Cancer on the margins: experiences of living with neuroendocrine tumours

ABSTRACT

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.

KEYWORDS:

• Cancer
• neuroendocrine tumours
• recognition
• invisibility
• semi-structured interviews
• Australia

Acknowledgements

We thank the University of Queensland Centre for Clinical Research for in kind support of this research. We also thank Veronica and Bruce Phillips, and Keith Boden for their generous donations to facilitate neuroendocrine tumours research.

Disclosure statement

No potential conflict of interest was reported by the authors.

ORCID

Alexandra Gibson http://orcid.org/0000-0002-9976-964X

Notes

1 Many participants had treatment with Lutetium or Lutate (radioactive injections) to control tumour growth. Despite good outcomes, this treatment modality is closely monitored by the specialist, and only suitable for patients who are deemed ‘fit’ to cope with the possible side effects, including potential renal or bone marrow toxicity.

Additional information

Funding

This work was supported by the Royal Brisbane and Women's Hospital Foundation [grant numbers 24/06/2015 and 26/06/2015] via two sources: 1) patient donations and 2) an unrestricted educational grant from Ipsen Pharmaceuticals.