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The use of preventive measures among healthy women who carry a BRCA1 or BRCA2 mutation

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Abstract

Purpose: The purpose of this study was to assess women’s knowledge about tamoxifen, to examine the frequency of tamoxifen usage and other preventive measures in BRCA1/2 mutation carriers, and to document women’s concerns about taking tamoxifen for chemoprevention.Methods: One hundred and twenty five women with known BRCA1 or BRCA2 mutation and with no prior diagnosis of breast or ovarian cancer were identified through the records of two large cancer genetics clinics. These women had been counseled about their cancer risk and various preventive options were discussed. At a time from two to 110 months following disclosure session, a questionnaire was sent by mail. Women were asked about their current and past use of tamoxifen, their knowledge of risks and benefits, their desire for additional information, and their experience with other preventive measures.Results: Eighty-one of 125 eligible women returned the questionnaire (64.8%). Ten women (12.3%) had used tamoxifen and eight women had used raloxifene (9.9%). Twenty-two women (27.2%) had undergone prophylactic mastectomy and 54 women (66.7%) had had an oophorectomy. Twelve women (14.8%) did not recall discussing tamoxifen. Thirty-five women (58.3%) said that their doctors had not provided them with sufficient information about tamoxifen to consider its use. Fear of side-effects was the most common reason for not taking tamoxifen.Conclusion: Although tamoxifen appears to be effective in preventing breast cancer in women with a BRCA1 or BRCA2 mutation, few women now take the drug compared to those who choose other preventive measures including surgery. Health care providers should provide accurate information about the risks and benefits of tamoxifen to allow women to make informed decisions.

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References

  • KI Pritchard (2001) ArticleTitleBreast cancer prevention with selective estrogen receptor modulators: a perspective Ann N Y Acad Sci 949 89–98 Occurrence Handle1:CAS:528:DC%2BD38XnsFWrsQ%3D%3D Occurrence Handle11795385

    CAS  PubMed  Google Scholar 

  • B Fisher JP Costantino DL Wickerham et al. (1998) ArticleTitleTamoxifen for prevention of breast cancer: report of the National Surgical Adjuvant Breast and Bowel Project P-1 study J Natl Cancer Inst 90 IssueID18 1371–88 Occurrence Handle10.1093/jnci/90.18.1371 Occurrence Handle1:CAS:528:DyaK1cXmtlelurs%3D Occurrence Handle9747868

    Article  CAS  PubMed  Google Scholar 

  • MC King S Wieand K Hale et al. (2001) ArticleTitleTamoxifen and breast cancer incidence among women with inherited mutations in BRCA1 and BRCA2: National Surgical Adjuvant Breast and Bowel Project (NSABP-P1) Breast Cancer Prevention Trial JAMA 286 IssueID18 2251–6 Occurrence Handle10.1001/jama.286.18.2251 Occurrence Handle1:CAS:528:DC%2BD3MXosFCktr8%3D Occurrence Handle11710890

    Article  CAS  PubMed  Google Scholar 

  • SA Narod JS Brunet P Ghadirian et al. (2000) ArticleTitleTamoxifen and risk of contralateral breast cancer in BRCA1 and BRCA2 mutation carriers: a case-control study. Hereditary Breast Cancer Clinical Study Group Lancet 356 IssueID9245 1876–81 Occurrence Handle10.1016/S0140-6736(00)03258-X Occurrence Handle1:CAS:528:DC%2BD3cXovFWjsL8%3D Occurrence Handle11130383

    Article  CAS  PubMed  Google Scholar 

  • KA Metcalfe H Lynch P Ghadirian et al. (2003) ArticleTitleThe Risk of Contralateral Breast Cancer in BRCA1 and BRCA2 Carriers J Clin Oncol 22 IssueID12 2328–35 Occurrence Handle10.1200/JCO.2004.04.033

    Article  Google Scholar 

  • L Fallowfield A Fleissig R Edwards et al. (2001) ArticleTitleTamoxifen for the prevention of breast cancer: psychosocial impact on women participating in two randomized controlled trials J Clin Oncol 19 IssueID7 1885–92 Occurrence Handle1:CAS:528:DC%2BD3MXjtVyhurs%3D Occurrence Handle11283119

    CAS  PubMed  Google Scholar 

  • ER Port LL Montgomery AS Heerdt PI Borgen (2001) ArticleTitlePatient reluctance toward tamoxifen use for breast cancer primary prevention Ann Surg Oncol 8 IssueID7 580–5 Occurrence Handle1:STN:280:DC%2BD3MvmtlKgtg%3D%3D Occurrence Handle11508619

    CAS  PubMed  Google Scholar 

  • D Ford DF Easton DT Bishop et al. (1994) ArticleTitleRisks of cancer in BRCA1 mutation carriers Lancet 343 IssueID8899 692–95 Occurrence Handle1:STN:280:ByuC1c%2FmtFM%3D

    CAS  Google Scholar 

  • D Ford DF Easton DT Bishop et al. (1994) ArticleTitleRisks of cancer in BRCA1 mutation carriers Lancet 343 692–95 Occurrence Handle1:STN:280:ByuC1c%2FmtFM%3D

    CAS  Google Scholar 

  • JL Hopper MC Southey GS Dite et al. (1999) ArticleTitlePopulation-based estimate of the average age-specific cumulative risk of breast cancer for a defined set of protein-truncating mutations in BRCA1 and BRCA2. Australian Breast Cancer Family Study Cancer Epidemiol Biomarkers Prev 8 IssueID9 741–7 Occurrence Handle1:CAS:528:DyaK1MXmsFGktL4%3D Occurrence Handle10498392

    CAS  PubMed  Google Scholar 

  • JP Struewing P Hartge S Wacholder et al. (1997) ArticleTitleThe risk of cancer associated with specific mutations of BRCA1 and BRCA2 among Ashkenazi Jews New Engl J Med 336 IssueID20 1401–08 Occurrence Handle10.1056/NEJM199705153362001 Occurrence Handle1:STN:280:ByiB2svgt1w%3D Occurrence Handle9145676

    Article  CAS  PubMed  Google Scholar 

  • LC Hartmann TA Sellers DJ Schaid et al. (2001) ArticleTitleEfficacy of bilateral prophylactic mastectomy in BRCA1 and BRCA2 gene mutation carriers J Natl Cancer Inst 93 IssueID21 1633–7 Occurrence Handle10.1093/jnci/93.22.1733 Occurrence Handle1:CAS:528:DC%2BD3MXptVegt7g%3D Occurrence Handle11698567

    Article  CAS  PubMed  Google Scholar 

  • TR Rebbeck AM Levin A Eisen et al. (1999) ArticleTitleBreast cancer risk after bilateral prophylactic oophorectomy in BRCA1 mutation carriers J Natl Cancer Inst 91 IssueID17 1475–9 Occurrence Handle10.1093/jnci/91.17.1475 Occurrence Handle1:STN:280:DyaK1MvgtVyisw%3D%3D Occurrence Handle10469748

    Article  CAS  PubMed  Google Scholar 

  • TR Rebbeck HT Lynch SL Neuhausen et al. (2002) ArticleTitleProphylactic oophorectomy in carriers of BRCA1 or BRCA2 mutations N Engl J Med 346 IssueID21 1616–22 Occurrence Handle10.1056/NEJMoa012158 Occurrence Handle12023993

    Article  PubMed  Google Scholar 

  • KA Metcalfe A Liede E Hoodfar et al. (2000) ArticleTitleAn evaluation of needs of female BRCA1 and BRCA2 carriers undergoing genetic counselling J Med Genet 37 866–74 Occurrence Handle10.1136/jmg.37.11.866 Occurrence Handle1:STN:280:DC%2BD3M%2FktFemtA%3D%3D Occurrence Handle11073541

    Article  CAS  PubMed  Google Scholar 

  • LN Lodder PG Frets RW Trijsburg et al. (2002) ArticleTitleOne 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 Res Treat 73 IssueID2 97–112 Occurrence Handle10.1023/A:1015269620265 Occurrence Handle1:CAS:528:DC%2BD38XksFehtrw%3D Occurrence Handle12088120

    Article  CAS  PubMed  Google Scholar 

  • C Lerman C Hughes RT Croyle et al. (2000) ArticleTitleProphylactic surgery decisions and surveillance practices one year following BRCA1/2 testing Prev Med 31 IssueID1 75–80 Occurrence Handle10.1006/pmed.2000.0684 Occurrence Handle1:STN:280:DC%2BD3cvit1GnsA%3D%3D Occurrence Handle10896846

    Article  CAS  PubMed  Google Scholar 

  • JR Botkin KR Smith RT Croyle et al. (2003) ArticleTitleGenetic testing for a BRCA1 mutation: Prophylactic surgery and screening behavior in women 2 years post testing Am J Med Genet 118A IssueID3 201–9 Occurrence Handle10.1002/ajmg.a.10102

    Article  Google Scholar 

  • EJ Meijers-Heijboer LC Verhoog CT Brekelmans et al. (2000) ArticleTitlePresymptomatic DNA testing and prophylactic surgery in families with a BRCA1 or BRCA2 mutation Lancet 355 IssueID9220 2015–20 Occurrence Handle10.1016/S0140-6736(00)02347-3 Occurrence Handle1:CAS:528:DC%2BD3cXksl2lt7s%3D Occurrence Handle10885351

    Article  CAS  PubMed  Google Scholar 

  • A Fry R Rush C Busby-Earle A Cull (2001) ArticleTitleDeciding about prophylactic oophorectomy: what is important to women at increased risk of ovarian cancer? Prev Med 33 IssueID6 578–85 Occurrence Handle10.1006/pmed.2001.0924 Occurrence Handle1:STN:280:DC%2BD3MnntFOltg%3D%3D Occurrence Handle11716653

    Article  CAS  PubMed  Google Scholar 

  • AJ Swerdlow ME Jones (2005) ArticleTitleTamoxifen treatment for breast cancer and risk of endometrial cancer: a case-control study J Natl Cancer Inst 97 IssueID5 375–84 Occurrence Handle1:CAS:528:DC%2BD2MXitV2jsb8%3D Occurrence Handle15741574

    CAS  PubMed  Google Scholar 

  • Peshkin BN, Isaacs C Finch C et al. Tamoxifen as chemoprevention in BRCA1/2 Carriers with breast cancer: A pilot survey of physicians. J Clin Oncol 2003

  • U Veronesi P Maisonneuve A Costa et al. (1998) ArticleTitlePrevention of breast cancer with tamoxifen: preliminary findings from the Italian randomised trial among hysterectomised women. Italian Tamoxifen Prevention Study Lancet 352 IssueID9122 93–7 Occurrence Handle1:CAS:528:DyaK1cXkvVehtrc%3D Occurrence Handle9672273

    CAS  PubMed  Google Scholar 

  • T Powles R Eeles S Ashley et al. (1998) ArticleTitleInterim analysis of the incidence of breast cancer in the Royal Marsden Hospital tamoxifen randomised chemoprevention trial Lancet 352 IssueID9122 98–101 Occurrence Handle1:CAS:528:DyaK1cXkvVeht7w%3D Occurrence Handle9672274

    CAS  PubMed  Google Scholar 

  • AL Franks KK Steinberg (1999) ArticleTitleEncouraging news from the SERM frontier. Selective estrogen receptor modulator JAMA 281 IssueID23 2243–4 Occurrence Handle10.1001/jama.281.23.2243 Occurrence Handle1:STN:280:DyaK1MzgtlSksA%3D%3D Occurrence Handle10376579

    Article  CAS  PubMed  Google Scholar 

  • SR Cummings S Eckert KA Krueger et al. (1999) ArticleTitleThe effect of raloxifene on risk of breast cancer in postmenopausal women: results from the MORE randomized trial. Multiple Outcomes of Raloxifene Evaluation JAMA 281 IssueID23 2189–97 Occurrence Handle10.1001/jama.281.23.2189 Occurrence Handle1:CAS:528:DyaK1MXktFGitL0%3D Occurrence Handle10376571

    Article  CAS  PubMed  Google Scholar 

  • LM Schwartz S Woloshin (2002) ArticleTitleNews media coverage of screening mammography for women in their 40s and tamoxifen for primary prevention of breast cancer JAMA 287 IssueID23 3136–42 Occurrence Handle10.1001/jama.287.23.3136 Occurrence Handle12069679

    Article  PubMed  Google Scholar 

  • R Day PA Ganz JP Costantino et al. (1999) ArticleTitleHealth-related quality of life and tamoxifen in breast cancer prevention: a report from the National Surgical Adjuvant Breast and Bowel Project P-1 Study J Clin Oncol 17 IssueID9 2659–69 Occurrence Handle1:CAS:528:DyaK1MXmtlWrurY%3D Occurrence Handle10561339

    CAS  PubMed  Google Scholar 

  • R Day PA Ganz JP Costantino (2001) ArticleTitleTamoxifen and depression: more evidence from the National Surgical Adjuvant Breast and Bowel Project’s Breast Cancer Prevention (P-1) Randomized Study J Natl Cancer Inst 93 IssueID21 1615–23

    Google Scholar 

  • MS Cyrus-David SS Strom (2001) ArticleTitleChemoprevention of breast cancer with selective estrogen receptor modulators: Views from broadly diverse focus groups of women with elevated risk for breast cancer Psychooncology 10 IssueID6 521–33 Occurrence Handle1:STN:280:DC%2BD3Mnps1GjtQ%3D%3D Occurrence Handle11747064

    CAS  PubMed  Google Scholar 

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Authors and Affiliations

  1. Faculty of Nursing, University of Toronto, 50 St. George St, Toronto, Ontario, Canada

    Kelly A. Metcalfe

  2. The Centre for Research in Women’s Health, Sunnybrook and Women’s Health Sciences Centre, Toronto, Ontario, Canada

    Kelly A. Metcalfe, Jennifer Seidel, Danielle Hanna & Steven Narod

  3. Department of Preventive Medicine, Creighton University, Omaha, Nebraska, USA

    Carrie Snyder & Henry T. Lynch

Authors
  1. Kelly A. Metcalfe
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  2. Carrie Snyder
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  3. Jennifer Seidel
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  4. Danielle Hanna
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  5. Henry T. Lynch
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  6. Steven Narod
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Correspondence to Kelly A. Metcalfe.

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Metcalfe, K.A., Snyder, C., Seidel, J. et al. The use of preventive measures among healthy women who carry a BRCA1 or BRCA2 mutation. Familial Cancer 4, 97–103 (2005). https://doi.org/10.1007/s10689-005-4215-3

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  • DOI: https://doi.org/10.1007/s10689-005-4215-3

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