ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: windy on July 03, 2008, 02:27:09 pm
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I am so torn about my radiosurgery path. Without question, I know I want radiosurgery. I find myself, however, going back and forth between the treatment chocies. I know most seem to say, "go wtih your gut". What if you don't know what your gut is trying to tell you? I have one group (3 area physicians) that feels I should go put all my trust in this neurosurgeon (Harvard/Columbia grad.) and go forward with GK. Also, I have heard of three women who have used this facility and seem to be fine, thus far. Based on the scary side effects he stated I could suffer, as well as my appt with his accompanying radiation oncologist, I still feel unsure of this route. When the radiation oncologist stated he had people who were paralyzed without hesitation, I found myself being hesitant! I asked how large were their tumors, "like 2CM", and he said yes! Also, the neurosurgeons words of "I have had people come off the table and they told me they were deaf...", keep ringing in my ear. My hearing is pretty good. I really don't notice much that it has diminished. On my hearing test, there is a 100% percentage given on the left and the right ear (my AN ear).
One vote for GK is that I read an article yesterday (the link was found through this board) about a man who had GK treatment in CO and his AN had shrunk 75% in 5 years.! His symptoms had diminished and he felt great. That is very encouraging news. Then I thought, should I seek GK treatment elsewhere? Has CK shrunk tumors to that degree, or is he just an unusual case?
In the meantime, Dr. Chang has reviewed my MRI and said I was "excellent candidate". In the CK route, I somehow hang on to the thought that I have a better chance of hearing retention and have not heard of anyone being paralyzed. Am I wrong to think this? I am waiting to hear back from Dr. Chang's scheduler. I left her a message on her voicemail, but she has not responded back, thus far. I don't have any idea of the timeframe involved in the CA route. I also have a great deal of cost involved in going that route, but my family is helping me greatly.
I am having symptoms in my face, so that makes me want to make a move faster. I hate the waiting that is involved. Can anyone offer any advice? I would greatly appreciate your help.
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Windy -
this is a very difficult question, as I'm quite sure you already know :P
It sounds like you went "with your gut" to choose radiation over surgery, so IMO you are halfway there - which is a great thing - but obviously you can't stop halfway.
I am one who advocates "going with your gut", but I also advocate finding comfort and confidence in the doctor(s) who will be treating you. I think this comfort and confidence should also extend to your feelings on CK vs GK. Which procedure are you comfortable with? Which procedure are you confident in?
IMO you also need to assess what the possible side-effects of each procedure are and what the odds are of you having these side-effects. However, remember that side-effects are definitely a risk we all take, but a risk we can do nothing about. As someone else on the forum once said, all the side-effects in the world and the odds related to them don't mean a thing until you're the one who does or doesn't have them. Nothing "AN" is 100% guaranteed.
Maybe using the old technique of writing down pros vs cons on a sheet of paper would help sort things out for you.
I wish I had the magical answer for you, but unfortunately, I don't.
Best of luck with this tough decision.
Jan
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Windy--
Here's a purely personal point of view.
I'm in academia. My perspective on the world of universities is that there are some places that have enormous amounts of money to burn, and they spend it on having the absolute best of everything. They don't always make perfect judgments, but their judgment is usually pretty good, and they never cut corners. Based on this principle, I would expect that Stanford and Johns Hopkins, which have a lot of money, would offer the best odds for CK treatment.
For small, simple ANs, you would probably see success stats that are nearly as good, or maybe even as good, at many other treatment centers. I had my AN zapped at the University of Florida. The AN was small, the place was nearby, and the treatment team was very experienced. I have no reservations about my decision.
There is no single, right decision. As the U. Pittsburgh site shows, when large numbers of neurosurgeons are asked to give opinions on hypothetical cases involving ANs, there is a wide range of opinions.
As many people on this site have said, the important thing is not to look back. This is a very treatable condition, and you can make a good decision.
Mac
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Hi Windy,
Well, the threat of being paralyzed as a side effect of GK is a new one for me. I've heard that is a possible consequence of doing nothing. I am not a doctor, nor do I play one on TV ;), but perhaps that side-effect was caused due to the location of the AN. If it is pressing on the brain stem, then radiation can cause the AN to swell, thereby causing problems. It would be , I would think, a most very rare thing.
The problem with having this stupid AN, is that all of us are so different and our AN's react differently, and grow differently, and minute things can cause side effects that one person will be plagued with and another person won't. My AN wasn't properly diagnosed for a year and a half after I started having symptoms - tinnitus and fullness in the ear. In that time frame of 18 mos or so, I lost a lot of my usable hearing in that ear and I developed facial numbness. I have a 2 CM neuroma. Other people with that size of a tumor might not have any facial numbness. Because of my doctor's preference, my age, and my general health issues, I was deemed a good candidate for GK, which I had. My doctor hoped that the facial numbness would go away or get better but that hasn't happened. My hearing is probably worse than when I went in for GK. But, the darn thing is dying and not growing. That's the good news! The bad news is that I'll have to live with these symptoms for the rest of my life. I know in my heart that nothing is going to go away, and I pray that nothing gets worse. I am grateful that I didn't have to undergo microsurgery on my head!
I wish I could tell you which way to jump. I had GK, because at that time that's all that there was available in my area. Now there is CK. They are both highly effective in treating AN's. I guess you just start writing down the Pro's and Con's of each treatment and then maybe one will have the deciding factor that will make it the more appealing choice. If you think, "no way am I going to do a headframe", then CK is the way to go. If you think, "Wow, I'd like to get this over with in one day"..then GK may be what you'd go with.
As for the hearing....in my opinion, you can list all the statistics that you want in favor of one or the other and it boils down to having to wait to see what your body is going to do with the treatment. It has to do with the damage your AN is doing to your nerve, how the tumor reacts to the radiation, how good your "team" is at pinpoint accuracy. And with everything they use in these modern facilities, that's usually pretty darn good, I think.) There are just so many factors that are hard to control. It's too bad we can't look into a crystal ball and see the outcomes we'd have with the different options...(wouldn't THAT be nice!), but we can't. We just have to go with the best available information and the doctor that has the best track record, and then make a decision and realize that you are taking advantage of some of the best medical equipment and specialists in the business and let the chips fall where they may!
Best of luck to you in your decision,
Sue in Vancouver, USA
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When I was looking in to GK or CK as treatment options I was definitely more open to going to one of the "big" centers to receive treatments. One reason was I hadn't found a physician that I found in my area that I felt had done enough and that I was ready to put my brain in his hands. Also, since the recovery time is much difference then surgery then traveling was more of an option. I did end up choosing surgery which I am glad I did for myself and I was disappointed that radiation did not end up being an equal option. But I did feel very confident in my surgeons, I was okay with putting my brain in their hands which I think is very important.
Good luck. I suggest to keep searching and you will know which treatment and doctor to go with. In my opinion the worst part is the decision making process, but believe me you have the support and empathy of everyone here.
Julie
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Windy, did you mean facial paralysis? I thought maybe you were talking about not being able to walk! That kind of paralyzed. I think I was misreading what you meant. Maybe.
My neurosurgeon thinks that there are too many people who end up with permanent facial paralysis, which is why he favors a non-surgical route if it's possible. I suppose that's what you were talking about.
Sue in Vancouver, USA
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Windy:
You've already received some very astute and sensible responses to your question. Allow me to give you my feedback (it's free).
I'll bet you've heard the cliché:'life is a risk'. Well, so is making a decision on your AN treatment. There will never be any guarantees. Yes, bad things can and occasionally do happen during and after radiation treatment. Doctors have an ethical obligation to explain those remote risks to you and you need to put them in your equation when deciding on type of treatment. That having been done, realize that the 'horror stories' are really quite rare and that none of that is likely to occur. Basically - keep the risks in perspective. As previously stated, you absolutely must trust your doctor(s). That is paramount to feeling confident about your decision...whatever it is. Only you can do this but don't agonize over it or wait too long, as that will be counterproductive, as you know.
I wish you clear thinking and a very resounding 'gut' that makes it's message clearly known, as soon as possible. :)
Jim
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Hi All,
Thank you for your support and suggestions on my road to treatment. I still am not sure, but I know I will try to make my final decision quite soon.
Sue, I should have said facial paralysis when I said "paralyzed". I did mean facial paralysis. The fact that they did not discuss that the risks for paralysis were minimal, I suppose made me less confident in them. They are available for treatment this week, if I decide to use them.
I am starting to have facial sensations daily now. Does that mean I need to act as quickly as possible? I get no help in this area (one neurosurgeon, neurologist, and radiation oncologist) stated they did "not know why I would have facial sensations." One even said I probably am imagining it just because I was told I had a brain tumor. I thought this was a possible problem with AN. Do they just not know the symptomology?
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Hi Windy,
Sorry you're having a rough time. As for myself, I went through 4 neurosurgeons altogether, one local, two telephonic, and then when I went for the CK consult when I decided that's what I wanted. I also sent several personal messages to Dr. Medberry on the CK forum who was very helpful. Only had one GK consult. Once I decided on CK, I contacted 5 facilities on the east coast before going with Georgetown.
Now regarding your initial post, and this is the nurse in me talking as well as from past experience with my own physicians even back to my childhood. When a doc says you may be imagining the symptoms, that makes me furious. As for myself, I would write him off for that reason alone. We all probably wonder ourselves if we are imagining symptoms but a physician has no right at all to say that. Just my opinion and sorry about being so blunt. I'll get off my soapbox now.
I do feel that you must feel comfortable with your treatment decision and have confidence in the treating physicians.
Forgot to tell you that the main reason I chose CK over GK was the frame vs mask, and the chance even if it's small that there would be better hearing preservation since mine was barely affected. Still doing well. Just increased tinnitis and a bit more clumsy.
Take care,
Sandra
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Windy,
There are certainly risks involved in anything - medical treatments, taking over the counter medicines, driving....
Doctors are required to tell you about any risks - no matter how far fetched they may seem. If one person just happened to get a cavity after having GK, then the risks would probably be expanded to involve dental problems! If one person just happened to fall off the treatment table, they'd have to tell you that was a risk too. Chances are, nothing like that will happen, but just because "you never know", the doctors like to cover all their bases as far as liability goes. Ever read the warnings on a bottle of Tylenol? It would make you afraid to take it, but I think in most cases that's pretty safe.
Hopefully you can get to a point where your gut is telling you what the right thing to do is. Like Jan said, you need to feel comfortable with your doctors first. Once you get to that point, I think you should have a pretty good feeling about what is right for you. Some people have interviewed quite a few doctors before finding the right one, so don't feel bad that you aren't quite comfortable yet!
Lori
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After all those posts, I don't mind just giving you a "gut reading." :)
I think your gut is telling you that 1) GK sounds pretty good; 2) you are not happy with that particular GK team; 3) CK might be a little better for hearing preservation; 4) you would like to hear from Scarlett at Stanford; and 5) you don't want to wait and find out where the facial tingling is headed.
That all seems reasonable to me; I think your gut is working fine. :)
If you can swing CK at Stanford, do that (I think my appointment was made about 1 month ahead of time). If you do GK, find another team that makes more sense to you. I would be confused too, if my doctors said they have had patients who got facial paralysis, but they "did not know why I would have facial sensations." Huh?
Steve
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Thanks for the points, Steve! I believe you have summed up my thoughts quite accurately. The last paragraph really got what I am thinking, but have not put it into words!!
Thanks again everyone for your input. I couldn't be where I am now without the help of the AN community. I am extremely appreciative of all of you and learning from your experiences and knowledge. You have helped me immensely in this journey!!
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Windy -
hate to rush you, but does that mean you've made a decision ???
Just curious,
Jan
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No, I have not made any final decisions. I am going to send off my MRI disc and notes tomorrow to another GK center, since it is highly unlikely I will go with this area's GK center.
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Wow Steve, you summed it up very well. And Windy, if GK is the treatment you go with, keep searching until you find the docs you're comfortable with. Good luck!
Sandra
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Windy, I was going through exactly the same struggles and thought-processes when I was diagnosed with a 2.5 cm AN about a year ago. I had facial numbness and very good hearing in my AN ear that I wanted to keep to the extent possible. Ultimately I chose Cyberknife because of the better hearing preservation rates (which is achieved without compromising tumor control rates). If you are interested in reading more about my personal decision making process, I describe my experience in some detail in the website that appears in my signature block below.
It sounds like you are well on your way to a treatment decision. Your gut WILL tell you when you are ready to move forward and where.
Good luck and be well,
Francesco
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Gut reaction to anything in life.... for me (and only me)... typical, the very first (initial) signal it gives is my ultimate gut choice. Anything after that, too easy for hem/haw, do this/do that..... (exception to this rule... when I decided to remarry.... had to do the hem/haw routine although on days the bloke irks me to no end, then... I shoulda stuck with my initial gut reaction! ;) )
I knew what my initial gut said when I was researching AN treatment options (all were available to me). I continued to do my research (boy, I overloaded on research).... and in the end, I ended up with my initial gut reaction... and as of today, so far, so good.
Windy, you will know what the right choice is for you and your situation... and the perfect time to make that choice.
Hang in there... truly, once you decide, the monkey will come off your back......
Phyl
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Your gut WILL tell you when you are ready to move forward and where.
Gut reaction to anything in life.... for me (and only me)... typical, the very first (initial) signal it gives is my ultimate gut choice. Anything after that, too easy for hem/haw, do this/do that.....
I agree with Francesco and Phyl.
Side note to Phyl. I had no idea the bloke wasn't your first husband. IMO you are one brave woman to take a chance on love again ;) Sounds like it's turning out to be a good decision.
Jan
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I'll have to admit, my initial gut reaction was surgery. Months later and after tons of research, I started leaning toward CK. Then months later even still, my brain (or what's left of it at this age HA!), concluded CK was the best option for me. At that point, I wanted it done as in yesterday. One of my character flaws. With huge decisions, I have to know as much as I feel I can possibly know and then go for it.
Sandra
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I should have clarified my "go with your gut" advice.
I chose surgery, but radiation was my first "out of the box" thought.
After taking time to look at both treatment options and weighing the pros & cons, my gut told me to go with the surgery.
So, while I'm all for "gut" reactions, it's usually after I've done my research.
Jan
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Windy,
I read your initial post here, and you stated you read about a guy in CO who had successful GK five years after the fact. I know it is hard to remember where we read what, but if you can remember the guy from CO, I would be interested in reading his story or communicating. I am from the Denver area, and I am in the process of making a decision like you--no gut feeling yet. I am leaning toward GK pretty much because we are supposed to have a good GK center here with excellent doctors, and I have been in contact with a guy here in CO who had a good result with GK in April. I am seeing his doctor next month. Hopefully you can remember where you saw the CO info. I would like to know where he got his GK and by who. I hope you are getting close to your decision. It is so hard, and I feel for you. If you get to your gut feeling, let me know how it feels. Thanks.
Nancy
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Hi Nancy! I just saw your post today. I am sending you a personal message with the web site address.
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Hi Windy,
I read your PM and just sent you one also. I just wanted to leave a post here to say that posting here is great, but also PMs are really helpful when you have more specific info that you can offer a person in a more directed way through a PM. I thank all of you for your PMs, and I also thank all of your for your replies on this message board. You guys have become my AN family, and I have had so many of you help me get through this "nutty" decision phase, and it is great to see that others in the desicion process have been helped as well. Like it has been mentioned over and over, all of these ANs are different, but I can say that we all have the common bond of having to deal with an AN. You just don't get this kind of personalized support from the average guy on the street. Thanks so much. And, kudos to the moderators here who follow us and lend a "good ear" and give such wonderful support.
Nancy
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You just don't get this kind of personalized support from the average guy on the street.
That's because none of us are average guys on the street.
We're all "special". My neurotologist has told me that many times - and I believe him ;D
Jan
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Hopefully the docs will think I am "special", too, when they aim that big does of radiation in my head! Nancy