The prognosis is sombre, as no cure is known; there is a 5% reported survival rate. Life expectancy with treatment is thought to be around 14.5 months.

To present, all that has been achieved is a period of improvement in some cases following radiotherapy or, less frequently, chemotherapy. During this period, known by some as the “honeymoon”, the tumour recedes, or its growth stabilises, before it begins to grow back even more aggressively.

Currently, clinical trials have only been conducted on high grade gliomas, the category which includes gliomatosis, but none have focused specifically on this cruel disease. Given that the underlying biology of gliomatosis cerebri is unknown, hope for its sufferers lies in research into the disease.