As a charity, we rely on voluntary contributions to provide this information. All childhood cancer is rare, but there are a number of extremely rare types of cancer, which together account for less than 1 in 30 of all childhood cancers. In general these rare tumours behave like the more common ones. They have the capacity to keep on growing, to spread to other parts of the body and need treatment with a combination of surgery, chemotherapy and radiotherapy . About two thirds of these rare tumours are called carcinomas and can arise from almost anywhere in the body.
Carcinomas are more common in adults and they are probably linked to age, diet and lifestyle.
We do not know why children may get such tumours although a family history of cancer sometimes suggests a possible genetic cause. Having a child with a very rare disease is always difficult for parents and doctors, as there is little information available to help with deciding on treatment or predicting the future. The UK Children's Cancer Study Group pays particular attention to rare tumours. A specialist committee collects published information about them, some centres are developing guidelines on the best ways of managing particular rare tumours, and experts are developing advice for patients and parents. Your own doctor will routinely contact other specialists and discuss other types of treatment that may have been used previously.