Living with Cancer under watch and wait: a qualitative systematic review and thematic synthesis

Objective Watchful waiting, sometimes referred to as active surveillance or observation, is used across a range of cancer contexts to avoid or delay unnecessary treatment and its associated harms. Although this approach may reduce overtreatment, it can also place patients in the unusual position of living with a known cancer that is being monitored rather than immediately treated. This may have important psychological and social consequences. The aim of this review was to synthesize qualitative research exploring patients’ experiences of watchful waiting across cancer contexts. Methods We conducted a qualitative systematic review and thematic synthesis of published studies examining patients’ experiences of watchful waiting. Systematic searches were undertaken across major electronic databases and supplemented by hand searching. Eligible studies used qualitative methods and focused on the experiences of adults living with cancer under a watchful waiting, active surveillance, or equivalent monitoring pathway. Included studies were appraised for methodological quality, and findings were analysed using thematic synthesis to generate descriptive and higher order analytical themes. Results Twenty five studies were included, representing a range of cancer types and clinical pathways. Five overarching themes were identified. First, patients described complex emotional responses, including shock, fear, anxiety, uncertainty, and, for some, gradual adaptation over time. Second, decision making was shaped by perceptions of risk, beliefs about treatment, and varying degrees of trust in clinicians and healthcare systems. Third, social experiences were often marked by isolation, misunderstanding, stigma, and strain within family and intimate relationships, particularly where others struggled to understand distress in the absence of active treatment. Fourth, patients drew on a range of coping strategies, including reassurance from monitoring, peer support, information seeking, acceptance, and routines. Fifth, communication and supportive care emerged as central, with patients valuing clear explanations, continuity, validation, and opportunities to discuss uncertainty and emotional burden. Conclusion Watchful waiting is not a passive experience. It can be psychologically demanding and socially complex, even when clinically appropriate. Cancer services should recognize the emotional burden associated with living with untreated but monitored disease and should proactively identify patients who may benefit from clearer communication, reassurance, and tailored psychological or peer support.