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cleahy85
@cleahy85

Posts: 5
Joined: Mar 25, 2016

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

Posted by @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.

REPLY

Hi @cleahy85, welcome to Connect.
Should you like to get a second opinion at the Mayo Clinic please contact us. The contact info can be found at this link http://mayocl.in/1mtmR63. Mayo Clinic in Rochester, Minnesota, ranks No. 1 for neurology and neurosurgery in the U.S. News & World Report Best Hospitals rankings. Here is further information. http://www.mayoclinic.org/diseases-conditions/glioma/diagnosis-treatment/expertise-ranking/orc-20129512

In particular, Mayo’s Dr. Derek Johnson has conducted research in Pilocytic astrocytoma survival in adults http://www.ncbi.nlm.nih.gov/pubmed/22367412

Please let me know if I can help further. I’m also tagging @audrapopp who was treated at Mayo Clinic for Anaplastic Pleomorphic Xanthoastrocytoma, a rare brain tumor, and can tell you more about her experience there.

Colleen, thank you very much! That is very re-assuring as we are coming to realize it is hard to find anybody who has any experience with this type of tumor. I really appreciate your response. I think we will be following up by contacting the Mayo Clinic directly.

My brain tumor, although not the same, is equally rare and I’m told by my neuro-oncologist there they see 3-4 new cases of my tumor type yearly. I can assure you that Mayo has most likely treated others with this tumor type and glad you are considering a second opinion there. Good Luck!!

Diagnosed with a grade one pilocytic astrocytoma at age 27. Had two surgeries to get biopsy and remove bulk. I had my second surgery at Mayo performed by Dr. link. I also had proton radiation therapy at mayo. I am coming up on my 3 month check at the end of August.

Liked by Ali Skahan

Welcome to Connect @rossam. I’m sure @cleahy85 will appreciate having another person with a similar diagnosis to share with, especially someone who has had experience with Mayo Clinic as they are considering going there. Can you tell us more about your treatment with proton beam radiation therapy?

My 19 year old daughter finally had a biopsy in October and we learned that her tumor is a Grade 1 Pilocytic astrocytoma. What additional information can you share concerning your diagnosis and treatments? She is a college student and has been dropping things and seeming more clumsy than before. Her numbness, dizziness and headaches have all subsided over the past 3 weeks. Her next appointment is Dec 22 with a Neuro-Oncologist. At that time she will have another MRI and we’ll hear about options for treatment.

@rossam

Diagnosed with a grade one pilocytic astrocytoma at age 27. Had two surgeries to get biopsy and remove bulk. I had my second surgery at Mayo performed by Dr. link. I also had proton radiation therapy at mayo. I am coming up on my 3 month check at the end of August.

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Hi Anna, How was your 3 month check up? My daughter’s tumor is in her right thalamus so they have initially said it would be too risky to try to surgically remove. Did you have radiation after the surgery to remove? Since my daughter is 19, you are relatively as close in age. Anything you are willing to share would be helpful. How much has your life been disrupted by your experience? My daughter is a Sophomore in college.

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 ….

Liked by hjlucchi

@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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@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.

@markelia

My 19 year old daughter finally had a biopsy in October and we learned that her tumor is a Grade 1 Pilocytic astrocytoma. What additional information can you share concerning your diagnosis and treatments? She is a college student and has been dropping things and seeming more clumsy than before. Her numbness, dizziness and headaches have all subsided over the past 3 weeks. Her next appointment is Dec 22 with a Neuro-Oncologist. At that time she will have another MRI and we’ll hear about options for treatment.

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@markelia I think your daughters situation is a little different from my Dad’s due to his age. Have they decided on treatment options or done a biopsy?

@markelia

My 19 year old daughter finally had a biopsy in October and we learned that her tumor is a Grade 1 Pilocytic astrocytoma. What additional information can you share concerning your diagnosis and treatments? She is a college student and has been dropping things and seeming more clumsy than before. Her numbness, dizziness and headaches have all subsided over the past 3 weeks. Her next appointment is Dec 22 with a Neuro-Oncologist. At that time she will have another MRI and we’ll hear about options for treatment.

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@cleahy85
We expect to hear about treatment plans when we go to her appt on 12/22.

@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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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?

@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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