ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: ROCKYB on May 09, 2008, 06:18:19 am
-
I am set to have gamma the doctor said mine is so small 5mm that gamma is the better choice for something that small. Dr Chang in stanford said cyber is better for my tumor who do think is right my hearing is almost perfect and the gamma is right where I live.
-
Rockyb,
In my opinion both GK and CK can effectively treat AN. And there are many people on this forum who have been treated successfully by one or the other. I would lean toward a treatment team that has lot's of experience treating AN with the machine they plan to use. The treatment is only as good as the treatment plan (what amount of radiation goes where) created from their experience and expertise, and their knowledge of your AN. CK is CK, and GK is GK, but the treatment would be slightly different from each treatment team. Find the team with the most expericence treating AN you can locate.
Good luck with your AN. If you're like most of us, investigating the various treatment options, weighing the odds and statistics amoung uncertainties, and making a decision for treatment, can be the toughest part.
Regards,
Rob
-
Hi Rocky,
I am in total agreement with Rob....
One point you may want to consider in the decision process.
GK, as many here will note, can be used when hearing levels are very small %.... the thought process is... by "fractionating" a radio-treatment (ie: CK, Trilogy, FSR, Proton, etc).... it has a slightly higher % of hearing preservation. Maybe a thought to consider... but, again, I'm in total agreement with Rob about finding a team with the most experience treating AN's of your size, location, current hearing levels, etc.
Just a thought... pose this to the docs on the CK Patient support board as they are very well versed on all radio-treatments for AN's....
http://www.cyberknifesupport.org/forum/
They can give you a professional input to the question. Both are extremely viable treatment options for AN's.... so I also have faith in you to go with your gut.... you will know what is best for you.
Phyl
-
Rocky -
I just wanted to reinforce what Phyl said.
In the end you will know what is right for you; so go with your gut :)
Please let us know what you decide.
Jan
-
Also,
if your hearing is excellent, and your AN is so small, you might consider "watch and wait" for at least 6 months, get another MRI, and determine whether the AN is growing. Of course you would have to take the chance that your hearing might deteriorate during that time. Only you know whether it has been recently getting worse.
Katherine
-
Rocky,
I would agree with the responses you've received from the others so far. If the issue you're asking about is solely hearing preservation then 3 fraction CK as Dr. Chang alluded to will increase your probability of maintaining your current hearing by about 15% over GK (approx 60% for one dose vs. approx 75% for fractioned CK) . Said another way. 6 out of 10 people who go the GK route will retain their current hearing, 3 out of 4 will do so with CK.
Treatment teams experience with AN's is always a plus but less of an issue for me with radiosurgery than surgery. I wouldn't feel comfortable with a surgeon until they had done 400-500 procedures but given radiosurgery is so computerized, has so many people involved in the treatment review and AN's are one of the easier things to do relative to other types of tumors, personally, I would feel comfortable with any team in the 50-100 range. The experience curve just isn't as steep relative to microsurgery.
Mark
-
I don't think I could be any more confused about GK vs CK. The best we have here where I live in Devner is GK. CK is new in Boulder. Does anyone know anything about CK if Boulder? Their website didn't look so hot. I hear their commercials on the radio and tv, but other than that I don't know much more. Maybe I'll try to find out more about CK in Boulder. It always scares me when something is new and nothing to compare to in the area. The GK seems to have a good reputation here from what I hear. I want the GK to work, but I am so confused because it sounds like CK is better suited for those who want to preserve their hearing. I would love to hear lots and lots of positive GK stories. Helpppppppp. Nancy
-
Nancy,
Actually, the Rocky Mt CK center at Boulder Community is one of the more established CK centers going. It was set up by Dr. Dave Martin who was working with Steve Chang at Stanford when I was treated in 2001. I think they were up and running in 02 or 03. Dr. Martin is no longer there but I understand they have a fairly top notch staff. I chatted with a lady from Denver about 4 years ago and she was treated there and is doing well. If you prefer CK over GK, I would not hesitate to go to Boulder. As far as the differences between CK and GK, I thought Tumbleweed's earlier post today was one of the best I've seen.
Mark
-
Here's a direct link to my post that Mark alluded to (thanks for the kudos, Mark):
http://anausa.org/forum/index.php?topic=6670.0
I hope you find it helpful.
I would encourage you to take your time in making your decision. There should be no rush to treat a small tumor, unless your symptoms are bad and/or getting worse. If your tumor is slow-growing, you could possibly avoid treatment for 10 years or more. Dr. Derald Brackmann (famous neurosurgeon at House Ear Clinic) counseled me that he's seen some ANs not grow for 20 years! (Unfortunately, mine thinks it's in a race to finish first! ::)All forms of treatment (even CK and GK) have potentially damaging side effects and should be sought, IMO, only if and when necessary.
I've personally opted for CK because of the statistically higher chance of preserving my hearing (and because of other factors detailed in my post linked to here). But it's a very personal decision. The decision YOU make is the best one for YOU.
Best wishes,
Tumbleweed
-
Mark,
I didn't know that about Rocky Mountain Center in Boulder. I have looked on their website, and I didn't get very much info from it. As for a list of doctors, it said that page was under construction. You would think that if they have been around since '02 or '03 the they would have a better more informing website. They advertise a lot on the radio and tv. Maybe I will start a thread about CK in Boulder. It always helps to go to the source with patients who have been through the process. Thanks. Nancy
-
Nancy,
The physician page is under construction which maybe nothing more than aN infamous webmaster tinkering with the format or adding content which they are apt to do. ;D The rest of the web site actually looks pretty comprehensive to me for a community based hospital. You might want to ask Dr. Medbery over on the CK board who the "go to docs" are there since he trains a lot of them. Other options would be to the Boulder community web site and look up radiation oncologists, it might reference those involved in the CK program
Mark
-
Thanks Mark,
I was so closed minded about the CK in Boulder that I had pretty much crossed it off my list. In past postings a couple of years ago when I first found out about my AN, I asked about the best docs in Denver area for any kind of treatment. The Denver folks told me about the docs here who do surgery and GK, but I never got anything about the CK in Boulder. Hate to say it, but a lot of people here in Denver believe Boulder is 30 square miles surrounded by reality so I have never thought to go there for info. I should give Boulder a break I guess. Sorry if I have offended anyone from Boulder, and I really do enjoy visiting over there (only thirty miles away from Denver). I have just never heard of anyone getting treatment in Boulder except for routine stuff. So I am being a little judgemental, and I need to give them a chance. I think I read though that Denver might have a CK when I googled, but I didn't have time to check it out. I'm going to do it now. Thanks for helping me see that Boulder could actually have some reality in there.
Nancy
-
Nancy,
As a graduate of the University of Colorado, Boulder, I could not agree more with your characterization that the town is 30 sq miles surrounded by reality. I went to the college of business which is about the only part of the population that can probably relate to the rest of the world ;D. It's a great town and was a great place to go to school but the general mentality does tend to follow the Kingdom of Berkeley :o
Mark
-
Mark,
I am confused. Did you have your CK at Stanford or Boulder? I guess I didn't catch your Boulder connection. How funny! I went to graduate school (social work) at University of Denver, and many of my classmates were from Boulder. Some of those folks were kind of out there, but it can be true for my profession anyway. I think University of Colorado is a fine school, but they do know how to party (and, I'm not saying that is a bad thing!). I looked again, and it does seem that Boulder has the only CK in CO.
Thanks for not taking my Boulder comment the wrong way. Nancy
-
Nancy,
CK was at Stanford as I've lived in the Bay area since 1992. College "education" and other antics occurred at CU and I lived in the Denver area for most of the 80's
Mark
-
Hi, Mark:
I see that your AN's size was within 1 mm of the size of my tumor and that you were treated by the same Stanford doctors (Chang and Gibbs) scheduled to treat me. Did your tumor swell? If so, how soon after treatment did the onset of swelling-related symptoms occur and how many months did they last? Did you have any lasting effects (such as partial or complete hearing loss) from reaction to the treatment?
I know there are many unknown factors that cause a tumor to swell after CK, but your circumstances were so close to mine that your experience might be at least partially relevant to what I can expect post-CK.
Many thanks,
Tumbleweed
-
Tumbleweed,
Based on my MRI's there was no apparent swelling of the AN noted. It was smaller at 6 months and then again at 1 year and continued to slightly shrink over the last 6 years although it is essentially stable. Current size is about 1.5. I find people tend to forget that MRI's are a snap shot in time and a lot of things can happen in between 6 month windows, so mine may have swelled sometime in the first 6 months but was finished with that before the first MRI was taken. I did have some transient reactions , mostly in the first 3 months post treatment. From about week 2 through 6 I had what I termed episodes of "the fuzzies" where once or twice a day I would get a moment of vertigo, usually about 30 seconds to a minute long. Not enough to cause an issue , but certainly noticeable. At right about 6 weeks I was out for a run and all of a sudden my I started to notice there were 2 of everything :o and my head was spinning. Walked my way back home and called Stanford. Dr. Chang felt it was nerve irritation from the radiation and called in a prescription for decadron. I laid down for about 2-3 hours and the episode ended before I got the steroids. I took them for a couple of days, but started to feel wired and stopped. I didn't have any reactions or problems after that point so all in all I had pretty minor reactions. Were they caused by swelling or , as Dr. Chang felt, radiation induced nerve irritation? I don't know and at some level it doesn't really matter in the big picture. To date, I've had no deficits as a result of treatment in either nearing or facial nerve function. Your in the hands of an excellent team of Doctors and I think Stanford is up to something like 700 plus ANs treated by CK, so I'm sure all will go well for you.
Mark
-
Mark,
It was interesting to hear your afterstory from your CK. I pretty much had some of the same questions as tumbleweed. I am concerned about swelling and possibly having to take steriods. I have bipolar disorder and was once prescribed prednisone by an ENT for a sinus issue. I slipped into a deep depression after taking it only for a couple of days. I felt like killing myself, and it took about a week for me to get my mood back on track. Psychiatrist told me to never take any kind of steriod. I would hate to have swelling and then takie a steriod and at the same time be put on suicide watch. I have a fairly stable mood even as I go through this AN stuff. I am sure I would consult with my psychiatrist about options. I haven't seen him in a year so it hasn't been an issue that has come up since I wasn't having any problems a year ago. Good thing is that my AN doc and psychiatrist are friends so that will help. Glad to hear that you are doing well. I am really getting convinced that I should check out Stanford and the CK in Boulder. Hopefully you enjoyed living in CO. I love it here. Thanks for sharing.
Nancy
-
Nancy,
For what it is worth, I never took steroids after treatment. I did take the one blue pill on the three days of treatment (Decadron), but that was it.
I had my six month MRI here in Portland, and mailed it to Chang's office. Ami, one of the medical support staff, called with his comments. We discussed that I am still a candidate for swelling issues for another 12 months, and I asked about steroids. She said that it is rare for post treatment swelling to cause any permanent damage; the prescription of steroids is mainly to address patient comfort during the swelling phase, and is optional.
So you don't have to take steroids. Even if you do have swelling, you may find that Ibuprofen is sufficient to manage it. Since you have a negative reaction to steroids, it would make sense to take Ibuprofen (or other anti-inflammation medicine) and grin and bear it, should the occasion ever arise. I did that during a two week long phase at about 3 months.
Steve
-
Steve,
Good to know, and I am definitely relieved to know about other options than steriods. The thought of what those steriods did to me makes me want to throw up. I have never felt so depressed and suicidal in my life. If I hadn't gotten to my psychiatrist right away, I seriously think I could have jumped off a tall building. Luckily I had the insight to see that something wasn't right and I rushed to the doctor that day. You are a big help Steve. Thanks for your widom. My son's name is Steve. Easy to remember you! Nancy
-
Nancy
Relative to the steroid issue, I would echo Steve's comments. 1) they are rarely required and 2) most docs only prescribe them if the patient is really having difficult symptoms. Like Steve, I took the anti nausea and steroid pills after the first treatment because I thought I had to. on the second day when I told them I felt fine, it was optional and I declined them. As I shared with Tumbleweed, I took the steroids for a few days after my big vertigo event, but in truth, it had resolved itself before I even got to the pharmacy and I really never needed to take them. I would not be concerned with that issue at all in making your treatment choice.
I enjoyed Colorado a lot and still consider it home even though I grew up on the east coast. I don't know that my path will get me back there at some point, but I would be happy if it did.
Mark
-
Mark and Steve,
Thanks for your comments about steriods. If it comes right down to it, and that is the only option they give me, then I will get on my bandwagon and have some back-up to go on. I haven't heard of Decadron Steve so I'll have to check that out. Mark it has changed a lot in my 16 years here in CO, but it is still beautiful, and I love living here. It is my home now. I grew up in Mississippi so you can probably understand why I love it here. Don't get me wrong MS, but I don't think y'all want me back now. I have lost a lot of my Southern ways. I still go for visits though, and I enjoy it very much. People here still pick up on my Southern accent so I am ingrained in one way or another. I feel relieved about the steriods issue. Thanks guys.
Nancy Drew
-
Thanks a ton, Mark and Steve, for your post-CK stories. They are incredibly helpful to read.
Dr Chang's office said I could have a Decadron prescription to have on hand in case of an "emergency" case of swelling. I'm going on an extremely important (and draining) business trip just 2 weeks after my last CK treatment and can't afford to be laid up with vertigo attacks, as about 15 people from different businesses will be completely depending on me to direct everything throughout the week. Even more nerve-wracking is that my wife and I have a summer full of backpacking planned, and we like to go off-trail into very remote areas. So I would want to have some Decadron with me in case I run into trouble in the middle of nowhere.
I'm a tad nervous that you had a reaction at two weeks post-CK, Mark. I sure hope that, if it happens to me, it waits til week #4 when I'm back home!
Thanks again for sharing your experiences.
Best wishes,
Tumbleweed
-
From about week 2 through 6 I had what I termed episodes of "the fuzzies" where once or twice a day I would get a moment of vertigo, usually about 30 seconds to a minute long. Not enough to cause an issue , but certainly noticeable...
Mark
Hi, Mark:
Thinking about this more, was this actually true vertigo you suffered (room actually looks like it's spinning in circles) or just disequilibrium (a sense of imbalance but not spinning) and/or lightheadedness. And when you say it didn't happen enough to cause an issue, do you mean you could pretty well tough it out and keep doing what you were doing when the "attack" came on? I'm pretty nervous that I might get actual vertigo attacks and be knocked on my butt while I'm on my business trip (during the third week after my CK treatment). I had severe vertigo attacks eight years ago; they were so disabling I couldn't even lift or move my head in bed or drink water without throwing up (it landed me in the ER). Can you please clarify your comments? It would be a big help to me.
Many thanks,
Tumbleweed
-
Tumbleweed,
The "fuzzies" were more just a brief sense of disequilibrium. I might be standing in a hallway talking to someone and a little wave would come over me, but nothing that would interrupt the conversation. They are also not anything I've heard others mention , so they were probably just unique to me. The only real bout of vertigo I had was that day on the run and it lasted a couple of hours. I actually found the "fuzzies" somewhat reassuring that something had happened in treatment. The CK process was so seamless, probably the most difficult thing I dealt with for the first couple of years is wondering if it worked ;D
Mark
-
Thanks so much for your clarification, Mark. That makes me a bit more confident I can do the treatment before my end-of-July business trip (which is good because otherwise I'd have to wait another 7 weeks for treatment due to an impossible schedule in early August).
Many thanks,
Michael