Hi - I'm a 46 year old, mom of 1 6-year-old, cancer patient. I have a slow growing brain tumor in my mid brain (interpret as virtually inoperable). I live in Seattle. My husband drives me to my numerous appointments each week and doesn't complain when I periodically rage at him, which I blame on steroids.
At first, 3 years ago, my tumor was called benign and non cancerous. Now it's malignant, definitely referred to as cancer, and had metastasized two places down my spine. After being respected, it grew and moved. After proton radiation, it again grew. It's been stable now for a few months so fingers crossed. The only positive thing I have to say about my pilocytic astrocytoma is that it's likely to stay in the spinal canal unlike other types of cancer which metastasize to the brain and lungs. What I have is more common in children. So rare and interesting in adults, but my tumor has no specific gene markers to combat it. Uninteresting, one oncologist told me.