I was diagnosed with a pilocytic astrocytoma in July of this year. My PCP ordered an MRI and they found multiple masses in my left cerebellum. I met with a neurosurgeon and he wanted to perform surgery to remove as much of the masses as possible. My surgery was only about an hour long and the neurosurgeon told my family that he believed it was only cavernous malformations. He removed a small portion and had it biopsied in Rochester.

Quick fact: my brother has had a meningioma on his frontal lobe. His was the size of a grapefruit. His journey started with a seizure out of nowhere in 2009. He had it removed and is doing well now with the exception of the occasional seizure. He actually became a nurse recently.

Three weeks after my surgery I was having low grade fevers and a resting heart rate of over 120. I went to the ER and they ran multiple tests as well as an MRI and CT. They found nothing wrong with me. I followed up with my neurosurgeon and he gave me the news that it was in fact a grade 1 pilocytic astrocytoma after having received biopsy results from Mayo - Rochester.

My neurosurgeon's plan moving forward was to remove as much of my left cerebellum as possible because he believes that tissue is compromised. We went to Phoenix to have a second and third opinion.

Our second opinion said that this was rare in adults, but basically the "cyst of tumors". They said they would go back in and remove the part of the tumor that was biopsied and leave the rest as they didn't want to disable me. They said my recovery would be about 6-8 weeks with minimal side effects. They did say that I need as much of my cerebellum as possible in order to live a normal life.

Our third opinion at Mayo Clinic in Phoenix had me get a new MRI and reviewed the images with us. The neurosurgeon says that he thinks the tumor may be somewhat diffused and it will be more complicated to remove. He took my case to the tumor board and they recommend not moving forward with surgery because the tumor runs through the middle of my cerebellum and the risk of injury is high. My neurosurgeon still thinks surgery is a possibility. The neurologist mentioned that my tumor has the BRAFF mutation and recommended using chemo meds to shrink the tumor as a secondary option.

Any feedback would be greatly appreciated. I think we will be moving forward with Mayo since they took the time to really examine my case. From what I have researched, this type of tumor in adults is fairly rare and even more rare with the BRAFF mutation.