OBJECTIVES: Little attention has been devoted to the emotional journey of women with locally advanced cervical cancer (LACC) in Brazil. This study sought to understand the emotional states and information-seeking behaviors (IS) reported by these women.

METHODS: Semi-structured telephone interviews were conducted in 2022 among women diagnosed with LACC within the past 2 years in Brazil. This research elicited voices representing diverse demographic & socioeconomic groups. Moderators asked open-ended questions about experience and emotions during the journey from diagnosis to treatment decision, including IS. Transcripts were coded using NVivo qualitative analysis software to identify key themes that emerged from the data.

RESULTS: Twenty-five women participated (mean age 35.7, range 26-49 years) representing multiple race/ethnicities (13 white, 11 Pardo, 1 Black) and health systems (11 private,14 public). Fifteen/25 felt fearful, anxious, lost, or helpless when diagnosed with LACC; 7/15 felt stigma associated with CC. Twelve mentioned concerns with distance or expense of traveling to treatment. Twenty-four discussed the untoward effects of treatment including long term effects; among these, 7 expressed unpreparedness and/or regret, including 3 who regretted that children were no longer possible. Women’s IS made them feel at ease/relaxed/relieved (4), and happy/prepared (2), but also uncertain/anxious (4), and shameful/sad (1). Physicians were an information source for 20 women, and 8 mentioned not seeking a second opinion due to trust in their doctor. In communicating with their care team, 13 have in-person appointments and 12 use a messaging app; 11 preferred messaging for a quick response and avoiding travel.

CONCLUSIONS: Diagnosis and treatment for LACC can place significant burden on patients, which may leave women feeling unprepared or regretful. Information can help mitigate this negative experience and empower women. A trusted healthcare provider can be an important information source that women may access, particularly when communication is facilitated by messaging apps.