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.

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@hopeful33250

@norman615
Thank you for continuing to post, Norman. Could I ask how your wife's brain tumor was diagnosed? Was it by a traditional MRI of the brain or something else to see the basal ganglia?

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Diagnosis was by MRI brain scan followed by a biopsy of the basal gaglia.The MRI was the result of how she presented in the first instance.She was having problems with vision,her hand writing had become very small and her memory impaired.She also tumbled downstairs at a friends home for no apparent reason or explanation which needed a visit to the neurologist.The small handwriting triggered the neurologist to obtain the MRI scan.

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@norman615

Diagnosis was by MRI brain scan followed by a biopsy of the basal gaglia.The MRI was the result of how she presented in the first instance.She was having problems with vision,her hand writing had become very small and her memory impaired.She also tumbled downstairs at a friends home for no apparent reason or explanation which needed a visit to the neurologist.The small handwriting triggered the neurologist to obtain the MRI scan.

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@norman615
She did begin with some very dramatic symptoms. That must have been very frightening for her.
If you care to share more about her vision problems, did it involve double vision or something else?

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Her symptoms developed slowly over time and not suddenly.Her eyesight wasn't good and both the neuro surgeon and neurologist decribed her visual features as incongruous.She had a battery of visual tests mainly focusing on her peripheral vision.She described her vision at the time as seeing a split image? The eye specialist who we subsequently consulted suspected that the brain tumour had "nibbled into her optic nerve". The way our vision works is quite complex I believe.The image we see through the eye taking a crossing path through the brain.
Ann took it all in her stride and we have had some wonderful help from some wonderful people.My advice would always be,trust the medicos'; there are some very clever people out there.

Best regards.

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Yes in 2004, I am now 55 scared and sad went thru surgery in 2015 and radiation and it still got a bit bigger at MRI last week, they are talking chemo pills anyone gone thru this thanks Lorena not sure how I found this site

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@lorena1963

Yes in 2004, I am now 55 scared and sad went thru surgery in 2015 and radiation and it still got a bit bigger at MRI last week, they are talking chemo pills anyone gone thru this thanks Lorena not sure how I found this site

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Hello @lorena1963
Welcome to Mayo Connect. I am glad that you found this site.
Could you share the name of the chemo pill your doctor is considering? Perhaps another member will be familiar with it and respond to your question.
What is your most difficult symptom right now?

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@hopeful33250

Hello @lorena1963
Welcome to Mayo Connect. I am glad that you found this site.
Could you share the name of the chemo pill your doctor is considering? Perhaps another member will be familiar with it and respond to your question.
What is your most difficult symptom right now?

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It is Temozolmide I think. The biopsy says one thing along with the spectroscopy but the tumor is still growing they think. It's being scared. I am no more special then anyone else. They found it in 2004 and watchu for so long. I am in uncharted territory for myself. Not to be long winded, I left my husband in February as he was addicted to opiods lost our house and a bunch of other things happened. Just really scared of being on my own I am so blessed. I have a wonderful church family and living situation with one of the families.

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I don't want to sound like I am whining I am blessed

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I was diagnosed with a Pontomedullary Pilocytic Astrocytoma in 2008. Had surgery and they took enough for a biopsy. I am one of the lucky ones so far that has minimal symptoms such as speech impediment, slight facial drooping. I am on watch and wait and no further growth since the operation. My NO has me coming in every 2 years now for MRI. I did have surgery in 1977 for a cyst that was in the same location that they drained. Had to learn to walk and talk all over again at the age of 12. So 31 years later it came back as a tumor.

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@sparky0114

I was diagnosed with a Pontomedullary Pilocytic Astrocytoma in 2008. Had surgery and they took enough for a biopsy. I am one of the lucky ones so far that has minimal symptoms such as speech impediment, slight facial drooping. I am on watch and wait and no further growth since the operation. My NO has me coming in every 2 years now for MRI. I did have surgery in 1977 for a cyst that was in the same location that they drained. Had to learn to walk and talk all over again at the age of 12. So 31 years later it came back as a tumor.

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@sparky0114, welcome to Connect. That must have been frightening to have to learn to walk and talk all over again at age 12. Do you remember vividly?
Quite incredible that the malignant tumor is causing fewer side effects.

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@godofredo

My daughter had low grade pilocytic astrocytoma 14 years ago came back again as another low grade pilocytic astrocytoma now she is 36 years old no symptoms found out on routine MRI.She is back to work no symptoms can drive again but MD wanrs to start her on Mekinist a clinical trial.I have concern beacause of the side effects .

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@godofredo
Just wondering how your daughter is doing? Was her surgery a success?

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@colleenyoung

@sparky0114, welcome to Connect. That must have been frightening to have to learn to walk and talk all over again at age 12. Do you remember vividly?
Quite incredible that the malignant tumor is causing fewer side effects.

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Hi Colleen. I do remember it being scary for me as a child but I also didn't really understand all of it. I didn't know if I was going to be "normal" again or not! I remember my nurses and how wonderful they were to me. Also my grandma was by my side almost every day at the hospital which was a couple of hours away from her house. I don't remember the procedure or pain much. The tumor I have now is benign so the side effects I have now are from my 1977 surgery for the cyst. I didn't really have any additional ones after my surgery in 2008.

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@sparky0114

Hi Colleen. I do remember it being scary for me as a child but I also didn't really understand all of it. I didn't know if I was going to be "normal" again or not! I remember my nurses and how wonderful they were to me. Also my grandma was by my side almost every day at the hospital which was a couple of hours away from her house. I don't remember the procedure or pain much. The tumor I have now is benign so the side effects I have now are from my 1977 surgery for the cyst. I didn't really have any additional ones after my surgery in 2008.

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Weird, I found this thread because I was searching for “pain above eyebrow”. Huh. But, yes I did have a pilocytic astrocytoma, found at age 37! I had one seizure and went to the E.R. The CT scan did not see anything, but they recommended that I make an appointment for an MRI. The MRI found a “spot” or a “lesion,” as it was referred to, in my left temporal lobe. The neurosurgeon I spoke to didn’t seem too knowledgeable or experienced with brain tumors, so I decided to go to Mayo, and I am so glad I did. My Mayo brain tumor experts did not know what type of tumor I had. It was estimated to be low- or mid-grade. I asked about biopsy, but the surgeon said that in my case a biopsy would be just as invasive as a surgery to attempt to remove the tumor. Luckily my tumor was relatively small, so it was up to me whether or not I wanted surgery. I decided to go for it: I had good health insurance, and I wanted to fight the thing before it had time to get any worse. The tumor was 100% removed, and it turned out to be pylocytic astrocytoma. So, no radiation or chemo needed. I can’t believe how lucky I was. Now my only issues are that I have to stay on anti-seizure medication, I have some muscle atrophy in my right temple (cosmetic issue), and I get some headaches in my left temporal area. Oh, I found out that I am not eligible to donate bone marrow, but I am still eligible to donate blood.

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