Author Topic: Was told FSR treatment failed!  (Read 3799 times)

clarmst

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Was told FSR treatment failed!
« on: August 05, 2010, 07:40:52 pm »
1 1/2 yrs ago my radiation oncologist advised that my 2006 FSR treatment was a failure and surgery was my next option.  Each MRI since that time had indicated growth.  I wasn't excited about surgery so I decided to wait another 6 mos.  The next MRI (8-09) indicated the tumor was stable with no measurable difference.   

Now a year later, my MRI this week shows for the first time that it is smaller!  In one year the measurements went from 2.5 x 2.1 x 2.2. to 1.6 x 1.5 x 1.6.

I'm very happy about this news and wanted to share!
Dx'd left side AN, May 06
Neurotologist - Dr. Bradley Thedinger
CyberKnife treatment - Menorah Hospital - Dr. Hughes - July 06
MRI's indicate growth
Dr. Hughes declares treatment a failure - March 09
Aug., 09 MRI - tumor "stable" with no additional growth!
Aug., 2010 - MRI - tumor is smaller!

moe

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Re: Was told FSR treatment failed!
« Reply #1 on: August 05, 2010, 07:49:56 pm »
Wow!
What a pleasant surprise! Does this mean you can Wait and Watch another 6 months?
I hope so. Glad to hear that you are happy with the news :)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Lizard

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Re: Was told FSR treatment failed!
« Reply #2 on: August 05, 2010, 09:16:51 pm »
How exciting, you must be so relieved.  I wonder if they saw any necrosis with it.  It looks black around the AN on the MRI....you may have had a successful FSR this whole time.
Thanks for sharing!
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

sunfish

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Re: Was told FSR treatment failed!
« Reply #3 on: August 06, 2010, 07:06:02 am »
Sounds like maybe it died and collapsed inward, or something.  Whatever happened, we'll always be happy about "smaller!"
Rt. side 14mm x 11mm near brain stem
Severe higher frequency hearing loss
I use a hearing aid (Dot 20 by Resound)
Balance issues improving!!!!
Cyberknife March17, 2010
Roper Hospital Cancer Center, Charleston, SC

Jim Scott

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Re: Was told FSR treatment failed!
« Reply #4 on: August 06, 2010, 12:40:05 pm »
Connie ~

Congratulations!  This is fantastic news and we appreciate that you're sharing it with us. 

I underwent FSR for a surgically reduced AN in 2006 .  After six months an MRI indicated that the tumor had 'grown' - swollen, really.  My radiation oncologist and my neurosurgeon had me undergo another MRI three months later to check on the tumor, and by then,  it had shrunk.  Subsequent MRI scans (six months later and another, six months after that) showed further shrinkage and necrosis (tumor cell death - the goal of radiation).  I doubt this is uncommon with irradiated tumors. 

Your recent MRI report is not only a relief to you but a great inspiration for all of us.  Thanks for posting.

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.

windy

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Re: Was told FSR treatment failed!
« Reply #5 on: August 06, 2010, 05:33:54 pm »
I am so glad for you!  You just received GREAT news!

I was just told to look at your thread by MK.  I have suddenly had my tumor enlarge in my last MRI, two years post GK treatment and was not sure it was normal, at all.  I have been upset as my doctor said it was not normal, but see you have had a reduction after a number of years.  I was trying to research similar cases last night and saw where some research showed definite shrinkage occurred in patients at a five year and beyond period.  It surprised me that shrinkage would occur after so many years.

I say a big CONGRATS to you!!  Take care.
« Last Edit: August 06, 2010, 05:44:05 pm by windy »
* Diagnosed w/AN (9mm x 11mm x 9mm) - 6-10-08
* GK @ UPMC w/Dr. Lunsford - 8-5-08
* Stable MRI - Aug. 2009
* 2 MM's Growth - Aug. 2010
* Lost 60% Hearing - Dec. 2010
* More Growth?? - Wait & Watch - Jan. 2012
* 1 MM Shrinkage - Aug. 2012
* 2 MM's Shrinkage - Aug. 2013
* Slight Shrinkage - Aug. 2014

RAB

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Re: Was told FSR treatment failed!
« Reply #6 on: August 07, 2010, 12:14:17 am »
Wow.  It's a good thing you followed your intincts.  I'll bet you're glad you waited!
1.8 x 1.2 x 1 AN right side. 
Diagnosed 10/1/08
Gamma Knife 6/4/10
Penn Medicine-  Drs. Judy, Bigelow, Alonso-Basante

Tumbleweed

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Re: Was told FSR treatment failed!
« Reply #7 on: August 07, 2010, 01:05:25 am »
Congratulations, clarmst!

I have read in reports that some AN patients have had their tumor swell over three years after CK, although that's highly unusual.

It is pretty clear to me that the "growth" your doctor reported was simply swelling due to the radiation. The dramatic shrinkage occurred after the swelling phase ended, when your body began to eliminate the dead tissue. At least, this is a much more plausible explanation than failed CK followed by spontaneous and dramatic shrinkage for no apparent reason.

My case is similar to yours, although the timelines are different. My tumor swelled 33% in volume in the first five months following CK and then shrank 59% in the following six months.

I am curious what the measurements of your AN were just prior to treatment. Is it smaller now than it was right before you received CK?

Anyway, whatever the reason is for your good fortune, we all celebrate with you this wonderful outcome. Best wishes for continued good health.

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

jaylogs

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Re: Was told FSR treatment failed!
« Reply #8 on: August 07, 2010, 05:21:55 am »
That is indeed great news!! Anytime one can avoid going under the knife is a GOOD time! :)  Congrats and keep us updated!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston