BACKGROUND: The Incidence of Neuroendocrine neoplasms (NENs) has been increasing worldwide. This retrospective population-based analysis describes demographics, incidence and mortality of NENs across Queensland.
METHODS: Patients diagnosed with NENs were obtained from the Queensland Oncology Repository. Findings include the overall and site-specific incidence, mortality and cause specific survival.
RESULTS: 4,484 NENs were diagnosed between 1982 and 2014. The median age was 56 years and 54% were females. Almost one third (30%) resided in rural areas. The incidence of NENs increased from 1.4 cases to 6.7 cases per 100,000 over the 32 year period. Despite the increase in incidence, mortality rates have remained low, from 0.3 cases in 1982 to 0.5 cases per 100,000 in 2014. NENs were most commonly diagnosed in the appendix (26%) lung (19%), small intestine (19%) and rectum (14%), comprising 79% of all cases. However, over the last 5 years NENs diagnosed in the small intestine have increased in incidence and become the second most common primary site after appendix. The incidence of primary site presentation varied depending on gender and age group. Cause specific 5year survival from 1982-1986 was 76% (95% [CI 71.0, 82.0], 1995 – 1999 was 83.1% (95% [CI 79.7, 86.6]) and in the years 2010 – 2014 further improved to 93.0% (95% [CI 91.3, 94.9]). Over 50% of patients are still living 20 years after diagnosis. Survival also varied by primary site, the highest being for rectum and appendix, and poorest in NEN of unknown primary site and pancreas. Individuals >61 years also had poorer survival.
CONCLUSION: The incidence of NENs in Queensland is rising and there is variation in primary site distribution. Survival from NENs is improving, consistent with studies worldwide.