“The uncharted waters of completely not knowing what’s next”: rare cancer patients’ experiences regarding navigating uncertainty

Abstract Purpose A rare cancer diagnosis can cause a great deal of uncertainty. However, rare cancer survivors’ experience with illness uncertainty is underreported in the literature. This study aimed to explore how people diagnosed with a rare cancer experience and manage uncertainty throughout their cancer experience. Methods A secondary analysis of interview data was undertaken. Data were obtained from semi-structured interviews conducted with 20 rare cancer survivors between November 2023 and February 2024. Interviews were recorded and transcribed verbatim. Data were analysed in terms of how participants experienced uncertainty, as described in Mishel’s reconceptualised uncertainty in illness theory (e.g., forms, sources and influences on illness uncertainty). Deductive thematic analysis was applied, using NVivo 15 software. Results Illness uncertainty was most likely experienced in the form of ambiguity or the receipt of inadequate information. The primary source of illness uncertainty arose from event unfamiliarity. The quality and extent of information provision from healthcare providers had the greatest influence over reported illness uncertainty. Nonetheless, social support could also reduce perceptions of uncertainty, particularly amongst those who had completed treatment. Participants adopted various coping strategies in response to uncertainty, such as information seeking, with adaptation occurring over time. Conclusion Rare cancer survivors experience illness uncertainty throughout their cancer trajectory. In line with Mishel’s theory, future research should develop interventions that reduce ambiguity, enhance healthcare provider awareness of the importance of information and its impact on patient wellbeing, and support adaptation. This will improve informational and psychosocial outcomes, and reduce uncertainty, for rare cancer patients.