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.

My wife Ann was diagnosed with an adult astrocytoma of the basal gaglia in 1992 at age 44.She had radiotherapy treatment at the time but developed froto temporal demtia which was diagnosed in 2010. She now presents with symptoms that are essentially like Parkinsons and her consultants believe this may be the result of her original tumour and subsequent radio therapy at the time.I thought I would post this note by way of encouragement to anyone as here we are some 26 years after diagnosis and she is still with us despite her current problems.Regards.

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@norman615

My wife Ann was diagnosed with an adult astrocytoma of the basal gaglia in 1992 at age 44.She had radiotherapy treatment at the time but developed froto temporal demtia which was diagnosed in 2010. She now presents with symptoms that are essentially like Parkinsons and her consultants believe this may be the result of her original tumour and subsequent radio therapy at the time.I thought I would post this note by way of encouragement to anyone as here we are some 26 years after diagnosis and she is still with us despite her current problems.Regards.

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Hello, @normal615, and welcome to Mayo Clinic Connect. I am so grateful you posted this note of encouragement that despite her current problems, your wife is still with you 26 years after diagnosis with adult astrocytoma. That is wonderful.

What are the Parkinson's-like symptoms she is experiencing, @norman615?

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@lisalucier

Hello, @normal615, and welcome to Mayo Clinic Connect. I am so grateful you posted this note of encouragement that despite her current problems, your wife is still with you 26 years after diagnosis with adult astrocytoma. That is wonderful.

What are the Parkinson's-like symptoms she is experiencing, @norman615?

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Helllo Lisa,Thanks for your comments and in response to how Ann presents at the moment and particularly Parkinson's.Ann has severe motor problems with a pronounced right sided weakness.Walking without support is very limited and without support she would fall.Her cognitive fuctions are also impaired and she also suffers from aphasia which is sad as she was very articulate in earlier times and this causes her much frustration.The brain tumour is located in the basal ganglia and inoperable due to the risks with removal and she subsequently had 16 sessions of radio therapy "to knock the stuffing out of the tumour".She does not have any pronounced tremour but has problems with grip to her right hand so things like brushing her teeth and eating are problematic.
Her doctors essentially describe her features as Parnkinsonism,there is also some brain atrophy,she needs full assistance in the Bathroom with her personal care.
The above is generally how she presents.We will have been married 50years this coming Christmas and have enjoyed extensive travelling in the past but this is now impossible which is very sad.In all this however we count our blessings as parents and grandparents.

I trust the above is of interest.

Best wishes.

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@norman615

Helllo Lisa,Thanks for your comments and in response to how Ann presents at the moment and particularly Parkinson's.Ann has severe motor problems with a pronounced right sided weakness.Walking without support is very limited and without support she would fall.Her cognitive fuctions are also impaired and she also suffers from aphasia which is sad as she was very articulate in earlier times and this causes her much frustration.The brain tumour is located in the basal ganglia and inoperable due to the risks with removal and she subsequently had 16 sessions of radio therapy "to knock the stuffing out of the tumour".She does not have any pronounced tremour but has problems with grip to her right hand so things like brushing her teeth and eating are problematic.
Her doctors essentially describe her features as Parnkinsonism,there is also some brain atrophy,she needs full assistance in the Bathroom with her personal care.
The above is generally how she presents.We will have been married 50years this coming Christmas and have enjoyed extensive travelling in the past but this is now impossible which is very sad.In all this however we count our blessings as parents and grandparents.

I trust the above is of interest.

Best wishes.

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Hello @norman615

As someone who has Parkinson's, I so appreciated your post. You and your wife have achieved a remarkable attitude! I am glad that you can look back on your travels and let those memories carry you through this time.

If I may ask, what type of treatment has been used to help your wife over the past years. Has it been traditional Parkinson's meds and physical therapy?

Congratulations on your upcoming 50th anniversary. You both sound like very special people!

Liked by Lisa Lucier

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@hopeful33250

Hello @norman615

As someone who has Parkinson's, I so appreciated your post. You and your wife have achieved a remarkable attitude! I am glad that you can look back on your travels and let those memories carry you through this time.

If I may ask, what type of treatment has been used to help your wife over the past years. Has it been traditional Parkinson's meds and physical therapy?

Congratulations on your upcoming 50th anniversary. You both sound like very special people!

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Hello Lisa,

Thanks for your note and to answer your question on treatment.The onset of her problems since 1992 have been very very gradual and other than watchful monitoring Ann has not had any medication or particular treatments.We now see her neurologist annually and if deemed necessary scans will be undertaken.These currently show there has been marginal growth with the tumour. This is probably due to calcification as a result of the original radio therapy.We have also from time to time seen the neuro psychologists as part of her monitoring regime in terms of her cognition and general wellbeing.

I hope your not having too many problems with you condition and for our part we have been lucky with coping with a relatively low grade brain tumour rare in adults but sited in a part of the brain that effects motor and cognition.I'm pleased that you appreciate my posts,they are done just to share our experiences and hopefully be of encouragement.

With every good wish.N.

Liked by Lisa Lucier

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@norman615

Hello Lisa,

Thanks for your note and to answer your question on treatment.The onset of her problems since 1992 have been very very gradual and other than watchful monitoring Ann has not had any medication or particular treatments.We now see her neurologist annually and if deemed necessary scans will be undertaken.These currently show there has been marginal growth with the tumour. This is probably due to calcification as a result of the original radio therapy.We have also from time to time seen the neuro psychologists as part of her monitoring regime in terms of her cognition and general wellbeing.

I hope your not having too many problems with you condition and for our part we have been lucky with coping with a relatively low grade brain tumour rare in adults but sited in a part of the brain that effects motor and cognition.I'm pleased that you appreciate my posts,they are done just to share our experiences and hopefully be of encouragement.

With every good wish.N.

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@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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@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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