ANA Discussion Forum
General Category => AN Issues => Topic started by: satman on August 26, 2008, 09:43:57 am
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so my question is,where do most of the re-growths come from.
i had trans-lab with 100% removal,am i still a canidate for re-growth or is that basically something that pertains more to gk,ck,etc...
i know there are no guarantees but i was just wondering.
curious because i had my 2nd 6 month mri and my dr. is on vacation so i have to wait for my readings so this came to mind.
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Hey satman.
My understanding, even as recent as yesterday in speaking with my AN treatment team, that potential regrowths can occur with any AN patient, regardless of type of treatment they have for their AN's. These schwann cells that AN's are comprised can be terrible buggers when they form an AN.. and one reason why, as AN'ers, we should maintain head MRI follow-ups down the road, even post treatment, to make sure there are no others that decide to crop up. My dr (yesterday) reminded me that the chances are slim, but the chances are there and that is part of the AN reality. I don't allow it to be foremost in my mind... I keep it tucked away, knowing... there are slim chances of it occurring, but yes, for some, it can. I know of some that had regrowths (many that participate here on the forums)... and I try not to allow it to consume my thoughts.
Hoping this answer helps.
Phyl
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i always thought regrowth only happened if they kept abit of your tumour behind e.g to save the facial nerve, in scotland they only scan you up to about 10 years after AN removal, but i think i will be paying for private mris if that is the case.
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thats kind of what i thought,but i guess that would be to easy.
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Even if the surgeon says total removal, there is always a chance that they may have missed a piece, but with an experienced AN surgeon the risk should be very low. Based on the posts I have read the MRI follow-up protocol varies widely from surgeon to surgeon.
In my case I had translab with Dr. Jackler at Stanford 4 years ago with total removal. I had a follow-up MRI at 1 yr, and then another at 3 yr. At my 3yr appt. Dr. Jackler said everything looked clean and I didn't need to see him again.
I'll probably try to get a another follow-up MRI in a few years anyway for my own piece of mind.
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rex that deserves a drink,glad to hear it.
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Satman,
I think Phyl is right, once we hear an AN diagnosis, we will always have to worry about regrowth even after treatment. During AN treatment, especially surgery, the AN's blood supply is disrupted, so even if a few AN cells remain they may not be able to grow.
The risk of regrowth is small statistically, and the risk of many other things "taking us out" is higher, so we shouldn't worry to much. But every time I go for a follow-up MRI, it's difficult to not worry a bit. Perhaps it's just echos of receiving that first MRI report.
Regards,
Rob
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Hi Guys,
My surgeon left behind a small 2-5% of tumour to save the facial nerve. He called it a small piece of rind, I am hoping that because it was debulked that that piece just dies. I will keep you posted I have an MRI September 23. My post MRI there was some swelling and surgicel (whatever that is?) so it was not a very accurate reading of what was left.
Michelle ;D
Praying for small piece of rind to die and facial nerve to live!!!!!
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Hi Satman, sorry to hijack the site to talk to Rex.
Hi Rex, did you say that you had an MRI 1year after surgery and then another one at year 3 ?. After my 12 month MRI my Dr told me not to come back for 2 years. i am starting to feel unconfortable about waiting that long. I called the clinic to talk to the Dr and was told he would call me back. That was about 2 months ago and he never called back. My insurance no longer covers the Dr's who did my surgery so I am thinking about going to Stamford CA. Does anyone have any suggestions for someome good in CA [ not at House ]
Thanks Lainie.
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satman -
thought I'd chime in with what I know.
My docs (neurotologist and neurosurgeon) told me that they removed the entire AN during my retrosigmoid surgery. However, I have been told that I still have a 1-2% chance of regrowth.
From what I understand, and someone here already said, apparently there is a chance that a very small piece of the AN could be left behind even though the docs think they got the entire thing. I read somewhere that even a cell that is left behind could grow - the odds aren't big, but they do exist.
Jan
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Everyone is right - re-growth is caused by one of two things (apart from rotten luck).
1. the surgeon didn't take it all out for a specific reason 9usually facial nerve preservation)
2. the surgeon missed a bit and may have thought he/she got it out but didn't
Overall, just gotto be unlucky.
laz
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I read somewhere that even a cell that is left behind could grow - the odds aren't big, but they do exist.
Especially since that is how the AN got started in the first place.
Steve
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Just thought I'd add my 2 cents worth - my doctors do an MRI at 4-6 months post surgery and then annually for at least 5 years as standard protocol. I think all surgeons have their own follow up protocol - and ultimately, we the patients will make the final determination. In my case, I will continue to have annual or bi-annual MRI's forever - if I ever get a regrowth I want to know about it early enough to have options. Period!
Debbi, less than two weeks from my first f/up MRI...
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I read somewhere that even a cell that is left behind could grow - the odds aren't big, but they do exist.
Especially since that is how the AN got started in the first place.
Steve
Great point, Steve. For some strange reason, I never thought of that :P - but it makes perfect sense.
Jan
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And now for my question regarding just where the heck did my original AN come from? A "wrinkle" on my chromosome? Maybe the surgeons did remove all the cells, but what about it returning due to being "unlucky" as Lary points out? Twice unlucky perhaps? :-\
I will be going yearly until someone tells me enough is enough.