Has anyone been diagnosed with a pilocytic astrocytoma as an adult?

Posted by cleahy85 @cleahy85, Mar 24, 2016

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.

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.

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@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?

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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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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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@colleenyoung

@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?

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@markelia What did you learn at your doctor’s appointment on Thursday?

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

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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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@markelia

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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Such great news Markelia! Thank you for coming back to tell us. We will keep you and your daughter in our thoughts.

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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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@lynda1992

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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Your story gives me hope! I’m 36 and just had surgery to remove a pilocytic astrocytoma from my temporal lobe Dec 30th. They were able to remove the entire tumor thanks to the good Lord. Now I’m just dealing with extreme anxiety… I pray it never comes back. Thank you for sharing your story. If you have any pointers on how to deal with my anxiety I would love to hear them.

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Hello. I actually had surgery to remove a grade 1 pilocytic astrocytoma from my right temporal lobe December 30th at Mayo. I did not know what type of tumor it was until after the surgery. I am 36 years old. I feel very blessed that it was operable and that they were able to remove the entire tumor. My doctor said 9 out of 10 times these types of tumors never grow back. So I am praying that it never grows back. I actually came across another 36 year old female that just had the same tumor removed from her parietal lobe last October and she is doing fabulous. Most research says these are pediatric tumors but apparently they happen in adults to.. That is unless I had the tumor since childhood and just did not know. I wish you all the best. If you have any questions please feel free to reach out to me.

Sincerely,
Jessica

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Hi everyone, my husband had surgery to remove a grade 1 pilocystic astrocytoma 4 years ago. The tumour was located in his right frontal lobe. He was 32. We still go for yearly MRI scans.

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This fall, it will be 25 years since my surgery at Mayo Clinic to remove a grade 1 pilocytic astrocytoma. The tumor was located in my lateral ventricle. I required no external treatments. My doctor thinks I was born with it. Seizures and then double vision were the two major symptoms I was having when they first discovered it. Since my surgery, I was seizure free until three years ago. I had another grand mal seizure, so I went back to Mayo Clinic. The diagnosis was head trauma, brain surgeries & scar tissue. (I was afraid the tumor had come back.) Other than being on phenobarbital again, I’m doing pretty darn good! Yes, these tumors are rare!

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