‘What is this active surveillance thing?’ Men’s and partners’ reactions to treatment decision making for prostate cancer when active surveillance is the recommended treatment option Clare O’Callaghan 1,2,3,4,5 *, Tracey Dryden 6,7 , Amelia Hyatt 2 , Joanne Brooker 8,9 , Sue Burney 9,10 , Addie C. Wootten 11 , Alan White 12 , Mark Frydenberg 13 , Declan Murphy 14,15 , Scott Williams 6,16 and Penelope Schofield 2,16,17 1 Caritas Christi Hospice, St Vincent’s Hospital, Melbourne, Australia 2 Department of Cancer Experiences Research, Peter MacCallum Cancer Centre, Melbourne, Australia 3 Department of Medicine, St Vincent’s Hospital, Melbourne, Australia 4 Faculty of Medicine, Dentistry and Health Sciences, The University of Melbourne, Parkville, Australia 5 Department of Palliative Care, Cabrini Health, Malvern, Australia 6 Peter MacCallum Cancer Centre, Melbourne, Australia 7 Leukaemia Foundation, Preston, Australia 8 Department of Psychiatry, Southern Clinical School, Monash University, Clayton, Australia 9 Cabrini Monash Psycho-Oncology, Cabrini Health, Malvern, Australia 10 School of Psychological Sciences, Monash University, Victoria, Australia 11 Department of Urology, Royal Melbourne Hospital, Parkville, Australia 12 Prostate Cancer Foundation, Lane Cove, Australia 13 Department of Surgery and Urology, Monash University, Clayton, Australia 14 Division of Cancer Surgery, Peter MacCallum Cancer Centre, Melbourne, Australia 15 Epworth Prostate Centre, Epworth Healthcare, Richmond, Australia 16 Sir Peter MacCallum Department of Oncology, Faculty of Medicine, Dentistry and Health Sciences, The University of Melbourne, Melbourne, Australia 17 School of Health Sciences, Faculty of Medicine, Dentistry and Health Sciences, The University of Melbourne, Melbourne, Australia *Correspondence to: Caritas Christi Hospice, St Vincent's Hospital, 104 Studley Park Road, Kew, Melbourne 3101, Australia. E-mail: clare. ocallaghan@svhm.org.au Received: 16 February 2014 Revised: 4 April 2014 Accepted: 21 April 2014 Abstract Objective: In the past decade, localised prostate cancer (LPC) management has been shifting from three radical treatment options (radical prostatectomy, external beam radiotherapy, or brachytherapy) to also include active surveillance (AS). This study examines men with LPC and partners’ experiences of choosing between AS and radical treatments, and their experiences of AS when selected. Methods: A qualitative descriptive research design was used. Interviewed participants were men, and partners of men, who either had chosen radical treatment immediately following diagnosis or had been on AS for at least 3 months. AS was the recommended treatment. Transcribed interviews were thematically analysed and inter-rater reliability integrated. Results: Twenty-one men and 14 partners participated. Treatment decisions reflected varied reactions to prostate cancer information, regularly described as contradictory, confusing, and stressful. Men and partners commonly misunderstood AS but could describe monitoring procedures. Partners often held the perception that they were also on AS. Men and partners usually coped with AS but were sometimes encumbered by treatment decision-making memories, painful biopsies, ongoing conflicting information, and unanswered medical questions. Radical treatment was selected when cancer progression was feared or medically indicated. Some preferred doctors to select treatments. Conclusions: To reduce distress frequently experienced by men diagnosed with LPC and their partners during treatment decision making and ongoing AS monitoring, the following are needed: improved community and medical awareness of AS; consistent information about when radical treatment is required; and consistent, unbiased information on treatment options, prognostic indicators, and side effects. Regularly updated decisional support information/aids incorporating men’s values are imperative. Copyright © 2014 John Wiley & Sons, Ltd. Background Until prostate-specific antigen (PSA) testing was introduced in the mid-1980s [1], detected prostate cancers (PC) were usually advanced and incurable [2]. PSA testing has dramat- ically increased PC incidence; however, many detected cancers are localised and well-to-moderately differentiated [3]. Those with well-differentiated disease often survive Copyright © 2014 John Wiley & Sons, Ltd. Psycho-Oncology Psycho-Oncology 23: 1391–1398 (2014) Published online 16 May 2014 in Wiley Online Library (wileyonlinelibrary.com). DOI: 10.1002/pon.3576