Higher than expected and significantly increasing incidence of upper tract urothelial carcinoma. A population based study

PURPOSE: To register all cases of urothelial cancer and renal cell carcinoma (RCC) in Norway during 1999–2018 to obtain the contemporary incidence of UTUC and UTUC incidence relative to other urothelial cancers and RCC. Further to analyse possible changes over time regarding UTUC incidence, UTUC patient characteristics, tumour characteristics and survival. METHODS: 3502 cases registered with ICD code C65 and C66 during 1999–2018 at the Norwegian cancer registry were entered into a database. After a selection process 3096 cases were included in the study. The crude incidences of UTUC were calculated for each year adjusting for the corresponding population data. Age-standardized rates adjusting to the European standard population (2013) were calculated. Comparisons were made with other cases of urothelial cancer and RCC. For changes over time, the material was split into 5-year periods. Regression analysis was used to calculate yearly changes and for assessing statistical significance. Survival outcomes were calculated using the Kaplan–Meier method. RESULTS: The overall age-standardized incidence rate was 3.88, increasing from 3.21 to 4.70 from first to last 5-year periods. The increase affected all ages except those < 60 years of age, and were observed regardless of gender or anatomical location. UTUC constituted 11.8% of all urothelial cancers, increasing from 9.9 to 12.8%. Mean patient age at diagnosis increased from 71.5 to 73.4 years. The 5-years Cancer-specific survival improved from 57.4 to 65.4%. CONCLUSION: The incidence of UTUC was higher than expected and increasing. Patient age at diagnosis was increasing. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s00345-020-03576-3.