Aims
The aim was to explore challenges patients with Neuroendocrine Tumours (NETs) face due to their incurable but slow-growing nature.
Methods
Semi-structured interviews with 30 patients (12 female, 18 male) treated for NETs at a hospital in Queensland, Australia. The data was analysed using NVivo10.
Results
4 major themes emerged. (1) Despite the poor long term prognosis a proportion of participants sought to adopt a positive outlook or denied the severity of their condition; (2) On reflection, symptom management was accompanied by uncertainty about available treatment options, disease progression, quality of life and life expectancy; (3) Participants perceived contradictions in how their NET prognosis was framed by different health professionals involved in their care; (4) Some participants expressed feelings of fear, guilt and social isolation due to the uncertainties of the NET diagnosis.
Conclusions
We highlight challenges for NET patients to resolve the tension between a terminal prognosis and a slow but unpredictable disease progression. They often struggle to explain their condition to significant others or fully understand the nature of their illness themselves. This is exacerbated by – and in turn exacerbates - the limited public awareness of NETs inviting some to lead ‘double lives’ in which NETs are dealt with secretly. Improved expertise among health professionals and communication with patients and their families to enhance the recognition of NETs could potentially alleviate these issues.