Geographic Differences in Patient Experience After a Diagnosis of Lobular Breast Cancer

Abstract Background Invasive lobular breast carcinoma (ILC) has a distinct morphology and complex impact on clinical outcomes. In North America (NA) and Europe, geographic disparities in the management of ILC may contribute to stress experienced by patients. This study examined regional factors associated with ILC diagnosis that affected patient management and survivorship. Methods A 31-item questionnaire was distributed to three moderated ILC patient groups. The survey consisted of demographic, Likert, multiple choice, and free response questions. Statistical analysis included chi-squared, Mann–Whitney U, and unpaired two-sample t-testing. P-values <0.05 were significant. Free responses were analyzed for theme identification. The study was exempt from institutional review board approval. Results Participants (902) responded from 18 countries in Europe ( n = 267) and NA ( n = 635). Stage at diagnosis in Europe vs. NA was I, 23.6 vs. 48.9%; II, 54.1 vs. 30.5%; III, 17.9 vs. 17.0%; and IV, 4.5 vs. 3.7%. European patients had more advanced disease, and initial treatment recommendations more frequently included antihormonal therapy or chemotherapy ( p <0.001). European patients were less frequently offered lumpectomy ( p = 0.01). European respondents reported less emotional support from family ( p = 0.003), employers ( p = 0.004), and healthcare providers ( p <0.001). NA respondents reported decreased confidence in the accuracy of medical follow-up ( p <0.001). Shared themes included anxiety, lack of ILC-specific information relayed by providers, and perceived dismissal by providers. Conclusions Although unique differences exist between regions, negative psychological implications associated with ILC are universal. This study provides insight into opportunities for global improvement in ILC management, including improved screening approaches and psychological support.