“I don't know if I understood the whole process from the beginning”: A photo-elicitation exploration of the experience of mastectomy and breast reconstruction decision making

Policy and guidance assume that reconstruction following mastectomy will have physical and psychological benefits, however research has disputed whether this is always the case. This study aimed to explore mastectomy experiences and reconstruction decision making. Semi-structured interviews about self-curated participant photographs of the breast cancer experience were analysed using interpretative phenomenological analysis (IPA). Three themes were developed: ‘Life before mastectomy’; ‘I don't know if I understood the whole process from the beginning’; and getting back to ‘normal’. Decisions regarding reconstruction were influenced by needs of others, and surgeons' communication and behaviour and negative experiences were prominent. Over time participants came to terms with physical and psychological impacts of mastectomy reporting re-finding themselves alongside acceptance of their post mastectomy bodies. However, many participants were living with the fear that their cancer may one day return. Communication skills training for healthcare professionals should be a priority to ensure decisions made result in the best possible outcomes for patients. Photo-elicitation is a novel research method enabling rich investigation of mastectomy experiences. Self-curation of images enables patient-led discussions about mastectomy experience and illustrates the importance of life context. Photographs may have value within clinical training to facilitate understanding of patient experiences. •Reconstruction decision making following breast cancer mastectomy is complex.•Photo-elicitation empowers participants to lead discussions about experience.•Participants discussed identity, decision making, and returning to normality.•Surgeons influenced decisions and may unwittingly put pressure on patients.•Improved surgeon-patient communication and use of decision-aids is needed.