Negative Cyberknife stories only!!!

[Nancy Drew]

Hi,

This is Nancy Drew once again doing her detective work.  Since I have already asked for positive cyberknife stories and gotten them (and I am so happy for all of you), I need to turn the question around.  I need to hear from those who have not been so fortunate in their CK journey.  I am especially interested in getting info about hearing preservation since I have fairly good hearing and want to keep it.  In advance, I am sorry if you had disappointing results with your CK--not fair.

Nancy 

[Kathleen5306]

Nancy

I will be one of the few that has failed CyberKnife treatment.  I was treated with CyberKnife in October of 2002 for an acoustic neuroma measuring 19mm x 9mm x 8mm. Going into the treatment my hearing was within normal limits for both ears and throughout all the testing frequencies. My speech discrimination scores were excellent for both ears. My acoustic neuroma was discovered during an MRI follow up for brain surgery done in 1996 to remove a colloid cyst that was obstructing the flow of cerebral spinal fluid into my right ventricle.  I had no symptoms and just knew I had the AN because of my previous health issues.  From 1996 until 2002, I monitored the AN and saw it's slow growth.

By 2002, the AN had grown to the 19x9x8 size and I elected to undergo CK treatment at Stanford to preserve my perfect hearing and to preserve my facial nerve. I know that it is much better to get treatment before the symptoms are irreversible.  Immediately after the three days of CyberKnife treatment, I experienced complications that required hospitalization. I had extreme dizziness, numbness on the entire right side of my body, headache and difficulty with speech. Extensive testing was done over a one week hospitalization at Stanford and no cause was determined for this reaction. Decadron controlled the symptoms, but we never determined the cause. Within six weeks of the CyberKnife treatment, I experienced severe hearing loss in my right ear with the inability to understand speech at any volume level. Six years later I remain deaf in my right ear with loud tinnitus constantly. Immediately I became one of the rare cases who went from perfect hearing to total deafness.

Over the last few months, the ringing was getting louder and I now began experiencing facial numbness.  I returned for an MRI June 19, 2008. It shows that my acoustic neuroma has grown from the original measurement of 19x9x8 to 20x13x14. So, the goal of stopping the tumor growth has not been met, either. I become one of the rare cases that fail on both the hearing preservation front and the tumor growth front. I am now left with the horrible dilema of what to do after this failure? Do I undergo another dose of radiation if it has already failed once? Isn't doing the same thing over and expecting a different result the definition of insanity? How many patients have been treated more than once with CyberKnife? What is their outcome? Also, since I had some kind of a reaction to the radiation that most people do not have, that needs to be considered before a second round is started. How many other patients experience these negative side effects from CyberKnife? How successful are surgical resections once the growth has already been treated with radiation? Since I am already experiencing loss of feeling in the face, will I lose my ability to move my facial muscles? What is the long term outcome if I choose to do nothing?

I don't expect you to answer those questions.  That is what I am waiting for from my CK team and other doctors.  It is just a sample of the dilema I am going through since I am one of the few that failed CyberKnife.

If there is anyone out there that has any experience with this, will you share your experience and your decisions and your outcome?

Kathleen

 
 

[Nancy Drew]

Kathleen,  (sorry this is a long post)

Thanks for sharing your story.  I am so sorry for all that you have been through.  I am finding more and more that there is a risk for what ever treatment one chooses to do to treat their AN.  What I am hearing is a lot of positive stories about CK (which is great), but I hardly every see anyone giving long term results of what happens down the road.  Even though GK seems to be the "gold standard" in radiation you see problems with it, also.  I am sure I will hear from the CK patients about the long term results issue.

It sounds like you have been through a horrible situation, and you had good intentions of doing something early on to save your perfect hearing and to preserve your facial nerve.  You wanted to prevent any damage that might come up from an untreated AN, and it backfired (or at least that is what it seems like you are sayiing).  So sorry for you, and I think I might be in a similar situation that you were in in some ways.  I have a small AN as you can see from my sig that grew slightly this past year.  My hearing is within normal limits except for one frequency, and it is now equal in the AN ear and nonAN ear.  My AN ear had better hearing than my other ear until this past year.  In that one frequency it went from 25 to 35.  Has always been about 35 in the nonAN ear.  I really don't understand these hearing tests, and I am wondering if there is a more accurate hearing test than what I have been having all of these years.  All I know is that I have hearing loss that is bothersome.

My AN doc recommended GK since the tumor is beginning to grow.  He told me the risks for hearing loss with both W & W and GK.  When I asked, he said if it was him he would have the GK.  I went for a second opinion today, and I am more confused than ever (It was at a University Hospital).  The doc agreed with my AN doctor that my AN is growing, and it is indeed a canidate for GK.  However, he said if it was him (when I asked) he would W & W and take the chance that hearing would be OK longer vs. having the GK (or surgery or CK--he included all treatments) and having a higher chance (33%) of losing my hearing with treatment.  But he feels the tumor is probably going to grow down the line because of my age (49), and he would therefore remove it if it gets bigger on my next MRI in May 2009.  Apparently the AN is not in danger of affecting the facial nerve.

I am so confused at this point because it all boils down to what kind of chance I am willing to take.  The doc today said if one thinks they will have a psychological problem of knowing the AN is in there untreated then maybe it is best to get treatment.  I have bipolar disorder and OCD so you can see that I have the psychological issue, but maybe I can stick it out until next May and see what happens.  I think all doctors will say that "it is your decision".  Probably this is true in most cases when the tumor is small and not causing very many problems.  Big tumors and location, etc. I imagine are different.  I asked the second opinion doc if a third opinion would help, and he said it would only make me more confused.  It always worries me when a  doctor says they don't think another opinion is necessary.  I'm gonna have another one anyway most likely.  My AN doc sent me for this 2nd opinion without me asking.  I admire that.  So the doc I saw today is going to give my AN doc his opinion, hopefully today on the phone.  Then I will go see my AN doc, and see if he stands by his decision.  Also the doc today said there is aways the risk (1 in 10,000) of tumors becoming malignant because of the radiation--and my mother has had cancer three times and that might add to my odds.

In a way I think that no matter how many opinions I get, it is going to be confusing no matter what just because an opinion is just an opinion, and in the end I am going to have to trust my gut feeling.  This all just sucks big time.  I feel so much for you because you cannot go back.  You have to deal with what you have been through.  I also know that whatever I do I can't undo.  My psychological issues are a big part of me, and I have had my mental illness under control for the most part for many years.  If treatment turns out great then no worries.  The other way around will be difficult to deal with, and I would hopefully be strong enough to keep on top of my bipolar disorder and accept the consequences of something negative.  There is so much to consider.

Thanks for your reply.  I hope that whatever happens you will find something positive that will give you hope. 

Nancy

[Kathleen5306]

Nancy-

I do not regret my decision to undergo CK.  At the time, that decision felt very right to me.  Like you, I did a lot of reserach, weighed my options, got multiple opinions and at the end of the day made what I thought was the right decision for me.  I knew my decision carried some risks.  All our decisions do.  Like my last go around, I am now trying to be thorough in evaluating what options I now have in front of me.  While there are lots of us who have AN's, I am searching to see who else is like me with an AN that failed CyberKnife and what they did.  I admire your thorough search for all of your options and am inspired by your honesty of what you are facing.  I believe you will have a feeling of what is right for you when it is right for you.  I believe I will, too.  I just hope we both get there soon!

All the best,

Kathleen

[Nancy Drew]

Kathleen,

I am glad, actually happy, to hear that you don't regret having the CK.  It is helpful to know that you are able to stand behind what you did and not look back.  Looks like now that you are looking forward to evaluate what to do next.  It must be hard to have to make more decisions down the road.  It is too bad that with an AN there is no one size fits all.  It would be so much easier if there was just a clear cut decision, but we all know this without me having to repeat. 

I have some questions that were not answered today, and I need to get them answered before I can make a decision one way or another.  For instance, last week I had a balance test, which I requested, so I could take it to the doctor today.  Apparently my AN doctor faxed it, but the doc at University didn't receive it.  I don't know the results of the balance test myself so I will be interested in knowing what the results are.  The audiologist called and left a message to call back to go over the results.  I will call tomorrow.  It seems if I have balance problems different from the first one I had when I found out about the AN, then that will be a factor in my mind.  I will need to keep a watch on balance issues.  I am just a littly tipsy at times--no falls or anything like that.  Also I need to know how much radiation they are going to use to treat my AN at this size as compared to what they would use if the AN gets bigger.  I am also uncomfortable with the fact that the doc today has never used GK.  Maybe he is not up to date on GK technology.  Don't know what kind of radiation he uses, and I wonder if it is old school.  I also need to hear what my AN doc has to say, and I hope the doc really did get in touch with my AN doc today.  The assistant said the doc was going out of town for the rest of the week.  It is good that I have time.  I am rather dramatic so I might be taking all of this way out of perportion.  Maybe it is ok to wait until I have my next MRI in May 2009 to decide.  I know these tumors grow slowly, but I don't know what the rate is for hearing loss.  Can it go really fast?  I hear different things.

Thanks for listening to my ramble.  If you have read my other posts (and there have been a lot lately) you will see that I am rather back and forth and confused to the max.  I feel like I am in a hole, and I'm trying to figure out how to get out.  Wondering if I should get out in the first place.  Take care, and hope all goes wiel in your research.

Nancy
 

[sgerrard]

Nancy,

Kathleen's account of failed CK is a sobering reminder that the best laid plans can go awry, and that no choice of treatment, including waiting, can guarantee a good outcome. I also think she made a good choice, and had every reason to think it would work well. It just doesn't always work out that way. All you can do is research the options, choose the approach that seems right for you, and hope for the best.

I'm not clear whether you have met and talked with the radiation oncologist who would do your GK. If not, I think that would be a good appointment to make. One of the things that helped me decide was to think about the reality of actually doing the procedure. While you are with the GK doctor, ask yourself "can I see myself coming to this facility, letting this doctor put a halo on my head, lying on the table, and having this doctor flip the switch to zap me with Gamma rays?"

I think you should do the same thing at Boulder, with a CK oncologist. Can you see yourself driving out there, getting the mesh mask, and having that doctor zap you with the CK robot arm? Actually visualizing the treatment process with each choice helps to clarify in your mind whether in fact you would really go through with it. That is where the gut feeling comes in; if it doesn't feel right, then you are probably not going to be doing that.

I also think you should ask to have an MRI appointment in September, and get that scheduled. When those results come in, if you have checked out the GK and CK places in the mean time, you will able to say "wait some more," or "let's do the GK now," or "let's do the CK now," based on the new MRI and your impression of the two doctors and their facilities.

Steve

[Nancy Drew]

Hi Steve,

Good comments and things I haven't thought about yet.  I didn't even know that you had the option to talk to the radiation oncologist.  I am not sure who will actually be on the team.  As for the frame, it doesn'stseem so scary to me as long as I have some drugs to help me get through it.  It might be worth going to Boulder to at least try the mask.  I am still in the dark.  I am waiting to hear back from the audiologist about the results from my balance test.  She sent the result to the doc I saw yesterday, but he said he didn't get them.  I didn't feel comfortable with the doc yesterday.  I hope my insurance will let me have a third opinion, and if not I will just pay out of pocket from another one.  I am also wondering if there is a better hearing test other than the one where you sit in the booth and push the button.  My numbers are all over the place in all frequencies, and I have had about ten tests since 1996.  One frequency went from 25 down to 5 then up to 20.  Maybe my ENT was just looking for a clogged up ear related to sinuses or allergies.  I hope to hear from my AN doc soon.  Hopefully he has already gotten the results from the doc I saw yesterday.  His assistant (the doc I saw yester) said he usually calls the doc the same day and leaves a message if he can't talk to the doctor directly.  If he didn't get in touch yesterday, then it will be sometime next week because yesterday's doc is going to be out town for the rest of the week.  I am curious to hear the results of my balance test, and I have so many things to research yet.  One is how fast can hearing loss come on and how much at one time.  At this point I feel like disassociating from my doctors for awhile.  Sometimes I feel like they don't care.  Maybe I am just sensitive right now.  It is horrible to wait, and I don't think the doctors understand how it affects the patient.  Everyone said Dr. Chang responds fast so I might just try him.  I'm kind of down in the dumps right now.  Yesterday when I was at the doc I got more confused than ever.  Universit Hospital is supposed to be high tech and state of the art since they have only been in their new facility for two years.  It is a beautiful place, but I was a bit concerned when I saw that the docs office only had a VCR.  He didn't want to look at my new MRI until I insisted.  He had the fillms from my first two MRIs so he looked at them and said the "growth" probably wasn't anything to worry about because each reading can be different.  After going to the basement and having them load the CD and send it up to his office did he see that it had actually grown.  He changed his mind about there actually being growth.  I got a feeling that this guy is old school.  He seemed to be more pro-surgery, and when I told him I had crossed that off my list, he said the tumor was a canidate for any type of radiation.  I asked him what type of radiation machine he used at Univ. Hospital, and it was one I haven't even heard of.  I get the opinion he has never studied GK or CK.  Not impressed with him at all.  So, I have a lot of thinking to do, a lot of research and more opinions to get.  I don't have good enough answers at this point.  So, this is it for now.  I am off to my volunteer work at Children's Hospital. It helps me appreciate the fact that I don't have to go through what those kids on the oncology unit have to go through.  They are so brave.  Probably 10,000 times or more than I am.  Take care.

Nancy

[sgerrard]

Hi Nancy,

In case you didn't see this reply today from CaryF in Denver, here is a link: http://anausa.org/forum/index.php?topic=6816.msg69211#msg69211. It mentions doctors and facilities in Denver that treat a lot of ANs, with surgery and GK.

Steve

[Nancy Drew]

Thanks Steve,

I have been following CaryF and have been in touch with him by PM.  He has gone down the path that I am currently considering.  Seems he has done his research well, and I am happy to hear that he is doing well after his GK.  As always you guys are on top of it.  Best wishes.

Nancy