Failed CK treatment....

[ANgal]

I had CK done 2 years ago. The tumor was steady in size (did not shrink either) until 2 weeks ago when I had my follow up MRI. It showed the tumor grew 1 cm....

Has anyone had failed CK ? Did you re-do the radiation treatment or did surgery? My tumor is now 3cmx 3cm...

Tks!

[TJ]

Angal

I am sorry to hear about your situation.  From what I have been told, CK is about 93-95% successful in controlling growth.  So that leaves a small percentage that it doesn't work in.  I have also been told that CK can be done a second time if the size is under 2.5 CM

Good luck

TJ

[mk]

Oh, I am sorry to hear this. Having been through this experience recently I know how scary and overwhelming it is. Was the growth 1 cm or 1 mm? Wow 1 cm seems like a lot, assuming that you had regular MRIs. If it is 1 mm, then the reported growth may be within the margin of error of the instrument.
I would assume that most probably they wouldn't do radiation again if the tumor has already reached 3 cm and there is brainstem compression involved. (They certainly wouldn't do GK again for me, but CK can sometimes be repeated).
Make sure to consult with doctors who have some experience treating previously radiated tumors. I found during my consultations that the range of opinions varied widely, depending on the doctors' experience. If you end up needing surgery, you may read/hear scary things about surgery following radiation. Don't despair though, many excellent surgical outcomes have been reported in this forum post-radiation. I consider mine one of these cases.

Good luck.

Marianna

[ANgal]

TJ: yes, I guess I'm the lucky few % that CK does not work.

Marianna: I also do not understand how it can be 1 cm (not mm) in less than 6 months time....It is a lot. And there was note of "dead" tissue a few months back, so it can be very depressing to hear news like that.
I'm glad your surgery went well. Do you have any hearing/facial issues?
Tks for the pointers, I'll definitely take my time finding the surgeon I feel most comfortable with.

[mk]

My AN also showed "darkening" in the middle during the first two MRIs post-GK, which of course was interpreted as a good thing. However afterwards is seemed like it changed shape slightly, but most importantly it constantly kept creeping up in size. However, the growth was very small, to the point that it almost got missed until a watchful radiologist looked back to the original scan. However your growth rate seems very high. I wonder if it could be post-radiation swelling, which can happen even at 2 years post radiation. Do you have the previous scans to compare?

My hearing kept declining after radiation, so when I had surgery it was pretty much gone anyway - now I am completely SSD. I had very minor weakness post-op (perhaps a grade II), which has now completely been restored, except from my eye that does not produce tears. One of the surgeons I had consulted had given me 100% chance of paralysis, because the nerve had been previously radiated and some others 30-50%. I kept consulting until I found a surgeon who I was comfortable with. I should mention however that most of the neurosurgeons said that in their experience surgery post-radiation is not more difficult than normal, it is all on a case by case basis.

Marianna

[carter]

i have to throw in my own experience .....  i had CK in Jan of 2009.  on a follow up MRI, the CK doctor informed me that my AN was now huge and he referred me to a neurosurgeon.  As i waited for the next appointment, my mind went crazy.

 in the end, the radiologist  misread the size as he read the MRI.

the ck dr was working only from the radiologist's report - he never looked at the MRi

the neurosurgeon opened teh mri file and compared to an earlier image and started to measure to find th eerror.

may i ask if the MRI has had a review?  not a guarnatee - but a thought?

good luck
carter

[ANgal]

Marianna: I thought swelling would only occur on the first year post radiation.... So maybe there is a hope that it is swelling.... How come the small growth on yours wasn't classified as swelling as well? My hearing went back and forth for the first year (lost 10% hearing then would come back to 100%). But suddenly, last Nov 2010, I had hearing loss (from one day to the next). It has not come back since (have mild to severe hearing loss). As of now I am waiting for the docotor that id the treatment to get back to me with his review, we'll see.

Carter: I got a phone call with the new measurement, which compared to the last MRI grew 1cm. However, I have not seen the pictures myself. I live close to Washington DC and the doctor that did the treatment is in California. I requested the results and images to be sent to him, so as of now I am waiting for his words of confirmation. The good thing is that he has the originals from before the CK. So we'll see.
So yours did not grow since the treatment? did you get any swelling?

[mk]

I was told by my doctors that swellling may happen within the first 2 years. As most of my growth was after that (between 2-3 years) all the doctors I consulted said that it is too late for post-radiation swelling. Plus the AN was then about 3.1-3.2 cm and really pressing on the brain stem and compressing my ventricles, leading to a risk for hydrocephalus. Therefore everybody (including myself) really thought that it must be removed. As for the hearing, I also experienced several incidents of sudden hearing loss (once before GK and twice afterwards). In all cases hearing came back with steroids (prednisone). But afterwards it started to decline slowly to the point where all word recognition was gone.
Make sure you ask your CK doctor what his interpretation is (swelling vs. growth) and if at this point there is any serious compression to the surrounding structures. Also what he/she advises to do (i.e. wait, vs. treat further). I don't recall if you mentioned where you had treatment in California. Was it in Stanford? If yes, they have tons of experience and I would trust their assessment. Otherwise, you may want to send your information to an experienced CK facility (like Stanford) and a facility that specializes in surgery (like HEI). They do phone consultations.

Marianna

[carter]

Car[b]ter: I got a phone call with the new measurement, which compared to the last MRI grew 1cm. However, I have not seen the pictures myself. I live close to Washington DC and the doctor that did the treatment is in California. I requested the results and images to be sent to him, so as of now I am waiting for his words of confirmation. The good thing is that he has the originals from before the CK. So we'll see.
So yours did not grow since the treatment? did you get any swelling?[/b]


my AN has not grown -----

i have learned to not like  / respect many in the medical field as i have gone through the AN treatment.

i decided to treat locally so i could have follow up care locally.   my ck treating dr was more interested in keeping his ck machine filled -imho?   he was the one that passed on the info about the growth w/o checking.   the neurosurgeon that was involved was an arogant little SH*t that was never availble. 

In the end, i now travel for the follow up care.  i found Dr Medbery - CK patient forum .... i travel to see him for the follow ups.  no MRI reports are sent to me - they give me a copy of the disc and i take it to Dr M.  he gets out an old disc and shows them to me.  the man does well explaining and listening.

i am reading that others would now do differently .... i now have little usable hearing in the AN ear, my AN side of the face is numb / tingly almost all of the time, i get headaches, i do have balance issues ... i will never say that i wish i had done differently .... i now have  a different reality .... and i will go on with life.

i have learned to adapt and will continue to do so.

i hope that your situation improves!


carter

[ANgal]

Mariana: I did the treatment at Stanford with Dr. Chang. I loved their facilities and know they are very knowledgeable. They have not received the CD with the latest MRI but am hoping they do by next week. I trust Dr. Chang's examination and hope he says it's swelling. Tks for your pointers and input.

Carter: It is true that the doctor that read the last report did not have previous MRI CD - only the report I gave them. And he was very quick in wanting to give me the contact info of a neurosurgeon.... Too quick for me to process the info. So as I sent my MRI to Stanford, I will wait and see what they say, as they have all the other MRIs.
I'm glad to know your AN has not grown must be a relieve Tks for your input, glad this forum has so many people helping each other get through this.

[ppearl214]

Hi ANGal,

As you know, the success rates are definately high for CK so the failure % is very low. What do you have (ie: written report, etc) that shows it grew 1 CM vs 1mm?  There is a +/-2mm margin of error on head MRIs and want to make sure it's not 1CM but 1mm, which would put it in the margin of error.

If it has grown, I do know of a couple of folks here in the past that ran into failed CK (and other radio treatments, ie: proton, etc) that did go into surgery and from my knowledge, seem to be doing ok.

Phyl

[mk]

I am sure that Dr. Chang will provide you with an informed assessment.
Radiation treatments do have a high rate of success - many of the neurosurgeons I consulted admitted that they haven't operated on many post-radiation patients, because the success rate is high. It does happen though, and we have quite a few cases on the forum - I am one of them.

Marianna

[tichinose]

I also had a tumor grow from post surgery and radiation go from 2.9 to 3.4 cm....I have so complication that I am waiting for hei to schedule surgery. Man these neurologist take forever,,,

[kworkman]

I have had a fail GK.  First GK in Dec 03.  AN stayed stayed the same until Feb 07 when it grow.  I had second GK March 07.   MRI in March 11 show shrinkage and is now longer touching brain stem.  Both GK at Barnes Hospital St. Louis. Don't have all my files at hand.  If measurements are needed just let m know.  Best of Luck with your choice.

Kathy

[PaulW]

I found a study somewhere.....cant find it now, showing that swelling peaked at 13 months on average for Gammaknife.  Faster swelling tumours peaked earlier, slower swelling tumours peaked later, some peaked at 24 months.

The swelling normally started at around 5 months, hence the problems many experience in the 5-18 month period. The study showed a small minority of tumours were still swelling at 24 months. The fact that the swelling has occurred between your 18-24 month MRI would have been within the norm for this report.  What is probably more important at 24 months is if necrosis is visible, and even that does not always show up on the MRI..
Failure I believe is less likely than late swelling..
The study showed a large variation on how AN's react to the treatment, in size, timing and visible necrosis. 

Probably best to speak to the Doc that treated you.
If I find the link on Swelling and Gammaknife I will post it.
It was an interesting read.