Hi, never thought I'd make a post here at my age (30) but here we are.
I was diagnosed today with Ganglioneuroblastoma, which was located in my left side just behind my kidney. Originally it was thought to just be a Ganglioneuroma (benign tumour), and most of it is, but it had smaller cancerous nodules hidden in it. I had it removed in surgery a month ago, so it is currently out, but due to the new information I now have to have more tests, including a bone marrow biopsy, to make sure it hasn't spread anywhere else.
The problem is that this condition is so rare in adults (it is more common in children under 5), every single case of it found is referred and discussed in a national MDT. I feel very alone right now and I honestly don't know if there is anyone else out there currently who is going through this type of cancer too.
