Abstract
Loco-regional recurrence after radical primary treatment of oral cancer is associated with poor prognosis and major patient and carer distress. The patient's psychosocial response to recurrence is underreported in the literature. This is one of the few papers to address in detail this stage in a patient's cancer journey. Qualitative methodology was used. Patients were recruited over a 13-month period. Analysis of recorded transcripts from 9 patients suggested that their illness experience and psychological response to diagnosis were multifaceted. Six key themes were identified, which were subdivided into 23 categories. Themes included emotional reactions, reevaluation, active coping strategies, life changes, support, and improvement in relationships. Emotional reactions ranged from shock and devastation, to fear and uncertainty, to hopelessness, to shame, to denial. Not all reactions were negative, and more positive experiences such as newfound openness and improvement in relationships were expressed. There is heightened emotional vulnerability, and this leads to potentially difficult management issues among clinicians and members of the multidisciplinary team. Extreme sensitivity is required by all the individuals involved in providing healthcare at this acute time of patient and carer distress.