Meghan E. Meyer

Perceptions, Knowledge, and Satisfaction With Contralateral Prophylactic Mastectomy Among Young Women With Breast Cancer: A Cross-sectional Survey

UNLABELLED Chinese translation BACKGROUND Rates of contralateral prophylactic mastectomy (CPM) have increased dramatically, particularly among younger women with breast cancer, but little is known about how women approach the decision to have CPM. OBJECTIVE To examine preferences, knowledge, decision making, and experiences of young women with breast cancer who choose CPM. DESIGN Cross-sectional survey. SETTING 8 academic and community medical centers that enrolled 550 women diagnosed with breast cancer at age 40 years or younger between November 2006 and November 2010. PATIENTS 123 women without known bilateral breast cancer who reported having bilateral mastectomy. MEASUREMENTS A 1-time, 23-item survey that included items related to decision making, knowledge, risk perception, and breast cancer worry. RESULTS Most women indicated that desires to decrease their risk for contralateral breast cancer (98%) and improve survival (94%) were extremely or very important factors in their decision to have CPM. However, only 18% indicated that women with breast cancer who undergo CPM live longer than those who do not. BRCA1 or BRCA2 mutation carriers more accurately perceived their risk for contralateral breast cancer, whereas women without a known mutation substantially overestimated this risk. LIMITATIONS The survey, which was administered a median of 2 years after surgery, was not validated, and some questions might have been misinterpreted by respondents or subject to recall bias. Generalizability of the findings might be limited. CONCLUSION Despite knowing that CPM does not clearly improve survival, women who have the procedure do so, in part, to extend their lives. Many women overestimate their actual risk for cancer in the unaffected breast. Interventions aimed at improving risk communication in an effort to promote evidence-based decision making are warranted. PRIMARY FUNDING SOURCE Susan G. Komen for the Cure.

Prospective Study of Fertility Concerns and Preservation Strategies in Young Women With Breast Cancer

PURPOSE Most research regarding fertility in young women with breast cancer has focused on long-term survivors. Little is known about how fertility concerns affect treatment decisions or fertility preservation strategies at the time of initial cancer diagnosis. PATIENTS AND METHODS As part of an ongoing prospective multicenter cohort study, we surveyed women with newly diagnosed early-stage breast cancer at age ≤ 40 years. The baseline survey included sociodemographic, medical, and treatment data as well as a modified Fertility Issues Survey, including fertility concern and preservation items. Univariable and multivariable modeling were used to investigate predictors of greater fertility concern. RESULTS Among the first 620 eligible respondents included in this analysis, median age was 37 years (range, 17 to 40 years); 425 women (68%) discussed fertility issues with their physicians before starting therapy, and 319 (51%) were concerned about becoming infertile after treatment. Because of concerns about fertility, four women (1%) chose not to receive chemotherapy, 12 (2%) chose one chemotherapy regimen over another, six (1%) considered not receiving endocrine therapy, 19 (3%) decided not to receive endocrine therapy, and 71 (11%) considered receiving endocrine therapy for < 5 years; 65 (10%) used fertility preservation strategies. Greater concern about fertility was associated with younger age, nonwhite race, not having children, and receipt of chemotherapy. CONCLUSION Many young women with newly diagnosed breast cancer have concerns about fertility, and for some, these substantially affect their treatment decisions. Only a minority of women currently pursue available fertility preservation strategies in this setting.

Ovarian reserve in women who remain premenopausal after chemotherapy for early stage breast cancer

OBJECTIVE To compare markers of ovarian reserve between women exposed to cytotoxic chemotherapy for early stage breast cancer and matched controls. DESIGN Cross-sectional evaluation of markers of ovarian reserve. SETTING Dana-Farber/Brigham and Womens Cancer Center, Massachusetts General Hospital, and Faulkner Hospital in Boston, MA. PATIENT(S) Breast cancer survivors with continued menses after chemotherapy were compared with age-matched, gravidity-matched controls. MAIN OUTCOME MEASURE(S) Antral follicle count (AFC), anti-Müllerian hormone (AMH), FSH, inhibin B (InB), and E(2) on day 2, 3, or 4 of the menstrual cycle. A Bonferroni correction was performed to correct for multiple comparisons. RESULT(S) Twenty survivors and 20 controls were evaluated; 50% of survivors were currently on tamoxifen. Median AFC was 6 for survivors and 9.5 for controls. There were significant differences between the two groups in AFC, AMH, and nonsignificant differences in FSH and InB, all indicating better ovarian reserve in controls. The AFC and AMH levels were highly correlated (r = 0.72). Survivors on tamoxifen had lower AFC, AMH, InB, and higher E(2) than nontamoxifen-treated survivors. CONCLUSION(S) Premenopausal breast cancer survivors have diminished ovarian reserve compared with controls.

Breast cancer presentation and diagnostic delays in young women

Young women may experience delays in diagnosis of breast cancer, and these delays may contribute to poorer outcomes.

P4-11-10: Perceptions, Knowledge and Satisfaction with Contralateral Prophylactic Mastectomy among Young Women with Breast Cancer.

Background: There has been an increasing prevalence of contralateral prophylactic mastectomy (CPM), particularly among younger women with breast cancer. There has been limited research evaluating patient preference, knowledge and decision-making regarding this issue. Methods: We surveyed women who had bilateral mastectomy who were enrolled in a multicenter, longitudinal cohort study of women diagnosed with breast cancer at age 40 and younger. The CPM survey included 23 items on decision making, knowledge, and satisfaction with CPM. Results: Of the 550 patients enrolled as of November 2010, 157 (28.5%) had bilateral mastectomy, of whom 124 completed the CPM survey (response rate 79%). Women with bilateral breast cancer (3) or bilateral prophylactic (1) indications for surgery were excluded. Median age at diagnosis was 37 years (range 26–40); 26 women (21%) reported having a genetic mutation (21 BRCA1 and 5 BRCA2). Excluding mutation carriers, women estimated that a median of 10 of 100 women (range 0–90) would develop contralateral breast cancer in the 5 years after unilateral breast cancer treatment and that 5 of 100 women (range 0 — 98) treated with CPM would develop contralateral breast cancer. Eighteen percent of all respondents believed that women who undergo bilateral mastectomy live longer. Women were asked the importance of potential reasons for undergoing CPM (see Table 1). Eighty-two percent of women were “extremely confident” in their decision to undergo CPM and 92% would “definitely” still choose CPM. Conclusion: Young women with breast cancer have high rates of CPM. Many young women who have undergone CPM overestimate the risk of contralateral disease and the benefits of CPM, including believing that CPM will prevent metastasis and extend life. Interventions to counsel young women with early breast cancer to help them make optimal surgical treatment decisions are needed. Citation Information: Cancer Res 2011;71(24 Suppl):Abstract nr P4-11-10.

Study protocol for Young & Strong: a cluster randomized design to increase attention to unique issues faced by young women with newly diagnosed breast cancer

BackgroundEach year, approximately 11% of women diagnosed with breast cancer in the United States are 45 years of age or younger. These women have concerns specific to or accentuated by their age, including fertility-related concerns, and have higher rates of psychosocial distress than women diagnosed at older ages. Current guidelines recommend that fertility risks be considered early in all treatment plans; however, the extant research indicates that attention to fertility by the healthcare team is limited. Importantly, attention to fertility may be a proxy for whether or not other important issues warranting attention in younger women with breast cancer are addressed, including genetic risks, psychosocial distress, sexual functioning, and body image concerns. The Young & Strong study tests the efficacy of an intervention designed for young women recently diagnosed with breast cancer and their oncologists with the intention to: 1) increase attention to fertility as an important surrogate for other issues facing young women, 2) educate and support young women and their providers, and 3) reduce psychosocial distress among young women with breast cancer.Methods/DesignThe study employs a cluster randomized design including 14 academic institutions and 40 community sites across the U.S. assigned to either the study intervention arm or contact-time comparison intervention arm. Academic institutions enroll up to 15 patients per site while community sites enroll up to 10 patients. Patient eligibility requirements include: an initial diagnosis of stage I-III invasive breast cancer within three months prior, without a known recurrence or metastatic breast cancer; 18–45 years of age at diagnosis; ability to read and write in English. The primary outcome is oncologists’ attention to fertility concerns as determined by medical record review. Secondary outcomes include differences in patient satisfaction with care and psychosocial distress between the two study arms.DiscussionStudy findings will provide valuable insight into how to increase attention to fertility and other issues specific to young women with breast cancer and how to improve doctor-patient communication around these issues, which may promote better quality of care for this population.Trial registrationNCT01647607. Registered July 19, 2012.

Long-Term Risk Perceptions of Women With Ductal Carcinoma In Situ

INTRODUCTION Previous research has demonstrated that many women with ductal carcinoma in situ (DCIS) overestimate their risk for future breast cancer at the time of diagnosis and soon thereafter. This study aims to evaluate risk perceptions after 5 years. PATIENTS AND METHODS In a longitudinal cohort study, we mailed long-term follow-up surveys to 315 women who had previously responded to a survey 18 months after they were diagnosed with DCIS, excluding those who had experienced recurrence and those not treated at our institution. We evaluated risk perceptions with items used previously in the cohort. RESULTS One hundred ninety-three women (61%) responded. The median time since diagnosis was 5.9 years. We excluded 12 because of recurrence. Of the 181 remaining, 32% perceived at least a moderate 5-year risk for developing DCIS again, 43% perceived at least a moderate lifetime risk for developing DCIS again, 27% perceived at least a moderate 5-year risk for invasive breast cancer, 38% perceived at least a moderate lifetime risk for invasive breast cancer, and 24% perceived at least a moderate risk for DCIS spreading to other body parts. In a multivariate model, worse financial status and higher perceived risk in the previous survey were the only predictors of at least a moderate perception of risk for DCIS spreading. CONCLUSION Women with a history of DCIS continue to harbor inaccurate perceptions of their risk for future breast cancer events even 5 years after diagnosis.

A qualitative exploration of supports and unmet needs of diverse young women with breast cancer.

BACKGROUND Young women with breast cancer face different challenges than those faced by older women because of their age and life stage, yet few studies have focused on the different challenges faced by women from diverse populations. OBJECTIVE To explore existing supports that are important during diagnosis and treatment and the unmet needs for information and support in young women with breast cancer. METHODS We conducted 20 semistructured interviews in English with women aged 42 or younger who had been diagnosed with stage I-III invasive breast cancer within the previous 4 years. We recorded and transcribed the interviews and used collaborative group immersion/ crystallization to analyze data, identify emergent themes, and determine if there were differences by race/ethnicity. RESULTS 20 participants, recruited from 9 US states and Canada, were interviewed, of whom 25% were Hispanic, 15% were black, 50% were white and non-Hispanic, and 10% were another race/ethnicity. Faith and/or spirituality and family were reported as important sources of support by many of the participants. Most of them lamented the inadequacy of their connections with other young survivors and also of supports for their family. Some recommended that young patients be provided with more information about: treatment-related physical and emotional changes; fertility and menopause; relationships after cancer; navigating work challenges; and transitioning into survivorship. None of these supports or recommendations was limited to a specific race/ethnicity or geographic region. LIMITATIONS Small sample size, exclusion of non-English speakers. Conclusions Key informant interviews of young breast cancer survivors identified similar needs for education and support across various races/ethnicities and geographies. CONCLUSIONS Key informant interviews of young breast cancer survivors identified similar needs for education and support across various races/ethnicities and geographies.

Abstract P2-15-01: Long-Term Risk Perceptions and Quality of Life of Women with Ductal Carcinoma In Situ

Background: Research has demonstrated that many women with ductal carcinoma in situ (DCIS) overestimate their risk of future breast cancer events. However, no prior studies have evaluated risk perceptions in long-term follow-up. Methods: As part of a multicenter longitudinal cohort study, we mailed long-term follow-up surveys to 315 of 392 women who had previously responded to a survey 18 months after they were diagnosed with DCIS (33 of the 392 were excluded because they were receiving follow-up care at outside centers, and 44 because of recurrence/death). We evaluated psychosocial distress by Hospitalized Anxiety and Depression Scale (HADS) and Revised Impact of Events Scale (RIES), quality of life (QOL) by Short Form Health Survey (SF-36), and risk perceptions with items used previously in the cohort. Results: One hundred ninety-three women (61%) responded. They were a median age of 53 yrs (range 31-89) and a median of 5.8 yrs from diagnosis (range 4.3-7.0). Twelve were excluded due to report of recurrence. Of the 181 remaining, 32% perceived at least a moderate risk of developing DCIS again within 5 yrs; 43% perceived at least a moderate lifetime risk of developing DCIS again; 27% perceived at least a moderate risk of developing invasive breast cancer within 5 yrs; 38% perceived at least a moderate lifetime risk of developing invasive breast cancer; 24% perceived at least a moderate risk of DCIS spreading to other parts of their bodies. For qualitative responses of ≥ moderate perceived risk, median quantitative risk perception was 10% regarding 5-yr risk of DCIS or invasive cancer, 20% regarding lifetime risk, and 50% pertaining to risk of DCIS spreading. The proportion of women reporting ≥ moderate perceived risk of DCIS spreading remained stable over time (25% at baseline; 26% at 18 mos), but this proportion decreased for other perceptions of risk (e.g., at baseline and 18 mos, 51% and 50% of these same women perceived ≥ moderate risk of developing DCIS again within 5 yrs). In a multivariable model, worse financial status (OR 2.6, 95% CI 1.3-5.3) and higher perceived risk on earlier surveys (OR 24.4, 95% CI 12.7-47.2) were the only predictors of ≥ moderate perception of risk of DCIS spreading to other parts of the body in long-term follow-up. Non-significant covariates included age, race, education, grade of DCIS, comedonecrosis, mastectomy, radiation, marital status, employment status, comorbidity, and HADS and RIES scores. This contrasted with earlier survey data, which demonstrated an association between higher risk perceptions and anxiety by HADS and RIES. In long-term follow-up, only 7% were found to be anxious (HADS Anxiety ≥11) and 0.6% were depressed (HADS Depression ≥11). Median SF-36 scores were 48.9 (range 15.7-58.2) and 47.1 (range 23.6-60.3) for the physical and mental components, respectively, consistent with overall good QOL. Conclusions: Women with a history of DCIS continue to harbor inaccurate perceptions of risk of future breast cancer events even at 6 yrs follow-up. Future research should evaluate how these excessive risk perceptions impact health behaviors. Interventions to improve risk perceptions are warranted. Citation Information: Cancer Res 2010;70(24 Suppl):Abstract nr P2-15-01.

“I don't want to take chances.”: A qualitative exploration of surgical decision making in young breast cancer survivors

Young women with unilateral breast cancer are increasingly choosing contralateral prophylactic mastectomy (CPM), despite its limited medical benefit for most women. The purpose of this study was to better understand this choice through a qualitative exploration of surgical decision‐making in young survivors, including how issues particular to younger women affected their decision and the post‐surgical experience.