Author Topic: regrowth- really?  (Read 15138 times)

a.m.

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regrowth- really?
« on: March 13, 2010, 07:25:19 pm »
the original tumor was a 3cm acoustic neuroma.
my 6 month mri showed another tumor, 2.5 cm.

they took another mri 3 months later to see if it was growing and it wasn't. now i'm making surgery arrangements.

not sure what's going on. i've heard all kinds of opinions at this point- mostly folks who think they didn't take the whole thing out or folks who think i have a meningioma. another doctor wants to test me for nf2.

i'm kind of sick of hearing opinions. has anyone else had a tumor that appeared so quickly?
diagnosed feb. 6, 2009

retrolab april 2, 2009
new york eye and ear / st vincent's
dr. linstrom and dr. murali
ssd, no tears

translab may 5, 2010
nyu medical center
dr. lalwani and dr. parker

doing great!

tenai98

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Re: regrowth- really?
« Reply #1 on: March 13, 2010, 08:20:21 pm »
I kinda went thru the same thing.
first dx tumor was 1.4cm
surgery wa April 7/09..where the operatvie reports the two small strands were left on facial nerve and puts it at 2cm
first post op MRI comes in at 1.6cm...huh I say...bigger then first dx
second post op MRI puts it at 1.3cm   
Now considered stable and backin wait and watch
JO
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

sgerrard

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Re: regrowth- really?
« Reply #2 on: March 13, 2010, 08:26:00 pm »
I haven't heard of one appearing that quickly. It seems more like something left behind, but then again, stranger things have happened, so who knows.

I would suggest, though, they once an AN case gets complicated, it really is time to consult with the best experts you can. McKenna in Boston, or Brackmann at House in LA, or somebody who has been at it long enough to have seen everything.

On the bright side, I am happy to welcome you to the forum.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

a.m.

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Re: regrowth- really?
« Reply #3 on: March 14, 2010, 12:14:17 pm »
hey guys, thanks for writing back!

tenai98, maybe it will shrink completely and you will never have to worry again! i think i'm gonna start a thread on home remedies.

sgerrard, i'm gonna stay in new york for this one since there's five great teams to choose from. nice to have the doctors nearby in case it turns into a long-term thing!

i checked out your knit hats and they are indeed very nice. have you considered making a summer hat? i really wanted one last year to cover up that scar, LOL!
diagnosed feb. 6, 2009

retrolab april 2, 2009
new york eye and ear / st vincent's
dr. linstrom and dr. murali
ssd, no tears

translab may 5, 2010
nyu medical center
dr. lalwani and dr. parker

doing great!

HeadCase2

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Re: regrowth- really?
« Reply #4 on: March 15, 2010, 09:09:10 am »
  Is this "new" tumor in the same spot as the original one?  Is it on the same side?
Rob
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

GrogMeister of the PBW

a.m.

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Re: regrowth- really?
« Reply #5 on: March 15, 2010, 09:09:34 pm »
yep, same spot same side.
diagnosed feb. 6, 2009

retrolab april 2, 2009
new york eye and ear / st vincent's
dr. linstrom and dr. murali
ssd, no tears

translab may 5, 2010
nyu medical center
dr. lalwani and dr. parker

doing great!

Larry

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Re: regrowth- really?
« Reply #6 on: March 16, 2010, 12:11:39 am »
a.m

Something's very fishy here. There are a number of potential issues that you should explore before making any remedial decision.

Firstly, my high level experience. i had a growth removed via middle fossa. i was told that it was all removed.  Then 6 mthly MRI's until 3 years later, the xray didn't look right to me so i queried the surgeon who said , it won't be the AN, but i persiisted and he said he'd query it with his colleagues. Some weeks later, no real news so i went to a different specialist and he said in 2 seconds - yep its there all right. I then challenged the original surgeon who told me yeah, its probably re-growth, its possible because he left the "shell of the tumor" in my head. I said - You told me that you got it all out. he said nothing so i sacked him and have been tempted to sue but don't have the menatl strength to take on the medical fraternity.

The lesson - get second opinions and get a copy of your original surgical notes not your file notes but the surgical notes.

These things can grow very quickly over night the same as they can be dormant for a long period so the growth is possible but that much that quickly - unlikely. More is the possibility that your surgeon didn't get it all out (or much of it in fact)


Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Was in watch and wait mode until Dec 2008 now must do something.
Chronologer of the PBW
http://www.frappr.com/laz

Jim Scott

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Re: regrowth- really?
« Reply #7 on: March 16, 2010, 02:30:06 pm »
Hi, a.m. - and welcome, although I'm sorry to learn about this somewhat suspicious AN re-growth that has appeared in so short a time. 

I have to agree with Laz (Larry) that something doesn't seem quite right about this.  I concur with his assessment that, for whatever reason, the surgeon may have left a lot of tumor behind. I also agree with Laz that you might wish to investigate further, as he suggested, before scheduling more surgery, or you might wish to explore the feasibility of non-invasive radiation treatment to destroy the remaining (or re-grown) tumor's DNA and by doing so, permanently stop it's growth.  Of course, the final decision is yours alone, these are simply suggestions.  I hope this works out O.K. for you.

Jim 
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Tumbleweed

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Re: regrowth- really?
« Reply #8 on: March 17, 2010, 01:20:37 am »
a.m., Jim is so highly respected around here, in part because he really knows his stuff. That said, there is no guarantee -- and I'm sure Jim would agree on this -- that radiation will permanently end a tumor's growth. The possibility of regrowth is about the same with radiation and surgical resection.

That said (again), I am a huge believer in radiation treatment and I think if surgery has already failed you once, you should consider a different type of treatment the second time around.

Now, as far as NF2 goes: my understanding is that NF2 is indicated only when the two tumors occur on opposite sides. Since your tumor (if it is indeed a second tumor they're seeing) is on the same side as the first one, you don't have NF2.

Laz's unfortunate experience points out all too well that people who choose surgery to get their AN completely removed from their head (instead of leaving a dead, irradiated AN in their head) should consider the very real possibility, however small, that the entire AN will not be removed. Sometimes the neurosurgeon will choose not to remove the entire thing in order to preserve delicate cranial nerves the darn thing is adhering to; and they may not be able to see that's the case until they're deep into the surgery. Even a small amount of residual tumor can regrow. And with radiation, even a small amount of tumor that survives the radiation can regrow. It's all a big crapshoot.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Doc

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Re: regrowth- really?
« Reply #9 on: March 17, 2010, 11:48:14 am »
In the "for what it's worth" column, 3cm of the original 4.7cm of my AN was purposely left behind during my Translab Surgery last July because of its proximity to the Brain Stem and the nerves it involves. I've since had CK in hopes of killing off the remaining Tumor whereby stopping any further growth. I'll know in Jun '10 after a scheduled MRI if CK was a success or not...I'm very optimistic. Until than, like many others, I'm in hurry up and wait mode...good at that we are!

Wishing you the best!

Take Care!
  ;)
Doc
Jul 2009: Left Translab to debulk a 5cm x 5cm AN. Jan 2010: CyberKnife Radio Surgery to combat remaining AN; approximately 3cm.  MRI Jan 12: Good progress. Last MRI Jan 13: All Good! My life got much better when I received my Scleral Lens.

ppearl214

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Re: regrowth- really?
« Reply #10 on: March 17, 2010, 11:52:28 am »
Hi Doc.... good to hear you are doing ok.

Please keep in mind (and trust me on this one... I've done the wait) that CK and other radio results really don't show end results until 12-24 mos post treatment.  Yes, certain indicators may show up earlier..... but, for 6 mos, please keep in mind, based on timing of the MRI and how the radio is doing its trick, that it may take longer to show end results.  I just don't want you to be heartbroken if you all don't see anything of significant changes at 6 mos, as it does take time for things to happen and make the stinker die its fugly death.

But, you know this *coff* Dr wishes you, Doc, continued wellness... and hang tough..........

"Dr" Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Doc

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Re: regrowth- really?
« Reply #11 on: March 17, 2010, 12:12:27 pm »
Hanging Tough as the good *cough* Doctor has Ordered!

Take Care!
  ;)
Doc
Jul 2009: Left Translab to debulk a 5cm x 5cm AN. Jan 2010: CyberKnife Radio Surgery to combat remaining AN; approximately 3cm.  MRI Jan 12: Good progress. Last MRI Jan 13: All Good! My life got much better when I received my Scleral Lens.

ppearl214

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Re: regrowth- really?
« Reply #12 on: March 17, 2010, 12:23:34 pm »
Hanging Tough as the good *cough* Doctor has Ordered!

Take Care!
  ;)
Doc

Fred belly rubs will help the waiting game for radio results.  ;D

I can share that on my post CK MRI's, at first, we saw a little darkening to start... then, down the road, we saw the edges of the growth become not as smooth,  then black splotches showing up within the growth. Now, Mark (now 8+ yrs post CK) reminded me a year or so ago, that timing of the MRI is also key.  Dr. Chang at Stanford (I believe it was Chang) had shared with him that timing of the MRI is critical as well. We could have an MRI done and it could be too early/too soon/too late to see the ultimate of its fugly death.  

Now, I just had my 4 yr post CK MRI done (see my thread in "Post Treatment" forum.... "I did a no-no" thread).... and when I peeked at the MRI before the docs (yeah, I'm guilty), I saw certain characteristics at almost 4 yrs that I didn't see in earlier MRI's, which my back up NS confirmed with me when I saw her last week.  So, here I am, just 2 wks shy of my 4 yr post-AN-CK anniversary and things are still changing......

So, for you... for your 1st post-AN-CK MRI (too many acronyms!  ::) ), sending wishes that it will start to show indicators of the ultimate goal!  :)

the waiting game stinks, but with mental strength, the good *coff* drs orders and support from all of us here, you'll be fine :)

"Dr" Phyl :)
« Last Edit: March 17, 2010, 12:25:59 pm by ppearl214 »
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Jim Scott

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Re: regrowth- really?
« Reply #13 on: March 17, 2010, 01:15:13 pm »
a.m., Jim is so highly respected around here, in part because he really knows his stuff. That said, there is no guarantee -- and I'm sure Jim would agree on this -- that radiation will permanently end a tumor's growth. The possibility of regrowth is about the same with radiation and surgical resection.

TW ~

Yes, I certainly would agree that radiation treatment cannot be guaranteed to halt a tumor's growth and I regret any misunderstanding my unequivocal statement regarding the efficacy of radiation treatment on ANs may have caused 'a.m'.

Quote
That said (again), I am a huge believer in radiation treatment and I think if surgery has already failed you once, you should consider a different type of treatment the second time around.

Another statement that I agree with and basically what I stated in my original post.  Thanks for the reiteration. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

a.m.

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Re: regrowth- really?
« Reply #14 on: March 17, 2010, 02:12:04 pm »
oh but i am too young for radiosurgery. i am glad you guys have had success though!
diagnosed feb. 6, 2009

retrolab april 2, 2009
new york eye and ear / st vincent's
dr. linstrom and dr. murali
ssd, no tears

translab may 5, 2010
nyu medical center
dr. lalwani and dr. parker

doing great!

 


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