STRUCTURED ABSTRACT
Background:
Differences in patient characteristics and decision-making preferences have been described between those who elect breast-conserving surgery (BCS), unilateral mastectomy (UM) or contralateral prophylactic mastectomy (CPM) for breast cancer. However, it is not known whether preferred and actual decision-making roles differ across these surgery types or whether surgery choice reflects a woman’s goals or achieves desired outcomes.
Methods:
Women diagnosed with Stage 0-III, unilateral breast cancer across eight large medical centers responded to a mailed questionnaire regarding treatment decision-making goals, roles, and outcomes. These data were linked to electronic medical records. Differences were assessed using descriptive analyses and logistic regression.
Results:
There were 750 study participants: 60.1% BCS, 17.9% UM, and 22.0% CPM. On multivariate analysis, reducing worry about recurrence was a more important goal for surgery in the CPM group than the others. Although women’s preferred role in the treatment decision did not differ by surgery, the CPM group was more likely to report taking a more-active-than-preferred role than the BCS group. On multivariate analysis that included receipt of additional surgery, post-treatment worry about both ipsilateral and contralateral recurrence was higher in the BCS group than the CPM group (both p<0.001). The UM group was more worried than the CPM group about contralateral recurrence only (p<0.001).
Conclusions:
Women with CPM were more likely to report being able to reduce worry about recurrence as a very important goal for surgery. They were also the least worried about ipsilateral breast recurrence and contralateral breast cancer almost two years post-diagnosis.
INTRODUCTION
The use of contralateral prophylactic mastectomy (CPM) in patients with breast cancer has increased in the last 15 years1–3 despite decreasing rates of subsequent contralateral breast cancer and failure to demonstrate a survival benefit.4–6 Clinical guidelines and consensus statements clearly define the population for which this surgical treatment is indicated and current rates of CPM far exceed what would be recommended.7–10
The existing literature around this change is substantial, and much is known about the women who elect CPM and the nature of their decision. Women who elect CPM are more likely to be white, younger, wealthier, have more years of education, have a family history of breast cancer, undergo immediate reconstruction, and report higher levels of cancer worry and body-image concerns prior to surgery.11–16 They also often overestimate their own risk of contralateral breast cancer and the survival benefit of CPM, are less persuaded by statistics, and have incomplete knowledge of CPM, particularly regarding the potential adverse effects of surgery.11,17,18 Nevertheless, the vast majority are satisfied with their surgical decision,18–21 with regret attributed mainly to negative outcomes such as diminished body image, poor cosmetic results, and surgical complications.21–25 Three psychosocial themes are identified in the literature: worry, risk, and expectations regarding future outcomes.26–29 The ability to reduce risk of recurrence, avoid worrying about recurrence (i.e. having “peace of mind”), and avoid additional surgery are consistently reported as goals of surgery.15,16,18,26,29–31
The rate of CPM appears to be rising most swiftly in women eligible for breast conserving surgery (BCS), and factors associated with CPM differ for these patients compared to those recommended for unilateral mastectomy.32 It is unknown whether the goals of reducing worry, risk, and need for additional surgery differ for women who elect more versus less extensive surgery. Additionally, although some women with CPM report a more active role in surgical decision making than women with less surgery,27,30 the relationship between preferred and actual decision-making roles for individual patients is less clear and has not been examined specifically in CPM.33 Finally, it is not known whether the psychosocial and surgical outcomes experienced by patients reflect their goals for surgery, nor whether this varies by type of surgery or need for additional breast surgical procedures during cancer treatment.
We used data from the Share Thoughts on Breast Cancer survey linked with electronic health records to examine surgical decision making and psychosocial outcomes for patients with unilateral breast cancer. We compared women with CPM with those who received BCS and UM separately to account for anticipated heterogeneity in decision making, goals and outcomes for the three groups.11,32
METHODS
Survey Data and Study Cohort
The Greater Plains Collaborative (GPC), one of 11 original Patient-Centered Outcomes Research network (PCORnet) Clinical Data Research Networks (CDRNs), administered a survey for the Share Thoughts on Breast Cancer Study to patients from eight medical centers across seven Midwest states.34 The 21-page questionnaire included a mix of established validated measures along with measures developed within our group.35–44 Each participating site extracted, transformed, and loaded North American Association of Central Cancer Registries (NAACCR)-formatted data from their institution’s tumor registry. Patient-level clinical data were linked with survey responses through Honest Brokers. Protocols, procedures and participant materials for this survey were previously described and publicly available.34,45–48 Patients were surveyed once, approximately two years post-diagnosis. Questionnaires were mailed over a six-week period beginning June 19, 2015 and one re-mailing to non-respondents was conducted after four weeks. The study was approved and monitored by the Institutional Review Board (IRB) at the coordinating center.
Eligible patients were women age 18 or older diagnosed with histologically confirmed, stage 0-III breast cancer between January 2013 and May 2014. Only women who received surgery, responded to the survey, and consented to use of electronic medical record (EMR) data were included. Women previously diagnosed with cancer or subsequently diagnosed with another breast cancer per tumor registry records were excluded, as were women deceased at the time the sample was selected. Additional exclusion criteria included lobular carcinoma in situ tumors (ICD-O-3 code 8520/2), bilateral cancer, or laterality not specified, and positive BRCA mutation status (Appendix Table 1). Breast cancer information extracted from the EMR included stage, number of positive lymph nodes, and estrogen receptor (ER) and human epidermal growth factor receptor (HER) 2 status.
Survey Domains
Surgery
We used self-reported measures for surgery, as validated by other studies.49,50 Patients reported their cancer surgery and these were categorized as breast-conserving surgery (BCS), unilateral mastectomy (UM) or CPM. We included three groups as previous work suggests heterogeneity in patient characteristics and outcomes by type of surgery.11 Patients were also asked whether they needed additional breast surgeries. Open-ended responses were reviewed and coded by a surgical oncologist (I.L.) to identify subsequent procedures related to the first surgery. Categories created for additional surgeries included planned surgery, unplanned oncologic surgery, unplanned surgery due to complication, and unplanned cosmetic surgery.
Treatment Goals
To assess treatment goals, patients responded to a set of questions starting with: “When decisions were being made about breast cancer surgery, how important was it that the type of surgery you had…” using a Likert-type scale ranging from “not at all important” to “very important” with 5 response options. These questions were developed and used previously by Hawley et al.43
Preferred and Actual Roles in Decision Making
Patient decision involvement was measured using the Control Preferences Scale developed by Degner et al.41 with wording by Hawley et al.43 The patient’s preferred and actual role in making decisions about treatment was evaluated at two different points in the survey booklet. Five response options were collapsed into three categories: active role, collaborative role, and passive role. We calculated and categorized the concordance between the actual and preferred roles as “actual role more passive than preferred,” “actual role equal to preferred role,” and “actual role more active than preferred.”
Psychosocial Outcomes
Patients were asked to rate various types of worry on a 5-point Likert-type scale ranging from “not at all” to “very much.” We asked patients about their worry of cancer coming back in the same breast, occurring in the other breast, or spreading to other parts of the body, following Janz et al.42 We also asked the extent to which patients worried about dying in the past seven days. Individual items from the validated Functional Assessment of Cancer Therapy-Breast Cancer (FACT-B)36 were included in our analysis to assess issues related to body-image, sexuality, and nervousness.
Health Literacy
Health literacy was assessed using five, self-reported questions each measured on a 5-point Likert scale. These questions measured the frequency of needing help reading hospital materials, filling out medical forms, having problems learning about their medical condition, and having difficulty understanding medical statistics or taking medications properly. A validated, composite, health literacy index was created by summing the scores, detailed elsewhere.39,40,46,51 Patients were asked whether they got a second opinion regarding treatment options prior to surgery.
Statistical Analyses
Descriptive statistics were used to characterize the cohort. Multivariate analyses were conducted to assess the relationship between type of surgery and patient goals, preferences, and outcomes. Ordinary least squares regression models were fitted with robust standard errors. All statistical analyses were performed using Stata Statistical Software: Release 15 (StataCorp LLC, College Station, Texas.). Statistical significance was set at the 5% level.
RESULTS
Patient and Tumor Characteristics
A total of 1,986 patients were invited to participate and 1,235 (62.2%) responded, with 852 (69%) giving signed consent to obtain information from EMR. After exclusion criteria were applied, 750 women were identified: 451 (60.1%) with BCS, 134 (17.9%) with UM, and 165 (22.0%) with CPM (Table 1). On average, surveys were completed two years post-diagnosis (median 22 months, interquartile range 6.8 months, similarly distributed across groups). Almost all women in our sample described their race as white.
Table 1.
Characteristics of study cohort by type of surgery
| BCS (N=451) | UM (N=134) | CPM (N=165) | p-value a | p-value b | |
|---|---|---|---|---|---|
| N (%) | N (%) | N (%) | |||
| Median (SD) age at diagnosis | 60 (10.8) | 58 (11.6) | 49 (10.6) | <0.001 | <0.001 |
| Median (SD) BMI | 27.3 (7.1) | 26.0 (6.9) | 26.5 (5.7) | 0.013 | 0.226 |
| Median (SD) health literacy | 23 (2.6) | 23 (2.7) | 23 (2.5) | 0.266 | 0.912 |
| Median (SD) time to survey c | 22.8 (5.4) | 21.6 (5.0) | 22.8 (5.2) | 0.918 | 0.472 |
| Self-reported race or ethnicity | 0.019 | 0.484 | |||
| Any Asian | 2 (0.4) | 2 (1.5) | 4 (2.4) | ||
| Any Black, African-American, African or Afro-Caribbean | 17 (3.8) | 4 (3.0) | 5 (3.0) | ||
| Any Hispanic, Latino or Spanish origin | 5 (1.1) | 1 (0.7) | 6 (3.6) | ||
| Any Middle Eastern or North African | 0 (0) | 0 (0) | 1 (0.6) | ||
| Any Native American, American Indian or Alaskan Native | 3 (0.7) | 1 (0.7) | 0 (0) | ||
| White only | 423 (93.8) | 124 (92.5) | 147 (89.1) | ||
| Some other race | 1 (0.2) | 0 (0) | 1 (0.6) | ||
| Prefer not to answer | 0 (0) | 2 (1.5) | 1 (0.6) | ||
| Stage | <0.001 | 0.300 | |||
| Stage 0 | 73 (16.3) | 23 (17.3) | 25 (15.2) | ||
| Stage 1 | 261 (58.1) | 39 (29.3) | 50 (30.5) | ||
| Stage 2 | 104 (23.2) | 42 (31.6) | 65 (39.6) | ||
| Stage 3 | 11 (2.4) | 29 (21.8) | 24 (14.6) | ||
| ER status | 0.328 | 0.483 | |||
| Positive | 379 (84.4) | 112 (84.2) | 133 (81.1) | ||
| Negative | 70 (15.6) | 21 (15.8) | 31 (18.9) | ||
| HER2 status | <0.001 | 0.020 | |||
| HER2 testing not done | 57 (13.2) | 20 (15.6) | 21 (13.0) | ||
| Positive | 46 (10.7) | 15 (11.7) | 40 (24.7) | ||
| Negative | 328 (76.1) | 93 (72.7) | 101 (62.3) | ||
| Comorbidity | <0.001 | 0.005 | |||
| No other comorbidity | 147 (33.3) | 49 (38.3) | 92 (56.1) | ||
| One comorbidity | 105 (23.8) | 29 (22.7) | 36 (22.0) | ||
| Two comorbidities | 85 (19.3) | 28 (21.9) | 16 (9.8) | ||
| Three or more comorbidities | 104 (23.6) | 22 (17.2) | 20 (12.2) | ||
| Chemotherapy | <0.001 | 0.025 | |||
| No chemotherapy | 264 (63.6) | 65 (49.2) | 57 (35.2) | ||
| Neoadjuvant | 39 (9.4) | 23 (17.4) | 46 (28.4) | ||
| Adjuvant | 112 (27.0) | 44 (33.3) | 59 (36.4) | ||
| Endocrine therapy | 0.119 | 0.423 | |||
| No | 135 (31.3) | 44 (33.6) | 61 (38.1) | ||
| Yes | 296 (68.7) | 87 (66.4) | 99 (61.9) | ||
| Radiation | <0.001 | 0.981 | |||
| No | 37 (8.4) | 92 (69.7) | 112 (69.6) | ||
| Yes | 405 (91.6) | 40 (30.3) | 49 (30.4) | ||
| Breast reconstruction | <0.001 | <0.001 | |||
| No | 379 (91.3) | 59 (46.5) | 26 (16.6) | ||
| Yes | 36 (8.7) | 68 (53.5) | 131 (83.4) | ||
| Second opinion on treatment options | <0.001 | 0.976 | |||
| Did not obtain | 340 (75.6) | 76 (57.1) | 94 (57.0) | ||
| Obtained | 110 (24.4) | 57 (42.9) | 71 (43.0) | ||
| Family history of breast cancer | 0.435 | 0.231 | |||
| No family history | 207 (47.7) | 69 (53.1) | 78 (49.4) | ||
| Mother, sister or daughter | 98 (22.6) | 23 (17.7) | 41 (25.9) | ||
| Other family | 129 (29.7) | 38 (29.2) | 39 (24.7) | ||
| BRCA testing | <0.001 | <0.001 | |||
| No | 306 (72.2) | 76 (58.9) | 56 (36.4) | ||
| Yes | 118 (27.8) | 53 (41.1) | 98 (63.6) | ||
| Marital status | 0.028 | 0.004 | |||
| Married | 332 (73.6) | 91 (67.9) | 134 (82.2) | ||
| Not married | 119 (26.4) | 43 (32.1) | 29 (17.8) | ||
| Educational attainment | 0.019 | 0.022 | |||
| High School or less | 96 (21.5) | 31 (23.3) | 19 (11.6) | ||
| Some college | 132 (29.5) | 40 (30.1) | 51 (31.1) | ||
| College degree or more | 219 (49.0) | 62 (46.6) | 94 (57.3) | ||
| Household income | 0.002 | 0.010 | |||
| Up to $50,000 | 146 (36.9) | 48 (39.3) | 43 (28.5) | ||
| $50,000-$100,000 | 148 (37.4) | 45 (36.9) | 46 (30.5) | ||
| More than $100,000 | 102 (25.8) | 29 (23.8) | 62 (41.1) | ||
| Current smoker | 0.052 | 0.022 | |||
| No | 422 (93.6) | 122 (91.7) | 160 (97.6) | ||
| Yes | 29 (6.4) | 11 (8.3) | 4 (2.4) |
Abbreviations: breast-conserving surgery, BCS; unilateral mastectomy, UM; contralateral prophylactic mastectomy, CPM.
Chi-squared test for categorical variables and Wilcoxon rank-sum test for continuous variables, BCS vs CPM.
Chi-squared test for categorical variables and Wilcoxon rank-sum test for continuous variables, UM vs CPM.
Time to survey was measured in months from the diagnosis date to the self-reported completion date of the questionnaire.
Women who elected CPM were younger than women who received BCS or UM and were more likely to have HER2-positive disease, no other comorbidity and receive chemotherapy, breast reconstruction and BRCA testing (Table 1). Women with CPM were more likely to be married, nonsmokers, have at least a college education, and be in the highest household income bracket than either the BCS or UM group. Characteristics that did not differ between the CPM and UM group included BMI, stage, ER status, and use of endocrine therapy or radiation. Women with BCS were much more likely to have lower stage breast cancer. Family history of breast cancer did not differ by type of surgery. The median value for the health literacy index was high across all three groups (23 out of 25), and the distribution of scores did not differ between groups. The CPM group obtained second opinions prior to beginning any treatment at a higher rate than the BCS group (43.0% vs 24.4%, p<0.001), but not the UM group.
Treatment Goals
Almost everyone (97.5%) responded it was “important” or “very important” that their choice of surgery reduce the risk of recurrence (Table 2). A similar majority (93.7%) also reported the goal of reducing worry about recurrence as “important” or “very important.” Attributing the highest value (“very important”) to this goal decreased from 94.5% of CPM patients to 88.0% for UM (OR=2.4, p=0.049) and a low of 84.5% of the BCS group (OR=3.2, p=0.002).
Table 2.
Patient-reported goals and roles in the treatment decision by type of surgery
| BCS (N=451) | UM (N=134) | CPM (N=165) | p-value a | p-value b | |
|---|---|---|---|---|---|
| N (%) | N (%) | N (%) | |||
| Goal of therapy: keep from worrying | 0.003 | 0.057 | |||
| Not at all important | 1 (0.2) | 2 (1.5) | 0 (0) | ||
| A bit important | 1 (0.2) | 1 (0.8) | 0 (0) | ||
| Somewhat important | 38 (8.5) | 4 (3.0) | 0 (0) | ||
| Important | 29 (6.5) | 9 (6.8) | 9 (5.5) | ||
| Very important | 377 (84.5) | 117 (88.0) | 155 (94.5) | ||
| Goal of therapy: reduce risk of recurrence | 0.011 | 0.280 | |||
| Not at all important | 2 (0.4) | 1 (0.7) | 0 (0) | ||
| A bit important | 2 (0.4) | 1 (0.7) | 1 (0.6) | ||
| Somewhat important | 10 (2.2) | 1 (0.7) | 0 (0) | ||
| Important | 27 (6.0) | 4 (3.0) | 1 (0.6) | ||
| Very important | 406 (90.8) | 127 (94.8) | 162 (98.8) | ||
| Goal of therapy: avoid surgery | 0.016 | 0.723 | |||
| Not at all important | 4 (0.9) | 1 (0.8) | 1 (0.6) | ||
| A bit important | 7 (1.6) | 2 (1.5) | 2 (1.2) | ||
| Somewhat important | 51 (11.4) | 6 (4.5) | 7 (4.3) | ||
| Important | 65 (14.6) | 19 (14.3) | 15 (9.1) | ||
| Very important | 319 (71.5) | 105 (78.9) | 139 (84.8) | ||
| Goal of therapy: avoid radiation | <0.001 | 0.858 | |||
| Not at all important | 147 (33.8) | 16 (12.4) | 23 (14.3) | ||
| A bit important | 76 (17.5) | 18 (14.0) | 16 (9.9) | ||
| Somewhat important | 98 (22.5) | 24 (18.6) | 33 (20.5) | ||
| Important | 33 (7.6) | 19 (14.7) | 23 (14.3) | ||
| Very important | 81 (18.6) | 52 (40.3) | 66 (41.0) | ||
| Goal of therapy: not feel bad about body | 0.827 | 0.500 | |||
| Not at all important | 71 (16.0) | 21 (15.8) | 23 (14.0) | ||
| A bit important | 50 (11.3) | 14 (10.5) | 17 (10.4) | ||
| Somewhat important | 125 (28.2) | 35 (26.3) | 42 (25.6) | ||
| Important | 62 (14.0) | 29 (21.8) | 26 (15.9) | ||
| Very important | 135 (30.5) | 34 (25.6) | 56 (34.1) | ||
| Goal of therapy: not interfere with sex life in long term | 0.173 | 0.525 | |||
| Not at all important | 116 (26.3) | 33 (25.2) | 35 (21.6) | ||
| A bit important | 62 (14.1) | 17 (13.0) | 22 (13.6) | ||
| Somewhat important | 117 (26.5) | 37 (28.2) | 36 (22.2) | ||
| Important | 64 (14.5) | 21 (16.0) | 36 (22.2) | ||
| Very important | 82 (18.6) | 23 (17.6) | 33 (20.4) | ||
| Goal of therapy: allow you to feel feminine | 0.096 | 0.856 | |||
| Not at all important | 90 (20.3) | 26 (19.4) | 24 (14.6) | ||
| A bit important | 57 (12.8) | 13 (9.7) | 17 (10.4) | ||
| Somewhat important | 116 (26.1) | 32 (23.9) | 39 (23.8) | ||
| Important | 62 (14.0) | 28 (20.9) | 36 (22.0) | ||
| Very important | 119 (26.8) | 35 (26.1) | 48 (29.3) | ||
| Preferred role in treatment decision | 0.331 | 0.792 | |||
| Passive | 81 (18.0) | 26 (19.5) | 28 (17.0) | ||
| Collaborative | 242 (53.7) | 65 (48.9) | 80 (48.5) | ||
| Active | 128 (28.4) | 42 (31.6) | 57 (34.5) | ||
| Actual role in treatment decision | <0.001 | 0.045 | |||
| Passive | 61 (13.6) | 18 (13.4) | 11 (6.7) | ||
| Collaborative | 244 (54.3) | 55 (41.0) | 58 (35.4) | ||
| Active | 144 (32.1) | 61 (45.5) | 95 (57.9) | ||
| Actual versus preferred role | 0.002 | 0.247 | |||
| Actual role more passive than preferred | 82 (18.3) | 23 (17.3) | 18 (11.0) | ||
| Actual role equal to preferred role | 260 (57.9) | 68 (51.1) | 85 (51.8) | ||
| Actual role more active than preferred | 107 (23.8) | 42 (31.6) | 61 (37.2) |
Abbreviations: breast-conserving surgery, BCS; unilateral mastectomy, UM; contralateral prophylactic mastectomy, CPM.
Chi-squared test for categorical variables and Wilcoxon rank-sum test for continuous variables, BCS vs CPM.
Chi-squared test for categorical variables and Wilcoxon rank-sum test for continuous variables, UM vs CPM.
Because patient characteristics differed by type of surgery, multivariate models were also fitted. After adjusting for age, stage, family history, BRCA testing, chemotherapy, and education level, “to keep from worrying” remained a more important treatment goal for women in the CPM group than both UM (p=0.042) and BCS (p<0.001) groups (Appendix Table 2, Figure 1). Reducing risk of recurrence was more important to women with CPM that those with BCS (p=0.003), but not with UM (p=0.226). The goals of avoiding a second surgery and radiation were both more important to women with CPM than the BCS group (both p<0.001). The importance placed on body-image and sexuality as surgical goals did not differ by surgery type.
Figure 1.
Estimated average level of importance of various treatment goals by type of surgery, adjusting for age, stage, family history, BRCA testing, chemotherapy, and highest-level of completed education. Asterisks denote significant differences at the 5% level, compared to the CPM group. Values on the x-axis vary from 0 (not at all important) to 5 (very important).
Preferred and Actual Roles in Decision Making
Preferred role in the treatment decision did not differ by surgery (Table 2, Figure 2). Half (51.7%) of the cohort reported preferences for a collaborative role. However, many women did not take their preferred decision role, with 37.2% in the CPM group reporting a more-active role than preferred. This rate was similar to the UM group (31.6%, p=0.247), but higher than in the BCS group (23.8%, p=0.002). On multivariate analysis, the CPM group remained more likely to have taken an active role in the treatment decision than the BCS group.
Figure 2.
Patient-reported preferred and actual role taken in the treatment decision, and the difference between the two by type of surgery. Asterisks denote significant differences at the 5% level, compared to the CPM group.
Additional Surgery
Few women reported having additional planned surgeries overall, with no differences in rates between the CPM and UM groups (Table 3). Although not statistically significant, women with CPM were 8.3 times more likely to have additional planned surgery than the BCS group (1.8% vs 0.2%, p=0.067), typically reconstructive procedures such replacing a tissue expander with an implant. Regarding unplanned surgeries, the CPM group was more likely to require these due to complications (9.1% vs 0.2%, p<0.001) and for cosmetic reasons (7.9% vs 0.2%, p<0.001), whereas the BCS group was more likely to require unplanned surgery for oncologic reasons (15.7% vs 3.0%, p<0.001), mainly re-excisions.
Table 3.
Patient-reported surgical and psychosocial outcomes by type of surgery
| BCS (N=451) | UM (N=134) | CPM (N=165) | p-value a | p-value b | |
|---|---|---|---|---|---|
| N (%) | N (%) | N (%) | |||
| Additional surgery, planned | 0.029 | 0.507 | |||
| No | 450 (99.8) | 130 (97.0) | 162 (98.2) | ||
| Yes | 1 (0.2) | 4 (3.0) | 3 (1.8) | ||
| Additional surgery, unplanned (any) | 0.445 | 0.594 | |||
| No | 378 (83.8) | 112 (83.6) | 134 (81.2) | ||
| Yes | 73 (16.2) | 22 (16.4) | 31 (18.8) | ||
| Additional surgery, unplanned oncologic | <0.001 | 0.081 | |||
| No | 380 (84.3) | 124 (92.5) | 160 (97.0) | ||
| Yes | 71 (15.7) | 10 (7.5) | 5 (3.0) | ||
| Additional surgery, unplanned complication | <0.001 | 0.121 | |||
| No | 450 (99.8) | 128 (95.5) | 150 (90.9) | ||
| Yes | 1 (0.2) | 6 (4.5) | 15 (9.1) | ||
| Additional surgery, unplanned cosmetic | <0.001 | 0.231 | |||
| No | 450 (99.8) | 128 (95.5) | 152 (92.1) | ||
| Yes | 1 (0.2) | 6 (4.5) | 13 (7.9) | ||
| Outcome: I worry about recurrence, same side | <0.001 | 0.288 | |||
| Not at all | 72 (16.0) | 77 (57.9) | 97 (59.9) | ||
| A little bit | 186 (41.4) | 31 (23.3) | 35 (21.6) | ||
| Somewhat | 120 (26.7) | 18 (13.5) | 13 (8.0) | ||
| Quite a bit | 40 (8.9) | 5 (3.8) | 10 (6.2) | ||
| Very much | 31 (6.9) | 2 (1.5) | 7 (4.3) | ||
| Outcome: I worry about recurrence, other side | <0.001 | <0.001 | |||
| Not at all | 64 (14.3) | 21 (15.7) | 108 (67.1) | ||
| A little bit | 180 (40.1) | 45 (33.6) | 29 (18.0) | ||
| Somewhat | 138 (30.7) | 35 (26.1) | 12 (7.5) | ||
| Quite a bit | 34 (7.6) | 19 (14.2) | 8 (5.0) | ||
| Very much | 33 (7.3) | 14 (10.4) | 4 (2.5) | ||
| Outcome: I worry that the breast cancer will spread | <0.001 | 0.355 | |||
| Not at all | 78 (17.4) | 20 (14.9) | 17 (10.3) | ||
| A little bit | 168 (37.4) | 44 (32.8) | 48 (29.1) | ||
| Somewhat | 123 (27.4) | 35 (26.1) | 41 (24.8) | ||
| Quite a bit | 34 (7.6) | 21 (15.7) | 40 (24.2) | ||
| Very much | 46 (10.2) | 14 (10.4) | 19 (11.5) | ||
| Outcome: I worry about dying | 0.019 | 0.161 | |||
| Not at all | 261 (58.3) | 81 (60.4) | 80 (48.5) | ||
| A little bit | 139 (31.0) | 40 (29.9) | 54 (32.7) | ||
| Somewhat | 29 (6.5) | 9 (6.7) | 23 (13.9) | ||
| Quite a bit | 7 (1.6) | 2 (1.5) | 5 (3.0) | ||
| Very much | 12 (2.7) | 2 (1.5) | 3 (1.8) | ||
| Outcome: I feel nervous | 0.017 | 0.721 | |||
| Not at all | 265 (59.2) | 74 (55.2) | 84 (51.2) | ||
| A little bit | 133 (29.7) | 33 (24.6) | 45 (27.4) | ||
| Somewhat | 33 (7.4) | 19 (14.2) | 23 (14.0) | ||
| Quite a bit | 11 (2.5) | 8 (6.0) | 10 (6.1) | ||
| Very much | 6 (1.3) | 0 (0) | 2 (1.2) | ||
| Outcome: I am self-conscious about the way I dress | <0.001 | 0.166 | |||
| Not at all | 307 (68.4) | 68 (50.7) | 70 (42.4) | ||
| A little bit | 71 (15.8) | 33 (24.6) | 37 (22.4) | ||
| Somewhat | 43 (9.6) | 13 (9.7) | 33 (20.0) | ||
| Quite a bit | 18 (4.0) | 11 (8.2) | 15 (9.1) | ||
| Very much | 10 (2.2) | 9 (6.7) | 10 (6.1) | ||
| Outcome: I am satisfied with my sex life | 0.460 | 0.522 | |||
| Not at all | 42 (13.2) | 15 (15.8) | 25 (18.5) | ||
| A little bit | 35 (11.0) | 8 (8.4) | 18 (13.3) | ||
| Somewhat | 78 (24.5) | 20 (21.1) | 33 (24.4) | ||
| Quite a bit | 86 (27.0) | 24 (25.3) | 29 (21.5) | ||
| Very much | 78 (24.5) | 28 (29.5) | 30 (22.2) | ||
| Outcome: I feel sexually attractive | 0.023 | 0.399 | |||
| Not at all | 46 (10.5) | 20 (15.4) | 32 (19.6) | ||
| A little bit | 83 (18.9) | 27 (20.8) | 36 (22.1) | ||
| Somewhat | 174 (39.7) | 50 (38.5) | 53 (32.5) | ||
| Quite a bit | 85 (19.4) | 28 (21.5) | 29 (17.8) | ||
| Very much | 50 (11.4) | 5 (3.8) | 13 (8.0) | ||
| Outcome: I am able to feel like a woman | <0.001 | 0.648 | |||
| Not at all | 14 (3.1) | 2 (1.5) | 7 (4.2) | ||
| A little bit | 13 (2.9) | 12 (9.0) | 14 (8.5) | ||
| Somewhat | 53 (11.8) | 27 (20.1) | 38 (23.0) | ||
| Quite a bit | 167 (37.3) | 52 (38.8) | 58 (35.2) | ||
| Very much | 201 (44.9) | 41 (30.6) | 48 (29.1) |
Abbreviations: breast-conserving surgery, BCS; unilateral mastectomy, UM; contralateral prophylactic mastectomy, CPM.
Chi-squared test for categorical variables and Wilcoxon rank-sum test for continuous variables, BCS vs CPM.
Chi-squared test for categorical variables and Wilcoxon rank-sum test for continuous variables, UM vs CPM.
Psychosocial Outcomes
Compared to women with BCS, those with CPM reported lower levels of worry about both ipsilateral and contralateral recurrence (p<0.001), but more worry about breast cancer spread (p<0.001) and dying (p=0.019) (Table 3). In contrast, the only difference between the UM and CPM group was that the former was more worried about recurrence in the other breast (p<0.001). On multivariate analysis adjusting for age, stage, family history, BRCA testing, chemotherapy, radiation, highest-level of completed education, and additional unplanned breast surgeries, the CPM group remained less worried about contralateral recurrence than both UM and BCS groups and less worried about ipsilateral recurrence than the BCS group (all p<0.001) (Appendix Table 2, Figure 3). There was no significant difference between groups in worry about cancer spread or dying after adjusting for covariates.
Figure 3.
Adjusted average estimates of psychosocial outcomes by type of surgery, controlling for age, stage, family history, BRCA testing, chemotherapy, radiation, highest-level of completed education, and additional unplanned surgery. Asterisks denote significant differences at the 5% level, compared to the CPM group. Values on the x-axis vary from 0 (not at all) to 5 (Very much).
Compared to the BCS group, women with CPM were more likely to report feeling self-conscious about the way that they dress (p<0.001), and less likely to report feeling like a woman (p<0.001) or sexually attractive (p=0.023). These differences did not persist on multivariate analysis.
DISCUSSION
To the best of our knowledge, this is the first study to compare treatment goals by type of breast cancer surgery and relate them to surgical and psychosocial outcomes. We found that women with CPM were the most likely to report reducing worry about recurrence as a very important goal and were the least likely to be worried about either ipsilateral or contralateral recurrence compared to women who had UM or BCS almost 2 years post-diagnosis despite being, on average, of equivalent or higher stage than their counterparts.
We also report for the first time that women who elected CPM were no more likely to report a preference for active decision-making than other women but perceived taking a more active role in the surgical decision than women with BCS. Ours is not the first study to examine the concordance between preferred and actual role in surgical decision-making. Gutnik et al. prospectively evaluated 95 women immediately before and after their first surgeon’s consultation and found, as we did, a general preference for collaborative decision making.33 However, in contrast to our findings, they did not identify any difference in actual decision-making role or role discordance between mastectomy and lumpectomy patients. Their study had a much smaller proportion of CPM patients and did not evaluate that group separately. Role perception may also change over time and decision making for breast surgery, especially more extensive surgery such as bilateral mastectomy with reconstruction, often happens over more than one visit, which may explain the differences in our findings. A recent survey of surgeon attitudes identified considerable opposition to performing CPM in candidates for breast conservation.52,53 If women perceive barriers to their values and goals from their surgeon (e.g. a recommendation against CPM), it is reasonable to expect that those who most intensely value risk reduction would be most willing to take a more-active-than-preferred role in the treatment decision to accomplish their goals. This phenomenon may also be reflected in our data with the higher rate of second opinion by those who ultimately underwent mastectomy.
Our study is also the first to our knowledge to compare the importance of reducing recurrence and reducing worry about recurrence as separate goals of therapy across surgery types. We noted that although the goals of reducing recurrence and reducing worry about recurrence were both important for all our respondents, they were not of identical importance to the individual patient. Reducing worry (particularly worry about recurrence) is a frequently-cited important psychosocial factor in the decision for CPM, even when the surgery is understood to result in minimal risk reduction.26,28,30,54–56 We observed that patients who had a greater desire to avoid future worry about recurrence were generally inclined to opt for more extensive surgery, and the more extensive the surgery, the less intense the worry reported post-surgery. Together, these results suggest that women are aware of both the object and level of their worry, and in turn select a surgery they believe would accomplish their goals. Furthermore, our results suggest they may have been successful in doing so, at least in the short term.
Although we did not measure pre-surgery worry, higher baseline worry in women who ultimately elect CPM is a consistent finding in studies.15,28,31,57 A recent longitudinal study demonstrated higher worry about breast cancer recurrence in patients who opted for CPM, which then decreased after surgery, a phenomenon which was not duplicated in their non-CPM counterparts.16 This has important implications for the concept that managing anxiety is the alternative to CPM, as it must acknowledge that for many patients, anxiety is not limited in scope or to the decision-making period. This conclusion is further supported by the observation that this “protective” effect of CPM applied only to worry about breast recurrence; these same women were not less worried about cancer spread or death than their counterparts.16 Furthermore, there is evidence that cancer-specific worry and generalized anxiety, while related, represent separate concerns for individuals, with studies showing that CPM patients continue to have higher anxiety and cancer distress that others, even while worry about cancer decreases.16,27,58 Our findings suggest that psychosocial interventions such as counseling targeting anxiety will likely need to support women through different types of worry at different points of time.
The concept that reducing worry and reducing risk are distinct goals has been postulated to explain why CPM is chosen by women regardless of degree of risk, and why surgeons perform CPM for “peace of mind” even if they would not for risk reduction.52,54,55,59 In addition to markedly decreasing the risk of contralateral breast cancer, removing both breasts eliminates the need for routine screening and minimizes the possibility of additional biopsies, both of which can be a source of significant anxiety. Although we did not specifically evaluate numeracy about contralateral breast cancer risk in our cohort, overestimation of risk does not appear to be associated with surgical choice in other studies.17,54,60 We did not identify any difference in health literacy between groups, consistent with prior literature.61 Our findings may partially explain why decision-making tools that focus on enhancing knowledge about an individual’s risk of contralateral cancer, recurrence, mortality and complications from CPM without addressing important psychosocial goals fail to impact rates of CPM.54,59 For these patients, a shared decision-making model would ideally address worry specifically and the ways in which different types of surgery may impact the survivor experience.62,63
Other patient goals also differed by type of surgery in our study. We found that women who elected CPM placed greater value on avoiding additional surgery than the BCS group. Although rates of unplanned oncologic surgeries were indeed lower in the CPM group (mainly because of re-excisions in the BCS group), the rates of additional unplanned surgeries did not differ overall between the two groups due to higher rates of surgical complications and subsequent cosmetic surgeries in the CPM group. However, additional unplanned surgery did not appear to impact worry. There was no difference in goals regarding preservation of appearance and sexuality by surgery type. Although worse psychosocial outcomes in these domains have been reported elsewhere in the literature for women with CPM, albeit inconsistently,12,16,58 we did not find this after adjusting for confounding factors.
There are several important limitations to this study. It is likely that not all UM and CPM patients were candidates for BCS. Although we controlled for stage in our multivariate analysis to address the effect of advanced disease on goals and desire for more aggressive surgery, it is possible that eligibility for BCS impacted decision-making.32 Additionally, goals of therapy and decision-making roles were reported retrospectively, making them subject to recall bias. It is also possible that women reported psychosocial outcomes in such a way to justify their surgical choice. We believe this is unlikely as the survey included other treatment modalities, the outcomes were asked 9 pages after the section on surgical goals, and the question items were taken from the FACT-B, which is not specific to any treatment. Although the study included locations across seven states, our patients were predominantly white, well-educated, and of higher socioeconomic status. Even so, relative to surgery choice, the characteristics of our sample were similar to those from larger, more diverse studies. Although findings for UM were frequently between those for BCS and CPM, our sample size was not large enough to detect meaningful differences between the UM and CPM groups. Our follow up is short and because of the limitations of our data source, we were only able to examine time from diagnosis to survey, rather than time from surgery. Although time from diagnosis was well matched for the three groups, it is possible that time from surgery differed. There is data that suggests worry about breast cancer recurrence decreases over time.16 We therefore anticipate that correcting for time-since-surgery could result in a larger effect-size, as more women with CPM had neoadjuvant chemotherapy and thus potentially shorter surgery-to-survey time, with less time for mitigation of worry. Finally, and most importantly, we did not evaluate anxiety or worry prospectively and so could not directly measure the change in worry after surgery.
Despite these limitations, our study offers novel insight into the goals, experiences, and outcomes of surgery in breast cancer patients. We found that overall, women made surgical decisions (whether BCS, UM or CPM) that were aligned with their values and goals and were able to achieve some goals in their reported surgical and psychosocial outcomes, but not others. Further work is needed to determine whether the differences in worry persist or change in magnitude over time, and whether surgery type remains significantly associated with worry. Within the larger context of the literature, findings from our study suggest that simply targeting physician-patient communication may be insufficient to sway many from their surgical decision.
SYNOPSIS.
Women with contralateral prophylactic mastectomy for breast cancer were more likely to report reducing worry about recurrence as an important goal than those with breast conserving surgery or unilateral mastectomy and were the least worried about breast recurrence after treatment.
ACKNOWLEDGEMENTS
The authors would like to thank Julie McGregor, Amy Godecker, Kathy Peck, and Sarah Esmond for their assistance with data collection and study conduct; the Share Thoughts on Breast Cancer patient advocates who helped develop the study questionnaire including Laurel Hoeth, Cheryl Jernigan and Jody Rock; the study site coordinators and project managers who conducted the study mailings including Teresa Bosler, Michele Coady, Mack Dressler, Sarah Esmond, Bret Gardner, Amy Godecker, Brian Gryzlak, Julie McGregor, Deb Multerer, Char Napurski, Kathy Peck, Nick Rudzianski, Sabrina Uppal, Xiao Zhang, and Brittany Zschoche; investigators overseeing data collection including Drs. Anne Berger, Anne Blaes, Elizabeth Chrischilles, Lindsay Cowell, Barbara Haley, Jennifer Klemp, Ingrid Lizarraga, Joan Neuner, Adedayo Onitilo, Amalie Ramirez, and Priyanka Sharma; and the Greater Plains Collaborative informatics team who integrated tumor registry data and selected the study samples including Bhargav Adagarla, Daniel Connolly, Tamara McMahon, Glenn Bushee, Supreet Kathpalia, Jim McClay, Eneida Mendonca, Tom Mish, Susan Morrison, Phillip Reeder, Nicholas Smith, and Laurel Verhagen.
Conflicts of Interest and Source of Funding:
This project was supported in part by PCORI contract CDRN-1306-04631, along with NIH grants UL1TR002537 for the University of Iowa Institute for Clinical and Translational Science, P30 CA086862 for the Holden Comprehensive Cancer Center (Chrischilles), and P30 CA014520 for the University of Wisconsin Carbone Cancer Center (Trentham-Dietz). All authors report no conflicts of interest.
Appendix Table 1.
Inclusion and exclusion criteria for cohort selection
| Selection criteria | N dropped | N remaining | % loss |
|---|---|---|---|
| Include women whose first tumor was in the breast, diagnosed between January 2013 and May 2014, stage 0-III with diagnosis confirmed through histology, cytology, or other microscopic confirmation; and who responded to the survey | 1,235 | ||
| Exclude lobular carcinoma in situ (8520/2) | 1 | 1,234 | 0.08% |
| Exclude bilateral cancer | 48 | 1,186 | 1.94% |
| Exclude if laterality NOS (e.g. missing) | 6 | 1,180 | 0.51% |
| Exclude if no surgery or unknown | 13 | 1,167 | 1.10% |
| Exclude patients who did not consent to EMR data | 363 | 804 | 31.1% |
| Exclude if consented, but no EMR available | 14 | 790 | 1.7% |
| Exclude patients who had breast cancer more than once or missing answer | 14 | 776 | 1.8% |
| Exclude patients with BRCA testing and positive mutation status | 26 | 750 | 0.34% |
Appendix Table 2.
Estimated difference in treatment goals, role in the treatment decision, and psychosocial outcomes by type of surgery*
| Mean for CPM group | BCS | UM | |||||
|---|---|---|---|---|---|---|---|
| Δ | 95% CI of Δ | p-value | Δ | 95% CI of Δ | p-value | ||
| Goal: to keep from worrying | 4.94 | −0.17 | −0.25, −0.09 | <0.001 | −0.14 | −0.27, −0.01 | 0.042 |
| Goal: to reduce risk of recurrence | 4.99 | −0.11 | −0.18, −0.04 | 0.003 | −0.06 | −0.17, 0.04 | 0.226 |
| Goal: to avoid a second surgery | 4.75 | −0.30 | −0.45, −0.15 | <0.001 | −0.09 | −0.26, 0.08 | 0.280 |
| Goal: to avoid radiation | 3.61 | −1.17 | −1.45, −0.89 | <0.001 | 0.03 | −0.29, 0.36 | 0.851 |
| Goal: to not feel bad about body | 3.51 | −0.15 | −0.42, 0.12 | 0.279 | −0.12 | −0.45, 0.21 | 0.463 |
| Goal: to not interfere with sex life in long term | 3.19 | −0.04 | −0.32, 0.25 | 0.807 | −0.01 | −0.34, 0.32 | 0.947 |
| Goal: to allow you to feel feminine | 3.51 | −0.26 | −0.52, 0.01 | 0.064 | −0.09 | −0.42, 0.24 | 0.578 |
| Preferred role in treatment decision | 2.16 | −0.09 | −0.22, 0.05 | 0.213 | −0.05 | −0.21, 0.11 | 0.558 |
| Actual role in treatment decision | 2.49 | −0.34 | −0.47, −0.22 | <0.001 | −0.15 | −0.31, 0.00 | 0.053 |
| Outcome: I worry about recurrence, same side | 1.79 | 1.01 | 0.67, 1.34 | <0.001 | 0.16 | −0.08, 0.41 | 0.193 |
| Outcome: I worry about recurrence, other side | 1.65 | 1.21 | 0.88, 1.53 | <0.001 | 1.35 | 1.09, 1.62 | <0.001 |
| Outcome: I worry that the breast cancer will spread | 3.02 | −0.12 | −0.47, 0.23 | 0.507 | −0.04 | −0.32, 0.24 | 0.780 |
| Outcome: I worry about dying | 1.79 | 0.00 | −0.28, 0.28 | 1.000 | −0.11 | −0.31, 0.10 | 0.310 |
| Outcome: I feel nervous | 1.83 | 0.02 | −0.26, 0.30 | 0.890 | 0.05 | −0.17, 0.27 | 0.668 |
| Outcome: I am self-conscious about the way I dress | 2.16 | −0.31 | −0.64, 0.02 | 0.066 | −0.03 | −0.31, 0.26 | 0.864 |
| Outcome: I am satisfied with my sex life | 3.13 | 0.05 | −0.39, 0.49 | 0.821 | 0.28 | −0.10, 0.67 | 0.150 |
| Outcome: I feel sexually attractive | 2.83 | 0.32 | −0.01, 0.65 | 0.057 | 0.09 | −0.18, 0.37 | 0.505 |
| Outcome: I am able to feel like a woman | 3.78 | 0.15 | −0.16, 0.46 | 0.351 | 0.07 | −0.18, 0.32 | 0.57 |
Abbreviations: breast-conserving surgery, BCS; unilateral mastectomy, UM; contralateral prophylactic mastectomy, CPM; Δ, estimated absolute difference compared to the mean of the CPM group.
Values for goals and outcomes ranged from 0 (not at all) to 5 (very). Values for preferred and actual role in the treatment decision ranged from 1 (passive) to 3 (active). Goals and roles regression models controlled for age, stage, family history, BRCA testing, chemotherapy, and highest-level of completed education. Psychosocial outcomes regression models controlled for age, stage, family history, BRCA testing, chemotherapy, radiation, highest-level of completed education and additional unplanned surgeries.
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