I was diagnosed with an unspecified lesion in my brain on August 21, 2023. It was believed to be a low grade astrocytoma. This was my 35th birthday, three months after getting married. My neurologist discovered is after an MRI that I begged to have. 
Next up was to be examined by a highly recommended neurosurgeon. I had to wait almost a month to get an appointment. The doctor was very kind but immediately told me he would not touch me. My case was out of his wheelhouse and I should go to Sloan Kettering. 
Sloan Kettering only has a neuro department in NyC. My insurance does not cover out of state visits despite the severity. After a few weeks of back and forth, I was recommended to another neurosurgeon that the original one had studied under. 
This man, who shall remain nameless, was horrible. His opening quote was “Great, how did I get stuck with you?” “Astrocytomas are the worst tumor. They’re sticky and this will get messy”. He did a standard examination and determined my left side was a little weaker than the right, and my hand shook more on that side. He wanted another MRI of just around the site of my tumor, which ended up being worse than I was originally informed. It is on my brainstem. Surgery and biopsy’s would be catastrophic. They could paralyze or kill me. His closing quote was just as positive as the opening; “After this MRI we will have to prepare for not so good things”. 
My husband and I left devastated. I was pretty much told I was screwed and hopeless. Still no answers on if my tumor was even cancerous or not. 
I did some research and found a doctor in Morristown, NJ that had great reviews. I got another MRI and met with him. He seemed very positive-but it was a unique case and he would discuss it with his “tumor board meeting”. 
Waited another week.
Post tumor board meeting-it was determined this was probably not cancerous, and it was commonly found in male children. I may have had it for awhile. Nothing to compare it to so who knows? But doesn’t ultimately seem dangerous. I was also informed it was probably a low grade glioma over an astrocytoma but they weren’t sure. It also seemed to be inside of my first vertebrae, close to brain stem but Also extremely dangerous. 
Had a scan 3 months later-no changes. No CA-125 or PET scan necessary apparently. Treatment didn’t seem to be an option and refusal to biopsy due to location. 
Another scan 3 months later with no change and pushed to 6 months. My next scan is August 13th. 

 

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