ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: windy on June 23, 2008, 03:45:28 pm
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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!
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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
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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
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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
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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!
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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
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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
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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
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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
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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
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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
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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
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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! :D
Ciao, Lorenzo
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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 :o
Mark
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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 :D
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Thanks for the replies. This is a great community of helpful and comforting people! I pray the Monday appointment with the radiation oncologist goes well. I am interested in seeing if he is only pro GK, as that is all the city has to offer.
BTW Nancy, I do live in AL, presently in the Tuscaloosa (Univ. of AL) area. I am not considering AL only care, though. I am will to go elsewhere if treatment seems better for me.
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Windy,
Good luck with your appointment tomorrow. I have my second opinion tomorrow. Hopefully we won't get more confused. I have the results of the panel that reviewed my case, but I am going to hold off on giving it to the new doctor so hopefully he can give me his true opinion. I think I have that right. Please post about your results. I hope the doctor tells me his opinion tomorrow instead of sending it to my AN doctor, and then I can't get the results until I go see him. Waiting is the most difficult part of this whole process. I hear Univ. of AL is a good research hospital. Hopefully they have good knowledge of AN treatment. BEST WISHES.
Nancy
Nancy
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Thanks Nancy for the well wishes. I wish you well on your appointment!! I will post tomorrow after my appt. Please do the same. I love to hear other points of view.
I have had an emotional day. I am starting to have other symptomology in my face and it worries me greatly. I don't know how I went from unnoticeable symptomology to so much, all at once. I suppose it can happen. Take care!
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Best of luck with your appointment tomorrow, Windy.
Let us know how it goes.
Emotional days are hard to avoid, but hang in there :)
Wishing you the best,
Jan
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Windy and Jan,
In response to my second opinion from the doc today, I wrote what happened on the Negative CK Stories Only post. It is a lot easier for you to go there and read than to write it all over again. Hope you came out ok with your doc visit today Windy. As you will read, I am confused more than ever. I am sick and tired of this AN in my head. I am sure the majority of us feel this way. Take care all.
Nancy
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Nancy -
I copied the following quote from your Negative CK Stories Only post:
"I am so confused at this point because it all boils down to what kind of chance I am willing to take".
IMO with this statement, you have basically hit the nail on the head. This is exactly what you need to take into consideration when making your treatment decision. As we've often said here, no doctor - or anyone else for that matter - can guarantee you any specific outcome. You need to do your research, weigh the odds, think about what you are comfortable with, and jump in - or decide to wait for a while and then jump in.
I also agree with the doctor you saw today, that in your case a third opinion will probably just confuse the issue. Sometimes having too much advice doesn't clarify things, it just muddies the waters.
Just my take on things; for what it's worth.
Jan
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Thanks Jan,
I am trying to take all of this in and not act on emotion. I have a couple of PMs to people here in Denver about other doctors they went to for second opinions. Some felt comfortable with the doc I went to see today, and some didn't. I think I will feel more comfortable at this point to have another visit with my AN doctor so I can try to put the pieces of the puzzle together. The balance test last week did not get to the doc today, and I don't know the results of that test. Also, this doc today doesn't use GK, and I am wondering if he uses old technology. Sounds like he leans more toward surgery, and to be honest with my tiny AN I don't think surgery is a good option for me. Plus for me, surgery doesn't feel right to me in my gut so I'm trying to go with that gut feeling. I don't have a gut feeling about radiation and W & W at this time.
Taking chances seems like the key to me also because whatever I do or don't do I will have to live with it. And as the doctor said today, it is not malignant at this point. It is good to hear that, but at times it sort of downplays the fact that hearing and other issues are involved, and that is important to me. I don't think it is fair to compare someone with an AN to someone who has a malignant tumor. It is not apples to apples. Thanks for your input.
Nancy
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First, thank you for the well wishes. I appreciate the support!
I did see the radiation oncologist today. He seems to be a very nice physician and seemed to be very willing to help. He talked to me about my connective tissue disease. He stated individuals with connective tissue diseases did not do as well with radiation as others. He said my odds for complications were worse. That was disheartening to hear, but honest. He said I would have a greater chance to have nerve damage to the fifth and seventh cranial nerve, etc... It would not be greatly increased odds, but it would be increased odds compared to the normal population.
He stated he would use 12GY in the treatment, if I went the GK route. B'ham only has GK. He stated it was more accurate than CK. He said it would be even harder for CK to be accurate with a tumor of my small size. I have not read any information to back his statement of being more accurate, to date. He stated he did treatments of around 380 tumors in a year with about 12% being an AN (around 45 per year). I asked him if he had ever seen people who were paralyzed post GK and he said he had. He said he had not ever seen anyone paralyzed after GK with a tumor of my size (9mm x 11mm x 9mm), but he had seen it with patients with larger tumors. He stated if I was worried about hearing loss and being paralyzed then he suggested "wait and watch". I told him I could not choose "wait and watch". I feel the need to move on to a treatment. However, I am the patient with worse odds. He did state he would be willing to treat me post GK or even if I choose CK elsewhere. I really appreciated his willingness to help.
I really don't know what to do. Can anyone give me some feedback on the radiation oncologist visit? Thanks in advance!
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Windy,
In regards to the comments by your radiation oncologist:
He stated he would use 12GY in the treatment, if I went the GK route. B'ham only has GK. He stated it was more accurate than CK. He said it would be even harder for CK to be accurate with a tumor of my small size. I have not read any information to back his statement of being more accurate, to date
The 12GY for a single dose treatment is fairly standard protocol for any of the machines . Given B'Ham only has GK, that probably explains why he doesn't know what he's talking about re: CK. There are a number of posts on this subject in the archives here, but suffice to say his statement about accuracy is false. Total error for GK ( machine, CT, Halo frame) is shown in studies to be anywhere from 1-1.5 mm. Total error for CK (machine, CT) was shown to be .89 mm in a Stanford study a few years ago. Both machines are very good choices and in my view the differentiating points are whether you want a fractionated protocol or don't want the halo attached. The accuracy difference is not significant enough to worry about, but in fact, CK is more accurate than GK contrary to the uninformed opinion of the doc you talked with.
mark
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Hi Windy,
Like Mark said, the accuracy debate between CK and GK is imaginary; they are both quite accurate. I don't know of a single report where anyone has been able to show that a difference in accuracy between the two made any difference in patient outcome, which is the only thing that matters.
I am curious about the connective tissue aspect. I have not heard about that before. I think it would be a great question for Dr. Medbery on the CK forum, I would be interested to know what he has to say about it. The link to the CK forum is http://www.cyberknifesupport.org/forum/. You can quickly sign up and post a question in the Brain section. Dr. Medbery posts under the name radsrus.
I am a little puzzled by this statement: " if I was worried about hearing loss and being paralyzed then he suggested "wait and watch." It seems to me that the chance of those things happening would go up over time, not down. I guess he meant you wait and hope that the AN stops growing and you don't have to do anything.
I wonder if the connective tissue disease also has an effect on surgery outcome? Unless the effect is significant, I think I would still consider doing radiation treatment.
Steve
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I think Steve (& Mark) said it best: "Like Mark said, the accuracy debate between CK and GK is imaginary; they are both quite accurate. I don't know of a single report where anyone has been able to show that a difference in accuracy between the two made any difference in patient outcome, which is the only thing that matters." You just have to find the facility and staff that you are most comfortable with. One important fact about GK: I had GK and the halo was not big a deal. Please don't let that be the reason you don't go with GK.
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I agree with all of you concerning the accuracy of CK. If CK was so inaccurate, it would have been disapproved years ago, it seems.
Also, I took the suggestion of posting to the CK board about the connective tissue disease. It may not be as bad as I am imagining it could be, really. I must admit I do have strong reactions to drugs, etc... I am the patient that they say, "I have never seen this happen out of several hundred patients". I also have had rashes from sun and drugs on numerous occasions. That being said, it still does not mean I won't have a positive outcome.
I have already heard back from Dr. Chang @ Stanford via e-mail, a few days ago. He will be reviewing my MRI, etc... that I mailed last week. I hope to hear back from him soon. Does he ever call on the phone so that you can discuss treatment? I was just curious.
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Hi, Windy:
Dr. Chang called me after reviewing my MRI. And again after reviewing my follow-up MRI. He took a lot of time to answer my questions and didn't rush me off the phone.
I recommend you have a list of questions you want to ask him, placed by the phone so that when he calls you're all ready to ask away.
Best wishes,
Tumbleweed