Abstract

Management of rare cancers is hampered by limited evidence from the small number of cases for each tumour type. In addition, patients have difficulty finding the best clinical care for their tumour. In Ireland, the National Gestational Trophoblastic Disease (GTD) service was established to help manage this rare disease. It is led by a national clinical director and supported by specialist nurses and clinical biochemists who have produced national guidelines and are part of a European and International network of GTD experts. This study considers the impact of a specialist unit on the care of five women with GTD. These cases show overlap with related disease, aggressive tumour spread and the need for international expert option. Genetic tests are needed to confirm the tumour origin and sensitive laboratory tests detect early disease recurrence. The long surveillance periods after treatment may impact women anxious to start a family. Our study demonstrates the importance of a national expert centre to support women with rare tumours. The National GTD service could serve as a model of care to be replicated for other rare tumours. This would ensure all women have equity of access to the services and supports provided by a specialist unit.