No radiation for me

[opp2]

I got back a while ago from the Gamma Knife Center at Toronto Western. They have advised they won't treat my AN with radiation due to the size and location. They were very good about it, and I'm not really taken by surprise or disappointed that much. I had told myself if they advised that it could be treated and there was a chance that my symptoms would diminish, then I'd do it. I have been reading a great deal though and pretty much knew going in that there would be no guarantee of the symptoms diminishing.

The oncologists did say that they have had discussions with Dr. Guha in the past about debulking tumours and then radiating them. (though he'd never actually done a procedure with the intention of not taking it all and then zapping the remainder)
They suggested that I discuss that with him and see how he felt about it. They did indicate I was pretty young too. I think they were trying to be nice, but they did feel that my relative youth was also a factor.  So that's what I'll do.

In the meanwhile, I'm still scheduled to see Drs. Rutka, Akagami and Westerberg in Jan. Onward and upward then!

[Jim Scott]

Nikki ~

I'm sorry you didn't get the news you had hoped for regarding you're undergoing Gamma Knife (radiation) to treat your AN.  Size and location are always the deciding factors when determining the most efficacious approach to treating an acoustic neuroma.   As an AN patient that successfully underwent debulking surgery then FSR I can attest that it certainly worked well for me and is being used more frequently in AN patients with larger tumors.  I hope this may be a viable treatment for you when you consult with Dr. Guha.  Meanwhile, as you noted: onward and upward!

Jim

[epc1970]

Hi Nikki
I too am sorry that radiation was ruled out for you. I know that the thought of brain surgery is super scary but the process of surgery to debulk followed by radition is becomming common practice for larger tumors. It carries less risk to the all important facial nerve and many here on this forum seem to dp really well as Jim has already told you.   While surgery is scary and recovery at times is tough, you really will be just fine. Good luck with your surgical consults-remember to go with a surgeon with extensive AN expirence!
Erin

[Pooter]

Nikki,

I'm bummed that radiation was ruled out for you as well.  I would think, however, that Dr Guha would be open to the idea of debulking and radiation if he couldn't get all of the tumor without damaging the facial nerve.  I would specifically tell him that you would rather debulk and leave some behind to use radiation on rather than risk any nerve damage to the facial nerve.  Make sure that he knows that you'd like him to be realistic and conservative in his surgery rather than a hero..  After all, getting all of the tumor with facial nerve damage (however temporary) is worse than being conservative and using GK to get the rest after the fact.

As you said, onward and upward.

Regards,
Brian