, and M.B. Menke-Pluymers Breast cancer after prophylactic bilateral mastectomy in women with a BRCA1 or BRCA2 mutation New England Journal of Medicine 345 3 2001 159 164
21. B. Meiser, P. Butow, M. Friedlander, V. Schnieden, M. Gattas, and J. Kirk Intention to undergo prophylactic bilateral mastectomy in women at increased risk of developing hereditary breast cancer Journal of Clinical Oncology 18 11 2000 2250 2257
22. B. Meiser, P. Butow, M. Price, B. Bennett, G. Berry, K. Tucker National Consortium for Research into Familial Breast Cancer Psychological Group Attitudes to prophylactic surgery and chemoprevention in Australian women at increased risk for breast cancer Journal of Women's Health (Larchmont) 12 8 2003 769 778
23. Y. Miyoshi, and S. Noguchi Genetic test and prophylactic treatment in breast cancer families Gan To Kagaku Ryoho 29 4 2002 512 522
24. N. Press, and C.H. Browner Why women say yes to prenatal testing Social Science & Medicine 45 7 1997 979 989
25. N.A. Press, Y. Yasui, S. Reynolds, S.J. Durfy, and W. Burke Women's interest in genetic testing for breast cancer susceptibility may be based on unrealistic expectations American Journal of Medical Genetics 99 2 2001 99 110
26. T.R. Rebbeck, T. Friebel, H.T. Lynch, S.L. Neuhausen, L. Van 't Veer, and J.E. Garber Bilateral prophylactic mastectomy reduces breast cancer risk in BRCA1 and BRCA2 mutation carriers: The PROSE Study Group Journal of Clinical Oncology 23 2004 23
27. C.E. Rosenberg Disease and social order in America: Perceptions and expectations The Milbank Quarterly 64 Suppl. 1 1986 34 55
28. M. Sarr, E.J. Simoes, T. Murayi, L.T. Figgs, and R.C. Brownson Trends in breast cancer screening in Missouri from 1987 to 1995, and predictions for the years 2000 and 2010 Molecular Medicine 95 12 1998 663 669
29. L. Scheuer, N. Kauff, M. Robson, B. Kelly, R. Barakat, and J. Satagopan Outcome of preventive surgery and screening for breast and ovarian cancer in BRCA mutation carriers Journal of Clinical Oncology 20 5 2002 1260 1268
30. Schwartz, M.D., & Miller, S. (2003). Screening/prevention practices of individuals at risk: Building bridges from tantalizing findings to future directions. Presentation presented at the cancer genetics studies consortium, Alexandria, VA.
31. C.I. Scott, D.G. Iorgulescu, H.J. Thorne, M.A. Henderson, K.A. Phillips Kathleen Cuningham Foundation Consortium for Familial Breast Cancer Clinical, pathological and genetic features of women at high familial risk of breast cancer undergoing prophylactic mastectomy Clinical Genetics 64 2 2003 111 121
32. E.J. Simoes, C.J. Newschaffer, N. Hagdrup, F. Ali-Abarghoui, X. Tao, and N. Mack Predictors of compliance with recommended cervical cancer screening schedule: A population-based study Journal of Community Health 24 2 1999 115 130
33. S. Sontag Illness as metaphor 1988 Farrar, Strauss and Giroux New York
34. M. Stefanek, C. Enger, J. Benkendorf, S. Flamm Honig, and C. Lerman Bilateral prophylactic mastectomy decision making: A vignette study Preventive Medicine 29 3 1999 216 221
35. M.E. Stefanek, K.J. Helzlsouer, P.M. Wilcox, and F. Houn Predictors of and satisfaction with bilateral prophylactic mastectomy Preventive Medicine 24 4 1995 412 419
36. A. Strauss, and J. Corbin Basics of qualitative research 1990 Sage Beverly Hills, CA
37. S. van Dijk, W. Otten, M.W. Zoeteweij, D.R. Timmermans, C.J. van Asperen, and M.H. Breuning Genetic counselling and the intention to undergo prophylactic mastectomy: Effects of a breast cancer risk assessment British Journal of Cancer 88 11 2003 1675 1681
38. T.M. Wagner, R. Moslinger, G. Langbauer, R. Ahner, E. Fleischmann, and A. Auterith Attitude towards prophylactic surgery and effects of genetic counselling in families with BRCA mutations. Austrian Hereditary Breast and Ovarian Cancer Group British Journal of Cancer 82 7 2000 1249 1253
39. L.D. Ziegler, and S.S. Kroll Primary breast cancer after prophylactic mastectomy American Journal of Clinical Oncology 14 5 1991 451 454