How exactly do you decide between CK & GK?

[Nancy Drew]

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

[Lorenzo]

HI Nancy,

Glad to hear it. We'll allways try our best to try to make people cry, in a good way of course!

Ciao, Lorenzo

[lori67]

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?   

Lori

[Nancy Drew]

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

[leapyrtwins]

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

[Sue]

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!

Enjoy the sun and the computer. 

Sue

[Nancy Drew]

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

[sher]

Nancy,
What part of Colorado do you live in?
Sher

[fbarbera]

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

[Nancy Drew]

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

[Nancy Drew]

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

[suboo73]

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)

[Nancy Drew]

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.   

[suboo73]

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

[ppearl214]

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