Abstract
Using a specially constructed questionnaire, the effect of BRCA test results for the Jewish founder mutations and genetic counseling on womenȁ9s attitudes towards and acceptance of preventive surgeries was evaluated. The subjects consisted of 99 women 43% of whom were found to be carriers as opposed to 57%––non-carriers. After learning of their genetic status, 94% of the carriers and 28% of the non-carriers declared having positively considered the option of preventive oophorectomy. However, only about 25% of the carriers and 4.5% of the non-carriers had positively considered the option of preventive mastectomy. In practice, 78% of the carriers and 18% of the non-carriers who proved to be eligible for these procedures underwent preventive oophorectomy compared with 19% of carriers and 1.8% of non-carriers who underwent preventive mastectomy. Almost all carriers, as well as a majority of the non-carriers, who finally opted for the preventive surgeries did so after learning the result of their genetic test. The different attitudes toward the two surgeries were found to be based on varied beliefs regarding the two procedures. Preventive oophorectomy was perceived as being more acceptable to women than preventive mastectomy both from an attitudinal as well as practical aspect. These differences may be the result of cultural factors, of womenȁ9s trust in the ability of screening tests to prevent morbidity and/or mortality, of the effect of the surgeries on body image and of different counseling protocols.
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References
Struewing JP, Hartge P, Wacholder S et al (1997) The risk of cancer associated with specific mutations of BRCA1 and BRCA2 among Ashkenazi Jews. N Engl J Med 336:1401–1408
The Breast Cancer Linkage Consortium (1999) Cancer risks in BRCA2 mutation carriers. J Natl Cancer Inst 91:1310–1316
Risch HA, McLaughlin JR, Cole DE et al (2001) Prevalence and penetrance of germline BRCA1 and BRCA2 mutations in a population series of 649 women with ovarian cancer. Am J Hum Genet 68:700–710
King MC, Marks JH, Mandell JB (2003) New York Breast Cancer Study Group. Breast cancer risks due to inherited mutations in BRCA1 and BRCA2. Science 302:643–646
Hartmann LC, Sellers TA, Schaid DJ, et al (1999) Clinical options for women at high risk for breast cancer. Surg Clin North Am 79:1189–1206
Burke W, Daly M, Garber J et al (1997) Recommendations for follow-up care of individuals with an inherited predisposition to cancer: II. BRCA1 and BRCA2. JAMA 277:997–1003
Seidman AD. BRCA1/2 mutations: implications for prognosis, treatment, outcome, prevention. American Society of Clinical Oncology 35th Annual Meeting. 1999
Hartmann LC, Schaid DJ, Woods JE et al (1999) Efficacy of bilateral prophylactic mastectomy in women with a family history of breast cancer. N Engl J Med 340:77–84
Hartmann LC, Sellers TA, Schaid DJ et al (2001) Efficacy of prophylactic mastectomy in BRCA1 and BRCA2 gene mutation carriers. J Natl Cancer Inst 93:1633–1637
Rebbeck TR, Lynch HT, Neuhausen SL et al (2002) Prophylactic oophorectomy in carriers of BRCA1 or BRCA2 mutations. N Engl J Med. 346:1616–1622
Kauff ND, Satagopan JM, Robson ME et al (2002) Risk-reducing salpingo-oophorectomy in women with a BRCA1 or BRCA2 mutation. N Engl J Med 346:1609–1615
Schrag D, Kuntz KM, Garber JE et al (1997) Decision analysis-effects of prophylactic mastectomy and oophorectomy on life expectancy among women with BRCA1 or BRCA2 mutations. N Engl J Med 336: 1465–1471
Grann VR, Panageas KS, Whang W et al (1998) Decision analysis of prophylactic mastectomy and oophorectomy in BRCA1 positive or BRCA2 positive patients. J Clin Oncol 16:979–985
Wagner TM, Moslinger R, Langbauer G et al (2000) Attitude towards prophylactic surgery and effects of genetic counselling in families with BRCA mutations. Austrian Hereditary Breast and Ovarian Cancer Group. Br J Cancer 82:1249–1253
Frost MH, Schaid DJ, Sellers TA et al (2000) Long-term satisfaction and psychological and social function following bilateral prophylactic mastectomy. JAMA 284:319–324
Hopwood P, Lee A, Shenton A et al (2000) Clinical follow-up after bilateral risk reducing (ȁ8prophylacticȁ9) mastectomy: mental health and body image outcomes. Psycho-Oncology 9:462–472
Lerman C, Hughes C, Croyle RT et al (2000) Prophylactic surgery decisions and surveillance practices one year following BRCA1/2 testing. Prev Med 31:75–80
Meijers-Heijboer EJ, Verhoog LC, Brekelmans CT et al (2000) Presymptomatic DNA testing and prophylactic surgery in families with a BRCA1 or BRCA2 mutation. Lancet 355:2015–2020
Unic I, Verhoef LC, Stalmeier PF et al (2000) Prophylactic mastectomy or screening in women suspected to have the BRCA1/BRCA2 mutation: a prospective pilot study of womenȁ9s treatment choices and medical decision-analytic recommendations. Med Decis Making 20:251–262
Di Prospero LS, Seminsky M, Honeyford J et al (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. CMAJ 164:1005–1009
Cappelli M, Surh L, Humphreys L et al (2001) Measuring womenȁ9s preferences for breast cancer treatments and BRCA1/BRCA2 testing. Qual Life Res 10:595–607
Julian-Reynier CM, Bouchard LJ, Evans DG et al (2001) Womenȁ9s attitudes toward preventive strategies for hereditary breast or ovarian carcinoma differ from one country to another: differences among English, French, and Canadian women. Cancer 92:959–968
Weitzel JN, McCaffrey SM, Nedelcu R et al (2003) Effect of genetic cancer risk assessment on surgical decisions at breast cancer diagnosis. Arch Surg 138:1323–1328
Botkin JR, Smith KR, Croyle RT et al (2003) Genetic testing for a BRCA1 mutation: Prophylactic surgery and screening behavior in women 2 years post testing. Am J Med Genet 118A:201–209
Scheuer L, Kauff N, Robson R et al (2002) Outcome of preventive surgery and screening for breast and ovarian cancer in BRCA mutation carriers. J Clin Oncol 20:1260–1268
Schwartz MD, Kaufman E, Penkin B et al (2003) Bilateral prophylactic oophorectomy and ovarian cancer screening following BRCA1/BRCA1 mutation testing. J Clin Oncol 21:4034–4041
Lodder LN, Frets PG, Trijsburg RW et al (2002) One year follow up of women opting for presymptomatic testing for BRCA1 and BRCA1:emotional impact of the test outcome and decisions on risk management (surveillance or prophylactic surgery). Breast Cancer Res Treat 73:97–112
Wainberg S, Husted J (2004) Utilization of screening and preventive surgery among unaffected carriers of a BRCA1 or BRCA2 gene mutation. Cancer Epidemiol Biomarkers Prev 13:1989–1995
Struewing JP, Abeliovich D, Peretz T et al (1995) The carrier frequency of the BRCA1 185delAG mutation is approximately 1 percent in Ashkenazi Jewish individuals. Nat Genet 11:198–200
Oddoux C, Struewing JP, Clayton CM et al (1996) The carrier frequency of the BRCA2 617delT mutation among Ashkenazi Jewish individuals is approximately 1%. Nat Genet 14:188–190
Roa BB, Boyd AA, Volcik K et al (1996) Ashkenazi Jewish population frequencies for common mutations in BRCA1 and BRCA2. Nat Genet 14:185–187
Abeliovich D, Kaduri L, Lerer I et al (1997) The founder mutations 185delAG and 5382insC in BRCA1 and 6174delT in BRCA2 appear in 60% of ovarian cancer and 30% of early onset breast cancer patients among Ashkenazi women. Am J Hum Genet 60:505–514
Beller U, Halle D, Catane R et al (1997) High frequency of BRCA1 and BRCA2 mutations in Ashkenazi Jewish ovarian cancer patients, regardless of family history. Gynecol Oncol 67:123–126
Bar-Sade RB, Theodor L, Gak E, et al (1997) Could the 185delAG BRCA1 mutation be an ancient Jewish mutation? Eur J Human Gent 5:413–416
Lerer I, Wang T, Peretz T et al (1998) The 8765delAG mutation in BRCA2 is common among Jews of Yemmenite extraction. Am J Hum Gent 63:272–274
Watson M, Foster C, Eeles R et al (2004) Psychosocial impact of breast/ovarian (BRCA1/2) cancer-predictive genetic testing in a UK multi-centre clinical cohort. Br J Cancer 91:1787–1794
Lynch HT, Organ CH Jr, Harris RE et al (1978) Familial cancer: implications for surgical management of high-risk patients. Review. Surgery 83:104–113
Nguyen HN, Averette HE, Janicek M. (1994) Ovarian carcinoma. A review of the significance of familial risk factors and the role of prophylactic oophorectomy in cancer prevention Review. Cancer 74:545–555
Julian-Reynier CM, Eisinger F, Moatti JP et al (2000) Physiciansȁ9 attitudes towards mammography and prophylactic surgery for hereditary breast/ovarian cancer risk and subsequently published guidelines. Eur J Hum Genet 8:204–208
Geller G, Bernhardt BA, Doksum T et al (1998) Decision-making about breast cancer susceptibility testing: how similar are the attitudes of physicians, nurse practitioners, and at-risk women?. J Clin Oncol 16:2868–2876
Matloff ET, Shappel H, Brielly K et al (2000) What would you do? Specialistsȁ9 perspectives on cancer genetic testing, prophylactic surgery and insurance discrimination. J Clin Oncol 18:2484–2492
Armstrong K, Stopper J, Calzone K et al (2002) What does my doctor think? Preferences for knowing the doctorȁ9s opinion among women considering clinical testing for BRCA1/2 mutations. Genetic testing 6:115–118
Metcalfe KA, Liede A, Hoodfar E et al (2000) An evaluation of needs of female BRCA1 and BRCA2 carriers undergoing genetic counseling. J Med Genet 37:866–874
Acknowledgment
We would like to express our gratitude to the women who participated in the study for sharing their experience and thoughts; to the program nurse, Ms. Michele Gordon, for her assistance in coordinating the study, to our lab technicians who performed DNA testing and to Mr. Morris Kram for his assistance in editing this manuscript. This research was supported by the HWZOA Research Fund for Womenȁ9s Health.
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An erratum to this article can be found at http://dx.doi.org/10.1007/s10689-006-0013-9
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Kram, V., Peretz, T. & Sagi, M. Acceptance of Preventive Surgeries by Israeli Women Who had Undergone BRCA Testing. Familial Cancer 5, 327–335 (2006). https://doi.org/10.1007/s10689-006-0002-z
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DOI: https://doi.org/10.1007/s10689-006-0002-z