6 Year Cyberknife Results

[Anomar11]

Hello All,

I have had an exacerbation of symptoms for ~6-8 weeks: earache/burning that extends to my throat and sharp stabbing pains.  These were symptoms I had prior to diagnosis and ~ up until 2-3 yrs ago.  It was unsettling as I'm 6 yrs out and they lasted this amount of time.  I had MRI a little early because of this and I'm happy to report the booger has again shrunk to 1.4 x .7 x .9 cm.  My signature shows the history.  I'm speculating that the symptoms are either the nerve was just irritated or the tumor is shrinking away from the nerve?    I do know from Dr. Chang and this board, that for some, certain pre diagnosis symptoms don't always go away and since the nerve is our "achilles heel" it can flare at times.  There was a new radiologist here in my home town who read the report and his measurement was 1.6 x 1.8 x .6.  I specifically asked for the other radiologist to read it because she was usually within the margin of error of 2 mm compared to Dr. Chang's reading.  It irks me to no end, that I have to pay for this erroneous report!  I am so grateful to Dr. Chang that he continues to read these.  I want others to know again as has been stated many times: 1.  We can have symptoms crop up late in the game and it's not necessarily due to growth and 2.  Consistency (same MD) in readings is  important.  Take care.

[Echo]

Hello Anomar11,

Congratulations!!! Always good to read about shrinkage.  Thanks for posting both your experiences 6 years out and your stats.  At 16 months post GK, I find postings like yours to be most encouraging.

Keep well,
Cathie

[Judithandrews]

I was diagnosed in 2005 and opted for radiation in 2007.  I get my annual MRIs at a hospital/doctor that is different from where I had my treatment. (In part due to the distance necessary to travel and for a period of time insurance coverage changed.). The doctor where I follow up and get MRIs has reported growth/unanimous tumor board recommendation to have it removed..I'm 8 years out from radiation treatment and currently am experiencing symptoms once again, documented additional hearing loss and facial spasms as well as dizziness/balance issues.  I have followed up over the years with my treatment physician and had reports sent to him as well.  My tumor currently measures 17x11.4x10.  Since 2009 measurements increase and now symptoms are coming back.  my Dr who performed my radiation isn't convinced that the tumor growth reported meets criteria for radiation failure...I'm not convinced that it isn't. There is room for measurement error I suppose when they move the mouse on the screen, scales are different, my head could be in a slightly different position from year to year when I get the MRIs...so by being off a mm here and there he says isn't really cause for concern.   I understand what he is saying, but it also confuses me.  Qs that I have are:  well for one it's a slow grower so how much do we expect it to grow each year...a mm here a mm there...maybe?  And why would I have symptoms 8 years out...maybe because something has changed... Like maybe it's growing and my body needs to readjust like it did before?

It just seems hard to say either way...radiation worked or it didn't, but I just feel ridiculous....I know I need to trust my doctors...and I do...but what if it didn't work?? Should I Have radiation again and follow up for another 10 years?  Has anyone ever had radiation fail?  What did you do?  I'm 48 this year...and I just feel that I'm out if control of my life and I should have just gotten the stupid thing out when I first was diagnosed.

 I've done nothing but worry the entire time since radiation 8 years ago.  I went the radiation route in the hopes of saving my hearing...but I can't hear out of my left ear, and the darn tinnitus is soooo annoying.  Sounds like crickets chirping or peepers at the pond..sometimes it's relaxing...go figure..it either drives me crazy or has me thinking about sitting on the front porch swing at sunset in the summertime!

My treatment physician is going to have his tumor board check things out...so well see.  So weird to have 2 doctors say completely different things.  I'm hoping that this other board will confirm the others suspicions.  I'm spinning in circles and it's not just the vertigo!

[Anomar11]

Hi Judithandrews.  I haven't been on for a while.  You don't say what your previous dimensions were.  There is a 2 mm margin of error in reading these things.   For me I would place more weight on my treating physician and his/her team.  However, I can appreciate your angst if you're having these symptoms.  If your treating MD says no growth, then you might get a third opinion.  I know it can be exhausting worrying about it.  There are a few on the board who had failed radiation if you do a search.  Most have surgery and this is what most doctors recommend, but a second radiation can also be an option.  I wish you the best.