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Old 06-23-2006, 08:08 PM   #1
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DOS1973 HB User
Low grade astrocytoma

My step daughter just had surgery to remover a mass and we just got the pathology report back. It said was she has is a low grade astrocytoma. There is still part of the tumor in her brain because of were it was located they were not able to get it all out.

From my research (on the net) I did find that the low grade form of this tumor is considered benign (very good news) but the statistics for reoccurance and becoming malignant are quite scary.

Just wondering if anyone here is dealing with/has delt with this type of tumor.

She's had a hard time recovering from the surgery and is just now starting to come around. She's not talking or eating and they're not sure yet if she's suffered some kind of brain damage from the surgery.

 
Old 10-23-2007, 12:12 PM   #2
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mkb30030 HB User
Re: Low grade astrocytoma

Hello, I have been dealing with a mass, (which is considered inoperable)with the same pathology, for almost two years. It is vey scary considering some of the statistics suggesting reoccurance. Depending on where she is getting treatment, may depend on what they recommend. If it is a research facility, they may have clinical trials offering, most likely, oral chemo...low doses...for say a year. MR scans every 3 months to monitor. I chose to go with a controversial treatment which has kept me stable, so far. Leap of faith, for sure. I am happy to discuss with you. I just figured out how to log on to these things and am beginning to sort of look for others living with similar chronic challenges, myself....Best wishes and many prayers.....oh, and btw, I had a shunt placed and it was really bizarre getting used to the brain surgery thing. I can't imagine what she must be going through with an even more invasive procedure....The good news is that the brain is fairly accommodating/resilient so hopefully, in time she will come around. Day at a time and sometimes second at a time!!

Last edited by mkb30030; 10-23-2007 at 12:27 PM.

 
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Old 10-23-2007, 08:30 PM   #3
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kimberleydust HB User
Re: Low grade astrocytoma

HI mkb30030 & DOS1973

I noticed DOS that it is 2006 since you posted so hope all is going well with your daughter. I have only just found this forum too and also looking for others with the same type of tumour as mine. I wonder where your tumours are situated in the brain? Mine is a Pilocytic Astrocytoma which is classed as benign and Grade 1 Astro. It is slow growing however the past 12 months (that we know of) it has started to grow a bit quicker. Apparantly it depends on a few factors as to how quick they may grow. Whether you are a child or adult, where it is positioned plus treatment etc.

Mine is in the brainstem - it is pressing on the pons, medulla and into the cerebellum through the floor of the fourth ventricle. This is one of the worst places to have any type of tumour.
I had surgery to take a biopsy and it took me quite a while to pick up too. I am left with double vision and my balance issues are worse now but that could also be from the growth of it. My leg co-ordination is getting worse.

wonder what your symptoms are? My main problems are my eyes with double vision and when I move mey head from side to side my eyes don't track properly and I get Nystagmus.
Balance issues and co-ordination, weird feelings in my legs. Fatigue is chronic and lack of motivation.
I also have clinical depression which has been ongoing since my early teens.

They told me I could have had this since I was a child but don't really know.
My neurosurgeon won't operate again due to the high risks and they won't do radium unless the benefits outweigh the risks. I am in the process of seeking a second opinion.

I am also experimenting with different alternative things. gotta do something eh!

Looking forward to hearing from you both and sharing our experiences.

Kind regards

 
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