Author Topic: No change is good news?  (Read 2539 times)

Sefra22

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No change is good news?
« on: April 27, 2009, 05:51:54 pm »
I had my second year MRI last week. My PCP's office called to tell me there was no change from last year. Last year, I was told there was only slight shrinkage, and at 6 months, there was also no change. I asked if there were any signs of necrosis, but the answer was "No, no change since last year.

I have yet to hear from Dr. Noren's office, maybe his expertise will be more enlightening. I know the goal of radiosurgery is to keep it from getting bigger, and that necrosis and shrinkage are a "bonus", but I was still hoping for better news after 2 years. 

Lisa
Lisa from Portland, Maine age 46
Diagnosed June 2006
15mm X 17mm AN right side 80% hearing loss
GK March 14,2007 Dr. Noren, Providence RI
1 Year follow-up MRI shows "slight shrinkage".
2 Year follow-up MRI shows "No Change".
3 Year follow-up MRI "stable".
BAHA surgery 4-22-09 BP100 Sept. 2009

mk

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Re: No change is good news?
« Reply #1 on: April 27, 2009, 06:06:06 pm »
Lisa,

I would say that "slight shrinkage" and "no change" is an excellent outcome. You may actually never see necrosis (darkening). Sometimes it only happens during a small window of time between MRIs, so that you might miss it. And in the medical literature, necrosis is not always reported, even if the outcome is succesful.
So I would say that your news is very good. Let us know what your doctors says.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Tumbleweed

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Re: No change is good news?
« Reply #2 on: April 27, 2009, 06:46:46 pm »
Hi, Lisa:

Marianna is correct. You may not notice necrosis at the time an MRI is taken, because it might have already occurred. The reason is that after the tumor tissue dies (becomes "necrotic"), scar tissue typically forms. And scar tissue enhances white just like living tumor tissue does in an MRI. So there might have been necrosis occurring in between MRI sessions, but by the time the next MRI was taken, the necrotic tissue may have become scar tissue and, hence, didn't show up dark (like necrotic tissue does) on that next MRI.

So don't be worried about not seeing necrosis. Your tumor might already be dead!  :)

And count yourself lucky for not having tumor swelling! At two years post-treatment, you are already past the period of greatest danger for tumor swelling to occur and are fast approaching the "all clear" point. Yours is a great report. Relax, don't worry, be happy!  :)

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

Sefra22

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Re: No change is good news?
« Reply #3 on: April 28, 2009, 06:13:21 am »
Thanks to both of you for making me feel better. It's been a busy week since I had the BAHA surgery less than a week ago. It has made my AN symptoms stronger, (I'm sure it's just temporary, due to the fatigue). I usually have so few effects, that having the tinnitus,balance issues, and lightheadedness again is a little disconcerting.
I feel much better, today,though! Well so far, it's only 8am!
Lisa
Lisa from Portland, Maine age 46
Diagnosed June 2006
15mm X 17mm AN right side 80% hearing loss
GK March 14,2007 Dr. Noren, Providence RI
1 Year follow-up MRI shows "slight shrinkage".
2 Year follow-up MRI shows "No Change".
3 Year follow-up MRI "stable".
BAHA surgery 4-22-09 BP100 Sept. 2009

Richard in Palacios

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Re: No change is good news?
« Reply #4 on: April 28, 2009, 08:32:00 am »
Hello Lisa,
I too must echo the previous responders, no growth is the best news we can get.  I am rapidly approaching my first 1 year followup MRI and have been praying all year that I hear the words "no growth" when my report comes back.  I am sorry that some of those pesky symptoms that you mention are again present.  Like you, I suspect they are only temporary and I hope you are symptom free soon.  Please let us know how he BAHA works out for you. 
Richard
Was AKA "RED in Palacios". That account now inactive. Originally diagnosed in 10/06 9mm X 3.6mm Waiting and watching.
As of 4/08 15mm X 6mm.  No longer waiting and watching.  Had SRS 6/10/08 at Methodist Hospital in Houston

ppearl214

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Re: No change is good news?
« Reply #5 on: April 28, 2009, 12:10:03 pm »
Lisa,

:) :) :) :) :) :)

Terrific update! ditto what others have said! Congrats on this update and good news!

Phyl
"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: No change is good news?
« Reply #6 on: April 28, 2009, 01:35:12 pm »
Lisa ~

You were correct when you stated that 'no growth' is the basic goal for radiation treatment on an acoustic neuroma. You're also correct in stating that seeing shrinking and/or necrosis is a bonus.  'Tumbleweed' offered a good explanation of why this MRI may not have shown necrosis but that you may still have a dead tumor, which is quite likely.  Congratulations!  :)

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.