AN has grown + 2mm in five months....

[chloes mema]

Had my second MRI this morning, it showed that the AN has grown a little over 2mm in 5 months and is now starting to move out of the IAC.  It sort of looks like an ice cream cone (at least that's what the oncologist said).
Bad part is the nurse practitioner on her first visit into the room said, "Oh, it looks stable and you're doing fine."  Half hour later she came back and said, "Oh, sorry it has grown 2mm.  The neurosurgeon and an oncologist will be in shortly."  What a blow that was; 180 degrees! 
Neurosurgeon discussed surgery (I didn't listen to this!!!!)  During her speech, stage right enters the radio oncologist; he discussed radiation with Novalis.  It was a very long day, 6 hours at the facility.
Friday I have an appointment with another radio oncologist that has used Novalis and now uses CK.
Guess I'll be moving out of WW and into the "radiated" group soon.
At least now I'm forced to make a decision and soon!

Question:  since this facility is 1/2 hour from my home & I feel comfortable with the doctors is it worth the time & effort to send my MRI to HEI, Dr. Chang, UPMC, and Barrow in Phoenix?  Will this gain me anything? 
I'm leaning towards not sending to HEI since I don't even want to consider surgery & what more can the others tell me?
Just curious.  Back on the roller coaster.

Karen

[BeckyMax]

Oh how I hate to read this, but yes, there is some resolution in knowing that treatment is eminent.  Keep us posted, hoping you get all your questions answered to your satisfaction.

Becky

[lrobie]

Karen,

Even though I had suspicions that my AN had grown, when the doctors told me, I don't think I heard anything else the rest of the day.  They are very long days when you're able to go to the same facility for the MRI and see two doctors in the same day.  If you already have your mind made up and you're comfortable with the doctor and the treatment choice, personnally I would not continue to get opinions.  The opinions that I sought out just made me more confused.  Especially since everyone had a different one.

I wish you the best.  I will be anxious to read your posts if you decide on radiation.  It sounds like we have AN's in the same place and around the same size.

Lisa

[chloes mema]

Thanks, Becky.
Lisa, as I've followed your posts I thought the same thing that our journeys are very similar.  I think the worst of yesterday was that first they said it was stable, no problems then they turned around to say BTW it's grown +2mm meet your radio oncologist!  Like you, not much else of what was said sunk in.  Also, I went in with the question sheet from the ANA website AND a 20 question sheet of my own.  They just rolled their eyes and only answered a couple of the questions off both sheets.  I know it won't happen but I just wish someone would say, "this is what we're going to do, be there at 8AM!"   
I know that won't happen till I say here I am, take me, it's my brain do what you want with it.  I've gotten similar advice about not looking to much further; how much more can anyone else say. 

I will do radiation, it's just will I do Novalis or CK.  Hopefully tomorrow's appointment will clear that question up. 

The best to you also and keep posting so we can all follow your progress.

Karen

[sunfish]

I did not get a second opinion, and went with local treatment.  Discussed with radiation oncologist the fact that they would use the same protocol as Stanford - she gave me a copy of the research paper describing the protocol.  There were times early on that I regretted not getting another opinion but, two years post-CK, I'm happy with how I did things and made my decision.  Downside of my local treatment providers was that I think they were good at "zapping" things, but not so familiar with what they had zapped (AN).  I think the upside is that I saved travel cost and sick days from work, and it's nicer to have local folks to consult about symptoms, after-effects, etc. (even if they don't always seem so informed about my condition).  I also really only considered radiation, and was fortunate to have the only CK machine in South Carolina in my back yard!

[chloes mema]

sunfish - the more I come out of the shock of yesterday's appointment the more I'm leaning towards doing what you did; radiation very close to home.  I'm meeting with another oncologist tomorrow and I think that will be it then it's decision time.  At this point, I've eliminated surgery so now it's down to Novalis or CK.  I'm afraid to stay on W&W any longer than I have to since this "thing" has grown 2mm in 5 months. 

Karen

[chloes mema]

If you're interested in the end result please see my post dated 03/30/12 under W&W titled I'm going with my gut and I've made a decision.

Karen