"I'm going to die of something anyway": Women's perceptions of tamoxifen for breast cancer risk reduction

Center for Health Services Research in Primary Care, University of California, Davis, Sacramento, CA 95817, USA.
Ethnicity & disease (Impact Factor: 1). 02/2005; 15(3):365-72.
Source: PubMed


To investigate how ethnically diverse women who are eligible for tamoxifen prophylaxis because of their breast cancer risk decide about tamoxifen use for risk reduction.
A qualitative intervention pilot study used focus groups to discuss the use of tamoxifen and to identify the concerns of ethnically diverse women about the preventive use of this drug. Focus group discussion involved exploration of the benefits and risks of tamoxifen prophylaxis, presentation of a standardized educational intervention, and focused discussion on attitudes about tamoxifen for prevention. Prominent themes emerged from iterative review of focus group transcripts.
Fear of breast cancer was not prominent, and participants were less inclined to take tamoxifen as preventive therapy after receiving information. Decisions were based on participants' understandings of competing risks and benefits. Specifically, participants expressed limited willingness to take medication with potential serious side effects for risk reduction and were unwilling to discontinue hormone replacement therapy. Uneasiness about the reliability of scientific studies surfaced in the focus groups comprised of White and Latina women. African-American women described faith as important to prevention.
Women were wary of taking a drug for a disease they might not develop. Women felt they had options other than tamoxifen to reduce their risk of breast cancer, including early detection, diet, faith, and complementary and alternative therapies.

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    • "Third, while raloxifene was originally designed to treat osteoporosis, tamoxifen was designed to prevent recurrence of breast cancer and, therefore, may have negative connotations [13]. Fourth, fear of potential side effects may inhibit positive attitudes toward taking chemoprevention drugs [5], including a perception that the potential risks (that is, increased risks of endometrial cancer, pulmonary embolism, stroke, deep vein thrombosis, cataracts, hormonal symptoms and sexual problems) outweigh the potential benefits of the drugs (that is, reduced risks of breast cancer and osteoporosis) [4,5,7,10,12,14]. Finally, many people, particularly when healthy, are opposed to taking preventive drugs on a regular basis [5,12]. "
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    ABSTRACT: Tamoxifen and raloxifene are chemopreventive drugs that can reduce women's relative risk of primary breast cancer by 50%; however, most women eligible for these drugs have chosen not to take them. The reasons for low uptake may be related to women's knowledge or attitudes towards the drugs. We aimed to examine the impact of an online breast cancer chemoprevention decision aid (DA) on informed intentions and decisions of women at high risk of breast cancer. We conducted a Randomized Clinical Trial, assessing the effect of a decision aid about breast cancer chemoprevention on informed choices about chemoprevention. Women (n=585) aged 46 to 74 years old completed online baseline, post-test, and 3-month follow-up questionnaires. Participants were randomly assigned to either an intervention group, a standard control group that answered questions about chemoprevention at baseline, or a 3-month control group that did not answer questions about chemoprevention at baseline. The main outcome measures were whether women's intentions and decisions regarding chemoprevention drugs were informed, and whether women who viewed the DA were more likely to make informed decisions than women who did not view the DA, using a dichotomous composite variable "informed choice" [yes/no] to classify informed decisions as those reflecting sufficient knowledge and concordance between a woman's decision and relevant attitudes. Analyses showed that more intervention than standard control participants (52.7% vs. 5.9%) made informed decisions at post-test, P<0.001. At the 3-month follow-up, differences in rates of informed choice between intervention (16.9%) and both control groups (11.8% and 8.0%) were statistically non-significant, P=0.067. The DA increased informed decision making about breast cancer chemoprevention, although the impact on knowledge diminished over time. This study was not designed to determine how much knowledge decision makers must retain over time. Examining informed decisions increases understanding of the impact of DAs. A standard for defining and measuring sufficient knowledge for informed decisions is needed. Trial registration:; number NCT00967824.
    Breast cancer research: BCR 09/2013; 15(5):R74. DOI:10.1186/bcr3468 · 5.49 Impact Factor
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    • "Adverse effects in the NSABP-P1 trial included endometrial cancer in w1 of 91 women and veno-thrombotic events (deep venous thrombosis and pulmonary embolism) in w1 per 217. Analyzed in this way, the benefit to risk equation for the majority of women is not sufficient for them to choose tamoxifen for prevention (Paterniti et al. 2005). Three studies indicated that only 5, 18, and 51% of eligible women choose the tamoxifen prevention strategy (Port et al. 2001, Bober et al. 2004, Melnikow et al. 2005). "
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    ABSTRACT: The majority of candidates for breast cancer prevention have not accepted tamoxifen because of the perception of an unfavorable risk/benefit ratio and the acceptance of raloxifene remains to be determined. One means of improving this ratio is to identify women at very high risk of breast cancer. Family history, age, atypia in a benign biopsy, and reproductive factors are the main parameters currently used to determine risk. The most powerful risk factor, mammographic density, is not presently employed routinely. Other potentially important factors are plasma estrogen and androgen levels, bone density, weight gain, age of menopause, and fracture history, which are also not currently used in a comprehensive risk prediction model because of lack of prospective validation. The Breast Cancer Prevention Collaborative Group (BCPCG) met to critically examine and prioritize risk factors that might be selected for further testing by multivariate analysis using existing clinical material. The BCPCG reached a consensus that quantitative breast density, state of the art plasma estrogen and androgen measurements, history of fracture and height loss, BMI, and waist-hip ratio had sufficient priority for further testing. As a practical approach, these parameters could be added to the existing Tyrer-Cuzick model which encompasses factors included in both the Claus and Gail models. The BCPCG analyzed potentially available clinical material from previous prospective studies and determined that a large case/control study to evaluate these new factors might be feasible at this time.
    Endocrine Related Cancer 07/2007; 14(2):169-87. DOI:10.1677/ERC-06-0045 · 4.81 Impact Factor
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    ABSTRACT: The impact of predictive genetic testing on cancer care can be measured by the increased demand for and utilization of genetic services as well as in the progress made in reducing cancer risks in known mutation carriers. Nonetheless, differential access to and utilization of genetic counseling and cancer predisposition testing among underserved racial and ethnic minorities compared with the white population has led to growing health care disparities in clinical cancer genetics that are only beginning to be addressed. Furthermore, deficiencies in the utility of genetic testing in underserved populations as a result of limited testing experience and in the effectiveness of risk-reducing interventions compound access and knowledge-base disparities. The recent literature on racial/ethnic health care disparities is briefly reviewed, and is followed by a discussion of the current limitations of risk assessment and genetic testing outside of white populations. The importance of expanded testing in underserved populations is emphasized.
    Journal of Clinical Oncology 06/2006; 24(14):2197-203. DOI:10.1200/JCO.2006.05.5889 · 18.43 Impact Factor
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