Why did you choose Gk or CK?

[windy]

I would love to hear how you choose either GK or CK.  I know it is a personal choice, but it is a hard decision to make.  I do have some fair hearing left.  Also, I am concerned of having no facial issues, if at all possible.  What is your opinion of each one?  BTW, my tumor is 9mm x 11mm x 9mm.

Secondly, how did you decide where your treatment would take place?  What did you base your decision on in regard to the treatment facility and physician?  Thanks in advance!

[Mark]

Definitely a personal choice, but perhaps not that hard if you have access to both and isolate the decision to two points

Comfort - GK requires a halo screwed into the skull, CK uses a water soluble plastic mask that conforms to the face

Hearing preservation - GK with one dose preserves pre-treatment hearing at about a 50-60% rate, CK with 3 fractions is closer to 75-80%

Beyond that both are about equally effective at controlling the AN and protecting the facial nerve

Mark

[Nancy Drew]

In the info my doc gave me it said 55% to 75% for GK and better chance in saving hearing for people who have small tumors.  Still smaller odds, but it can't be discounted either.  Nancy

[Lorenzo]

Hearing preservation wasn't a factor for me, as it was beyond saving anyway. I didn't have any option here other than surgery, and I didn't really want to go that route unless I had to. Found out about FSR, LINAC first, then found CK. Decided on Stanford because they invented the machine, had the most experience and trained most CK teams around the world, and I just had a very good response from them which made me feel comfortable with that choice. Excellent control rate and less chances of facial nerve problems was also a big factor in deciding on CK.
Lorenzo

[windy]

Avoidance of possible facial nerve damage is a huge condsideration for me, as well.  Also, I want to preserve what hearing I have left.  I feel it may be fairly okay, as I still hear on the phone and low whispers.  I have my hearing test, but really don't know how to read it, so I am just going on actual experience.  I have some facial sensations now, so that concerns me.  I am starting to have some balance issues, as well.  Yuk!! 

I talked to my neurosurgeon's asst. today and she wanted to schedule GK for July or do a "wait and watch".  I don't want a wait and watch because my tumor is 1.1CM.  I told her honestly about my deliberation between GK and CK.  She asked if I would be more comfortable talking with the radiation oncologist.  I told her I would.  She said if B'ham, AL does get CK in town, he will be the deciding factor.  I have an appt. with the radiation oncologist in B'ham on Monday.  I am anxious to hear what he has to say.  I wonder if I should take statistics of any sort on CK?

I am also watching NancyDrew's threads as she seems to have the same questions as I have.  Sometimes I don't post because we seem to have the same questions  Thanks NancyDrew!

[Lorenzo]

HI Windy,

What I would take with you is a list of questions, all the questions you have and ask them. Statistics are useful, but up to a point. There's nothing like getting answers from the experts to know if you like them, their attitude and how frank they are in responding. Take statistics if you want, but really what want you want is answers to questions.

And that goes for any treatment option, not just radiosurgery. Speak to experts in each area, that will give you a good overview of whom you're dealing with professionally. The more honest and clear, the better.

I'm probably stating the obvious. Good luck with your appointment! 

Ciao, Lorenzo

[goinbatty]

This is definitely a personal decision but in my case, the tumor was small.  I chose CK in the hope of better hearing preservation and the mask vs frame bit.  I'm 5 months out from CK.  My hearing at 2 months was barely affected.  No facial nerve issues.  I've just gotten a little more clumsy.  I wouldn't call it dizzy at all.  Just a little off my rocker but for those that know me, I was that way to begin with!  Almost forgot, I do feel that my memory has been affected somewhat but that could easily be age related (47, yep I'lll admit it). 
Take care,
Sandra

[Tumbleweed]

I'll also add that CK delivers 15% higher radiation dose at the center of the tumor compared to at the periphery, whereas GK delivers 100% greater dose at the center compared to at the periphery. The more homogeneous delivery of radiation that CK offers makes me more comfortable with the procedure; I didn't want to have any more radiation at the center of the tumor than what was needed to kill the tumor. Many believe that the lower dosage at tumor-center may be the reason why statistics for hearing preservation are a little better for CK than for GK.

I chose Stanford to treat me because they are the most experienced at CK, and practice makes perfect! In 2007 alone, Dr. Chang treated around 125 ANs with CK. He's done over 700 in total.

Better odds of hearing preservation, the doctor and medical center with the most experience with CK... in my mind, that gives me the best shot at a "successful" outcome.

Best wishes for peace and healing along your journey.

Tumbleweed

[Nancy Drew]

Hi Windy,

Sounds like we are both up against the wall with deciding on what to choose--GK or CK.  I feel like my posts are a bit hysterical at times because I am so anxious to get to my decision point.  I want to save my hearing since it is fairly good.  Everyone says CK, but I keep leaning toward GK because that is what my doctor has to offer.  He makes it look so good and promising.  I have hesitated to look into CK for fear that it will confuse me even more.  And, we don't have a CK in Denver and for some reason I am not trusting the one in Boulder which is 30 miles away.  I should at least give them a try to see what they have to offer.  You mentioned B'ham, AL.  Do you live in AL?  I grew up in Natchez, MS, but I lived in Huntsville, AL for eight years.  I am finding quite a few southern girls here in AN World.  Best wishes on your decision making journey.  Keep posting with any new ideas that might help me, also.

Nancy

[Kate B]

Nancy,

If history and length of time are important, GK has a longer history and therefore more data.  CK has been around less than ten years.

Just something else to consider. 

It sounds like you are comfortable with the doctor and his experience. As you will read on this site, that is huge.

Kate

[Lorenzo]

Kate,

just to clarify things about CK and it's history, Stanford have been using it since early 90s, '94 I think. Can't remember when it was FDA approved, I think it was around 2000. Their records go back 14 years. BUT, CK is basically a different method of delivery of FSR, and FSR records go back a lot longer than 14 years.  That's my unscientific and cl,ueless way of looking at this, and please somebody correct me if I'm wrong.

Nancy, looking into all your options should make you feel more comfortable, speaking and asking the professionals in each field questions should make it clearer. To me, it sounds like you already have a decision right there in what you said. Or at least, close to a decision. The ANA newsletter has a good article about hearing preservation, by the way, in relation to CK vs GK; I think I mentioned that before somewhere... repeating myself now. Oooops...  lol

Ciao, Lorenzo

[Mark]

Lorenzo,

You are correct in your comments to Kate re: CK and it's evolution, only addition I would make is that FDA approval was in 1999 and that was specific to extra cranial tumor treatment applications, not inter cranial ( aka skull based). As you correctly noted CK as a radiosurgery advancement involves it's more flexible and accurate targeting platform. Otherwise, it is a LINAC machine like Novalis, Trilogy etc. They all have the same biological effect on the AN or any other tumor as has been demonstrated by GK over the years and dosing for a single treatment is the same for CK and GK at 12 GY. That GK has longer term studies simply because it was invented first is obvious, however to infer that makes it more proven in efficacy is to demonstrate a basic lack of understanding of the fact they all share the same biological  impact on the tumor. It has the same credibility as saying a 1920 Model T is a better car than a 2008 BMW simply because it's studies are 90 years old 

Thanks for raising the point.

Mark

[Lorenzo]

Hi Mark,

Thanks for that. I also add that comparing treatments now with ones done say 5, 10 years ago is somewhat inaccurate I think. The delivered dosage has changed over the years and is being fine tuned all the time as new research comes on stream. So decisions based on long term records are somewhat skewed by the constantly evolving practice of radiosurgery.

I'm going to make bread now, need something simple to occupy my mind! 

Ciao, Lorenzo

[Mark]

Lorenzo,

agreed, good point. the evolution of dosing to today's lower levels probably artificially skews the older GK study results downward given they were using much higher GY levels.

Let me know what wine you're having with the bread, although by my clock I would guess it to be about 6:30 Am in Ireland, so while it might be industrious to be making bread that early, drinking wine might raise some eye brows 

Mark

[Lorenzo]

Mark, quite right, no wine this early on. Maybe a glass at lunch. lol  Been up since 5 and that's when I start shaping the dough, baking in about 15 minutes. Fresh bread for breakfast. I get up early...
Ciao, Lorenzo