Author Topic: Retreatment for failed radiosurgery  (Read 5806 times)

Mark

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Retreatment for failed radiosurgery
« on: March 09, 2006, 07:53:28 pm »
In the past couple of days there have a number of questions on whether an AN that exhibits regrowth after radiosurgery can be retreated or if surgery is the only alternative. There is not a lot ( if any) reliable documentation on this so I posed the question to the doctors on the CPSG board. Dr. Medberry and Dr. Chang both responded and I'll share their responses here. I'm not sure if I found Dr. Medberry's response particulary helpful, but from Dr. Chang's answer it seems to suggest that there may be a connection to the size of the AN. I would guess that the smaller the AN, the less initial radiation used probably opens up the possibility of retreatment whereas it might not be an option for larger ones. Just my guess. the other factor would be if it didn't work the first time for an individual is there some thought that it wouldn't work a second time for reasons unique to them.

I guess the good news would be the low frequency of occurrence limits the experience with it.  ;)

Here's the exchange for those interested

Mark

My post

Fortunately, the failure rate for radiosurgery on an acoustic neuroma appears to be a small percentage. However, in those occurences where it fails and regrowth occurs, are there any guidelines on having another treatment? Is the next option only surgery? Does it matter if the initial treament was one dose or staged? What factors and variables would affect a decision to retreat if is a possibility?

Any thoughts would be very much appreciated for several of us wondering over on the ANA board.

Thanks much


Dr. Medberry

We have had only a single failure in 10 years, so don't have a huge experience with this question. We chose surgery for the patient. I think that would be the choice at most centers. Probably radiosurgery could be re-done in some cases, but at least at our center it would probably require some VERY special circumstances for us to recommend that. There is just any data that I am aware of.

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311

Dr. Chang

Our experience has been that around 1% of ANs may require additional treatment, and in those cases I give the patient the option of a second course of radiosurgery or open surgery depending on the size of the AN at the time of consideration for a second treatment. Control rates are so good after radiosurgery, that few patients encounter this problem.

Steven D. Chang, MD
Assistant Professor
Department of Neurosurgery
Stanford University School of Medicine
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

ppearl214

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Re: Retreatment for failed radiosurgery
« Reply #1 on: March 10, 2006, 10:48:08 pm »
Thanks Mark!  You are too awesome! :)

I saw the post on the CK forum/board and appreciate you asking for us. Great info to keep in mind. :)

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

russ

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Re: Retreatment for failed radiosurgery
« Reply #2 on: March 20, 2006, 12:25:39 pm »
Dr. Medberry stated:

"We have had only a single failure in 10 years" vs. Dr Chang's "1%" is quite a huge difference, think? Someone ( Medberry ) must define success/failure!

 Medberry's stats are akin to what Lederman, now at Cabrini, reports and and those can be proven wrong.

 Russ

jamie

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Re: Retreatment for failed radiosurgery
« Reply #3 on: March 20, 2006, 06:08:34 pm »
"We have had only a single failure in 10 years" vs. Dr Chang's "1%" is quite a huge difference, think? Someone ( Medberry ) must define success/failure!

Obviously success/failure in this case means a tumor that requires further treatment. And perhaps Dr. Chang has treated more AN's with their CK (since they've had it longer and pretty much pioneered it) than Dr. Medbery, which could account for the "huge difference". Keep in mind this is from the CK support site, so if Dr. Medbery has only treated say 100 AN's with their CyberKnife, that would be 1%. Those numbers don't reflect their Gamma Knife stats...

Quote
Medberry's stats are akin to what Doctor, now at Cabrini, reports and and those can be proven wrong.

There seems to be a pattern here in comparing good doctors to Dr. L, first Dr. Chang, now Dr. Medbery. If you can prove Dr. Medbery's reports wrong, please enlighten us, otherwise there really is no basis in reality for disputing them, just pure speculation and false accusation. Sorry if I come across as confrontational, but Dr. Medbery and Dr. Chang don't deserve to be compared to Dr. L....
CyberKnife radiosurgery at Barrow Neurological Institute; 2.3 cm lower cranial nerve schwannoma

russ

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Re: Retreatment for failed radiosurgery
« Reply #4 on: March 21, 2006, 04:35:08 pm »
Hi
  I've access to and there are archives as to numerous Tx failures for all radiation types. This is true for surgery also. It would seem disengenuous to copy and paste the lengthy reports, posts, and email to the forum. A friend has a CD full of reported FSR failure postings from the old ANA list serve. The person saves everything!
  Seems realistic any facility/Dr.wants to report stats in favorable light.
  I feel part of the problem is however, the defined criteria for an irradiation success and the lack of accountability of reported stats to ANY agency of those who provide either surgery or radiation.
  Maybe ask the Drs to prove their claims?
  Take care!
   Russ

jamie

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Re: Retreatment for failed radiosurgery
« Reply #5 on: March 21, 2006, 05:29:34 pm »
Hi
  I've access to and there are archives as to numerous Tx failures for all radiation types. This is true for surgery also. It would seem disengenuous to copy and paste the lengthy reports, posts, and email to the forum. A friend has a CD full of reported FSR failure postings from the old ANA list serve. The person saves everything!

I don't think copying and pasting would be necessary, simple links would suffice, or even the forwarding of any email info you may have would be greatly appreciated...

Quote
Seems realistic any facility/Dr.wants to report stats in favorable light.

However there must be legal penalties for the omission of negative outcomes, that's why such reports are monitored and verified by peers and boards. Dr's cannot just decide what they want to report and what they do not...

Quote
  I feel part of the problem is however, the defined criteria for an irradiation success and the lack of accountability of reported stats to ANY agency of those who provide either surgery or radiation.

The criteria, to me, is simple, failure in most cases equals the need for further treatment, unless maybe the patient is very old and will probably die of natural causes before the tumor causes more problems.

Quote
Maybe ask the Drs to prove their claims?

Again, that's what peer reviews and medical licensing boards are for. I have no reason not to believe Dr. Medbery when he states he has only had one failure, in which further treatment was required. Apparently you do, and I would like to see the stats, applying to Dr. Medbery's practice, that makes you challenge his claim. The burden of proof is on the one making the accusation, otherwise one would have to assume that Dr. Medbery is telling the truth. 



CyberKnife radiosurgery at Barrow Neurological Institute; 2.3 cm lower cranial nerve schwannoma

russ

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Re: Retreatment for failed radiosurgery
« Reply #6 on: March 21, 2006, 06:10:34 pm »
Hi
  I believe true/honest reports of success or failure are known best by the pt. and their Drs in an individual and private manner.
  I disbelieve Medberry's statements, much as Ledermans.
  One cannot send links of email posts which were archived but lost by the ANA or private individual. The one individual with more than 1 CD is not going to forward those posted failures to a forum.
  It does seem forgotten the ANA itself has no archive of it's old list serve posts as their server crashed. There is archive of guestbook entry beginning Jan. 2005, I believe, but these mean little.
  So; Drs, cough up your medical records and defined criteria before soliciting pts.
  Russ

russ

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Re: Retreatment for failed radiosurgery
« Reply #7 on: March 21, 2006, 06:14:01 pm »
  "However there must be legal penalties for the omission of negative outcomes, that's why such reports are monitored and verified by peers and boards. Dr's cannot just decide what they want to report and what they do not..."

  There MUST be a supporting link for this statement. Would like to read it. Thanks.

  Have a nice night, Mark!

  Russ

jamie

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Re: Retreatment for failed radiosurgery
« Reply #8 on: March 21, 2006, 06:44:34 pm »
Well, we're all entitled to believe or disbelieve whatever we see fit. However, without real, supporting data to back up claims we make on this board that may be misinterpreted by newly diagnosed as actual fact, I believe it is irresponsible not to make it clear what we are stating is merely opinion, which it is. I could just as easily claim to have access to lots and lots of treatment failure reports and bad outcomes from reputable surgeons, and compare them to that plastic surgeon that put women's breast implants in a man by accident, but I would not be able to produce any of that data if you wanted to see it, because it doesn't really exist. But should everybody just take my word for it? No. Forgive me if I'm skeptical, but this is the internet...

Quote
There MUST be a supporting link for this statement. Would like to read it. Thanks.

I will definitely do my best to find an appropriate link for you in regards to penalties, whatever they may be, for a doctor who knowingly misrepresents statistics. 

A good place to start may be  http://www.okmedicalboard.org/ , but I will look for a more specific and helpful link..


Oh yeah, and I'm not Mark, but I'm sure he appreciates the well wishes....



CyberKnife radiosurgery at Barrow Neurological Institute; 2.3 cm lower cranial nerve schwannoma

Kilroy1976

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Re: Retreatment for failed radiosurgery
« Reply #9 on: March 22, 2006, 08:27:50 am »
Are you guys wanting to know the legal penalties for a doctor that, for example, publishes a study in which he fudges the information, or a doctor that knowingly/negligently/etc. gives incorrect information to a patient, or a doctor that falsifies a report to the state DOH or another agency with authority? Sorry, I'm having a bad morning and am a little confused.
1.8cm AN
Linac
December 13, 2005
Shands Hospital--University of Florida

jamie

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Re: Retreatment for failed radiosurgery
« Reply #10 on: March 22, 2006, 11:06:43 am »
I guess all of the above, I'm just having a difficult time finding the info as I'm sure it varies from state to state. But there has to be oversight and penalties for publishing knowingly false info, I find it impossible to believe that there's not. I'll keep searching when I have the time...
CyberKnife radiosurgery at Barrow Neurological Institute; 2.3 cm lower cranial nerve schwannoma

Kilroy1976

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Re: Retreatment for failed radiosurgery
« Reply #11 on: March 22, 2006, 02:48:51 pm »
I'd have to do some research too, but here's a short answer.

At least in Florida (and probably most states), it is a violation of law for a licensed doctor to make misleading, deceptive or fraudulent representations in or related to the practice of his/her profession. If the licensing board/DOH/etc. finds a doctor guilty of a violation, a broad range of penalties is available, from a simple "BAD DOG" letter to restrictions on or revocation of the doctor's ability to practice. The penalty depends on how serious the board feels the violation was and if it was a first offense or not. Here's a link to Florida Statutes if you need some leisure reading for the weekend.

http://www.leg.state.fl.us/Statutes/index.cfm?App_mode=Display_Statute&Search_String=&URL=Ch0456/Sec072.HTM

That's "the law," and I have a good friend that used to be part of the legal arm of the DOH and would go after doctors who had received complaints, so it is obeyed. Now here's my two cents:

I suspect that, like other areas of the law, there are less formal ways of dealing with violations. If a doctor publishes a study containing minor misinformation, it is entirely possible that peers would call him "Dr. Dumb*ss" for a while, but let it slide. Now if the study contained glaring errors that make other doctors question his competency, he might end up standing tall before the Man.

When I was diagnosed, my PCP told me that he didn't know much about ANs, but that he thought that I would have to have surgery and would lose my hearing. He referred me to a neurosurgeon and suggested that I consult the internet in the meantime (and thank God I did). That's misinformation, but I realize that he was out of his league and since he didn't hurt me in any way I'm not going to report him (or sue him). Now, if the neurosurgeon had strapped me to his operating table for his Special-of-the-Week without mentioning that I had three (or is it four?) microsurgical options, multiple radiosurgical options, and the option to watch and wait, you'd better believe the law would have been involved.

And of course there's the situation at hand, two doctors answering a hypothetical question on the internet. There might be something in their posts that a board would penalize, there might not be, but someone would need to have enough of an interest in what they wrote to initiate an investigation. Personally, I would say that the success rate of radiosurgery is documented and that their numbers are reasonable enough for me, but someone else, particularly someone that is actually in the market for a second radiosurgery, might think otherwise.

I'm going to shut up now. I hate medical law and I don't want this post to turn into a legal brief. I have no earthly idea why Jennifer liked working at the DOH so much...
1.8cm AN
Linac
December 13, 2005
Shands Hospital--University of Florida

ppearl214

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Re: Retreatment for failed radiosurgery
« Reply #12 on: March 22, 2006, 02:54:50 pm »
Kilroy, you are too kewl for words! Thank you for sharing that with us.

In many clinic brochures and such, I am curious of how much the info is just marketing fluff create by marketing teams and not the dr's themselves? Now, I know many dr's will give permission to use their names in these kinds of sales campaigns, but they may be "misquoted" or such. Granted, I don't have a law degree, we can do all the research we want  but how much of it is actually the sales/mktg dept saying it? 

As for specific posts by dr's on other sites, Dr. Medbery and such usually note "it has been my experience", meaning, they share the info limited to them but remind us not to hold the info as "for general purpose use".

Phyllis
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Kilroy1976

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Re: Retreatment for failed radiosurgery
« Reply #13 on: March 22, 2006, 03:32:04 pm »
Yeah. The brochure I got was called "The Linac Scalpal--One of the Most Precise Radiosurgical Instruments in the World." It kind of makes me wonder where my face pain and tinnitus came from. Certainly not from the Linac Scalpal. The Linac Scalpal is flawless and unquestionable.
1.8cm AN
Linac
December 13, 2005
Shands Hospital--University of Florida

Larry

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Re: Retreatment for failed radiosurgery
« Reply #14 on: March 22, 2006, 04:55:25 pm »
Kilroy,

Agree with your comments and thx for sharing the views. getting dr's or quacks up before the medical association is really difficult in Oz. It's really a closed shop. It's very difficult to sue. I guess thats why med costs are so high in the U.S - insurance protection for the doctors.

Whilst I am really p....d that I wasn't told about my options, I am quite fortunate of not having eye or facial issues so taking any further steps would be a waste of space.

This site has the best info and if my regrowth gets any bigger, i will certainly be talking to you more as the option that i will use is GK - via Linac. Thats the only option here but is probably my choice anyway.


laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz