Author Topic: wait or treat?  (Read 2037 times)

carolk

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wait or treat?
« on: March 09, 2006, 11:31:17 am »
I'm currently considering radiation therapy for my small 6mm tumor, which was first discovered (at 3mm) two years ago as an "incidental finding" when I had an MRI for another reason.  I have NO symptoms--my hearing and balance are fine.  This makes the prospect of going through treatment (which could have adverse impact) very scary.  However my tumor does appear to be growing slowly.  Because of the location (deep in my inner ear) surgery would probably not save my hearing, so I'm not a good candidate for surgery.  I just met with a radiation oncologist who says the location (and size) are ideal for radiosurgery, since it's (relatively) far away from other structures like my facial nerve and brain stem.   I'd like to continue to watch and wait--and hope it doesn't keep growing.  But since it does appear to be getting bigger, I want to do some research into radiosurgery (and get second opinions--from where?) in case I need to act.  Any advice would be GREATLY appreciated!  My ENT says I should do something when it gets to 1 cm, what do others think?

Captain Deb

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Re: wait or treat?
« Reply #1 on: March 09, 2006, 11:37:49 am »
How many MRI's have you had and how far apart?
Capt Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

carolk

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Re: wait or treat?
« Reply #2 on: March 09, 2006, 04:14:25 pm »
I've had 4 MRIs:  One in Dec. 2003, when the AN was discovered as an "incidental finding" at 2mm, the second at 6 months in July 2004 when it showed "no significant growth" although it was 3mm (the margin of error is so small for tiny ones, that's why they said "no growth"), the third at six months--Dec. 2004--when it showed "no significant growth" although it was 4mm, then a year later--Dec. 2005, when it had grown about 1mm to 4x4x6m.   This time they said the one-year-change showed a growth of about 1mm, which is when my ENT suggested  radiation. . .

Yorkiemom

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Re: wait or treat?
« Reply #3 on: March 09, 2006, 06:54:14 pm »
Hi Carol,
Your AN and mine sound ear-ily similar.  Mine is 5x4mm and is in the IAC close to the cochlea end rather than the other end.  The first surgeon pretty much ruled out saving my hearing, but the second surgeon gave me 60% chance to keep it with middle fossa surgery.  Also got the same mixed reviews from them for radiosurgery.  My symptoms are more than yours though.  While my hearing is still good, the ringing, chirping and occasional ear pain are driving me to distraction.  I too would like to hold on to my good hearing for as long as possible.  Both told me that the symptoms for these things are subject to change at any time - usually for the worse.  Meaning that any morning I could wake up and my hearing could deteriorate substantially without this thing changing size at all.  That scared me into thinking that if I am going to have radiosurgery that it should be sooner rather than later.  Pretty much I have ruled out anyone coming anywhere near my head with a knife unless this thing gets real large real fast or threatens my life. Anyway keeps us posted as I like to hear what the Docs tell folks with AN's like mine.  I will be offline for a week or so, going to Vancouver Island for a week of relaxation and skiing.  Hope I don't break something, although it might make me forget about my ear troubles.  Hope everyone has a stressfree week!!

Tina