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Has anyone been diagnosed with a pilocytic astrocytoma as an adult?
Our neuro-surgeon would like us to get more information and other opinions for treatment options. The patient is 53 years old and the biopsy showed that the tumor is grade 1. We are trying to figure out what steps should be taken, he has already had a ventriculostomy. We keep reading how rare this is. Just curious if the Mayo Clinic has seen patients with this type of tumor? One article I read says there have only been roughly 900 since 1973.
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@cleahy85
We expect to hear about treatment plans when we go to her appt on 12/22.
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.
Hi @steveninkc I add my welcome to Markelia's and Cleahy's.
Steven, Should you wish to consider a second opinion from experts at Mayo Clinic, please call any of our 3 campuses, http://mayocl.in/1mtmR63. You will be offered an appointment within 48 hours Be sure to mention the Brain Tumor 48-access program. They can help you navigate your healthcare journey and answer your questions about treatment options.
We look forward to learning more about you and your daughter, and helping you in any way we can.
@markelia Thursday is almost here. I'm sure your feeling relieved and anxious that you'll hear about the treatments options soon. Have you got a piece of paper or phone with you to jot down your thoughts and questions between now and Thursday?
@cleahy85 How's your Dad doing?
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.
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1 Reaction@markelia What did you learn at your doctor's appointment on Thursday?
Welcome to Connect, @lynda1992. Thank you for sharing your story!
My daughter's last appt revealed via an MRI that her ventricles were shrinking from her hydrocephalus. We were thrilled to see such improvement since her 2rd ventriculoustomy back in July. Her tumor showed no change. So the plan is continue to watch it. She will have another MRI in March and then every 2-3 months. We are praying that the tumor disappears. She has returned to college for the Spring semester. Thanks for checking in Colleen!
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1 ReactionSuch great news Markelia! Thank you for coming back to tell us. We will keep you and your daughter in our thoughts.
Adult pilocytic astrocytomas are rare creatures. Over 24 years ago I had surgery at Mayo Clinic to remove one. I was 29 years old at the time. The tumor has never come back, but I started having grand mal seizures (again) about three years ago. Mayo Clinic has a great team of doctors. Read about these types tumors on the internet, write down questions and work with the doctors there until you're satisfied with their answers. You are the one in control.
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