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Research on previvors, individuals with a genetic predisposition to develop hereditary breast and ovarian cancer but who have not yet been diagnosed with breast or other cancers, examines online information gathering and community support to alleviate uncertainty. However, research exploring online content published by previvors themselves is limited. We examined content published to Instagram and TikTok to explore how breast cancer previvors discussed their lived experience which included, but was not limited to, genetic testing, diagnosis with a BRCA1/2 pathogenic (i.e. risk-increasing) variant, the decision to undergo preventative measures like surgery and/or reconstruction, and how they cope after diagnosis and surgical procedures. In the findings, we explicate how many previvors feel a responsibility to share their authentic experience on social media in order to help others and mitigate their own feelings of uncertainty. This study offers a snapshot of how women are sharing breast cancer previvorship and building social connections with each other online.
Wellman et al. (Tue,) studied this question.