What problem does this research address and what are aims of the project?

Doctors find it difficult to give good advice about rare conditions because most will only ever see a single case. Patients with rare conditions often feel overlooked because their doctors do not know what to do and so they may experience delays in treatment.

Retrorectal tumours are rare. The exact numbers are unknown because most publications are about single patients. With increased use of CT and MRI scans, many are discovered by accident. The tumours include many different types of growths typically found behind the back passage and above the anus. The growths may be benign (not cancer) but up to 1 in 3 are cancer.

Most tumours arise from leftover embryo tissue called a tailgut cyst. The cyst lining has potential to develop in many ways and so there is a small risk, about 1 in 20, of a benign tumour becoming cancerous in time. Surgeons often advise removal to exclude cancer and prevent future risk.

There is little high quality information available about these rare tumours, the best management and what the cancer risks really are. This project aims to harness global collaboration to collect data on patients with retrorectal tumours to recommend better management strategies.

The research team

This project is led by Dr Emily Mills, an Academic Foundation Doctor with interests in surgery and medical education. The team are based across the University of Cambridge, Cambridge University Hospitals and the University of Edinburgh.