Gamma knife-Not out of the woods

[kathy g]

I went to my ENT doctor (who I just told that I had an AN and GK in May) on Friday. 

I told him that according to my 3 month MRI the tumor has shrunk 2mm in one direction and a little in the other.  He said, "You are not out of the woods, it has to shrink a lot more than that! You will probably have to have surgery, to get the tumor definitely removed."

It depressed me, I thought the worst was over.

How much shrinkage can we expect from the GK?

[ppearl214]

Morning Kathy.  Your ENT is right.  Please note that each head MRI has a "total margin of error" (ie: different persons reading the films, giving different measurements, different MRI technology, "slices" of the films/views done differently, etc) of 2mm, thus, you are still within that range... which, I will share this.... is good news as there is NO enhanced growth as of now (and hopefully never!)   You are still VERY soon post radio and honestly, it can take up to 1-1/2 yrs or so to truly see radio's full affect on an AN.  So, you just need to hang in there.

The goal of radio treatments on AN's is not shrinkage.... but to kill the core DNA to prevent further growth of the AN (in easier terms, to help "stunt" its growth and prevent future growth).

So, you may not feel great about your ENT noting you are not out of the woods.... but take this to heart.... no enhanced growth on your last set of films, which in my eyes, is great news!  Hang tough!

Phyl

[sgerrard]

Since you say you just told him about the GK, I will assume this ENT was not involved at the time of treatment. I don't think he really knows what he is talking about when it comes to Gammaknife. That's too bad, but not all that unusual. Gammaknife for an acoustic neuroma is something lots of doctors know nothing about.

There is absolutely no reason for a doctor to say "you will probably have to have surgery" on the basis of an MRI 3 months after GK treatment of an AN. In fact as long as it doesn't permanently get bigger (temporary swelling doesn't count), you won't have to do anything else. I think you should talk to the radiation oncologist involved with the GK for an opinion on your MRI results.

Slight shrinkage at 3 months is in fact a very good sign. Unless the AN starts growing again, you are indeed out of the woods and done with it.

Steve

[GM]

Tumor shrinkage or stopping of tumor growth are the goals of GK...I'm not sure why your doctor was talking about surgery?  The idea of GK (and radiation in general) is to avoid surgery...

GM

[kathy g]

Thanks, Steve and Phyl and GM. 

This ENT was the  first doctor I saw when I started this whole fiasco and he did not see that that it was an, so when I went to see him, a year later, he was SHOCKED. 

I have found a lot of doctors prefer that their patients do surgery because  it is out.  THey also say it can damage the brain to have GK. It was a real battle to have the GK against a lot of my doctors recommendations.  But, some of them said it would work.  That is why I am so nervous.  I am feeling better.  But this ENT said the only thing that matters is the size of the tumor.

Thanks for your support.

Best,
Kathy

[mk]

Hi Kathy,

Obviously your ENT is not knowledgeable at all about GK. At 3 months post-GK all you can hope for is to avoid serious swelling (which with an AN of your and mine size, could cause serious problems). The fact that your 3 month MRI does not show swelling is very positive. My doctors were thrilled that I didn't have swelling at 3 months. At 6 months you may see some darkening, which signifies necrosis, although this doesn't always happen. Shrinkage is not always observed. As everyone else said, the desirable outcome is control of the growth.
Your ENT may be concerned about the distortion in the brain structures in the presence of the AN, and this is a valid consideration. That can only be rectified if the AN is removed, which obviously is not the goal of radiation. I suppose though that since your radiation oncologists proceeded with the treatment, they judged that the distortion is not so significant/threatening. You may want to clarify this with them for your piece of mind.

For now, it seems to me that you are doing great.
Marianna

[edhayes]

Kathy
If I were you I would immediately get a new ENT.
If he knew anything about GK he would know that nothing much can be expected 3 months post-GK.
Making a statement like that to you should tell you he is not someone you want to have caring for you.
Tell him to drop dead and find a new doctor, someone that is caring and knowledgeable.

ps
My 3 month post-GK should little or any decrease in size.  I just had my 9 month post-GK MRI yesterday and there was significant shrinkage of the tumor.  Also my hearing is actually slightly improved.
Just wait and see what the next few MRI's show.  I will make you a bet that your are infact out of the woods and you should saty out of this jerks office.

[kathy g]

Thanks Edward for what you said.

[GM]

Just as a heads-up...shrinkage is always good news...but some of us just have a dormant turmor.  Mine has been 2.1cm since 2003...   As always it's a personal decision, to have it out of my head would have be great...but I didn't want to deal with surgery...again a personal decision.