In Their Own Words: Patient Narratives of Breast Cancer Surgery and Reconstruction.

Abstract

Background: Breast cancer's global burden prompts a comprehensive understanding of patient experiences surrounding surgical interventions. Social media platforms serve as a new potential avenue for analysis, reflecting patients' coping mechanisms and support-seeking behaviors.

Objective: This study's objective is to further understand patient experiences regarding breast cancer interventions via social media to improve physician-patient dialogue.

Methods: A cross-sectional study was conducted of Instagram and TikTok posts surrounding breast cancer surgeries using procedure-related hashtags. Content was categorized to prevalent themes related to Breast-Q foci and was subsequently analyzed.

Results: Data from 1,028 individuals were analyzed. Posts encompassed double mastectomy (39%), single mastectomy (22%), and combined deep inferior epigastric perforator flap, latissimus dorsi flap, and transverse rectus abdominis muscle flap reconstruction (39%). Frequently identified themes included 'Raising Awareness' (86.87%), 'Spreading Positivity' (53.11%), 'Resiliency' (31.03%), 'Online Support' (24.61%), 'Update of Appearance' (20.82%), 'Recovery/Rehab' (19.94%), and 'Scientific Explanation' (19.75%). Instagram posts more likely encompassed positivity (p < 0.001), resiliency (p = 0.001), and mental health (p = 0.011). TikTok posts more likely (p = 0.001) discussed scientific explanations, decision-making, and symptoms (p < 0.001). Preoperative posts more likely (p < 0.001) surrounded scientific explanations, decision-making, and fear. Postoperative posts more likely (p < 0.001) highlighted appearance updates, recovery/rehab, and positivity (p = 0.012). Experiences with mastectomy and reconstruction differed: recovery/rehab (p < 0.001), scientific explanations (p = 0.015), treatment process (p = 0.003), range of motion (p < 0.001), self-esteem (p = 0.017), and wound management (p = 0.008).

Conclusion: Concerns of patients online reflect Breast-Q measures. Understanding these nuanced patient discussions can provide novel insights for providers. Tailoring interactions through these insights may facilitate enhanced support, discussions, and experiences throughout the treatment journey. Main Points Social media offers a unique insight into personal patient experiences Online breast surgery patient perspectives reflect Breast-Q measures Outlooks from shared online posts may facilitate physician-patient dialogue LEVEL OF EVIDENCE V: This journal requires that authors assign a level of evidence to each article. For a full description of these Evidence-Based Medicine ratings, please refer to the Table of Contents or the online Instructions to Authors www.springer.com/00266 .