Cancer on the margins: experiences of living with neuroendocrine tumours

Cancer is a multifaceted entity with recent developments in treatment only increasing this diversification. Yet, some cancers are less common, less well understood, and receive less attention. Taking neuroendocrine tumours (NETs) as a case study, we explore the lived experience of people with a type of cancer that is virtually unknown among the general population. Drawing on interviews with 30 people living with NETs in Australia, we explored how their experiences are shaped by social and cultural understandings of cancer, and the tensions between chronicity and terminality. We found that people with NETs draw on common narratives around cancer to make sense of their diagnosis. However, NETs were understood as atypical, because they are often incurable, slowly progressing and not associated with treatment side effects such as hair or weight loss. The embodied effects of NETs made them unrecognisable as cancer to participants and community. The specificities of the NET illness experience resulted in the need to reframe narratives around agency and positivity. This hindered social recognition but also provided opportunities to bracket illness and gain some control over the illness experience. The findings of this study highlight the importance of recognising multiple modes of living with cancer.