AN Growth after CK - 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 work.


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

(1) 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!!!)

(2) What recommendations do you have for me for my next step?  I'm terrified of the surgery - I need my hearing for my career - it's critical.  I am also worried about damage to the facial nerves...another absolute necessity for me in my career. 

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

[goinbatty]

You might want to ask the docs on the CK forum.  It may be that you could have additional radiation therapy rather than surgery. 
http://www.cyberknifesupport.org/forum/
I'll certainly be thinking about you. 
Sandra

[macintosh]

Deb--

My recollection is that the CK fail rate is about 2%. So it's rare but it does happen.

BUT: Be really sure that the change in size is growth, not just swelling. One-third of all successfully treated ANs end up slightly larger than they were at the time of treatment. As long as it's dead and stops growing, there's no problem. I can find the study that shows this if you want it. If your message means that yours is 1mm larger than it was 2 years ago, that in itself does not necessarily mean anything. That's probably within the margin of error of the MRI.

If I were in your shoes, I would send my film for review to a major treatment and teaching center (Hopkins, Stanford, Pittsburgh) for a second opinion.

Good luck,

Mac

[DistressedDB]

Thanks...getting more opinions seems to be a common theme...It's been 2 years since the CK so I was expecting to see some reduction in size.  I should hear the actual growth size early this week.  Then I plan to contact the radiologist who did the CK and have her also review the results.  Someone also mentioned that there is a way they can see if the tumor is dying, but requires a trained individual.  I also have recently heard there are cases where a second treatment of CK is possible...I had heard that was not an option...have any of you heard of this before?

[ppearl214]

Hi Deb,

I thought I had also done a post for you in one of the other forums here, but heck, short term memory loss got me on this one!

Ok, let's see if anything I say is of value.

My understanding that the goal in any form of radio treatment for AN's is not necessarily the size reduction but tumor core (DNA) death.  Now, I have heard of some that shrunk a little bit from the size it was at time of treatment, but my understanding is that size reduction is not the ultimate goal.

I learned a valuable lesson from another CK'er on this site about reading films and at what point is the tumor dying.  I believe the commentary to be true so will share with you here.  At the time of the MRI, it's all in the timing of when the test will "catch" the tumor in its death process.  Sometimes, the tumor will show darkening center/core to show the growth is dying.  It can also take on a grayish/white color as well, showing tumor death. For the life of me, my first MRI at 8 mos post CK, we saw the "enhanced rim growth", showing a darkened core (indicators of tumor death).... and at 16 month, to my untrained eye, it looked bright white.  I carried on with my dr's about it, not understanding how it was to look on the film..... and my dear AN post-CK friend reminded me (as shared with him by his CK radio-oncologist) that when the films are done, it's all in the timing of when you catch its death on film. Now, I sit back and to me, it makes sense... and if anyone else cares to elaborate on it, I most certainly welcome it as it's also a learning lesson for me.

One reason I chose CK is because, I knew, if need be, CK could be performed again, gawd forbid the first AN round of CK treatment didn't work.  It is my understanding that CK can be repeated and you may want to check with the CK docs on the CK Patient Support forum boards as they are much better versed on it than me.  The website (if you haven't been there yet) is:

http://www.cyberknifesupport.org/forum/

Again, just my 2 cents (2p for you UK gang!) and hoping others can chime in as well.

Not sure if it helps... but I try.
Phyl

[okiesandy]

Deb,

I just had my 2 year MRI 1/4/08 (Friday). Mine is just now down to the size it was when diagnosed. You may remember I had my CK done by Dr. Medbery in OKC. I seldom see him (except at the airport or on the highway). There are 2 other doctors at the CK center here. This time I saw one I had never seen before. She was much less interested in the size than the way the tumor looked.

When she looked at the pictures she said it looks just like it is supposed to look. Earlier there was a dark line through the center. Now, no line and it looks all gray. I sort of worried when I was looking at it before she came into the room. She said some AN's get larger after treatment and stay that way. Others get larger and then shrink some. Everyone's is different.

Do you get your MRI's on disc?  If so I am sure you could talk Dr. Medbery into taking a look at it if you want a second opinion. I go back to the CK center for my MRI's and one of the three doctors measure and meet with me and discuss the findings. I have my MRI and then go down one floor and see the doctor. They pull it up on the computer and compare it to the previous ones. Then I go up one floor and get my MRI on disc. All in a matter of about 1 1/2 hours. Once a year I go to the neuro-surgeon and she also looks at the MRI's and does a few tests. This is usually about a month after my January MRI.

I really want the thing to be gone or at least a lot smaller and I am sure you do too.  I was told most do not shrink and death to the tumor is the marker. Don't panic....It can be done again. Can't remember which doctor does it the second time. Wait for the radiologist report and measurements. In the meantime post the question on the cyberknife site.

Sandy

[jb]

FWIW, my impression is that CK can be repeated as long as the total dose of radiation to critical structures in the vicinity hasn't exceeded some 'safe' level.  I would definitely check in with the docs at the Cyberknife support forum though.  Personally, I would need to see strong evidence of growth from a series of MRI's (to rule out measurement error) before I'd repeat CK.  My AN swelled a lot following CK, so I'd agree with Sandy that yours may still be 'recovering' from the swelling phase.  JMHO.

[DistressedDB]

Thanks all!  A lot of great information and much I didn't know.  In looking at my MRI, it hadn't changed color - just gotten larger.  My doc had the two images side-by-side for us to review.  I was appalled to see after 2 full years since the CK there is a section that looked like it had "ballooned" out from the original tumor heading for the brainstem.  There were no dark rings, lines, change in coloring apparent to the naked eye.

This idea of 2 CK's is very new to me...I was told once it has been done it can't be repeated.  My doc in Atlanta confirmed this thinking just Friday.  However, I realize now that this discussion (should it be growing) needs to take place with my radio-oncologist. 

Big Question: Has anyone on this site had 2 CK's?  What was the result?  Was there any symptoms post the second CK?

Phyl - for the record...you aren't going crazy - I have this posted in two areas - and I've gotten very good data from both locations - those who have had CK and those who have had the surgery...very interesting 

Sandy - glad to hear you are doing well!!

[okiesandy]

Deb, who reviewed you MRI film? I am such a Type A personality that I have to know exactly every small detail at least half a dozen time with my AN. After my first post treatment MRI I ask Dr. Medbery what size it was. He measured and said what he thought. Then he handed the mouse to me and said you measure. I got a different measurement. Then my husband tried and his was even different. When I got the report back we had the 4th opinion.

As for it being darker or changing color. At first I could see a dark line now I can't I was a little worried about that. When I look at it now it looks much the same as before treatment. However, the doctor I saw in Dr. Medbery's office said necrosis. Again my Type A personality kicked in and I emailed Dr. Medbery to look at it. Yes, necrosis. Then I put the discs in the computer and invited my neighbor over (a physician) to look at it. He said I don't see necrosis. He took the disc to someone else with radiation expierence and guess what? Before he even ask the pointed out necorsis and said this looks very good.

Have you had all of your MRI's done at the same center with the same person reading them? Sometimes the angle is a little different or the machine is different or the person runing it does not do it the same as the previous person.

Ask the cyberknife forum doctors who treats the 2nd time. I am going to pray hard that this is all a mistake and you are fine and won't need retreatment.

Hugs,

Sandy

[pearchica]

DB: when I had my first consult with stanford, they had treated 600 patients with 2 failures.  Post first MRI- they were over 700 patients with 4 failures.  Failure means they just didn't get all the cells the first go round, so Stanford made it sound like, no big deal, we just zapp again.  I don't know of anyone who has had 2 CK treatments- email Stanford and ask them if the failures opted for a second CK treatment or if they opted for surgery- Fo me, I would much rather have radiation over surgery any day, but then I am very surgery adverse.

Take care, good luck- btw- I love your photo! Way fun- annie

[mema]

Am I right in noticing it has grown 1mm.  From .09 mm to 1cm.  That surely could just be a margin of error.  I  have had the original radiology-onycoligist as well   as a neuro in my area and another neuro where my treatment was done look at all my MRI's since tratment and none of them mention necrosis.  I know theres a good necrosis which means death of the tumor.  I think there is a bad necrosis which means death of healthy cells.  My AN was small so I just figured it was too small to see any necrosis.  None of them seem to be concerned with my MRI's at this point .  In June I am due for my 2 1/2 yr MRI.


                                                                     mema

[pearchica]

Hey mema-  you are in the margin of error.  I had my first MRI done in Sacramento, the second followup @ stanford.  My tumor shrunk 4 mm and Dr. chang noticed another 2mm on one side but couldn't call it shurnk precisly because of the margin of error.  So I wouldn't sweat it- especially with a small one, I think mine was going to show something as it's middle range bordering on large.. 2.5 CM- so in my case there was a lot of mass to target!   But I am fully prepared for the tumor to be pissed off and go in another direction.. highly unlikely but it was explained to me in detail that it took a long time for this thing to grow, it's gonna take at least 3-5 years to die...so that's what I am looking at.  And the mass stays somewhat intacked- it's just dead and not growing anymore (or at least that's what I was told).

Good luck- Annie

[mema]

Annie,

For a minute I thought I was having wonkie head or a senior moment.  By her post DistressedDB her  AN originally was 1.5cm x .09cm and now is 1.5cm x 1cm.  The margin of error was in answer  to her post.  But your info is good too.


                                               mema

[Me and my Schwanno]

Dear Deb,

You are not alone.  Just this week I received word that my AN has grown from .8 x .8 x 1.2cm to 1.2 x 1 x 1.6cm despite radiotherapy at Johns Hopkins last summer.  Like you, I have lots of questions about a second course of radiotherapy in lieu of surgery.  Johns Hopkins already told me they will not do a second course citing a poor outcome from their one and only second course of radiation patient.  They did mention there was a facility in Europe that offers a second course of radiation.

I am fascinated by the posting(s) about swelling, and now intend to follow up with the radiation oncologist at Johns Hopkins to rule out swelling as the cause of increased size.

With the news that my AN is growing, I have been examining surgical options.  All of these options scare the hell out of me.  My wife found an endoscopy program in Los Angeles, and another near Pittsburgh, that seem to be less invasive.  My head is spinning with all this information.  I had placed all my hope in the high success rate of radiotherapy.

Dann

[Kate B]

Hi,

Basically, what you need to find out is whether it is a regrowth. Did your doctors who administered the treatment indicate it was a regrowth or was it your local hospital (sometimes the two are different)?

I would send my MRI's and my report to House Ear Institute in LA. They specialize in AN's and will give you their consult for free.  Honestly, they are the gold standard in the Acoustic Neuroma field.

All the best,
Kate