Penile cancer is a rare but aggressive disease, often requiring a rapid and extensive surgical treatment of the primary tumor and staging or treatment of the inguinal lymph node basins. Current management and guidelines of the disease are mainly based on retrospective data, as there is a lack of controlled trials or large series. The purpose of this work is to review contemporary data on the impact of centralization and formation of rare disease networks on penile cancer care and outcomes.

This narrative, non-systematic review is based on publications retrieved by a PubMed and EMBASE search and on the current guidelines of the European Association of Urology, the National Institute for Health and Care Excellence, and the National Comprehensive Cancer network.

The low case load, particularly in non-specialized centres, combined with limited evidence regularly results in a disparity between the treatment strategy and the guidelines. The suboptimal guideline adherence is specifically the case for organ-sparing surgery and surgical staging of the groin areas in selected cases. Treatment of the disease in high-volume referral centres has been shown to improve the use of organ-sparing surgery, the utilization of invasive lymph node staging in high-risk patients, and finally has resulted in increased survival rates.

The management of penile cancer in disease networks and in countries where centralized healthcare is offered positively influences functional and oncological outcomes. We propose that governments and health care providers should be encouraged to centralize healthcare for rare tumors such as penile cancer.

World journal of urology. 2019 Jul 10 [Epub ahead of print]

Joren Vanthoor, Anita Thomas, Igor Tsaur, Maarten Albersen, and in collaboration with the European Reference Network for rare urogenital diseases and complex conditions (eUROGEN)

Department of Urology, University Hospitals Leuven, Herestraat 49, 3000, Leuven, Belgium., Department of Urology and Pediatric Urology, University Medicine Mainz, Mainz, Germany., Department of Urology, University Hospitals Leuven, Herestraat 49, 3000, Leuven, Belgium. .