The Pancreatic Cancer Early Detection (PRECEDE) Study is a Global Effort to Drive Early Detection: Baseline Imaging Findings in High-Risk Individuals.

BACKGROUND: Pancreatic adenocarcinoma (PC) is a highly lethal malignancy with a survival rate of only 12%. Surveillance is recommended for high-risk individuals (HRIs), but it is not widely adopted. To address this unmet clinical need and drive early diagnosis research, we established the Pancreatic Cancer Early Detection (PRECEDE) Consortium. METHODS: PRECEDE is a multi-institutional international collaboration that has undertaken an observational prospective cohort study. Individuals (aged 18-90 years) are enrolled into 1 of 7 cohorts based on family history and pathogenic germline variant (PGV) status. From April 1, 2020, to November 21, 2022, a total of 3,402 participants were enrolled in 1 of 7 study cohorts, with 1,759 (51.7%) meeting criteria for the highest-risk cohort (Cohort 1). Cohort 1 HRIs underwent germline testing and pancreas imaging by MRI/MR-cholangiopancreatography or endoscopic ultrasound. RESULTS: A total of 1,400 participants in Cohort 1 (79.6%) had completed baseline imaging and were subclassified into 3 groups based on familial PC (FPC; n=670), a PGV and FPC (PGV+/FPC+; n=115), and a PGV with a pedigree that does not meet FPC criteria (PGV+/FPC-; n=615). One HRI was diagnosed with stage IIB PC on study entry, and 35.1% of HRIs harbored pancreatic cysts. Increasing age (odds ratio, 1.05; P<.001) and FPC group assignment (odds ratio, 1.57; P<.001; relative to PGV+/FPC-) were independent predictors of harboring a pancreatic cyst. CONCLUSIONS: PRECEDE provides infrastructure support to increase access to clinical surveillance for HRIs worldwide, while aiming to drive early PC detection advancements through longitudinal standardized clinical data, imaging, and biospecimen captures. Increased cyst prevalence in HRIs with FPC suggests that FPC may infer distinct biological processes. To enable the development of PC surveillance approaches better tailored to risk category, we recommend adoption of subclassification of HRIs into FPC, PGV+/FPC+, and PGV+/FPC- risk groups by surveillance protocols.

Impact of adjuvant chemotherapy on long-term employment of survivors of early-stage breast cancer.

BACKGROUND: Many women with early-stage breast cancer are working at the time of diagnosis and survive without disease recurrence. The short-term impact of chemotherapy receipt on employment has been demonstrated, but the long-term impact merits further research. METHODS: The authors conducted a longitudinal multicenter cohort study of women diagnosed with nonmetastatic breast cancer between 2005 and 2007, as reported to the population-based Los Angeles and Detroit Surveillance, Epidemiology, and End Results program registries. Of 3133 individuals who were sent surveys, 2290 (73%) completed a baseline survey soon after diagnosis and of these, 1536 (67%) completed a 4-year follow-up questionnaire. RESULTS: Of the 1026 patients aged < 65 years at the time of diagnosis whose breast cancer did not recur and who responded to both surveys, 746 (76%) worked for pay before diagnosis. Of these, 236 (30%) were no longer working at the time of the follow-up survey. Women who received chemotherapy as part of their initial treatment were less likely to be working at the time of the follow-up survey (38% vs 27%; P = .003). Chemotherapy receipt at the time of diagnosis (odds ratio, 1.4; P = .04) was found to be independently associated with unemployment during survivorship in a multivariable model. Many women who were not employed during the survivorship period wanted to work: 50% reported that it was important for them to work and 31% were actively seeking work. CONCLUSIONS: Unemployment among survivors of breast cancer 4 years after diagnosis is often undesired and appears to be related to the receipt of chemotherapy during initial treatment. These findings should be considered when patients decide whether to receive adjuvant chemotherapy, particularly when the expected benefit is low.

Providers of follow-up care in a population-based sample of breast cancer survivors.

To describe which providers provide breast cancer survivorship care, we conducted a longitudinal survey of nonmetastatic breast cancer patients identified by the SEER registries of Los Angeles and Detroit. Multinomial logistic regression examined the adjusted odds of surgeon compared with a medical oncologist follow-up or primary care provider compared with medical oncologist follow-up, adjusting for age, race/ethnicity, insurance, tumor stage, receipt of chemotherapy, endocrine therapy use, and visit to a medical oncologist at the time of diagnosis. Results were weighted to account for sample selection and nonresponse. 844 women had invasive disease and received chemotherapy or endocrine therapy. 65.2 % reported medical oncologists as their main care provider at 4 years, followed by PCP/other physicians (24.3 %) and surgeons (10.5 %). Black women were more likely to receive their follow-up care from surgeons (OR 2.47, 95 % CI 1.16-5.27) or PCP/other physicians (OR 2.62, 95 % CI 1.47-4.65) than medical oncologists. Latinas were more likely to report PCP/other physician follow-up than medical oncologists (OR 2.33, 95 % CI 1.15-4.73). Compared with privately insured women, Medicaid recipients were more likely to report PCP/other physician follow-up (OR 2.52, 95 % CI 1.24-5.15). Women taking endocrine therapy 4 years after diagnosis were less likely to report surgeons or PCP/other physicians as their primary provider of breast cancer follow-up care. Different survivorship care patterns emerge on race/ethnicity and insurance status. Interventions are needed to inform patients and providers on the recommended sources of breast cancer follow-up.

Cancer-related concerns among women with a new diagnosis of gynecological cancer: an exploration of age group differences.

OBJECTIVE: The study aimed to characterize cancer-related concerns among women with a new diagnosis of gynecological cancer from a developmental life stage perspective. The study compared the degree of cancer-related concern between young women (45 years or younger), middle age women (46-64 years), and older women (65 years or older). MATERIALS/METHODS: Data from women (N = 243) with a condition diagnosed as primary gynecological cancer who were participating in a randomized control trial were analyzed. Women completed a measure that assessed the degree of concern in 12 cancer-related domains (physical functioning, cancer treatment, emotional functioning, sexual functioning, disease progression/death, own well-being, partner well-being, relationship with spouse/partner, body image, relationship with others, employment, and finances). Multivariate comparisons were made between the 3 age groups on the cancer-related concerns. RESULTS: There were age group differences in overall cancer-related concern and specific cancer-related domains. Young women reported the greatest cancer-related concern (P < 0.001). They reported greater concern over emotional functioning (P < 0.001) and sexual functioning (P < 0.001) compared to the middle- and older-age groups. Older women reported less concern over the impact of cancer on finances (P = 007). There were no differences between age groups in concern over physical impairment, cancer treatment, disease progression/death, own well-being, partner well-being, relationship with spouse/partner, body image, and relationship with others. CONCLUSIONS: Age may play an important role in the impact of a gynecological cancer diagnosis in domains of functioning, specifically emotional functioning, sexual functioning, and finances. Other cancer-related areas may represent more universal degree of impact. Professionals may benefit from considering the impact of cancer from a developmental life stage perspective.

Adjuvant endocrine therapy initiation and persistence in a diverse sample of patients with breast cancer.

Adjuvant endocrine therapy for breast cancer reduces recurrence and improves survival rates. Many patients never start treatment or discontinue prematurely. A better understanding of factors associated with endocrine therapy initiation and persistence could inform practitioners how to support patients. We analyzed data from a longitudinal study of 2,268 women diagnosed with breast cancer and reported to the Metropolitan Detroit and Los Angeles SEER cancer registries in 2005-2007. Patients were surveyed approximately both 9 months and 4 years after diagnosis. At the 4-year mark, patients were asked if they had initiated endocrine therapy, terminated therapy, or were currently taking therapy (defined as persistence). Multivariable logistic regression models examined factors associated with initiation and persistence. Of the 743 patients eligible for endocrine therapy, 80 (10.8 %) never initiated therapy, 112 (15.1 %) started therapy but discontinued prematurely, and 551 (74.2 %) continued use at the second time point. Compared with whites, Latinas (OR 2.80, 95 % CI 1.08-7.23) and black women (OR 3.63, 95 % CI 1.22-10.78) were more likely to initiate therapy. Other factors associated with initiation included worry about recurrence (OR 3.54, 95 % CI 1.31-9.56) and inadequate information about side effects (OR 0.24, 95 % CI 0.10-0.55). Factors associated with persistence included two or more medications taken weekly (OR 4.19, 95 % CI 2.28-7.68) and increased age (OR 0.98, 95 % CI 0.95-0.99). Enhanced patient education about potential side effects and the effectiveness of adjuvant endocrine therapy in improving outcomes may improve initiation and persistence rates and optimize breast cancer survival.

Surgeon-level variation in patients' appraisals of their breast cancer treatment experiences.

BACKGROUND AND PURPOSE: While variation in breast cancer quality indicators has been studied, to date there have been no studies examining the degree of surgeon-level variation in patient-reported outcomes. The purpose of this study is to examine surgeon-level variation in patient appraisals of their breast cancer care experiences. METHODS: Survey responses and clinical data from breast cancer patients reported to Detroit and Los Angeles Surveillance, Epidemiology and End Results registries from 6/2005 to 2/2007 were merged with attending surgeon surveys (1,780 patients, 291 surgeons). Primary outcomes were patient reports of access to care, care coordination, and decision satisfaction. Random-effects models examined variation due to individual surgeons for these three outcomes. RESULTS: Mean values on each patient-reported outcome scale were high. The amount of variation attributable to individual surgeons in the unconditional models was low to modest: 5.4% for access to care, 3.3% for care coordination, and 7.5% for decision satisfaction. Few factors were independently associated with patient reports of better access to or coordination of care, but less-acculturated Latina patients had lower decision satisfaction. CONCLUSIONS: Patients reported generally positive experiences with their breast cancer treatment, though we found disparities in decision satisfaction. Individual surgeons did not substantively explain the variation in any of the patient-reported outcomes.

Social-cognitive processes associated with fear of recurrence among women newly diagnosed with gynecological cancers.

OBJECTIVE: This cross sectional study aimed to characterize fears of recurrence among women newly diagnosed with gynecologic cancer. The study also evaluated models predicting the impact of recurrence fears on psychological distress through social and cognitive variables. METHODS: Women (N=150) who participated in a randomized clinical trial comparing a coping and communication intervention to a supportive counseling intervention to usual care completed baseline surveys that were utilized for the study. The survey included the Concerns about Recurrence Scale (CARS), Beck Depression Inventory (BDI), Impact of Event Scale (IES), and measures of social (holding back from sharing concerns and negative responses from family and friends) and cognitive (positive reappraisal, efficacy appraisal, and self-esteem appraisal) variables. Medical data was obtained via medical chart review. RESULTS: Moderate-to-high levels of recurrence fears were reported by 47% of the women. Younger age (p<.01) and functional impairment (p<.01) correlated with greater recurrence fears. A social-cognitive model of fear of recurrence and psychological distress was supported. Mediation analyses indicated, that as a set, the social and cognitive variables mediated the association between fear of recurrence and both depression and cancer-specific distress. Holding back and self-esteem showed the strongest mediating effects. CONCLUSION: Fears of recurrence are prevalent among women newly diagnosed with gynecologic cancer. Social and cognitive factors play a role in women's adaptation to fears and impact overall psychological adjustment. These factors may be appropriate targets for intervention.

Underascertainment of radiotherapy receipt in Surveillance, Epidemiology, and End Results registry data.

BACKGROUND: Surveillance, Epidemiology, and End Results (SEER) registry data have been used to suggest underuse and disparities in receipt of radiotherapy. Prior studies have cautioned that SEER may underascertain radiotherapy but lacked adequate representation to assess whether underascertainment varies by geography or patient sociodemographic characteristics. The authors sought to determine rates and correlates of underascertainment of radiotherapy in recent SEER data. METHODS: The authors evaluated data from 2290 survey respondents with nonmetastatic breast cancer, aged 20 to 79 years, diagnosed from June of 2005 to February 2007 in Detroit and Los Angeles and reported to SEER registries (73% response rate). Survey responses regarding treatment and sociodemographic factors were merged with SEER data. The authors compared radiotherapy receipt as reported by patients versus SEER records. The authors then assessed correlates of radiotherapy underascertainment in SEER. RESULTS: Of 1292 patients who reported receiving radiotherapy, 273 were coded as not receiving radiotherapy in SEER (underascertained). Underascertainment was more common in Los Angeles than in Detroit (32.0% vs 11.25%, P < .001). On multivariate analysis, radiotherapy underascertainment was significantly associated in each registry (Los Angeles, Detroit) with stage (P = .008, P = .026), income (P < .001, P = .050), mastectomy receipt (P < .001, P < .001), chemotherapy receipt (P < .001, P = .045), and diagnosis at a hospital that was not accredited by the American College of Surgeons (P < .001, P < .001). In Los Angeles, additional significant variables included younger age (P < .001), nonprivate insurance (P < .001), and delayed receipt of radiotherapy (P < .001). CONCLUSIONS: SEER registry data as currently collected may not be an appropriate source for documentation of rates of radiotherapy receipt or investigation of geographic variation in the radiation treatment of breast cancer.

Receipt of delayed breast reconstruction after mastectomy: do women revisit the decision?

BACKGROUND: Postmastectomy breast reconstruction is an important component of breast cancer care, but few receive it at the time of the mastectomy. Virtually nothing is known about receipt of reconstruction after initial cancer therapy and why treatment might be delayed. MATERIALS AND METHODS: A 5-year follow-up survey was mailed to a population-based cohort of mastectomy-treated breast cancer patients who were initially surveyed at time of diagnosis in 2002 and reported to the Los Angeles and Detroit SEER registries (N = 645, response rate 60%). Outcomes were receipt of reconstruction (immediate [IR], delayed [DR], or none) and patient appraisal of their treatment decisions. RESULTS: About one-third (35.9%) had IR, 11.5% had DR, and 52.6% had no reconstruction. One-third delayed reconstruction because they focused more on other cancer interventions, and nearly half were concerned about surgical complications and interference with cancer surveillance. Two-thirds of those with no reconstruction said that the procedure was not important to them. A large proportion of all patients were satisfied with their reconstruction decision-making (89.4% IR, 78.4% DR, 80.4% no reconstruction, P = NS). However, only 59.3% of those with no reconstruction felt that they were adequately informed about their reconstructive options (vs 82.7% IR and 78.4% DR, P < .01). CONCLUSIONS: There was modest uptake of breast reconstruction after initial cancer treatment. Factors associated with delayed reconstruction were primarily related to uncertainty about the procedure, concern about cancer surveillance, and low priority. Those without reconstruction demonstrated significant informational needs, which should be addressed with future research efforts.

Does it matter where you go for breast surgery?: attending surgeon's influence on variation in receipt of mastectomy for breast cancer.

BACKGROUND: Concerns about the use of mastectomy and breast reconstruction for breast cancer have motivated interest in surgeon's influence on the variation in receipt of these procedures. OBJECTIVES: To evaluate the influence of surgeons on variations in the receipt of mastectomy and breast reconstruction for patients recently diagnosed with breast cancer. METHODS: Attending surgeons (n = 419) of a population-based sample of breast cancer patients diagnosed in Detroit and Los Angeles during June 2005 to February 2007 (n = 2290) were surveyed. Respondent surgeons (n = 291) and patients (n = 1780) were linked. Random-effects models examined the amount of variation due to surgeon for surgical treatment. Covariates included patient clinical and demographic factors and surgeon demographics, breast cancer specialization, patient management process measures, and attitudes about treatment. RESULTS: Surgeons explained a modest amount of the variation in receipt of mastectomy (4%) after controlling for patient clinical and sociodemographic factors but a greater amount for reconstruction (16%). Variation in treatment rates across surgeons for a common patient case was much wider for reconstruction (median, 29%; 5th-95th percentile, 9%-65%) then for mastectomy (median, 18%; 5th-95th percentile, 8% and 35%). Surgeon factors did not explain between-surgeon variation in receipt of treatment. For reconstruction, 1 surgeon factor (tendency to discuss treatment plans with a plastic surgeon prior to surgery) explained a substantial amount of the between-surgeon variation (31%). CONCLUSION: Surgeons have largely adopted a consistent approach to the initial surgery options. By contrast, the wider between-surgeon variation in receipt of breast reconstruction suggests more variation in how these decisions are made in clinical practice.

Coordinating cancer care: patient and practice management processes among surgeons who treat breast cancer.

OBJECTIVES: The Institute of Medicine has called for more coordinated cancer care models that correspond to initiatives led by cancer providers and professional organizations. These initiatives parallel those underway to integrate the management of patients with chronic conditions. METHODS: We developed 5 breast cancer patient and practice management process measures based on the Chronic Care Model. We then performed a survey to evaluate patterns and correlates of these measures among attending surgeons of a population-based sample of patients diagnosed with breast cancer between June 2005 and February 2007 in Los Angeles and Detroit (N = 312; response rate, 75.9%). RESULTS: Surgeon practice specialization varied markedly with about half of the surgeons devoting 15% or less of their total practice to breast cancer, whereas 16.2% of surgeons devoted 50% or more. There was also large variation in the extent of the use of patient and practice management processes with most surgeons reporting low use. Patient and practice management process measures were positively associated with greater levels of surgeon specialization and the presence of a teaching program. Cancer program status was weakly associated with patient and practice management processes. CONCLUSION: Low uptake of patient and practice management processes among surgeons who treat breast cancer patients may indicate that surgeons are not convinced that these processes matter, or that there are logistical and cost barriers to implementation. More research is needed to understand how large variations in patient and practice management processes might affect the quality of care for patients with breast cancer.

Impact of socioeconomic status on cancer incidence and stage at diagnosis: selected findings from the surveillance, epidemiology, and end results: National Longitudinal Mortality Study.

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.

Clinical presentation of asbestosis with intractable pleural pain in the adult child of a taconite miner and radiographic demonstration of the probable pathology causing the pain.

Taconite, although not classified by the United States Government as asbestos or asbestiform material, has been associated with asbestos-related diseases. The mineral is used in the production of steel and as a road-patch material and is mined in Michigan and Minnesota. This report describes the case of a middle-aged Caucasian woman with exposure to taconite mining dust from her miner father's clothing in childhood with a resultant presentation consistent with asbestosis and intractable pleural pain. Intractable pleural pain has been described in asbestos-exposed patients with theorized etiologies. However, no in vivo reported mechanism has demonstrated a plausible, anatomically apparent mechanism for the pain. We utilize an application of the Vitrea software for enhancement of high-resolution computerized tomography which demonstrates at least one likely mechanism for intractable pleural pain.

Surgeon recommendations and receipt of mastectomy for treatment of breast cancer.

CONTEXT: There is concern that mastectomy is overused in the United States. OBJECTIVES: 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). DESIGN, SETTING, AND PATIENTS: 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). MAIN OUTCOME MEASURES: 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. RESULTS: 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). CONCLUSION: 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.

Chemical exposures in the synthetic rubber industry and lymphohematopoietic cancer mortality.

OBJECTIVE: This study evaluated the association between exposure to several chemicals and mortality from lymphohematopoietic cancer (LHC) among 16,579 synthetic rubber industry workers who were followed up from 1943 to 1998. METHODS: Poisson regression analyses examined LHC rates in relation to butadiene, styrene, and DMDTC exposure. Models provided maximum likelihood estimates of the relative rate for the contrast between categories of one agent, adjusting for other agents and for additional potential confounders. RESULTS: Cumulative exposure to 1,3-butadiene was associated positively with all leukemia (relative rates of 1.0, 1.4, 1.2, 2.9, and 3.7, respectively, for exposures of 0, >0 to <33.7, 33.7 to <184.7, 184.7 to <425.0, and 425.0+ ppm-years), chronic myelogenous leukemia and to a lesser extent with chronic lymphocytic leukemia. Adjusting for styrene and DMDTC attenuated these associations. After controlling for butadiene, neither styrene nor DMDTC displayed a consistent exposure-response trend with all leukemia, chronic myelogenous leukemia, or chronic lymphocytic leukemia. CONCLUSIONS: This study found a positive association between butadiene and leukemia that was not explained by exposure to other agents examined.

Decision Regret following Treatment for Localized Breast Cancer: Is Regret Stable Over Time?

BACKGROUND: While studies suggest most women have little regret regarding their breast cancer treatment decisions immediately following treatment, no studies to date have evaluated how regret may change over time. OBJECTIVE: To measure the stability of posttreatment decision regret over time among women with breast cancer. METHODS: Women diagnosed with breast cancer between August 2005 and May 2007 reported to the Detroit, Michigan, or Los Angeles County Surveillance, Epidemiology, and End Results (SEER) registry and completed surveys at 9 months following diagnosis (time 1) and again approximately 4 years later (time 2). A decision regret scale consisting of 5 items was summed to create 2 decision regret scores at both time 1 and time 2 (range, 0-20). Multivariable linear regression was used to examine change in regret from 9 months to 4 years. Independent variables included surgery type, receipt of reconstruction, and recurrence status at follow-up. The model controlled for demographic and clinical factors. RESULTS: The analytic sample included 1536 women. Mean regret in the overall sample was 4.9 at time 1 and 5.4 at time 2 (P < 0.001). In the multivariable linear model, we found no difference in change in decision regret over time by surgery type. Reporting a new diagnosis of breast cancer at time 2 was associated with a 2.6-point increase in regret over time compared with women without an additional diagnosis (P = 0.003). Receipt of reconstruction was not associated with change in decision regret over time. CONCLUSIONS: Decision regret following treatment was low and relatively stable over time for most women. Those facing an additional diagnosis of breast cancer following treatment may be at risk for elevated regret-related distress.

Concerns about cancer risk and experiences with genetic testing in a diverse population of patients with breast cancer.

PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Emotional well-being years post-treatment for breast cancer: prospective, multi-ethnic, and population-based analysis.

PURPOSE: This study investigated factors associated with declines in emotional well-being (EWB) over time in breast cancer survivors. METHODS: Women with breast cancer (Stages I-III) residing in Los Angeles, CA, or Detroit, MI, and reported to the Surveillance, Epidemiology, and End Results registries between June 2005 and February 2007 completed surveys at 9 months and 4 years after diagnosis. EWB was measured by the Functional Assessment of Cancer Treatment-Breast. Using a stress coping framework, logistic regression models assessed associations between personal, social, and clinical correlates, appraisal (e.g., worry about recurrence) and coping factors (e.g., emotional support) to EWB declines. RESULTS: Among eligible women who completed primary breast cancer treatment, 772 completed both surveys, and 192 (24.9 %) experienced EWB declines over time. Women with past or current depression were more likely to report EWB decline (p < 0.01). Survivors who perceived they did not receive enough information about risk of breast cancer recurrence during primary treatment were more likely to have EWB decline (OR 0.53, 95 % CI 0.32-0.87). Greater perceived likelihood of recurrence (OR 1.95, 95 % CI 1.01-5.29) and increased worry about recurrence (OR 1.38, 95 % CI 1.10-1.72) were associated with EWB decline. Higher spirituality beliefs and practices were associated with EWB decline. CONCLUSIONS: A considerable number of breast cancer patients report emotional well-being declines over time. Early identification of women who are vulnerable, such as women with past depression, is crucial to improve quality of care. Women would benefit from education about cancer recurrence and tailored strategies to manage worry about recurrence over time. IMPLICATION FOR CANCER SURVIVORS: Understanding actual risk of recurrence and managing worry about recurrence is important for cancer survivors. Emotional concerns are common for individuals with cancer so survivors should feel free to reach out and discuss such concerns with providers well into the survivorship period.

Access to breast reconstruction after mastectomy and patient perspectives on reconstruction decision making.

IMPORTANCE: Most women undergoing mastectomy for breast cancer do not undergo breast reconstruction. OBJECTIVE: To examine correlates of breast reconstruction after mastectomy and to determine if a significant unmet need for reconstruction exists. DESIGN, SETTING, AND PARTICIPANTS: 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. EXPOSURES: Disease-free survival of breast cancer. MAIN OUTCOMES AND MEASURES: Breast reconstruction at any time after mastectomy and patient satisfaction with different aspects of the reconstruction decision-making process. RESULTS: 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. CONCLUSIONS AND RELEVANCE: 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.

Social and Clinical Determinants of Contralateral Prophylactic Mastectomy.

IMPORTANCE: 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. OBJECTIVE: To determine factors associated with the use of CPM in a population-based sample of patients with breast cancer. DESIGN, SETTING, AND PARTICIPANTS: 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. MAIN OUTCOMES AND MEASURES: Type of surgery received from patient self-report, categorized as CPM, unilateral mastectomy, or breast conservation surgery. RESULTS: 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). CONCLUSIONS AND RELEVANCE: 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.