Meghan E. Meyer

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.

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.

BACKGROUND: Young women may experience delays in diagnosis of breast cancer, and these delays may contribute to poorer outcomes. METHODS: In a prospective, multicenter cohort study, women recently diagnosed with breast cancer at age ≤40 years were surveyed regarding their initial signs or symptoms of cancer and delays in diagnosis. Self delay was defined as ≥90 days between the first sign or symptom and a patient's first visit to consult a health care provider. Care delay was defined as ≥90 days between that first visit and the diagnosis of breast cancer. In a medical record review, tumor characteristics were assessed, including disease stage. Univariate and multivariate models were used to assess for predictors of self delay, care delay, and advanced stage in the self-detected subset. RESULTS: In 585 eligible participants, the first sign or symptom of cancer was a self-detected breast abnormality for 80%, a clinical breast examination abnormality for 6%, an imaging abnormality for 12%, and a systemic symptom for 1%. Among women with self-detected cancers, 17% reported a self delay, and 12% reported a care delay. Self delays were associated with poorer financial status (P = 0.01). Among young women with self-detected breast cancers, care delay was associated at trend level (P = .06) with higher stage in multivariate modeling. CONCLUSIONS: Most young women detect their own breast cancers, and most do not experience long delays before diagnosis. Women with fewer financial resources are more likely to delay seeking medical attention for a self-detected breast abnormality.

Purpose: Young women with breast cancer suffer distress both at the time of diagnosis and afterwards. This study aimed to elucidate which issues are most disturbing to this population and which might be amenable to intervention. Methods: English-speaking women treated or involved in research at the Dana–Farber Cancer Institute for stage I–III breast cancer while aged 18–42 years were invited to participate in one of four focus groups. A trained moderator led each 90-minute audio-recorded group using a semi-structured interview guide. All transcripts were coded using thematic content analysis with NVivo software. Results: Thirty-six women participated. Three major themes emerged from the analyses of these focus groups' data: (1) participants felt different from older breast cancer patients with regard to relationships, fertility, menopausal symptoms, treatment side effects, and work/finances; (2) participants faced unique challenges transitioning into the survivorship phase of care; and (3) participants desired assistance, including connections with other young patients, help navigating the healthcare system, educational materials, and lists of appropriate counselors. Conclusion: Young women with breast cancer have unmet needs for psychosocial support, education, and symptom management, and can identify potential support that may help meet these needs.