ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: malakyte on November 07, 2007, 10:01:33 am
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Well where do i begin? I appologize ahead of time for the length of this post. I have watched this board for several years while on my own watch and wait schedule, but never posted, being content to read of others experiences from time to time. So yeah, i am a newbie.
During this time my tumor has grown very slowly from 4 mm to 10 mm, several mm in the last year. So now comes the decision i have been dreading.
Most of the time i was researching surgery but when i finally started talking to doctors about it when it became obvious i would have to do something, they prefered the retrosigmoid approach. After reading about all the drilling and possible side effects i was not content to accept this.
I have had until recently nearly perfect hearing so really i wanted the hearing preservation surgery. But one visit to a neurosurgion told me that the tumor is on a lower nerve. The doctors here are not comfortable doing the middle fossa surgery and working past the facial nerve.
Plus i am on Kaiser and i must do what Kaiser says. So instead of getting a middle fossa operation at the House Ear Clinic as i wanted i must deal with the local surgeons abilities whose sucess rates are not nearly as good in my opinion.
Despite my fear of having my brain exposed to radiation, after careful consideration of side effects from both surgery and radiation, rates of sucess as well as my own ability to take time off work and our finances, i chose to go with radiation instead. Now i have come down to the wire i must choose again; Trilogy at Innova in Fairfax Virginia or Gamma knife in Washington Hospital Center.
I did call two different doctors to ask about the machines and the teams.
I asked:
1) About machine accuracy and got generally the same anwer, under a millimeter.
2) How many patients are treated/year?
Innova = 20/yr & WHC = 20-25/yr Both seem to be a small amount to me.
3) Rate of nerve preservation after 2 years?
Innova = 85% & WHC = 75-80% with a fall off rate the older you are.
4) How long has the team been working together?
Inova = 9 yrs & WHC = 5 1/2 yrs
5) Who is on the team? I got a few names which i will not put here because i have not looked them up yet.
6) I forgot to ask the Inova doctor about tumor death rate, but the WHC doctor said about 15-20%. I am wondering if there is a difference here.
7) I did not ask the Inova doctor about hot spots since they are not an issue with Trilogy, but did mention them to the WHC doctor and he did not seem to be very concerned about them. I recieved no specific facts.
I am leaning toward the Trilogy simply because the doctor was a lot nicer and much more willing to talk, Trilogy has the shaped beam that is supposed to be more precise than the gamma knife, it also does not have the problem of hot spots, there is a face mask instead of the screw on headframe and although i know its kinda silly i do not like the source of the energy for the gamma knife coming from cobalt.
So is there anything anyone would want to let me know about your experiences of either gamma knife or Trilogy? Is there something here i am missing about either procedure?
Any information is appreciated.
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malakyte,
you might find these threads from the CPSG site helpful re: trilogy vs. GK vs. CK
http://www.cyberknifesupport.org/forum/default.aspx?f=16&m=14240&g=14241#m14241
http://www.cyberknifesupport.org/forum/default.aspx?f=16&m=11510
http://www.cyberknifesupport.org/forum/default.aspx?f=16&m=11064
Also, the response on tumor death /control perplexed me. rates for all the machines run between 96-98% depending on the study
Mark
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Malakyte,
In April 2007, I had four treatments with the Trilogy machine at Vanderbilt Medical Hospital in Nashville, TN. Dr. Cmelak was my doctor. They gave me 6gy each day. The Trilogy machine is one of the easiest to work with and you will be in and out of your treatment session within 25 minutes or so. I had slightly decreased hearing in my left ear and the slight ever ringing noise. During the 2nd month after treatment, I was experiencing some swelling issues and went on a round of steroids for two weeks. If you can avoid them, I would. After the steroids, I was fine. It has now been 7 months and there has been no change in my hearing or the ringing noise.
I am an avid runner and cyclist and work out 4 times a week. Whatever radiation treatment that you choose, the hardest part will picking one of them. Dr. Cmelak told me that picking a treatment option is like picking a Dodge, Chevy or a Ford. Each one had their bells and whistles but it is up to you to which one you decide to go with. Good luck and feel free to contact me with any questions that you might have.
Cheers,
Craig
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Here is a link to a live webcast explaining the Trilogy machine. It mentions AN's.
http://www.or-live.com/Hartfordhospital/1862/event/webcast.cfm?
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I'll just join in with a plug for well-aimed radiation in 5 or fewer sessions, without naming a machine. ;) For a small tumor with substantial hearing that is worth preserving, it is an excellent choice.
Because it is done with machines, following well developed methods, the experience and track record of the facility are less of an issue than with surgery. With CK, for instance, the "cyberknife support docs", at the links posted by Mark, will say that any CK facility can do a fine job treating an AN.
If I had to choose between Trilogy and Gammaknife, I would pick... hmm, I'm not sure. The Trilogy machine is cooler looking, it's got that going for it. 8)
Steve
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Thank you all for your replies. I really appreciate that you took the time and trouble to help. So far I have read all the links except the one movie link because it required a plug in download and i am not on my own computer at this time.
Unfortunately i am no closer to a decision. There are so many conflicting claims and of course it seems that CK is better than anything else. I am not even sure if Kaiser will cover CK though i am pretty sure that it is available in the Washington DC area. I was told also by the Trilogy doctor that FRS is available with their machine also but i have heard both pros and cons about that also. My Neurosurgeon told me that with my size of tumor it made no difference which machine i chose.
I wish there was a place to find cold hard statistics about this that is available to the layman. Something you don't need a Master's degree to understand and can access without having to subscribe to a scientific journal online.
No one should have to make this kind of decision, a decision that will affect the quality of their life for the rest of their life.
I suppose this is just one of those things that one has to go with intuitively to make the final choice.
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Kaiser contracts with Stanford for CK on the west coast. I'm not sure what the arrangements back east are but I would be surprised if they didn't have an equivalent agreement with someone like Georgetown. Kaiser as a rule does not do radiosurgery themselves and tends to push toward surgery in CA since they have their own hospitals. You can get radiosurgery if you push for it from my ( and others ) experience
Mark
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It seems like each treatment outcome has to do with the individual rather than the machine as with all the bad outcomes.
I have read a lot about CK on this board and it does look very good. I do know it is in the area, but know nothing about the experience of the team. Anyway i will call and ask about its availiability through Kaiser.
I really just want to get it over with and all this indecision is just taking much longer than i thought. In December i will be taking a round trip airplane ride to see my parents in Texas and am worried about any effects from the flights. I wanted to have the procedure done before that, but am not sure if anything but the Trilogy would be available before then.
Every day it seems my tinnitus is getting worse and aside from mild balance problems i also get feelings of fullness in my left ear. This stuff has only been appearing in the last few months and now i am concerned with irreversable damage the longer i wait. And the way the doctors are it seems the more i investigate, the longer the wait.
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I once posted in this forum how nutty it is that the final decision on treatment is left to the one person involved who knows the least about it. :-\
Here is what I did to get my health insurance to go with Cyberknife at Stanford. I got copies of the radiologist report on the MRI, the hearing and vestibular reports, and the ENT report, and faxed them to the nurse in charge of claims at the insurance company. I also got the name and phone of the scheduler at Stanford, and put her in touch with the nurse. Once they both had all the information in front of them, it didn't take them long to work out the arrangement and it was approved. I just received the claim report from the insurance company, the one with the big 5 figure bill, and it shows their multi-plan discount, and that they are paying it all, down to the dime. ;D
So it might take a little work, but like Mark, I imagine you can get Kaiser to support CK if you push for it. If it is any help, here is a link to the Georgetown University hospital CK clinic:
http://www.georgetownuniversityhospital.org/body.cfm?id=451
Don't despair, and try to be patient. It is a big decision, and it is natural to feel overwhelmed by it, but you will get it sorted out. Making the right choice for you is well worth whatever time it takes now to get it clear in your mind.
Steve
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Alright i am going to contact Georgetown University Hospital and put them through the same questions. I may also try to reach my other doctors to see if i can find out about cyberknife through them also. In the watch and wait phase i did see a couple neurosurgeons.
I am leaning more toward cyberknife from what i have read and i think Kaiser must be able to support that option too. Why not when there is a facility close by? I guess the fact that it is a dedicated machine, has greater accuracy and not as much spill over greatly appeals to me.
One of the things i will be looking for is the experience of the team/time they have been together as well as the rate of AN patients they have per year. Am i wrong about this or does 20-25 patients a year seem to be not that much?
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Not sure what Georgetown's AN numbers are, but I'm pretty sure they are the oldest Cyberknife center on the east coast and second to Stanford in total number of Cyberknife procedures performed. They just installed a second Cyberknife this summer to keep up with caseload. Dr. Walter Jean is the neurosurgeon there that handles AN cases.
I was treated there 3 months ago, and it went well. I'm experiencing some side-effects now, probably related to swelling, which can't really be avoided with any of the radiation options. More of a nuisance than anything else.
'Goinbatty' is at Georgetown for consults this week, so you may want to check out her posts. She probably knows their # AN's per year too.
Good Luck!
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I just completed 5 treatments at Georgetown University--my AN is almost identical to JB's, so our treatments were probably almost the same. I'm doing quite well, maybe just a little tired at times--could be the weather... Anyhow, I think the docs at Georgetown tend to give 3 fractions @ 7Gy for smaller ANs like your's. They have treated maybe 30 AN patients with CK in the last 5 years or so. Dr. Jean did emphasize that they have treated many other similar brain tumors with CK (meningiomas, etc..). I hope you can compare notes with goinbatty, since her AN is about the same as your's. Good luck with Kaiser.
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Well i have good news and bad news.
The bad news is that i did call Georgetown University Hospital and they told me there that they have no contract with Kaiser.. none at all, no way to get around it.. like that..
So i started doing a search for cyberknife with Kaiser in Maryland and came up with Sinai Hospital in Baltimore. I would love to go to Georgetown but that does not look very likely at all right now. There is no way i could afford any of this without Kaiser.
Has anyone heard of Sinai hospital?
Seems the only other option now is the gamma knife at Washington Hospital Center and that is not really my first choice.. but if the gamma knife team has more experience and a better record it may be my best option.
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malakyte,
this should help... a link to Sinai and the CK center there....
http://www.lifebridgehealth.org/sinaibody.cfm?id=2118
Phyl
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After looking through their site, i am thinking that actually Sinai might not be so bad. Though its not the highest volume and i am very disappointed GT it is unavailable to me, Sinai's page did impress me.. That they are willing to list their doctors on their webpage is a good sign.
It is much less convenient being in Baltimore since we live much closer to Washington DC and it will be much less convenient if i have to go for more than a single treatment, but if it means keeping my hearing, the inconvenience will be well worth it.
Thank you all very much for your help.
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Sinai has also had CK for awhile and although not as long as georgetown, AN's are one of the easiest things for CK to do and the expereince curve is fairly short from what I'm told. Also, when evaluating a team's radiosurgery experience you have to look at it in terms of all machines , not just CK. Most radiation oncologists have had a number of years of experience in treating AN's with GK or another technology which is relevant in considering how they would do with CK. CK is simply a more advanced technology, but the bilogical treatment and dose protocols are not radically different. To not look at the team's total radiation expereince would be like taking a world class race driver with 20 years of results and discounting it because he / she suddenly started driving a newer faster car than before.
Mark
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Malakyte,
Do not settle for less than the treatment you want close to home due to no contract between the medical facility and your insurance carrier. I am the Director of Patient Fiinancial Services at a hospital and it is a common daily practice that we make financial agreements with insurance companies with whom we do not have a contract. It is a "one time" agreement and can be arranged with the insurance Rep. and the hospital or medical center prior to treatment. The hospital just must sign an agreement to provide the service and accept an agreed amount of charges as payment in full. That is all Kaiser is worried about. Usually 65%, or so, of actual charges and then write off the balance as a contractual adjustment and agree NOT to bill the patient for more than their normal co-pay or deductible. Our healthcare organization have 300 hospitals & do not have a contract with Kaiser of CA. in most of them either, but do make agreements with Kaiser on a regular basis to treat their patients based on the fact we are their patient's closest convenient location for treatment. Stand your ground as you are their customer and are always right! Get your HR department to call if necessary to support you and get documentation from your physicians as someone suggested above. As for me, I am in your same boat trying to make a decision and am leaning more toward Trilogy myself after much research.
Thanks for all the input from everyone on this site and especially the links and above Trilogy video. It is great and very encouraging seeing the precision offered and hearing your stories of success and suggestions. I have an appointment Dec 11th for a consultation. Best of luck to you. Janice
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Hi Malakyte,
I understand your concern about high radiation dose of Gamma Knife vs Trilogy. Gamma Knife is high dose no question about that....but it has 201 gamma rays beam that is when it passed its way through the skull its weak and will not cause any detectable biological effects on the healthy brain tissue...but when it converged to the target tumor then it becomes high dose, enough to destroys the tumor. Because it is highly focused than trilogy or cyberknife, you know that it will target just the tumor. Gamma Knife has 0.3mm accuracy while CK is 1mm. This is why it is done in one session only and as an outpatient. The team composed of the neurosurgeon, radiation oncology ,medical physicist and nurses and mri tech.
So for small tumors intracranially ...Gamma Knife is still the gold standard.
I hope you this will prompt you to research more about Gamma Knife as a option treatment for the tumor.
Good luck,
jemcmac@gmail.com
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hi jemcmac and welcome to the discussion forums. Good to have you here and have you participating :)
I am a little confused as GK and CK both have approx the same accuracies of 0.86-0.89mm... can you please advise where your figure comes from? Both are pretty even in accurracy, although GK may be a slight bit off due to head frame calibration. But, both run about the same for accuracy.
Again, welcome! :)
Phyl
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Hi Ppearl,
Thanks for welcoming me.
Check this one site: http://www1.wfubmc.edu/gammaknife/Gamma+Knife+vs+CyberKnife/
I know the stereotactic frame can be a downside of GK but this is all done with conscious sedation and local anesthesia. THe stereotactic frame permits accurate positioning. THink of it as it is easier to aim on a steady target. For intracranial tumor, i will still choose GK.
Regards,
jemcmac
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hi jemcmac
thanks for the heads up... please know that the Wake Forest GK program has been discussed here at great length with an interesting foundation. Seems Elecktra, the GK mfg, has a financial interest in the GK program there and has been very questionable (esp. their marketing practice of GK at the University hospital) in the past. Please see this thread as I'd like your take on this... info noted in the thread by Dr. Medbury, who performs GK and CK in OKC, seems to note an interesting twist to the program.
http://anausa.org/forum/index.php?PHPSESSID=7e3b7f6c7494e84f63bded67820d0762&PHPSESSID=93b7ee3103e55beb95a88a0ea8a4bc70&topic=921.0
Would love your thoughts on it.
Again, welcome.
Phyl
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jemcmac,
I'll add my welcome to the forum to Phyl's as well. I also think the GK is a good choice for treating the AN, particularly if you are comfortable with the one dose protocol outcomes on nerve preservation as opposed to the fractionated radiosurgery approach. So I would certainly support your choice in that context.
That being said, Everyone needs to be careful in basing conclusions or opinions of different machines on the propaganda pieces published by the hospitals that have a vested interest in them. I would make that statement about any of the machines. Peer reviewed clinical studies are a much more reliable and relevant reference point.
The Wake Forest link you referenced as been posted by others in the past and the misrepresentations made in it regarding CK addressed definitively. The ability to navigate the archives on this site is challenging, but they are there if you want to read them. it is a pretty safe bet this piece was written by elektra , the manufacturer of the GK since the Univ of VA web site has the same information practically verbatim. It should also be noted that the primary radiation oncologist at Wake Forest is the son of an executive at Elektra, although that conflict of interest is not disclosed. In my personal opinion, in reflects poorly on the credibility of an institution like Wake Forest to allow distortions like these to be on this web site. If they want to advertise the positive attributes of the GK that's fine, but to essentially slander a competitive machine is clearly an unprofessional thing to do and probably refelcts the fact that CK placements are eroding their market share.
Specific to the accuracy statistics that were quoted, it is important to recognize the difference between total error and machine error. the GK .3 mm is essentially machine error while the .89 mm error shown in clinical study for CK is total error. It's apples and oranges and I would suggest only total error is ultimately relevant. The other elements of targeting error are 1) the inherent error variance of the CT scan and in the case of GK only as Phyl pointed out is 2) the error as part of the frame itself. In point of fact, the total error of GK is typically shown to be between 1 to 1.3 mm. The variation is how old the frame is , how much it has been "torked" in usage and how often it has been calibrated. Again, as Phyl indicated both machines provide a very equivalent accuracy for treating AN's. However, GK is also not the definitive "gold standard" anymore in the area of accuracy.
I would still say GK and CK as true radiosurgery machines are better in some capabilities than others but choosing between two comes down to two criteria
If one wants a one dose treatment then both are equally good and it comes down to how big a deal having the frame screwed into the head is as a source of discomfort
If one wants a fractionated approach, then the choice is CK since GK isn't typically used that way given no one wants to endure the frame for 2-3 days.
Again, I think your choice of GK for treatment is great, but hospitals (or manufacturers) putting out distorted information to patients is a real sore spot for me.
Best
Mark
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What is up with the "gold standard" business, anyway? It sounds like marketing to me. I have never heard of such terms being used to describe medical procedures and equipment before. Is that an officially designated status, or something they just decided to award themselves?
Besides that, everyone knows that a gold Mastercard is not the best. We want platinum! :D