Resisting recommended treatment for prostate cancer: a qualitative analysis of the lived experience of possible overdiagnosis

OBJECTIVE: To describe the lived experience of a possible prostate cancer overdiagnosis in men who resisted recommended treatment. DESIGN: Qualitative interview study SETTING: Australia PARTICIPANTS: 11 men (aged 59–78 years) who resisted recommended prostate cancer treatment because of concerns about overdiagnosis and overtreatment. OUTCOMES: Reported experience of screening, diagnosis and treatment decision making, and its impact on psychosocial well-being, life and personal circumstances. RESULTS: Men’s accounts revealed profound consequences of both prostate cancer diagnosis and resisting medical advice for treatment, with effects on their psychological well-being, family, employment circumstances, identity and life choices. Some of these men were tested for prostate-specific antigen without their knowledge or informed consent. The men felt uninformed about their management options and unsupported through treatment decision making. This often led them to develop a sense of disillusionment and distrust towards the medical profession and conventional medicine. The findings show how some men who were told they would soon die without treatment (a prognosis which ultimately did not eventuate) reconciled issues of overdiagnosis and potential overtreatment with their own diagnosis and situation over the ensuing 1 to 20+ years. CONCLUSIONS: Men who choose not to have recommended treatment for prostate cancer may avoid treatment-associated harms like incontinence and impotence, however our findings showed that the impact of the diagnosis itself is immense and far-reaching. A high priority for improving clinical practice is to ensure men are adequately informed of these potential consequences before screening is considered.