ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Nancy Drew on June 26, 2008, 01:24:49 pm
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How exactly do you decide between CK and GK? Surgery is off my list. You see success stories and not so successful stories on this board about each--GK and CK. And, people lead you to "reputable" research sites for both procedures (doctors, too). I have heard that you have to be careful when you do research on the internet. I feel like I am just getting a bunch of individual opinions here that might not be so scientific--just luck of the draw in some cases. I know there are chances with any type of treatment, but personally I have found that this site is starting to confuse me more and more. I am sure I can go to any doctor who does any kind of treatment and get their opinion that says their treatment plan is the best. Maybe I need to lay off this site for awhile because it is confusing me to the point where I want to scream. I will have to give kudos to Steve however because he really seems to be objective about CK and GK even though he chose CK. Thanks Steve. Maybe I am just haviing a bad day. I will probably get slammed from this post, and I am really sorry if I am being insensitive. I respect each and every one of you who has an AN. I know it's not the same, but I think my Subaru is better than my son's Toyota. He thinks his is better than mine. And, you can find stats comparing both, and you can always find one saying their car is better than the other. I have a fireman friend who is usually first on the scene at car accidents, and he says that the car he sees as the safest is the very one that is ranked the lowest on safety. He has two of these cars, and I now have one too--not the Subaru by the way. You would think he would know after dragging many people out of their cars. He has been in his profession for over 25 years so he is not a newbie. I am sure other firemen have their favorite car for safety as well. Go ahead, slam me!
Nancy Drew (still investigating and baffled!)
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Nancy,
Slam you? Not at all! On the contrary! We've ALL been in the same spot round about the same time as you are now. There is NOTHING to be slammed. I know I screamed, numerous times and loudly too. Boy did I what. I mean, how the heck DOES one decide??? My Renault is better than a Skoda (ok, we have different cars here), but they both have an engine and four wheels and get us from A to Z. Why a Renault over a Fiat or who knows what? How does one decide?
Frankly, I do not push either CK, or GK or Surgery. The moment I stopped screaming was the day I realised that in the end, I had to make the choice. I could read as mcuh and as extensively as i wished, but in the end it was my choice, and only mine. So, it might have been unscientific, but the ONLY way I found that helped me making a decision was to think ahead. What treatment made me feel comfortable? What set of cricumstances made me feel at ease? What people did I feel comfortable with? I decided I'd better pick a path that I was prepared to follow all the way, with no regrets, no 'what ifs' and no 'I should haves'.
But, that's me. I found my way, after months of screaming, confusion, doubts, panic, pain, fear, determination, gritting my teeth and not really understanding a lot of the stuff I read.
And, I may add, in the end, I realised, I just kept reading the same stuff over and over and it was just presented slightly differently, with more or less details. But it all led to one place, comfort zone, personal choice.
So no, I'm certainly not going to slam you, In fact I'm glad you got to this point, because one has to before being able to make a decision, I think. it shows you are about ready to make the next step. And you know the best part for me when I made that decision? It felt wonderful. All the doubts, confusion, fears, all vanished in an instant.
Welcome to this mad club of ours!
Ciao, Lorenzo
PS (had to add a PS here, sorry. It might sound like I'm pushing for CK in my posts, but I'm not. It's the only experience I had, so it's the only one I can feel comfortable talking about. I'm sure others are the same. I respect people's choices, who am I not to respect them! I'm not trying to convert anybody to CK or anything else. My own experience with CK was not all rose and had it's tough times too, very tough for me at the time. I still wouldn't change my personal choice.
I hope this helps in some way and not confuse you even more. By any means, keep away from here if it's confusing even more. Only come back if it helps. We'll all be glad to help if we can, in the only way know how to, being here.
Ciao
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Back again,
Might be a bit presumptuous of me, but I did a little bit of thinking. I haven't been asked to, but there you are, can't help it.
I'm not totally familiar with your circumstances but here's what I can gather from what I read:
You have a small AN
Don't know how bad your symptoms are, nor where the AN is.
Hearing preservation is a priority
Surgery is out.
That leaves GK and CK
GK is a one shot with a headframe screwed to your head and lower hearing preservation stats.
CK has a face mask, usually three sessions, and has better hearing preservation stats.
Both have excellent control rates.
Both kill but do not remove the tumour.
malignancy in the case of radiation for both is shown as being as low if not lower than any other way of getting a malignant tumour.
Recovery is similar for both I think.
There are two factors that need to be taken into account:
1) We are all different, so regardless of my outcome, or Steve's, you may have a different recovery pattern than we did. Might be easier, harder, longer shorter. One fact, FACT, remains for this point, neither you, nor us, nor the doc can predict how it will be. Easier than surgery probably, but then not neccessarily.
2) Second factor: what do you FEEL more comfortable with, disregarding all that you read.
In view of these two factors, you can discard 1) as that is beyond anybody's control. 2) on the other hand is entirely under your control.
The other factors listed above are there to support that.
This of course is totally simplistic no doubt, I don't know you, nor do i know your exact situation. But the above illustrates more or less what I came to write for myself when i came around to the realisations I posted earlier.
Please excuse me if I'm being too naive or stupid. I don't mean to. I go away now.
All the best, Lorenzo
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hello again! :D
Well, I'm at the spot where I have to decide once and for all what I wanna do...radiation? surgery? Yesterday it was surgery for sure! to get it out, out, out!!! >:(
Then comes today....and I'm thinking... ::)....maybe radiation??
So yeah..it's good to come to this awesome forum where all of you are willing to over and over post message for the "lost people" out there.
Anyways, back to the topic:
- I've been told GK has been around for a while = we have stats to show how good/bad it works on different cases
- CK is newer and we don't have that much stats YET.
a quick question for you Lorenzo, since you did the CK: how much apart were your sessions? what were the simptoms? did the tumor grew??..
Anyways, I'll be back with more input.
Pascale
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Nancy Drew,
There is absolutely no way anyone here would slam you. Not just because the folks here are very supportive and nice, it's because all of the folks here have experienced the exact frustration and confusion that you are experiencing. Each procedure involves it's own set of risks and each person is different, each neuroma is different, everyone's age is different, and on and on.... It is mind boggling! ???
I think you are right too that you go to a surgeon and he wants to cut. You go to a radiologist and he wants to irradiate. Just keep up your research! To be honest I sort of kept my head in the sand as far as coming to this site prior to my surgery. I did all of my research on medical sites with statistics. I was afraid of what I would read here. I'm not sure what I would have done had I read some of the posts prior to my surgery. My wife is a director of nursing at the medical center where I had my surgery. She talked with several docs and got some good information. This helped me\us ultimately make the decision. For the record my surgeon actually told me to come visit this site.
No one had mentioned CK as an option for me. I find this approach very interesting and worth investigation. Jim on the board had a combination treatment that sounds like the best of everything. Please don't get frustrated. I sucks to have to decide on anything. I remember the veil of confusion and fright that feel over me. Hang in there! ;)
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Nancy -
I can't imagine why you think anyone would "slam you" for your opinion :o Although we joke around a lot - we always have been, and I hope always will be, supportive of all forumites and their treatment decision - whatever that decision may be.
We always say that treatment choice is a personal choice and it's the same for you. It's your decision. Lorenzo's posts have some very good points - so does Bucko's post.
IMO from reading all your posts, you are very overwhelmed and confused about what decision you should make. This is VERY common and VERY normal. Perhaps, as you've suggested yourself numerous times, you need to take an "AN break" and then revisit your choices. It might give you a whole new perspective on things.
Respectfully,
Jan
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Well if no one else will, I'll slam you. ;D
You are supposed to be taking a break! Try making fun of Jim Scott, perhaps by phrasing your question in his inimitable style, which I will now try to imitate:
Nancy, I commiserate with your consternation over the bewildering decision which presently befuddles you. Perhaps an interlude of repose would be of some benefit. You may discover that one of the procedures, performed at a particular institution, by a physician of inspirational quality, will become apparent as the course of action you find realistically feasible and acceptable for you to actually undergo. At such time, the decision will be a fait accompli.
Steve
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Morning,
Pascale: I had three session of around 40 minutes, one day apart. Tumour was 26mm before CK and it swelled after about a year to around 30mm. It's now 22mm at the 3 year MRI. Symptoms I had to deal with: increased Tinnitus, slight and occasional balance stumbles, mostly it was extreme fatigue like I never experienced before. For about 8 months I had real difficulties in working at my lecturing job due to some concentration problems.
BUT, I worked regardless, lived, dealt with it all and came out of it feeling better than I have for a very long time.
Jim II (aka Steve), very funny. Made me laugh, thanks.
Ciao, Lorenzo
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Well said Steve!!!!
Anne Marie :-*
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Steve -
Huh? ???
Did you swallow a thesaurus? :D Apparently, you must have become so good at knitting that you can also read the dictionary at the same time!
Nancy Drew - don't worry - no slamming here! Unless we're talking about Jan or Steve! ;) Even then, just harmless jabbing! Hey, aren't you supposed to be taking a break? :D
Lori
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Nancy Drew - don't worry - no slamming here! Unless we're talking about Jan or Steve! ;)
As always, thanks for the vote of confidence, Lori ::)
Steve -
couldn't have said it better myself :D Quite seriously, I couldn't have.
Jan
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Lori,
No no, Steve IS a thesaurus! i was tempted to add 'the last of an endangered species destined to go the way of the other dino-saurs...' but that would be bad taste! I for one am going to keep that post as a reminder of what having an AN can do to one's writing skills.
Where is he anyway?
Ciao, Lorenzo
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So, maybe since my surgery, I've turned into a poet and don't know it???
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YA, maybe you jsut turned in La Divina Comedia, by Dante. Jus tto keep on the Italian theme you know...
This said, I think we better shift this or we'll get told off again. Wouldn't want to cause Phyl to come out of rest again...
Lorenzo
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Hey, at least it hasn't turned into talk of food or alcohol yet. Or has it???
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Hey Guys,
I am in a much better spot right now. I heardyou when you said I should lay off of this site for awhile Steve. But now that I have read your comedy and the responses to your comedy, I actually found a smile. So, how can I boot myself off of here now. Perhaps, I am moving into the acceptance phase, but I also know that you can go in and out of emotional states. That is just a part of life, AN or not. I appreciate the support you have all given here, and this particular post has given me tears and laughs. All in a good way--even the tears. I worked out in my yard today, and I finally found some pleasure in my life other than brooding about this thing in my head. So, I guess I did take a break to do something I enjoy. This is a journey we weave. Thanks everyone.
Nancy
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HI Nancy,
Glad to hear it. :) We'll allways try our best to try to make people cry, in a good way of course! :D
Ciao, Lorenzo
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Nancy -
I'm glad you were able to do something you enjoy! There's no reason to think you can't do things like that before and after AN treatment! Yes, you may have to enjoy things differently for a little while, but you'll still enjoy them, and that's the important thing.
And as you can see, keeping a good sense of humor about the whole thing has gotten a lot of us through this. It's nice to know that when you have a bad day - and we all do - someone here will cheer you up and get you through it. And then someday, you can do the same for someone else.
So, if the sun is shining in your little part of the world today, I hope you can get out and enjoy it.
We are rather addicting, aren't we? :D
Lori
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Lori,
Colorado has over 300 days of sunshine a year so there is no excuse for me to stay inside and brood. I got out yesterday and today and had some fun. I just got my computer back awhile ago. My husband stole it yesterday when he went to a "nerd" convention, and he also had it all night since he was communicating with the "Mother Ship". Actually he is in an amateur radio club, and they were trying to contact the international space station. So, I was forced to stay off the computer until now--3:45 p.m. I was starting to go through withdrawal, but I sure got a lot of things done. I have my second opinion tomorrow. I'll let you know how it goes. I think I am getting to the accepting stage, and I know that I am close to picking my treatment. Take care everyone and thanks for your support.
Nancy
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I think I am getting to the accepting stage, and I know that I am close to picking my treatment. Take care everyone and thanks for your support.
Nancy -
that is excellent news! Good luck with your second opinion tomorrow. Please let us know how it goes :)
Jan
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Hi Nancy,
I almost forgot about the "One Potato, Two Potato" method of choosing, or flipping a coin. If nothing else, you always have that as a back up! ;) ;D
Enjoy the sun and the computer.
Sue
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Hi Sue,
I use the coin flipping a lot. Use it mostly when my husband and I are trying to figure out which restaurant to go to. But in this case, I would probably go for three out of five! Maybe when it comes time. This crazy AN. Hopefully it won't get the best of me. Hang in there everyone.
Nancy
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Nancy,
What part of Colorado do you live in?
Sher
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Hey Nancy, I seriously debated between GK and CK. My own conclusion, after researching accuracy, tumor control, side-effects. etc., was that the two are essentially the same, unless you have hearing that you want to preserve, in which case, CK is better. Both are very accurate machines (though there is sharp disagreement among the two camps as to which machine is more accurate than the other). And I don't think there's enough info out there to suggest side effects are any different in GK v. CK. GK advocates will tell you to go with GK's longer track record, which I think is a fairly important consideration. But since CK has already been in use since 2000 or so, and since Stanford has been using fractionated treatments since the early 90s, with tumor control rates around 98% (and control rates of around 99% with CK) -- I think it is a very safe bet that CK achieves the same tumor control rates as GK. Bottom line: Both work well. CK gives you a better shot at hearing preservation. CK also doesn't require the head frame, but since that is just a temporary inconvenience, I don't think it should determine which treatment you select.
At least that is what I concluded. I go through my whole research/decision making process in my website, which is below, if you are interested.
Be well,
Francesco
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Francesco,
Thanks for the info. I am on my way out, but I will definitely review your website. I am totally interested in hearing how people have made their decisions. I am leaning toward GK now, but I have a whole lot of research to do before I do anything. I have only looked into CK a little bit, and I hear people rave about it here as far as preserving hearing, and that is what I am aiming for. Thanks for sharing.
Nancy
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Hi Sher,
I was just reading through some of my old posts, and I see I forgot to answer your question about where I live in CO. I live in Centennial, a burb south of Denver. CO is a beautiful state, and I have found many things here recently to keep my mind off of my AN. I will be having GK on Oct. 7th. One of the hardest decisions I have ever had to make, perhaps, but I think it is right for me. Just one more month to go, and it is here. I visited the GK center which really helped ease my anxiety. I got to put the head frame on, and then I learned that they will sedate me if I need it. Got a new doctor that I like, and I think that has also made a world of difference. I know everyone says CK has a better chance of hearing preservation, but I am hoping I will be the exception to the rule. Best wishes to all, and I thank you for your support.
Nancy
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How exactly do you decide between CK and GK? Surgery is off my list. You see success stories and not so successful stories on this board about each--GK and CK. And, people lead you to "reputable" research sites for both procedures (doctors, too). I have heard that you have to be careful when you do research on the internet. I feel like I am just getting a bunch of individual opinions here that might not be so scientific--just luck of the draw in some cases. I know there are chances with any type of treatment, but personally I have found that this site is starting to confuse me more and more. I am sure I can go to any doctor who does any kind of treatment and get their opinion that says their treatment plan is the best. Maybe I need to lay off this site for awhile because it is confusing me to the point where I want to scream. I will have to give kudos to Steve however because he really seems to be objective about CK and GK even though he chose CK. Thanks Steve. Maybe I am just haviing a bad day. I will probably get slammed from this post, and I am really sorry if I am being insensitive. I respect each and every one of you who has an AN. I know it's not the same, but I think my Subaru is better than my son's Toyota. He thinks his is better than mine. And, you can find stats comparing both, and you can always find one saying their car is better than the other. I have a fireman friend who is usually first on the scene at car accidents, and he says that the car he sees as the safest is the very one that is ranked the lowest on safety. He has two of these cars, and I now have one too--not the Subaru by the way. You would think he would know after dragging many people out of their cars. He has been in his profession for over 25 years so he is not a newbie. I am sure other firemen have their favorite car for safety as well. Go ahead, slam me!
Nancy Drew (still investigating and baffled!)
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This is my very first posting on this discussion forum and i know you probably have done more postings since this one...
But i feel i need to respond because i am going down the same road as you are right now - so please know that you are not alone.
It is scary, it is overwhelming at times - i sometimes feel like i just want to scream and tell someone to STOP the merry-go-round!
But i would not be here if it were not for my sister - diagnosed 6 months ago with an AN and counting.
She prompted me to get my hearing checked - yet again and for the third time - after having hearing loss for 10-12 years and the doctors just told me i was 'getting old.' (and i am currently 52 years old!) Well - you can guess the rest of the story and i have a diagnosis of AN as well, as of late Sept. 2008.
I am doing my research and making appointments to hear all the possible treatment options.
It seems daunting some days - i do what i can when i can.
I look for support from my family and good friends and they have been fabulous!
Also - i read the posting here and feel comfort in knowing i am not alone.
I hope you are finding the information and support you need. This seems like a great place, with great people.
Take care and let me know how you are doing.
(edited to fix quote for ease of readibility. Phyl)
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Hi Suboo73,
Wow, I wrote this post back in June. I was pretty angry then....and confused. I am sorry to hear about your AN. Thanks goodness for your wonderful sister who is looking out for you. A merry-go-round!!! A perfect description of this AN process. As you can see from my signature, I finally decided to go with GK, and tomorrow I will be three weeks post GK. I have hit a few bumps in the road, but I will have to say that I am doing pretty good at this point.
The reason I chose GK is because I found a doctor who does GK, CK and surgery (a package deal!), and I decided to go with his recommendation for GK.... although he said he would do CK if that was the route I wanted to take. I think some researchers, doctors and patients will argue until they are blue in the face about which method is the "best". I felt a good connection with my doctor, and I just decided to trust him and go with GK. The GK procedure itself wasn't that bad. The head frame was not a big deal in my opinion. But, I think in the end you have to fine a good doctor you can trust and go with your "gut" feeling.
I still have my hearing, but I won't know if I have lost any until I have my hearing test in Dec. I think there may be some loss, but it is too early to tell, I think. But, even if I have lost some hearing, I think it is something I can live with. Best wishes on your AN journey.
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Nancy Drew,
Hi there, and thank you for your thoughts on GK & CK. I appreciate your time in explaining your decision making process - it is helpful to hear how other patients go thru this journey, even knowing that the ultimate decision is mine and mine alone. (That was the very first thing my husband said to me after going for a second opinion.)
I have appointments with a surgeon and radiologist in Jan. 2009. Follow-up MRI in April 2009.
No matter what treatment options, i find it very hard to discover how experienced the doctor is (ie how many surgeries, procedures, etc.) he/she has done.
Did you ask this question?
Thanks again for writing back to me.
Please stay in touch and let me know how you are doing.
Suboo73
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Hi Suboo and welcome.
Sounds like you are hanging in there and know we are all here for you.
In choosing radiio-treatment for me.... I met with several radio-docs here in Boston. I asked for patient referrals (which you can see, you get here as well). I researched the different radio-protocols extensively and also inquired to the docs on the Cyberknife Support board (now, they are not just practitioners of CK but of GK as well... you can find them at http://www.cyberknife.com/Forum.aspx... they volunteer their time to answer patient questions).
I had approx 2 mos to make my choice... I discussed it with my PCP.... my back up docs that are following me during my AN journey... I inquired to the docs on the CK board..... I discussed with family and friends. You will know in your gut what will be best for your and your decision. Remember, the decision you make is solely suitable for you and your situation. Regardless of what you decide, you are doing what is best for you and your situation. We are here to cheer you on.
Again, welcome...
Phyl
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Hi Suboo,
My AN was found by accident, and I wasn't having any problems. My ENT sent me to an AN doctor, and he discussed the three options: watch and wait, surgery and radiation. He suggested that I W&W since my AN was small, in a safe area, and I wasn't having any symptoms. He said if it grew or if I started having symptoms, he would recommend GK. But, in the meantime the AN would be monitored with the initial 6 month MRI and annual ones after that. I was fine with his recommendation, and I went about my way. Of course there was the initial shock of having found the AN in the first place, but I figured I would be one of the lucky ones and never have any problems with it. When I had my MRI in May, the AN had grown slightly, and I was beginning to have some symptoms. The doctors I consulted recommended radiation over surgery, but they said W&W was also an option with a follow-up MRI in 6 months. Knowing that the AN was growing and starting to act up was wearing on me mentally, and after a lot of research, getting second opinions, consulting this board and communicating with another person I found on this board who had had GK here in Denver, I finally got to my decision point. I was not comfortable with my AN doctor at the time so I decided to get a second opinion from the doctor the guy here on the board used. I felt an instant connection with this doctor. He gave me the pros and cons of GK, and I went from there. I had aready canceled surgery off my list....just didn't feel right for me. My new AN doc, as I stated in my earlier post, does all three treatments (a package deal). However, he felt strongly about GK over CK, but he would go either way. I also felt like he was very well trained. He trained at Stanford for CK, and he trained at Pittsburg for GK. These two institutions are supposed to be the "pioneers" in each respective treatment. I didn't feel a need to go out of area for my treatment. My AN doctor said he does about 20 GK procedures each year. That seemed reasonable to me. I never asked about CK. There is only one CK center in CO, and it is relatively new. I get the feeling that my doctor has not used CK as much as the GK so perhaps his recommendation for GK was more in his comfort zone. I just accepted his recommendation....went with my "gut" feeling. But, I think CK is a good choice, also. For me, however, I liked the idea of the head frame. The head frame freaks a lot of people out, but I felt like I needed to have my head secure in the frame so I wouldn't move around. I didn't do very much research on CK. I have heard from people here and read some research that with CK there is a better chance of hearing preservation. My doctor wasn't convinced of this claim, but he said it is possible. Like I said people will argue about this one. And many will give you research data. I put my AN in the hands of my AN doc and the rest of his team who were also trained to do CK and GK.
You will get to your decision, and I think it is a good idea to consult with the CK board. I would definitely recommend getting a second opinion.
One other thing that put it in the bag for me also was the fact that my AN doc and the rest of the team didn't try to tell me what to do. They gave me the pros and cons and said it was my decision. I was lucky, though, because my AN was small and the location was not an issue. I didn't need to make a decision right away. My original AN told me right off to have GK. He said if it was him, he would have GK. Another doctor I went to said he would watch and wait if it was him. These two different opinions really "messed" with my mind. I liked that the new AN doc put the ball in my court. I think some would like to know what their doctor would do if it was him/her. When I made the decision on my own, it gave me a sense of control.
Best wishes to you as you continue on your AN journey. This is my story. Now you will be on the journey to finding your own story.
Nancy :)
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Hi Nancy Drew and ppearl 214!
Your words of encouragement and all the experiences and information you provide are wonderful.
Thank you for being there. Indeed, it is a 'journey' like no other.