Objectives Existing research has established the importance of appearance concerns for individuals with cancer and identified appearance as an important factor in dying with dignity. No research, however, has explored in depth the role of appearance in the experiences of individuals who have incurable cancer. This research aims to explore patients’ experiences and perspectives in relation to the role of appearance issues in adults with incurable cancer.

Methods Semi-structured interviews were conducted with 24 adults with incurable cancer (20 women, 4 men; mean age 54.5, SD 11.32).

Results Thematic analysis generated three themes: ‘Identity: Embodying Cancer’, ‘Communication: Wearing your illness’ and ‘Support: Holistic Care’. Appearance was felt to be an important element of identity, which was often dominated by cancer, leading to feelings of separation from the participant’s previous self. Appearance changes also influenced the way in which individuals communicated with their external world, forcing discussion of their diagnosis, and increasing focus on their cancer, with participants having to manage the emotional impact of this on loved ones, as well as the impact on their legacy. Finally, participants highlighted the positive impact of appearance-related support in their well-being and identified peer connections and refocusing on the self as key elements of such support.

Conclusions Appearance changes play an important role in the experiences of individuals with incurable cancer with regards to both identity and communication and challenged participants’ ability to maintain normalcy. Further psychosocial support relating to appearance concerns was considered necessary to promote dignity and provide truly holistic patient care.