Genetic counselling and the intention to undergo prophylactic mastectomy: effects of a breast cancer risk assessment

Dijk, S. van; Otten, W.; Zoeteweij, Moniek; Timmermans, Daniëlle R.M.; Asperen, Christi J. van; Breuning, Martijn H.; Tollenaar, Rob A.E.M.; Kievit, J.

doi:10.1038/sj.bjc.6600988

Cited by 66 publications

(53 citation statements)

References 24 publications

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“…To our knowledge, this is the first study to describe actual uptake in women who have undertaken BRRM on risk alone. Although previous studies have reported outcomes of surgery in these women (2), no study has shown the effect of counseled risk; indeed, one study of 254 women showed that counseled risk did not influence intentions to undergo BRRM (15). We have shown a clear effect of counseled risk on actual uptake with this increasing from 1.8% at the lowest level of risk acceptable for preventive surgery (25-32%) to 6.4% of those at 40% to 45% risk.…”

Section: Discussionmentioning

confidence: 60%

Uptake of Risk-Reducing Surgery in Unaffected Women at High Risk of Breast and Ovarian Cancer Is Risk, Age, and Time Dependent

Evans

Lalloo

Ashcroft

et al. 2009

Cancer Epidemiology, Biomarkers &Amp; Prevention

132

107

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Purpose: The uptake of risk-reducing surgery in women at increased risk of breast and ovarian cancer is highly variable between countries and centers within countries. We have investigated the rate, timing, and age of uptake of surgery in the northwest of England to report the results after up to 7 years in a Regional Genetics center. Methods: Uptake was documented in 211 known unaffected BRCA1/2 mutation carriers from 509 families and in 3,515 women at >25% lifetime risk of breast cancer without known mutations. Results: Of the 211 mutation carriers, 40% opted for bilateral risk-reducing mastectomy (BRRM) and 45% underwent bilateral risk-reducing salpingo-oophorectomy (BRRSPO). Uptake of BRRM was significantly related to lifetime risk and age but continued over several years. In women not known to carry a BRCA mutation, 6.4% of women at 40% to 45% lifetime risk, 2.5% of women at 33% to 39% lifetime risk, and 1.8% of women at 25% to 32% lifetime risk underwent BRRM (P < 0.005). BRRSPO uptake was greater in BRCA1 (52%) than BRCA2 (28%) carriers but in both groups tended to occur within the first 2 years after gene test (except in the youngest age group) and in women between the ages of 35 and 45. Conclusion: To truly assess the uptake of risk-reducing surgery, longer-term follow-up is necessary particularly in younger women who are likely to delay BRRSPO. Careful risk counseling does seem to influence women's decisions for surgery, although the effect is not immediate. (Cancer Epidemiol Biomarkers Prev 2009;18(8): 2318-24)

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Section: Discussionmentioning

confidence: 60%

Uptake of Risk-Reducing Surgery in Unaffected Women at High Risk of Breast and Ovarian Cancer Is Risk, Age, and Time Dependent

Evans

Lalloo

Ashcroft

et al. 2009

Cancer Epidemiology, Biomarkers &Amp; Prevention

132

107

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“…Other studies confirm that counsellees opt for prophylactic surgery after UV disclosure [20,52,53] and that surgery decisions after genetic counselling are not determined only by factual information [54]. Studies in other fields also suggest that people react to risk information using two conceptually different processes: a more cognitive-deliberational system and a more intuitive-emotional system [55][56][57].…”

Section: Medical Consequencesmentioning

confidence: 63%

The counsellees' view of an unclassified variant in BRCA1/2: recall, interpretation, and impact on life

et al. 2008

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Objective: Unclassified variants (UVs, variants of uncertain clinical significance) are found in 13% of all BRCA1/2 mutation analyses. Little is known about the counsellees' recall and interpretation of a UV, and its psychosocial/medical impact.Method: Retrospective semi-structured interviews with open questions and five-point Likert scales were carried out in 24 counsellees who received a UV result 3 years before (sd ¼ 1:9).Results: Sixty-seven percent (16/24) recalled the UV result as a non-informative DNA result; 29% recalled a pathogenic result. However, 79% of all counsellees interpreted the UV result as a genetic predisposition for cancer. Variations in recall and interpretation were unexplained by demographics, cancer history of themselves and relatives, and communication aspects of UV disclosure. Sixty-seven percent perceived genetic counselling as completed, whereas 71% expected to receive new DNA information. Although most counsellees reported that UV disclosure had changed their lives in general little, one in three counsellees reported large changes in specific life domains, especially in surveillance behavior and medical decisions. Ten out of 19 participants who interpreted the UV as pathogenic had undergone preventive surgery against none of the 5 counsellees who interpreted the UV as non-informative.Conclusion: Counsellors and researchers need to address discrepancies between the counsellees' factual recall and their subjective interpretation of non-informative BRCA1/2-test results.

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“…In other research, a woman's perceived cancer risk has been well established as a factor influencing the uptake of, preference for, or intention to seek RRM and RRO (Antill et al, 2006;Claes et al, 2005;Fang et al, 2003;Fry et al, 2001;Hallowell, 1998Hallowell, , 2000Hallowell et al, 2001;Meiser et al, 1999;Stefanek et al, 1999;Stefanek, Helzlsouer, Wilcox, & Houn, 1995;Tiller et al, 2005;Unic et al, 2000;van Dijk et al, 2003;van Dijk, van Roosmalen, Otten, & Stalmeier, 2008).…”

Section: Discussionmentioning

confidence: 99%

Preserving the Self: The Process of Decision Making About Hereditary Breast Cancer and Ovarian Cancer Risk Reduction

et al. 2010

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Women who carry BRCA1 or BRCA2 (BRCA1/2) gene mutations have up to an 88% lifetime risk of breast cancer and up to a 65% lifetime risk of ovarian cancer. Strategies to address these risks include cancer screening and risk-reducing surgery (i.e., mastectomy and salpingo-oophorectomy). We conducted a grounded theory study with 22 BRCA1/2 mutation-carrier women to understand how women make decisions about these risk-reducing strategies. Preserving the self was the overarching decision-making process evident in the participants' descriptions. This process was shaped by contextual conditions including the characteristics of health services, the nature of hereditary breast and ovarian cancer risk-reduction decisions, gendered roles, and the women's perceived proximity to cancer. The women engaged in five decision-making styles, and these were characterized by the use of specific decision-making approaches. These findings provide theoretical insights that could inform the provision of decisional support to BRCA1/2 carriers. Keywordscancer, breast; cancer, genetics; cancer, ovarian; cancer, psychosocial aspects; cancer, screening and prevention; decision making; grounded theory; surgery A woman who receives a positive test for a genetic mutation predisposing her to breast and ovarian cancer is presented with a myriad of risks and decisions. Those with a BRCA1 or BRCA2 (BRCA1/2) mutation have a lifetime risk of 45% to 88% for breast cancer and 11% to 65% for ovarian cancer (Antoniou et al., 2003;Evans et al., 2008;Ford et al., 1998). Hereditary breast and ovarian cancer (HBOC) risk-reducing (RR) options include early detection procedures such as breast self-examination, clinical breast examination, mammography, and magnetic resonance imaging. No proven effective screening exists for ovarian cancer. The most effective breast cancer prevention strategy is risk-reducing mastectomy (RRM), generally provided with the option of reconstructive surgery. Similarly, ovarian cancer is best prevented by risk-reducing salpingo-oophorectomy (RRO). Although Reprints and permission: sagepub.com it is recognized that making decisions about these RR options is complex and holds significant consequences, little is known about women's decision-making processes. Accordingly, our aim in this study was to develop a theory about women's experiences of making decisions about RR strategies following the disclosure of BRCA1/2 genetic test results. Understanding women's decision-making processes is an essential step toward developing clinical tools to support decision making.

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Genetic counselling and the intention to undergo prophylactic mastectomy: effects of a breast cancer risk assessment

Cited by 66 publications

References 24 publications

Uptake of Risk-Reducing Surgery in Unaffected Women at High Risk of Breast and Ovarian Cancer Is Risk, Age, and Time Dependent

Uptake of Risk-Reducing Surgery in Unaffected Women at High Risk of Breast and Ovarian Cancer Is Risk, Age, and Time Dependent

The counsellees' view of an unclassified variant in BRCA1/2: recall, interpretation, and impact on life

Preserving the Self: The Process of Decision Making About Hereditary Breast Cancer and Ovarian Cancer Risk Reduction

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