Author Topic: Not growth after all.....Great news to share!!  (Read 3332 times)

windy

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Not growth after all.....Great news to share!!
« on: August 20, 2012, 09:22:49 pm »
I am four years out now from GK treatment and like to post when I receive my MRI news. My post GK path has been a rocky one to say the least. Today I FINALLY received news of a 1 MM shrinkage. It is the first time I have heard the news. I have heard things like, possible growth, definite growth, etc... since 2010. Now, to hear of a 1 MM shrinkage at the fourth year is thrilling. I am walking on cloud nine! Truly, I have an answered prayer today and am feeling grateful beyond measure.

The neurosurgeon who has read my MRI's since 2008 came into the office today with a big smile and told me he that the news was "splendid". He told me he hardly ever got to share good news with patients (his speciality is glioma tumors) and he was so glad he could share good news with me. He said if I had received more radiation or had surgery since they thought I had growth, it would have been for nothing. He told me I was back to a one year schedule and not to let anyone do any type of treatment for the tumor, as it was not necessary. I was so happy to hear the good news that I cried!

If any of you have a tumor that has questionable growth post radiation and it is not so large that surgery is a must, you might need to wait if symptoms do not surface. I did a lot of research through this forum and found some others who had tumors that settled down years down the road. Anyway, I hope this post can help someone who may be in a similar situation!! 
« Last Edit: August 20, 2012, 09:30:28 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

Jackie

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Re: Not growth after all.....Great news to share!!
« Reply #1 on: August 21, 2012, 01:52:24 am »
Congratulations Windy!!! WE love to hear about "shrinkage after treatment, even if you had to wait 4 years!! Way to go, and just keep it shrinking!!!
Blessings  to you!!!
jackie
9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

mindyandy

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Re: Not growth after all.....Great news to share!!
« Reply #2 on: August 21, 2012, 05:34:21 am »
Windy
That is wonderful news!!!! I'm glad to hear. I know we were kinda in the same boat. Hopefully from here on out you can rest assure the uncertain growth or no growth is over. LOL

Mindy
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

mk

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Re: Not growth after all.....Great news to share!!
« Reply #3 on: August 21, 2012, 06:55:03 pm »
Hi Windy,

you know how happy I am for you. Thank you for sharing your story on the forum. There are many recent GK patients and I am sure they will be very encouraged to read that positive results can be seen even 4 years after treatment.

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.

Jim Scott

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Re: Not growth after all.....Great news to share!!
« Reply #4 on: August 22, 2012, 12:57:46 pm »
Hey, Windy ~

Congratulations - well done!  :)

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: Not growth after all.....Great news to share!!
« Reply #5 on: August 23, 2012, 05:52:07 pm »
Thank you so much for your congratulations! I really appreciate ALL of your thoughtful responses!

I really hope someone who has been told more than once that they have growth following GK, or other types of radiation, can gather hope that their tumor may resolve beyond the usual amount of time. This forum gave me hope when I considered posts by others (found through searching and other forum members) who were in a similar situations. This forum and their members truly are invaluable!!   
* 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

leapyrtwins

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Re: Not growth after all.....Great news to share!!
« Reply #6 on: August 24, 2012, 05:19:14 pm »
Necrosis is very, very good.

Congratulations!!!  ;D

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways