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@steveninkc

my daughter was recently diagnosed with a grade 1 pilocytic astrocytoma as well and its right on her brain stem, they’ve removed the cysts some of the tumor and fluid and in a week she is home now . Shes doing great but they want to start her on chemo (carboplatin) and i believe i need a second opinion, any help would be greatly appreciated ….

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Replies to "my daughter was recently diagnosed with a grade 1 pilocytic astrocytoma as well and its right..."

@steveninkc where are you located? We are in Chicago and my father’s doctors have been phenomenal. He see’s Doctor Chandler and Doctor Grimm they are both with the Brain Tumor Institute at Northwestern Hospital.

How old is your daughter? From the time of her diagnosis to surgery, how long did they wait? My daughters tumor is in the center of her brain and considered inoperable. We see her neuro-oncologist on this Thursday to hear about treatment plans. Her biopsy was in Oct and we received the final results early Nov.

In October 1992, I was first diagnosed with a grade 2 or grade 3 glioma. A shunt was inserted to relieve the pressure caused by the backup of spinal fluid. A month later, I was referred to Dr. Patrick J Kelly at Mayo Clinic. He was 99% sure the tumor was benign. Without doing a biopsy, he was able to remove the tumor which was located in the left lateral ventricular. The pathology report came back as an intraventricular pilocytic astrocytoma. Dr. Kelly removed all of the tumor other than some microscopic pieces that would flush out with the spinal fluid. I underwent NO radiation or had NO chemotherapy. Here I am, still alive, 24 years and counting. Definitely get a second opinion. A second opinion saved my life! I was 29 years old when diagnosed. I also was only the 6th patient that Dr. Kelly had operated on with a tumor in that location.

Welcome to Connect, @lynda1992. Thank you for sharing your story!

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