Should Gamma Knife be repeated?

[gkwoman]

I was treated with Gamma Knife in late 2008 for a 2.6 cm AN. At the six month mark a repeat MRI  showed that the AN was down to 1.8 cm and showed necrosis in the center.  At 21 mos, post-GK it was still 1.8 cm but appeared to be slightly beginning to move away from the brain stem and showed additional necrosis.   A follow up MRI at 32 mos. has shown an increase in size to 2.1 cm and brain stem compression. I am to have a repeat MRI in about 7 mos. and am trying to prepare for the worse case scenario - a definite confirmation that the tumor is indeed progressing. Despite this probable setback, I am still very pro-Gamma Knife.  I am looking for anyone who may have had a repeat Gamma Knife or anyone who may know if it is possible or advisable.  I have read that it may be repeated and also that it should not. My neurosurgeon did not think it would be a problem to repeat it if becomes necessary. My hearing in the affected ear is already negligible and aside from preserving my life obviously, my MAIN concern is my facial nerve.  I have some facial paresis and do not want it to become worse. Also, if microsurgery does become necessary does anyone know where I can find a list of surgeons with considerable experience removing irradiated tumors? Thank you,  I appreciate any information.

[Vivian B.]

Hello,

Welcome to the forum. I am glad you joined us as you will find a lot of information here. I also had GK in 2009, and now going for yearly MRIs. I am sorry to hear that the tumor may be growing but don't despair. I know it's easier said than done but as you know and as you may have seen the variance in experiences in this forum that everyone has done fairly well with whatever treatment they have chosen . As far as repeat GK, I am actually not sure and I am sorry I can't provide more information on this. I have not seen anyone on the forum had repeat GK but I have seen repeat CK. Whether or not at this point you can do repeat GK, I think it's important to determine what the best treatment would be in your case and this would need to be discusse with your Neuro. The decision may have a lot to do with the way the tumor is growing and specially if it is pressing on the brainstem.  In any case, I am with you in that I would also choose GK again but you need to take other things in to consideration the second time around specially if the tumor shifted. It is also possibe it did no grow at all. We will keep our fingers crossed. Best of luck. Keep up posted.

Vivian

[AnnR]

I just went back for my six month post GK MRI and neurosurgeion visit.  GOOD news!..the tumor is dying from the middle and now you can see the vast difference in the before and after GK. 

[windy]

Hi GKWOMAN,

I, too, had growth that showed on my MRI last year in 8-10, two years post GK.  I was advised by my neurosurgeon to not have a repeat of GK, as the risk of cancer may be too great.  He said he did not feel there was enough statistics to go by at this time.  I had two repeat MRI's that followed in 12-10 and 4-11 that did not show growth.  In regard to a list of microsurgery physicians, you might want to post this question in the microsurgery treatment options if you have not already.  The members are a great source of information!  I wish you the very best!

Windy   

[ppearl214]

Hi GKWOMAN,

I, too, had growth that showed on my MRI last year in 8-10, two years post GK. I was advised by my neurosurgeon to not have a repeat of GK, as the risk of cancer may be too great.   He said he did not feel there was enough statistics to go by at this time.  I had two repeat MRI's that followed in 12-10 and 4-11 that did not show growth.  In regard to a list of microsurgery physicians, you might want to post this question in the microsurgery treatment options if you have not already.  The members are a great source of information!  I wish you the very best!

Windy   

Windy
Was this your dr at UPMC that noted this to you (what I highlighted in red) and if yes, which? I had the pleasure to hear one of the UPMC GK drs speak at this year's ANA Symposium in Cinci during a Radiation Workshop where many different radiation options were presented at one time and what you are referencing was not noted by UPMC..... it was noted GK could be done again and all dr's at the discussion/workshop noted that the risk of cancer was so low.... benefits outweighing risks pretty well (but not always) ruled it out.

Please keep in mind that the standard "total margin of error" for all head MRI's is +/- 2mm, thus, your's was within that "Total margin of error," which can be based on many different reasons, such as different radiologists/dr's reading the films different from one another, different type of "slices" for each view, different magnets used, etc, thus, the "total margin of error" exists.  Your "growth" is within that "total margin of error" and your last MRI not showing a difference (thank goodness! ).  Like you, my last MRI (at my 5 yr post CK treatment) showed a 1mm growth but...... I had/have to keep the total margin of error in mind and didn't panic when I saw it on the report.......... something we have to learn to adjust...... so, I'm curious what your NS vs the radiologist is noting..... only for curiousity sake, nothing more.

thanks.
Phyl

[windy]

Both the UPMC doctor and UAB doctor reviewed the same MRI from 8-10 and described it as "growth".  Both doctors told me last year that it was "not normal".  I was told by the UPMC doctor that they saw growth of my type in 4% of cases with a 2% chance of resolve.  Trust me, I did not want to hear the word growth.  The UAB doctor was the doctor that indicated cancer might be a possible risk for a second GK treatment.  He does GK on a weekly basis, but doctors vary in their opinions, of course.  I guess the bottom line is you have to decide what you want to do with the information you gather personally from various sources.   

[ppearl214]

I guess the bottom line is you have to decide what you want to do with the information you gather personally from various sources.

... and that is exactly what we try to note around here! Spot on!

I know you are going to do what is best for you and this info you are gathering.  I know you are doing all of your homework....... thought/suggestion.  Have you inquired to the cyberknife.com forums?  I don't mention it for CK.... but, the dr's there that volunteer their time (Dr. Medbery and Dr Spunberg, in particular) perform CK and GK all the time and have been very helpful/informative in potential situations as you note. It may be worth tossing it to them to get their take on it.....

Hang in there!
Phyl

[windy]

Excellent suggestion Phyl about the CK volunteer doctors.  I have contacted Dr. Medbery since my GK about some issues and he was so helpful!  I like the fact that the doctors do both GK and CK, as well.  Their volunteer service is a wonderful service they extend to others.

I wish you the best gkwoman!  Please keep us informed!