Round 2...any suggestions??

[DistressedDB]

I had CK 2 years ago for an AN...at the time, I felt it was the best option.  My latest MRI shows growth toward the brain stem...bascially, the CK didn't take effect for me.


I have two questions to all of you out there...

(1) What recommendations do you have for me for my next step?  I'm terrified of the surgery - I need my hearing and my facial nerves for my career - it's critical.

(2) Has anyone else experienced a lack of success from CK?  I remember reading the material and it looked like the success rate was 99.9% (I can't believe that I'm in the .1 precentile!!!)

I am hoping that there have been advances in the last two years and there are some new treatements/options out there which I can take advantage of and avoid surgery if possible (knowing CK second time round is out).

Thanks very much in advance for taking the time to respond!

Deb

[Sheryl]

Deb - forgot to mention in my private note to you - have you posted on the CK board to the doctors there?  They are usually quite truthful and helpful.
Sheryl

[sgerrard]

How much growth? If you ask Dr. Medbery on the CK site, he will tell you that 5mm is a minimum to indicate real growth. Swelling and variation in MRIs can cause changes in the measured size without real growth taking place.

The numbers out of Stanford are something like 5 failures in 700 ANs treated, making it a little over 99% control. So there is good reason to be suspicious, unless the MRI shows really definitive growth. I suspect the docs at the CK site would first suggest having another MRI in 4-6 months to see if it is really growing.

I'm not sure CK second time round is automatically out, it seems to me some oncologists support re-treatment - another question to ask on the CK site. Or maybe you meant it was out in your mind, based on it failing the first time, which I could understand.

I hope it isn't real growth. I'd be interested to know if there is some other option besides surgery or radiation, and what you may find out on the CK site. The forum, by the way, is at http://www.cyberknifesupport.org/forum/. Asking some questions there would be my first step.

Steve

[DistressedDB]

Steve & Sheryl - thank you...some great thoughts to consider.  I don't have the official measurements yet of the tumor - I will hear next week (radiologist wasn't in today).  From the MRI and just with the naked eye, the space between the tumor and my brain stem has shrunk significantly - enough to suggest real growth.  I am planning to call the radiologist who conducted the CK - she usually checks in with me once in a while - and share results with her to get her opinion.  I hadn't thought of contacting the CK docs online and I hadn't heard a second round of CK was even possible.  I am encouraged as a result. 

[tony]

Sorry to hear of your worries
I would second a point already made here
- it is often quite hard to determin the difference
between tumour swelling - due to a successful radio treatment
and tumour growth - due to a failed radio treatment
Perhaps 20% of tumours swell as a result of treatment
then either shrink back - or stay as they are - but go black
from the inside out (necrosis)
It definately needs an experianced eye to spot this
Certainly make sure you really have full confirmation
of the actual situation - before doing anything
It is early days here
Good Luck and Best Regards
Tony

[sgerrard]

You might also want to have a look at the MRI posted recently by JB in this thread:

http://anausa.org/forum/index.php?topic=5579.0

You can see that swelling of the AN is substantial, even though it is clearly dying.

It also occurred to me that they might have missed a spot in the original CK, since you said the growth seemed to be in one direction. Maybe there was a little "runner" coming off the AN, which they couldn't see and which didn't get included when they were targeting the CK treatment. If that were the case, they might be able to zap just the new blob.

Steve

[DistressedDB]

Again, really good information...things have changed in the two years post my CK - glad to hear there may be some different thinking.  If CK is an option for a second go-round...I would definitely consider.  I also see the extreme importance of getting multiple viewings of my MRI's to get a consensus on what is going on...nothing like having a few great docs viewing your head!!!! 

[ppearl214]

Hi Deb,

I'm sorry to hear that you have run into this. Have your dr's confirmed that this was a "failed" treatment? 

It was one of the key reasons I chose CK for my AN treatment option. I knew we could re-CK if need be.

Like Steve and Sheryl (  ) note, I'd be curious to see if the change noted is within the typical +/-2mm for MRI's......

Please hang in there... we're here to help.
Phyl

[jtd71465]

If you ever want to talk about surgery (I had retro done in January of 07) please do not hesitate to send me an email.  My story is very positive and "real".

Look forward to speaking with you.


Joe-

[DistressedDB]

Thanks Joe,

I might have to give you a call...  What does "retro" refer to?  Did you have surgery post a CK?  Or did you have a second CK?  Although I've been dealing with this for 3 years, I still don't have the "lingo" quite down 

[FlyersFan68]

I recently purchased a few cd's from the last symposium and the doc's very briefly discussed the radiation re-treatment option. I believe it was the general discussion cd. The retreatment that they discussed in Philly was one tumor and 2 years ago. This one person insisted on radiation a second time. The verdict was not in yet. If I understood it correctly, they mentioned that they increased the overall dosage compared to the first round. This concerns me a bit because the amount used the first time was likely 12-14gy which is a good amount of radiation. My guess would be another 13-16gy perhaps??. That's a lot of radiation for a benign tumor. I would look into this. My initial thinking was okay they must add just a tiny bit more to "finish the job" but this wasn't the case. That's how it sounded to me. They considered the tumor more "aggressive" than usual. You can purchase the cd's right here and ones dating back too. I would ask the experts from all corners of the playing field. Also, you would be amazed of the information you could find over the net when you type in the right words. There are plenty of medical abstracts over the net from experts all around the world. Its very time consuming but worth it. Also on the cd, HEC spoke about treating over 95 radiation failures to date at their institution and all the radiation failures were harder to handle compared to initial surgical treatment. The good news is that House has a great deal of success saving the facial nerve in over 90% of radiation failures. They also remove 100% of the tumor in most cases. On the downside, the hearing preservation rate is basically zero since the translab approach is used which offers no chance of saving hearing but allows for a much better facial nerve outcome. At this point the facial nerve has more preference over the hearing nerve which is usually harder to save in most cases even with initial surgical treatment. I understand it's gonna be a tough decision one day. I know hearing is important to you like it is for everyone else so keep up with your audiograms to make sure you are still retaining your hearing. This is part of the process too. Try to find out if saving your hearing a second time still has the same odds as the first round of radiation. Those dealing with radiation regrowth must have better outcomes at the HEC. They've seen the most. I would (at the very least) get an opinion from them. I know it's difficult if you don't live near them because it was important for me to be close to home in case of complications but at the very least get their opinion. This is a trickier situation now and regrowth experience is crucial. I would also post your questions on the CK board. No matter what I wish you the very best!
If you have any questions regarding surgery please don't hesitate to email me.

[ppearl214]

Hey Flyer! Great post!  thanks for sharing... fast question please... when HEC said they had treated 95 cases of radiation failures... did they happen to note which protocol of radiation were treated by microsurgery?  Ie:  Were most of the failures FSR or CK or GK or ? ? ?

I'd be curious on that one.....

You all rawk!  Thanks again for sharing!
Phyl

[FlyersFan68]

Hey Phyl,
  That's an excellent question. The discussion cd I listened to was only 30 minutes. It was just $15.00 but I certainly expected more. No questions from the audience either. At times the speaker wasn't speaking directly into the microphone so I had to really turn up the volume at times. Brackman was clear because he has that bold distictive voice. They did not break-down the various forms of radiation. I think they posted this over the web on a powerpoint presentation a few years back (maybe 4-5) so I will try to find. At that time the numbers were more than half at their instituation.

[DistressedDB]

Flyer...

Very helpful - I guess there's always new break throughs and keeping up with it all is tough!  Thanks for all the great insight.  Latest news is after the Radio-oncologist reviewed the films - she's declared "No Change" although it was also positioned with a "not caring to compare original films with CD's".  It didn't instill a lot of confidence.

It's good news for now...I am just a bit skeptical.  I have another MRI this spring and that would be 2.5 years post radiation.  I would assume there might be some change by then.  I do think I'm going to do one more round of "due diligence" and have the Radio-oncologist who treated me with the CyberKnife should have a look.  As several of you have stated, it should be dying from the inside out and a trained person could see it...I'd feel a lot better if someone made a statement to that effect!   

[sgerrard]

Hey, DistressedDB, that sounds like a maybe to me, which is a good sign. I think the doctors on the CK forum, for instance, are always skeptical as to whether regrowth is really regrowth, and want to see definitive evidence before saying it is so. It is odd about not wanting to compare, though. Definitely get the oncologist who treated you to have a look. I would plan on waiting for that spring MRI as well. You may just have a slow AN which is taking its pretty sweet time about kicking the bucket.

My fingers are crossed. 

Steve