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.

Interested in more discussions like this? Go to the Brain Tumor group.

Glad to have found this community as this tumour is extremely rare in adults!

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I was diagnosed with a pilocytic astrocytoma in the right pons. It was found during a CT scan after I lost consciousness at age 31, which is believed to be for unrelated reasons. We monitored its size with MRIs regularly. It seemed to fluctuate in size from 6 to 11 mm. In 2016, at age 36, it appeared to have grown substantially, so I had a biopsy which confirmed it was a pilocytic astrocytoma, but between the previous MRI and the surgery it shrank again. I just had another MRI, and it again appears small. They told me to come back in 18 months for another MRI since it seems so stable. How common is this, for it to shrink and grow? I wonder how likely it is that it might suddenly start growing at some point in my life.

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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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Welcome to @godofredo. I moved your message to this existing discussion so that you can connect with others talking about adult pilocytic astrocytoma. Simply click VIEW & REPLY in the email and you can read the posts from members like @jbebel @pilocysticadult32 @lynda1992 @jkenser and others.

I can understand your reluctance to see your daughter suffer from side effects, especially since your daughter is asymptomatic. Might the treatment help stop the tumor from growing? How long would the treatment protocol last? Is the tumor growing?

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@colleenyoung

Welcome to @godofredo. I moved your message to this existing discussion so that you can connect with others talking about adult pilocytic astrocytoma. Simply click VIEW & REPLY in the email and you can read the posts from members like @jbebel @pilocysticadult32 @lynda1992 @jkenser and others.

I can understand your reluctance to see your daughter suffer from side effects, especially since your daughter is asymptomatic. Might the treatment help stop the tumor from growing? How long would the treatment protocol last? Is the tumor growing?

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She just had the second surgery 3 months ago

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@godofredo

She just had the second surgery 3 months ago

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From the schedule 28 days

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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!

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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.

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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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