I am a recently diagnosed patient with two Ganglioneuroblastoma's. they are growing up my spine and are extensive in size at 10cm and 8cm. At present they are in operable but hoping for imunotherapy to shrink them as they are affecting me neurologically. I am loosing the use of my legs and loosing feeling, I am 38 year old woman. the tumour is intermediate. not benign or cancer. just trying to find other adults with the same tumours!! or information about it even if from a child perspective.
or places treatment has been helpful!