The National Penile Cancer Register in Sweden 2000-2003

This article reviews the first 4 years of operation of the National Penile Cancer Register (NPECR) in Sweden. The register was set up to gain knowledge about the incidence and primary treatment of penile cancer, including the use of and the frequency of lymph node dissection. The register elicits treatment disparities between regions, and aims to determine the impact of clinical practice guidelines introduced in Sweden.

All patients newly diagnosed with penile cancer after the year 2000 have been registered in the NPECR. A total of 454 patients were registered in the period 2000-2003.

Registrations in the NPECR were almost complete, with 98.7% of cases registered in the National Cancer Register also being registered in the NPECR. At least 145 clinicians reported to the register. The annual incidence of penile cancer is 2.2/100 000 men. Squamous cell carcinoma accounts for 95% of the cases. The mean age at diagnosis was 65.5 years. Most tumours were classified as Tis, T1 or T2, each class representing 25-30% of the total number of diagnosed cases. Penis-preserving treatment was performed in 58% of the patients (Table I). The number of patients classified as > or = T1/G2-G3 was 206, and 101 of these patients (49%) underwent inguinal lymphadenectomy.

We have introduced a population-based register in Sweden with almost complete registration, and this offers unique possibilities for further studies of both epidemiological and clinical aspects of penile cancer. The results obtained to date indicate that the primary treatment is done in many settings and that guidelines, e.g. to dissect lymph nodes, are not always followed.