Most women undergoing mastectomy for breast cancer do not undergo breast reconstruction.
To examine correlates of breast reconstruction after mastectomy and to determine if a significant unmet need ...for reconstruction exists.
We used Surveillance, Epidemiology, and End Results registries from Los Angeles, California, and Detroit, Michigan, for rapid case ascertainment to identify a sample of women aged 20 to 79 years diagnosed as having ductal carcinoma in situ or stages I to III invasive breast cancer. Black and Latina women were oversampled to ensure adequate representation of racial/ethnic minorities. Eligible participants were able to complete a survey in English or Spanish. Of 3252 women sent the initial survey a median of 9 months after diagnosis, 2290 completed it. Those who remained disease free were surveyed 4 years later to determine the frequency of immediate and delayed reconstruction and patient attitudes toward the procedure; 1536 completed the follow-up survey. The 485 who remained disease free at follow-up underwent analysis.
Disease-free survival of breast cancer.
Breast reconstruction at any time after mastectomy and patient satisfaction with different aspects of the reconstruction decision-making process.
Response rates in the initial and follow-up surveys were 73.1% and 67.7%, respectively (overall, 49.4%). Of 485 patients reporting mastectomy at the initial survey and remaining disease free, 24.8% underwent immediate and 16.8% underwent delayed reconstruction (total, 41.6%). Factors significantly associated with not undergoing reconstruction were black race (adjusted odds ratio AOR, 2.16 95% CI, 1.11-4.20; P = .004), lower educational level (AOR, 4.49 95% CI, 2.31-8.72; P < .001), increased age (AOR in 10-year increments, 2.53 95% CI, 1.77-3.61; P < .001), major comorbidity (AOR, 2.27 95% CI, 1.01-5.11; P = .048), and chemotherapy (AOR, 1.82 95% CI, 0.99-3.31; P = .05). Only 13.3% of women were dissatisfied with the reconstruction decision-making process, but dissatisfaction was higher among nonwhite patients in the sample (AOR, 2.87 95% CI, 1.27-6.51; P = .03). The most common patient-reported reasons for not having reconstruction were the desire to avoid additional surgery (48.5%) and the belief that it was not important (33.8%), but 36.3% expressed fear of implants. Reasons for avoiding reconstruction and systems barriers to care varied by race; barriers were more common among nonwhite participants. Residual demand for reconstruction at 4 years was low, with only 30 of 263 who did not undergo reconstruction still considering the procedure.
Reconstruction rates largely reflect patient demand; most patients are satisfied with the decision-making process about reconstruction. Specific approaches are needed to address lingering patient-level and system factors with a negative effect on reconstruction among minority women.
Background Population-based cancer registry data from the Surveillance, Epidemiology, and End Results (SEER) Program at the National Cancer Institute (NCI) are mainly based on medical records and ...administrative information. Individual-level socioeconomic data are not routinely reported by cancer registries in the United States because they are not available in patient hospital records. The U.S. representative National Longitudinal Mortality Study (NLMS) data provide self-reported, detailed demographic and socioeconomic data from the Social and Economic Supplement to the Census Bureau's Current Population Survey (CPS). In 1999, the NCI initiated the SEER-NLMS study, linking the population-based SEER cancer registry data to NLMS data. The SEER-NLMS data provide a new unique research resource that is valuable for health disparity research on cancer burden. We describe the design, methods, and limitations of this data set. We also present findings on cancer-related health disparities according to individual-level socioeconomic status (SES) and demographic characteristics for all cancers combined and for cancers of the lung, breast, prostate, cervix, and melanoma. Methods Records of cancer patients diagnosed in 1973-2001 when residing 1 of 11 SEER registries were linked with 26 NLMS cohorts. The total number of SEER matched cancer patients that were also members of an NLMS cohort was 26,844. Of these 26,844 matched patients, 11,464 were included in the incidence analyses and 15,357 in the late-stage diagnosis analyses. Matched patients (used in the incidence analyses) and unmatched patients were compared by age group, sex, race, ethnicity, residence area, year of diagnosis, and cancer anatomic site. Cohort-based age-adjusted cancer incidence rates were computed. The impact of socioeconomic status on cancer incidence and stage of diagnosis was evaluated. Results Men and women with less than a high school education had elevated lung cancer rate ratios of 3.01 and 2.02, respectively, relative to their college educated counterparts. Those with family annual incomes less than $12,500 had incidence rates that were more than 1.7 times the lung cancer incidence rate of those with incomes $50,000 or higher. Lower income was also associated with a statistically significantly increased risk of distant-stage breast cancer among women and distant-stage prostate cancer among men. Conclusions Socioeconomic patterns in incidence varied for specific cancers, while such patterns for stage were generally consistent across cancers, with late-stage diagnoses being associated with lower SES. These findings illustrate the potential for analyzing disparities in cancer outcomes according to a variety of individual-level socioeconomic, demographic, and health care characteristics, as well as by area measures available in the linked database.
There is concern that minority women have limited access to breast reconstruction. We described patterns of use, experiences with clinicians, and patients' satisfaction with treatment decisions for ...women of different race/ethnicities.
A total of 3,252 patients with breast cancer from Los Angeles and Detroit Surveillance, Epidemiology, and End Results registries were surveyed near the time of diagnosis (n = 2,260, response rate 72.2%). The primary outcomes were receipt of reconstruction, access to information about reconstruction, and decisional satisfaction. The primary independent variable was race/ethnicity (white, African American AA, highly acculturated Latina Latina-high, and less acculturated Latina Latina-low). Control variables included other sociodemographic and clinical factors. chi(2) and multivariate logistic regression were used for the analyses.
Receipt of reconstruction varied significantly by patient race/ethnicity-40.9% of whites, 33.5% of AAs, 41.2% of Latina-high, and only 13.5% of Latina-low (P < .001)-and persisted when we controlled for demographic and clinical factors. Minority women were significantly less likely than whites to see a plastic surgeon before initial surgery and were more likely to desire more information about reconstruction (17.0% of whites v 27.0% of AAs, 30.0% of Latina-high, and 55.9% of Latina-low; P < .001). Decisional satisfaction was lowest among minority women without reconstruction (P < .001).
Minority women, particularly less acculturated Latinas, had low receipt of breast reconstruction, which may be related to limited information about the procedure and less access to plastic surgeons. Greater desire for information and lower satisfaction with surgical decisions among these patients motivate greater attention to treatment support for these patients.
The growing rate of contralateral prophylactic mastectomy (CPM) among women diagnosed as having breast cancer has raised concerns about potential for overtreatment. Yet, there are few large survey ...studies of factors that affect women's decisions for this surgical treatment option.
To determine factors associated with the use of CPM in a population-based sample of patients with breast cancer.
A longitudinal survey of 2290 women newly diagnosed as having breast cancer who reported to the Detroit and Los Angeles Surveillance, Epidemiology, and End Results registries from June 1, 2005, to February 1, 2007, and again 4 years later (June 2009 to February 2010) merged with Surveillance, Epidemiology, and End Results registry data (n = 1536). Multinomial logistic regression was used to evaluate factors associated with type of surgery. Primary independent variables included clinical indications for CPM (genetic mutation and/or strong family history), diagnostic magnetic resonance imaging, and patient extent of worry about recurrence at the time of treatment decision making.
Type of surgery received from patient self-report, categorized as CPM, unilateral mastectomy, or breast conservation surgery.
Of the 1447 women in the analytic sample, 18.9% strongly considered CPM and 7.6% received it. Of those who strongly considered CPM, 32.2% received CPM, while 45.8% received unilateral mastectomy and 22.8% received breast conservation surgery (BCS). The majority of patients (68.9%) who received CPM had no major genetic or familial risk factors for contralateral disease. Multivariate regression showed that receipt of CPM (vs either unilateral mastectomy or breast conservation surgery) was significantly associated with genetic testing (positive or negative) (vs UM, relative risk ratio RRR: 10.48; 95% CI, 3.61-3.48 and vs BCS, RRR: 19.10; 95% CI, 5.67-56.41; P < .001), a strong family history of breast or ovarian cancer (vs UM, RRR: 5.19; 95% CI, 2.34-11.56 and vs BCS, RRR: 4.24; 95% CI, 1.80-9.88; P = .001), receipt of magnetic resonance imaging (vs UM RRR: 2.07; 95% CI, 1.21-3.52 and vs BCS, RRR: 2.14; 95% CI, 1.28-3.58; P = .001), higher education (vs UM, RRR: 5.04; 95% CI, 2.37-10.71 and vs BCS, RRR: 4.38; 95% CI, 2.07-9.29; P < .001), and greater worry about recurrence (vs UM, RRR: 2.81; 95% CI, 1.14-6.88 and vs BCS, RRR: 4.24; 95% CI, 1.80-9.98; P = .001).
Many women considered CPM and a substantial number received it, although few had a clinically significant risk of contralateral breast cancer. Receipt of magnetic resonance imaging at diagnosis contributed to receipt of CPM. Worry about recurrence appeared to drive decisions for CPM although the procedure has not been shown to reduce recurrence risk. More research is needed about the underlying factors driving the use of CPM.
Background Few studies have evaluated the association between patient decision involvement and surgery received among racially and ethnically diverse patients or patients’ attitudes about surgery and ...the role of family and friends in surgical treatment choices. Methods Women diagnosed with nonmetastatic breast cancer from June 2005 through February 2007 and reported to the Los Angeles or Detroit Surveillance, Epidemiology, and End Results registries were mailed a survey after diagnosis (N = 3133). Latina and African American women were oversampled. The response rate was 72.4%. The analytic sample (N = 1651) excluded those with stage IIIA or higher disease, self-reported clinical contraindications to breast-conserving surgery with radiation, and unclear race or ethnicity. The dependent variable was receipt of mastectomy initially. The primary independent variables were patient involvement in decision making, race or ethnicity, attitudes about recurrence, the effects of radiation, the impact of surgery on body image, and the role of others in decision making. Latinas were categorized as low or high acculturated. The association between patient involvement in decision making and the receipt of mastectomy was evaluated using logistic regression while controlling for other independent variables. All statistical tests were two-sided. Results The analytic sample was 23.9% Latina (12.0% low acculturated, 11.9% high acculturated), 27.1% African American, and 48.9% white, and 17.2% received a mastectomy initially. For each racial or ethnic group, more women who reported a patient-based decision received mastectomy than those who reported a shared or surgeon-based decision (P = .022 for low-acculturated Latinas, P < .001 for other groups). Women who reported that concerns about recurrence or radiation effects were very important in their surgery decision were more likely to receive mastectomy than those less concerned (for recurrence concerns, estimated relative risk RR = 1.66, 95% confidence interval CI = 1.28 to 2.10; for radiation concerns, estimated RR = 2.35, 95% CI = 1.88 to 2.85). Women who reported that body image concerns and their spouse's opinion were very important in their surgery decision less often received mastectomy than those less concerned about body image or who placed less weight on their spouse's opinion (for body image concerns, estimated RR = 0.47, 95% CI = 0.30 to 0.74; for spouse's opinion, estimated RR = 0.53, 95% CI = 0.36 to 0.78). Conclusion Greater patient involvement in decision making was associated with receipt of mastectomy for all racial and ethnic groups. Patient attitudes about surgery and the opinions of family and friends contribute to surgical choices made by women with breast cancer.
To evaluate preferences for and experiences with genetic testing in a diverse cohort of patients with breast cancer identified through population-based registries, with attention to differences by ...race/ethnicity.
We surveyed women diagnosed with nonmetastatic breast cancer from 2005 to 2007, as reported to the SEER registries of metropolitan Los Angeles and Detroit, about experiences with hereditary risk evaluation. Multivariable models evaluated correlates of a strong desire for genetic testing, unmet need for discussion with a health care professional, and receipt of testing.
Among 1,536 patients who completed the survey, 35% expressed strong desire for genetic testing, 28% reported discussing testing with a health care professional, and 19% reported test receipt. Strong desire for testing was more common in younger women, Latinas, and those with family history. Minority patients were significantly more likely to have unmet need for discussion (failure to discuss genetic testing with a health professional when they had a strong desire for testing): odds ratios of 1.68, 2.44, and 7.39 for blacks, English-speaking Latinas, and Spanish-speaking Latinas compared with whites, respectively. Worry in the long-term survivorship period was higher among those with unmet need for discussion (48.7% v 24.9%; P <.001). Patients who received genetic testing were younger, less likely to be black, and more likely to have a family cancer history.
Many patients, especially minorities, express a strong desire for genetic testing and may benefit from discussion to clarify risks. Clinicians should discuss genetic risk even with patients they perceive to be at low risk, as this may reduce worry.
There is concern that mastectomy is overused in the United States.
To evaluate the association of patient-reported initial recommendations by surgeons and those given when a second opinion was sought ...with receipt of initial mastectomy; and to assess the use of mastectomy after attempted breast-conserving surgery (BCS).
A survey of women aged 20 to 79 years with intraductal or stage I and II breast cancer diagnosed between June 2005 and February 2007 and reported to the National Cancer Institute's Surveillance, Epidemiology, and End Results registries for the metropolitan areas of Los Angeles, California, and Detroit, Michigan. Patients were identified using rapid case ascertainment, and Latinas and blacks were oversampled. Of 3133 patients sent surveys, 2290 responded (73.1%). A mailed survey was completed by 96.5% of respondents and 3.5% completed a telephone survey. The final sample included 1984 female patients (502 Latinas, 529 blacks, and 953 non-Hispanic white or other).
The rate of initial mastectomy and the perceived reason for its use (surgeon recommendation, patient driven, medical contraindication) and the rate of mastectomy after attempted BCS.
Of the 1984 patients, 1468 had BCS as an initial surgical therapy (75.4%) and 460 had initial mastectomy, including 13.4% following surgeon recommendation and 8.8% based on patient preference. Approximately 20% of patients (n = 378) sought a second opinion; this was more common for those patients advised by their initial surgeon to undergo mastectomy (33.4%) than for those advised to have BCS (15.6%) or for those not receiving a recommendation for one procedure over another (21.2%) (P < .001). Discordance in treatment recommendations between surgeons occurred in 12.1% (n = 43) of second opinions and did not differ on the basis of patient race/ethnicity, education, or geographic site. Among the 1459 women for whom BCS was attempted, additional surgery was required in 37.9% of patients, including 358 with reexcision (26.0%) and 167 with mastectomy (11.9%). Mastectomy was most common in patients with stage II cancer (P < .001).
Breast-conserving surgery was recommended by surgeons and attempted in the majority of patients evaluated, with surgeon recommendation, patient decision, and failure of BCS all contributing to the mastectomy rate.
To use patient self-report to provide more valid estimates of whether radiotherapy (RT) is underutilized than possible with registry data, as well as to evaluate for disparities and the influence of ...preferences and provider interactions.
We considered 2,260 survey respondents who had nonmetastatic breast cancer, were age 20 to 79 years, were diagnosed between July 2005 and February 2007 in Detroit and Los Angeles, and reported to Surveillance, Epidemiology and End Results (SEER) registries (72% response rate). Survey responses were merged with SEER data. We assessed rates and correlates of RT receipt among all patients with invasive cancer receiving breast-conserving surgery (BCS) and among patients undergoing mastectomy with indications for RT (ie, positive lymph nodes or T3-4 tumors).
Among 904 patients undergoing BCS with strong indications for RT, 95.4% received RT, and 77.6% received RT among the 135 patients undergoing mastectomy with strong indications (P < .001). Among 114 patients undergoing BCS with weaker indications (ie, elderly) for RT, 80.0% received treatment, and 47.5% received RT among the 164 patients undergoing mastectomy with weaker indications (T1N1, T2N1, or T3N0 disease; P < .001). On multivariate analysis, surgery type (P < .001), indication strength (P < .001), age (P = .005), comorbidity (P < .001), income (P = .03), patient desire to avoid RT (P < .001), level of surgeon involvement in decision to have radiation (P < .001), and SEER site (P < .001) were significantly associated with likelihood of RT receipt.
RT receipt was consistently high across sociodemographic subgroups after BCS but was lower after mastectomy, even among patients with strong indications for treatment, in whom clinical benefit is similar. Surgeon involvement had a strong influence on RT receipt.
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