Natural history and CT scan follow-up of subependymal giant cell tumors in tuberous sclerosis complex patients

Abstract This study investigated whether subependymal giant cell tumors (SGCT) grow after the second decade in patients with tuberous sclerosis complex (TSC). In this retrospective longitudinal study all 214 TSC patients who had previously been in a single center cross-sectional study in 2007 were included. Institutional Review Board approval was obtained. In February 2012, the most recent contrast-enhanced CT scan of the brain since 2007 was reviewed for radiological signs of SGCT and, if present, the largest diameter was measured. The findings of the CT scans before 2007 were compared with the current findings. Of the 43 patients with radiological signs of SGCT in 2007 a follow-up CT scan was available for 34. Ten (29%) of these patients showed an increase in size of the SGCT. These 10 patients were on average 36 years old (median 34 years; range 26–50 years) and the average size of the SGCT was 17 mm (median 16 mm; range 11–29 mm), which corresponded to an average size increase of 5 mm (median 4 mm; range 2–8 mm) after an average interval of 5 years (range 2–8 years). Of the 171 patients without radiological signs of SGCT in 2007 a follow-up CT scan was available for 138. Three (2%) of these patients showed radiological signs of SGCT on follow-up. These patients were 19, 23, and 41 years old and the SGCT was on average 13 mm (median 17 mm; range 4–19 mm). To conclude, in our cohort, CT scan demonstrated both growth of SGCT and development of new SGCT after the second decade of life in TSC patients.