HAS ANYONE WITH (AN) IN THE CPA HAD RADIATION TREATMENT?

[Vivian B.]

Hi there,

Just thought of something amont many things going around in my head? Has anyone out there had radiation to treat an AN in the CPA area? What were the results so far?

Vivian

[AMD]

Hi Vivian,

I had a good-sized AN in my left CPA.  I choose not to have radiation because the tumor was up against the brainstem and I was afraid of getting too much radiation to it.  I know this doesn't answer your question, but I thought I'd share my story on it.  Good luck, and hopefully someone who has had GK or CK, etc to their CPA tumor will respond.

-Amy

[Vivian B.]

Hi Amy,

Thanks for replying. Actually mine is a meningioma initially thought to be an AN but surgeon and Neurosurgeon both said that they are treated similarly because they are of the same pathology. Thanks for sharing your story.

Vivian

[joebloggs]

Hi Vivian,

Just answered your other post re differences between CPA meningiomas and AN's.  My AN was predominantly in the CPA and was a fair size too.  Like Amy I decided against radiation as mine was pushing a fair bit into the brainstem and the potential for swelling after the radiation was too risky for me.  I believe it is an excellent non-invasive option for smaller tumours however.  I hope someone can help you who has had the treatment for a meningioma.

best

JB

[mk]

Hi Vivian,

Apart from yours truly, there have been quite a few. Here are some names that I can think of right now: Lorenzo,  Sue, Tumbleweed, Francesco (fbarbera) and more recently Carter. Francesco has created a very helpful website describing his decision process:
 www.myacoustic.org
I am not aware of anyone with a meningioma though - sorry

Marianna

[Vivian B.]

Thanks Marianna.

[Vivian B.]

To Joebloggs,

Hi there,

I was told by my neurosurgeon that any AN in the CPA area is considered a meningioma and that it has to do with location and both treated the same way. Did your doctors every tell you that yours may have been a meningiomas, did they send it for pathology?

Vivian

[joebloggs]

Hi Vivian,

Not sure about the information your neurosurgeon gave you.  Mine has been sent for pathology but not sure of the outcome of that as surgery was less than two weeks ago.  The docs were 100% sure of mine being an AN after looking at the scans... it had grown to a size that made it spill out quite a bit into the CPA, but I think a little bit was still tucked up inside the IAC.  They said it was an acoustic neuroma but it didn't have a classical appearance.  All good though. As far as I'm aware, unless a tumour has originated from the meninges then it's not considered a menigioma.  It's all about the cells it's originated from rather than where it ends up when it grows... if anyone else has any info on this feel free to chime in.

Cheers

JB

[Vivian B.]

Thanks JB

Just trying to get all the information I can and continuing to get scared at the same time.

Vivian

[joebloggs]

Try not to get too scared Vivian,

We're all proof that you can get through it and have a fabulous life! It's a tremendous journey and although it doesn't feel like it now, in a while when you make your treatment decision and get treatment you'll feel fab like me!!!  Sometimes it's a good idea to take a step away from the research for a week or so just to have a breather then get back to it.  The first two weeks after diagnosis I was like a professional internet researcher and it sure wore me out!

Take care

JB

[Vivian B.]

Hi JB,

That's exactly how I feel. I have been totally obssessed, depressed, scared, confused on memory overload from all the reading I am doing. I go up to sleep and come down again after 10m and start reading and going on forums. It's getting crazy. I agree sometimes you need to step back I may have to do so for a week for my own sanity. I like to be on the forum though, it's comforting.

Thanks again.

Vivian

[AMD]

Vivian,

my docs never called it or mentioned meningioma.  they were sure it was AN because of where it started (way up in IAC).

-amy