Do young people who have been treated for cancer identify as 'survivors'? Adolescents and young adults' preferences for cancer-related identities in survivorship.

PURPOSE: Cancer has a considerable impact on adolescents and young adults (AYAs) as their identity develops. One contentious issue in the literature is what to call people with a cancer history. Here we investigated the following: (1) what identity labels AYAs with and without a cancer history prefer, (2) demographic and psychological factors associated with adopting the 'survivor' label, and (3) how AYAs' cancer identity preferences evolve over time.

METHODS

Study 1 compared identity preferences cross-sectionally between 93 AYAs with a cancer history, and 51 comparison AYAs with a non-cancer illness history. Study 2 longitudinally followed a subsample of AYAs with a cancer history (N = 40). AYAs completed two identity-related tasks, as well as measures of depression, anxiety, and illness centrality.

RESULTS

AYAs treated for cancer were more likely to adopt the 'survivor' label than the comparison group. AYAs with a cancer history who indicated that cancer remained a more central part of their identity were more likely to adopt the 'survivor' identity. The highest proportion preferring 'survivor' as an identity was shortly post-treatment (35%), with preferences becoming more diverse and distributed over a 12-month period into survivorship.

CONCLUSION

AYAs who have had cancer described themselves in different ways, with the term 'survivor' not preferred by most.

IMPLICATIONS FOR CANCER SURVIVORS: As the landscape of AYA cancer care into survivorship evolves, the language we use matters not only for identity and adjustment during and beyond cancer, but also for the broader context in which cancer-and post-cancer identity-is discussed in society.