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Breast Cancer Knowledge and Decisions Made for Contralateral Prophylactic Mastectomy

A Survey of Surgeons and Women in the General Population

Hooper, Rachel C., M.D.; Hsu, Jessica, M.D., Ph.D.; Duncan, Anthony, B.A.; Bensenhaver, Jessica M., M.D.; Newman, Lisa A., M.D., M.P.H.; Kidwell, Kelly M., Ph.D.; Chung, Kevin C., M.D., M.S.; Momoh, Adeyiza O., M.D.

Plastic and Reconstructive Surgery: May 2019 - Volume 143 - Issue 5 - p 936e–945e
doi: 10.1097/PRS.0000000000005523
Breast: Original Articles
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Background: Decisions made to undergo contralateral prophylactic mastectomy, in women at low risk for bilateral disease, are often attributed to a lack of knowledge. This study examines the role knowledge plays in determining surgical treatment for unilateral breast cancer made by laywomen and surgeons for themselves or loved ones.

Methods: The study cohort had three groups: (1) laywomen in the general population, (2) breast surgeons, and (3) plastic surgeons. Laywomen were recruited using Amazon Mechanical Turk Crowd Sourcing. Breast and plastic surgeons from nine states were sent electronic surveys. Demographic and contralateral prophylactic mastectomy–specific data on decisions and knowledge were collected and analyzed.

Results: Surveys from 1333 laywomen, 198 plastic surgeons, and 142 breast surgeons were analyzed. A significantly greater proportion of laywomen in the general population favored contralateral prophylactic mastectomy (67 percent) relative to plastic (50 percent) and breast surgeons (26 percent) (p < 0.0001). Breast surgeons who chose contralateral prophylactic mastectomy were younger (p = 0.044) and female (0.012). On assessment of knowledge, 78 percent of laywomen had a low level of breast cancer knowledge. Laywomen with higher levels of breast cancer knowledge had lower odds of choosing contralateral prophylactic mastectomy (OR, 0.37; 95 percent CI, 0.28 to 0.49).

Conclusions: Fewer women are likely to make decisions in favor of contralateral prophylactic mastectomy with better breast cancer–specific education. A knowledge gap likely explains the lower rates with which surgeons choose contralateral prophylactic mastectomy for themselves or loved ones; however, some surgeons who were predominantly young and female favor contralateral prophylactic mastectomy. Improving patient education on surgical options for breast cancer treatment is critical, with well-informed decisions as the goal.

This and Related “Classic” Articles Appear on Prsjournal.com for Journal Club Discussions.

Ann Arbor and Detroit, Mich.

From the Section of Plastic Surgery, Department of Surgery, University of Michigan Health System; the Department of Surgery, Henry Ford Health System; and the Department of Biostatistics, University of Michigan School of Public Health.

Received for publication December 29, 2017; accepted September 14, 2018.

Presented in part at the 2018 Annual Meeting of the American Society for Reconstructive Microsurgery, in Phoenix, Arizona, January 13 through 16, 2018.

Disclosure:None of the authors has a financial interest to declare in relation to the content of this article.

Supplemental digital content is available for this article. Direct URL citations appear in the text; simply type the URL address into any Web browser to access this content. Clickable links to the material are provided in the HTML text of this article on the Journal’s website (www.PRSJournal.com).

Adeyiza O. Momoh, M.D., Section of Plastic Surgery, University of Michigan Health System, 2130 Taubman Center, SPC 5340, 1500 East Medical Center Drive, Ann Arbor, Mich. 48109-5340, amomoh@med.umich.edu, Twitter: @RachelHooper1MD

Newly diagnosed breast cancer patients, in addition to coping with a cancer diagnosis, also need to understand and navigate the complexities of the various surgical options available to them. Surgical treatment of early-stage breast cancer includes lumpectomy and radiation therapy, unilateral mastectomy, and unilateral mastectomy with contralateral prophylactic mastectomy. Although contralateral prophylactic mastectomy has been demonstrated to reduce the risk of cancer in the contralateral breast by approximately 95 percent, there have been no prospective randomized studies demonstrating a survival benefit.1–6

Contralateral prophylactic mastectomy is generally accepted and even recommended in patients deemed to be at high risk for contralateral breast cancer. However, the impact of contralateral prophylactic mastectomy on survival for average-risk women is less clear, with some studies demonstrating a small survival benefit among women younger than 49 years and in those with estrogen receptor–negative tumors.7–9 In contrast, a large Cochrane Review reviewing over 39 studies concluded that there was no survival benefit of contralateral prophylactic mastectomy.10 Despite the proven efficacy and safety of breast conservation therapy with lumpectomy and radiation therapy or unilateral mastectomy, the past few decades have seen the pendulum swing toward more aggressive surgical treatment for all stages of breast cancer.1–6,11–13 This is evidenced by the increased rate of contralateral prophylactic mastectomy among women with early-stage breast cancer—estimated to be as high as 25 percent of newly diagnosed patients with breast cancer.1–6,10

Lack of knowledge or misunderstanding of the breast cancer disease process, surgical options, and survival benefits are commonly cited reasons for the increasing trend toward contralateral prophylactic mastectomy among patients.1–6,11–13 This line of thinking suggests that women who are better educated on the facts regarding breast cancer and the risks and benefits of the various surgical options would not choose contralateral prophylactic mastectomy in the face of early-stage breast cancer, as contralateral prophylactic mastectomy provides little to no survival benefit.1–6 To understand the impact that knowledge might have on decisions made for contralateral prophylactic mastectomy, we have designed a study to evaluate the personal choices made by laywomen, breast surgeons, and reconstructive surgeons, for themselves or a loved one when faced with a hypothetical diagnosis of early-stage unilateral breast cancer.

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PATIENTS AND METHODS

Study Population

We conducted a cross-sectional survey using three questionnaires created specifically for each group—laywomen, breast surgeons, and reconstructive surgeons. Laywomen, aged 25 to 65 years, were registered workers with Amazon Mechanical Turk, which is a crowdsourcing platform providing quick, efficient, and reliable workers who can select tasks to complete for specified fees.14–16 With this platform, investigators can quickly gain public insight on a specific topic of interest. The United States is the country of origin for the majority of Amazon Mechanical Turk Workers.14–16 Breast surgeons from the American Society of Breast Surgeons and plastic surgeons from the American Society of Plastic Surgeons practicing in New York, Texas, California, Michigan, Pennsylvania, Arizona, Illinois, Washington, and Florida were identified and sent an electronic survey for completion. The study was limited to these states, as they represent the major regions of the United States and were some of the largest states with a high number of practitioners.

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Data Collection

Crowdsourcing is a research method that leverages the opinion of a large group of workers in a short amount of time, allowing investigators to gain insight on a specific topic. One such crowdsourcing platform, Amazon Mechanical Turk, allows researchers and businesses to request human assistance to complete certain tasks—in this case, an electronic survey.14–16 Users have the opportunity to complete tasks that most meet their interests and convenience. For the current study, laywomen were compensated $0.50 per survey, and payment was contingent on completion of the survey. Using a modified Dillman survey technique, surgeons were e-mailed an introductory letter with a link to complete the survey by means of Qualtrics software (Qualtrics, Provo, Utah), with a reminder sent to nonresponders 1 month after the initial request.17 No compensation was provided to surgeons for completed surveys. Surgeons who replied and were retired or over the age limit were excluded. Surveys where respondents started the survey but did not answer any questions were also excluded.

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Questionnaires

In addition to gathering demographic data on variables such as age, race, employment, and insurance status, we queried laywomen about breast cancer knowledge. Breast cancer knowledge questions were adapted from a previously published decision aide tool by Yao et al. that included questions on breast cancer knowledge, survival, treatment, and recurrence.18 Laywomen were asked about choice of contralateral prophylactic mastectomy for themselves, a sister, or significant other receiving a hypothetical diagnosis of early-stage breast cancer. Finally, we focused on factors that influence decisions made for or against contralateral prophylactic mastectomy. Similar to the study by Yao et al., the survey to laywomen was written in language that we expect individuals in the general population to understand.

Breast surgeon–specific surveys included demographic questions and practice-specific questions ranging from overall patient and procedure volume, to contralateral prophylactic mastectomy volume, to provision of care through a tumor board. Reconstructive surgeons were asked similar questions, with the mastectomy questions substituted for reconstruction-specific questions. Both groups of surgeons were asked about the choice for contralateral prophylactic mastectomy for themselves, a sister, or spouse if diagnosed with early-stage breast cancer and influencing factors on contralateral prophylactic mastectomy choice and whether or not they would recommend reconstruction. This study was reviewed and approved as institutional review board exempt by the University of Michigan Medical School Institutional Review Board (HUM00126731).

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Statistical Analysis

Sociodemographic, practice characteristics, contralateral prophylactic mastectomy and reconstructive preferences, and influencers were extracted from Qualtrics, coded, and tabulated. The choice of contralateral prophylactic mastectomy for surgeon groups and laywomen were compared using the chi-square test. The association between sociodemographic characteristics and choice of contralateral prophylactic mastectomy was compared within each surgeon group using chi-square or Fisher’s exact test. SAS v9.4A (SAS Institute, Inc., Cary, N.C.) was used for all analyses; the significance level was set at a two-sided alpha = 0.05. A logistic regression analysis was performed to evaluate associations between laywomen sociodemographic and knowledge variables and the choice of contralateral prophylactic mastectomy. In addition, we performed a multivariable analysis of preference for contralateral prophylactic mastectomy among laywomen, breast surgeons, and reconstructive surgeons.

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RESULTS

One thousand three hundred thirty-three women completed the survey by means of Amazon Mechanical Turk. Surveys were sent to 4512 surgeons, with 362 responses received, for a response rate of 8 percent among surgeons. Duplicated surgeon surveys or those where the survey was started but none of the questions were answered were excluded (n = 27), leaving responses from 198 reconstructive surgeons and 142 breast surgeons that were included in the analysis. (See Figure, Supplemental Digital Content 1, which shows the study flow diagram, http://links.lww.com/PRS/D395.)

The study cohort demographic data are listed in Table 1. Breast surgeons were predominantly female (68 percent), in contrast to reconstructive surgeons, who were predominantly male (75 percent). Most of the surgeons were older than 40 years, whereas only 32 percent laywomen respondents were older than 40 years. Women in all three groups were predominantly Caucasian. The majority of surgeons were married and largely in private practice. Among breast and plastic surgeon respondents, within the past 12 months, 64 percent and 25 percent reported that more than 50 percent of their practice was spent caring for breast cancer patients, respectively. The majority of laywomen respondents had a college education and were insured.

Table 1

Table 1

Sixty-eight percent of laywomen responded they would opt for contralateral prophylactic mastectomy if faced with a diagnosis of early-stage breast cancer, in comparison with 26 percent of breast surgeons and 50 percent of reconstructive surgeons (Table 2). The majority of laywomen surveyed reported that they would opt for reconstruction (83 percent), with similar proportions choosing implant-based or autologous reconstruction (44 and 39 percent, respectively). Most breast (92 percent) and reconstructive (99 percent) surgeons reported that they would choose reconstruction for themselves or a loved one (Table 2). The surgeon cohorts were predominantly open to either implant or autologous reconstruction, with 55 percent of breast surgeons and 42 percent of reconstructive surgeons responding as such.

Table 2

Table 2

Table 3 lists demographics of respondents who were in favor of contralateral prophylactic mastectomy. Contralateral prophylactic mastectomy was favored by a significantly greater proportion of younger (p = 0.009) and white laywomen (p < 0.0001). Among laywomen in favor of contralateral prophylactic mastectomy, there were no differences in level of education, marital status, and insurance status. A significantly greater proportion of female breast surgeons were in favor of contralateral prophylactic mastectomy for themselves or a loved one compared with their male counterparts (32 percent versus 7 percent; p = 0.012). A similar trend was observed among female reconstructive surgeons, with 62 percent opting for contralateral prophylactic mastectomy compared with 45 percent of male reconstructive surgeons, although this did not reach statistical significance (p = 0.06). Breast surgeons who were aged 40 years and younger chose contralateral prophylactic mastectomy more often than surgeons older than 40 years (p = 0.044). Among surgeons, race, marital status, and practice type were not associated with a specific trend toward contralateral prophylactic mastectomy.

Table 3

Table 3

Laywomen were asked standard breast cancer–related questions to assess their baseline knowledge. Seventy-four percent of women thought they knew breast cancer moderately to extremely well. The correct responses to individual questions in a five-question breast cancer knowledge questionnaire ranged from 30 to 75 percent. Knowledge about the development of breast cancer in the contralateral breast following unilateral mastectomy had the lowest correct response rate at 30 percent. Twenty-two percent of laywomen had high-level (four or five questions correct) breast cancer knowledge and 78 percent laywomen were categorized as low-level (zero to three correct) breast cancer knowledge. (See Table, Supplemental Digital Content 2, which shows breast cancer knowledge among laywomen, http://links.lww.com/PRS/D396.) Laywomen with high breast cancer knowledge were less in favor of contralateral prophylactic mastectomy than women with low breast cancer knowledge (50 percent versus 73 percent; p < 0.0001).

Table 4 presents a multivariable logistic regression of those in favor of contralateral prophylactic mastectomy. Breast surgeons had a lower odds of choosing contralateral prophylactic mastectomy relative to laywomen and reconstructive surgeons, and this difference was statistically significant (OR, 0.273; 95 percent CI, 0.17 to 0.43; p < 0.0001). Laywomen who were younger (50 years and younger) had significantly greater odds of choosing contralateral prophylactic mastectomy relative to patients older than 50 years, as follows: aged 18 to 30 years, OR, 2.62 (95 percent CI, 1.79 to 3.82); aged 31 to 40 years, OR, 2.10 (95 percent CI, 1.51 to 2.92); and aged 41 to 50 years, OR, 1.53 (95 percent CI, 1.08 to 2.17). Women of other races including blacks (OR, 0.66; 95 percent CI, 0.45 to 0.96), Asian/Islander (OR, 0.31; 95 percent CI, 0.22 to 0.45), and other races (OR, 0.43; 95 percent CI, 0.24 to 0.76) had lower odds of choosing contralateral prophylactic mastectomy relative to white women. Women with higher levels of breast cancer knowledge had lower odds of deciding for contralateral prophylactic mastectomy than those with lower levels of knowledge (OR, 0.37; 95 percent CI, 0.28 to 0.49).

Table 4

Table 4

In evaluating factors that influence decisions made in favor of contralateral prophylactic mastectomy among laywomen, the desire to lower the chance of getting breast cancer in the other breast, improve survival, prevent cancer spread, and enhance peace of mind were of the greatest importance (Fig. 1). Reconstructive surgeons responded “a lot” or “quite a bit” when considering fear of recurrence, fear of occult breast cancer, symmetry, and freedom from surveillance (Fig. 1). Breast surgeons, in contrast, did not have similar concerns and rated fear of recurrence, fear of occult breast cancer, symmetry, and freedom from surveillance with scores indicating lower levels of importance (Fig. 1). Overall, with the exception of the influence of the need for chemotherapy/radiation therapy, there was a statistically significant difference in the distribution of assigned importance placed by reconstructive and breast surgeons for all influencing factors assessed in relation to decisions made for contralateral prophylactic mastectomy.

Fig. 1

Fig. 1

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DISCUSSION

Contralateral prophylactic mastectomy in women at low risk for future breast cancer has gained significant attention and raised some concern within the oncologic and surgical communities, leading to the recent creation of contralateral prophylactic mastectomy consensus statements from multiple societies, including the American Society of Breast Surgeons. The American Society of Breast Surgeons consensus statement outlines circumstances for which contralateral prophylactic mastectomy should be considered, including (1) documented BRCA1/2 carrier, (2) strong family history of breast cancer, and (3) history of mantle cell irradiation before age 30 years.1 In addition, the statement provides leeway for clinical judgment in situations where contralateral prophylactic mastectomy “can” and “may” be considered, including (1) to limit contralateral breast surveillance, (2) improve breast reconstruction symmetry, and (3) manage risk aversion or extreme anxiety.1 Given this current state, we sought to assess potential differences in decisions made for contralateral prophylactic mastectomy among surgeons and laywomen when faced with a hypothetical early-stage breast cancer diagnosis, with surgeons expected to have greater knowledge about breast cancer. We found that surgeon age and sex play a role, with younger and female breast surgeons more in favor of contralateral prophylactic mastectomy. This finding goes along with previous findings that demonstrated a significantly higher contralateral prophylactic mastectomy rate among patients of female oncology surgeons younger than 50 years (47 percent) compared with male oncology surgeons (23 percent), even when controlling for male age.19 In addition to young age, white race among laywomen was associated with a choice for contralateral prophylactic mastectomy, also consistent with other studies in the literature that have demonstrated higher rates of contralateral prophylactic mastectomy in white women with early-stage breast cancer.12,19,20

On assessment of knowledge, laywomen with a high level of breast cancer knowledge had significantly lower odds of choosing contralateral prophylactic mastectomy compared with women with lower levels of knowledge (OR, 0.37; 95 percent CI, 0.28 to 0.49). This goes along with findings from a recent study based on Surveillance, Epidemiology, and End Results data of women in Los Angeles and Georgia treated for early-stage breast cancer.20 With a 17 percent contralateral prophylactic mastectomy rate in the study population, only 38 percent of women who considered contralateral prophylactic mastectomy knew that contralateral prophylactic mastectomy does not improve survival for all women with breast cancer.20 It accordingly makes sense that the specific level of breast cancer knowledge is likely influential in decisions made for contralateral prophylactic mastectomy; thus, decision aids could play a major role in delivery and processing of this information. In a comparison of breast cancer patient knowledge among women who received an in-visit decision aid versus usual care treatment discussion, Yao et al. determined that the decision aid group had a higher percentage of women with high-level knowledge of breast cancer as determined by a postvisit questionnaire.18 Tucholka et al. studied the most effective means of educating women on breast cancer treatment and survival comparing an electronic decision aid with providing URLs for select standard cancer websites, and determined that those receiving the electronic decision aid were more knowledgeable about survival, likelihood of death, and specific procedural risks, allowing them to make a more informed decision.21 In addition to content, how best to present treatment decision aids is challenging, particularly among the less educated and those of lower socioeconomic status. Currently, a multi-institutional, randomized, controlled trial comparing the effectiveness of written versus pictorial decision aides with typical office discussion and its impact on breast cancer treatment decisions, including contralateral prophylactic mastectomy, is underway and will provide clinician guidance on how best to improve the knowledge of patients facing this difficult decision.22

Given their training, it is assumed that breast and reconstructive surgeons are overall more knowledgeable about breast cancer management and survival rates after unilateral mastectomy and contralateral prophylactic mastectomy. Perhaps this knowledge gap explains the lower rates with which surgeons choose contralateral prophylactic mastectomy for themselves or a loved one relative to laywomen in the general population. Yao et al. examined breast surgeon knowledge among members of the American Society of Breast Surgeons, and identified 232 of 592 surgeon respondents with a low (zero to three of five) number of correct responses to knowledge questions about contralateral prophylactic mastectomy and survival rates, contralateral breast cancer, and high-risk patients.23 Unfortunately, we did not assess surgeon knowledge in this study. Despite the presumed increased knowledge of surgeons, there are some who will opt for contralateral prophylactic mastectomy when faced with a hypothetical early-stage breast cancer diagnosis, demonstrating this to be a challenging personal decision for surgeons as well. This is significant, as surgeons have some influence over patient decisions, and it has been shown that approximately 20 percent of the overall variation in contralateral prophylactic mastectomy use in patients is attributable to individual surgeons.24–26

Consistent with previously established findings, the desire to lower the chance of future contralateral breast cancer, prevent cancer spread, improve survival and enhance peace of mind were among the most prominent reasons cited in favor of contralateral prophylactic mastectomy by laywomen responders.1–7,10,12,18,19 Rosenberg et al., in a study of women without bilateral breast cancer who underwent contralateral prophylactic mastectomy, found that women tend to overestimate their risk for breast cancer recurrence.27 These errors in estimation of cancer risk and specific concerns of women related to contralateral prophylactic mastectomy provide relevant areas that can be focused on in efforts made toward better patient education and shared decision-making. Regarding a desire to enhance peace of mind, Katz et al. demonstrated that among breast surgeons initially reluctant to perform contralateral prophylactic mastectomy, approximately 20 to 40 percent are willing to do so to satisfy patients’ desire for peace of mind and avoid conflict.26 In contrast, they were not likely to perform contralateral prophylactic mastectomy to improve quality of life, avoid losing the patient, reduce recurrence, or improve survival.26 Very interesting in the current study were the differences between reconstructive surgeons and breast surgeons when they responded to questions on factors of importance when considering contralateral prophylactic mastectomy for themselves or a loved one. A high proportion of reconstructive surgeons responded, “a lot” and “quite a bit,” to questions on the influence of symmetry (60 percent), freedom from surveillance (50 percent), and fear of recurrence (45 percent). Consistent with previous studies, a high proportion of breast surgeons responded “not at all” and “a little” to the questions of symmetry (26 percent), freedom from surveillance (51 percent), and fear of recurrence (66 percent).13 The fact that the responses from both groups of surgeons to all evaluated factors, with the exception of the influence of the need for chemotherapy and radiation therapy, were significantly different suggests that the factors driving the decisions in this clinical problem are viewed differently by the surgeon groups. It also suggests that there might be differences in the level of knowledge about the disease process between the surgeon groups. These potential differences in specialty-specific knowledge are minimized with care delivered through multidisciplinary tumor boards where continued learning can occur, ideas can be exchanged, and different perspectives on care can come together to formulate the best care plans.

Interest in breast reconstruction among study participants was relatively high, with 83 percent of laywomen, 92 percent of breast surgeons, and 99 percent of reconstructive surgeons expressing an interest in undergoing breast reconstruction. The availability of breast reconstruction was thought to be very important or extremely important by 60 percent of laywomen. Investigating the relationship between contralateral prophylactic mastectomy and breast reconstruction, Agarwal et al. demonstrated that reconstruction was highly correlated with contralateral prophylactic mastectomy; women who had undergone contralateral prophylactic mastectomy were approximately three times more likely to undergo reconstruction compared with women who did not undergo contralateral prophylactic mastectomy.28 In addition to higher reconstruction rates in patients who had undergone contralateral prophylactic mastectomy, Anderson et al. found that women who had undergone contralateral prophylactic mastectomy had a higher overall satisfaction and positive psychologic outlook compared with unilateral mastectomy patients (97 percent versus 89 percent, respectively), despite of slightly increased complication rate.29 Ultimately, a desire for symmetry with breast reconstruction has been shown to be a factor that influences women’s decisions to proceed with contralateral prophylactic mastectomy. This desire for symmetry tends to be a secondary factor relative to oncologic concerns in the decision-making process.30–32

This study has a number of limitations that have an impact on our findings. The hypothetical nature of the survey may not represent actual decisions that would be made in what is typically a stressful situation following a cancer diagnosis. The low surgeon survey response rate is another limitation that leads to a potential nonresponder bias. Although a 100 percent response rate is desirable, lower response rates can be equally informative. The response rate for plastic surgeons may be a reflection of the fact that surveys were sent to all plastic surgeons, including aesthetic, hand, and craniofacial surgeons, who may not have been inclined to respond to a survey about breast cancer and reconstruction. Surgeons are notoriously difficult to get survey responses from, and it has been shown that the time during which a survey is sent (i.e., holidays) affects response rate. Also, respondents may be unwilling to respond if they have received multiple surveys within a short period.33 Questions on the specific subspecialty of breast surgeons were not asked and would have been of value. The generalizability of findings from laywomen responders using Amazon Mechanical Turk may also be limited, as workers from this platform were younger, predominantly Caucasian, and more educated than the general population. Nevertheless, through this platform, we were able to engage and incorporate the opinions of a large and diverse public group.

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CONCLUSIONS

Knowledge about breast cancer seems to play a significant role in decisions made for contralateral prophylactic mastectomy. In this study, women would make fewer decisions in favor of contralateral prophylactic mastectomy with better education on the disease process and the actual benefit or lack thereof of contralateral prophylactic mastectomy. It is also likely that with improved knowledge specific groups of women, including those who are younger and those who are white, will still opt for contralateral prophylactic mastectomy as was suggested by our surgeon cohort. The decision to undergo contralateral prophylactic mastectomy in women with early-stage unilateral breast cancer and low risk for contralateral breast cancer is often appropriate given the multifactorial and very personal concerns women have to consider; these decisions when well informed should be supported. Concerted efforts through the use of educational tools and decision aids should, however, be made to ensure that women are making well-informed decisions on surgical treatment of breast cancer.

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ACKNOWLEDGMENTS

Support for this study was provided by the Mac nguyen Research Fund for Plastic Surgery Residents at the University of Michigan and the Midcareer Investigator Award in Patient-Oriented Research (K24-AR053120-06).

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