ANA Discussion Forum
AN Community => AN Community => Topic started by: fbarbera on December 13, 2008, 11:17:16 am
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Hi All,
Right now, if you google the phrase "Acoustic Neuroma Treatment," the first result is the following page on the University of Minnesota's website:
http://www.med.umn.edu/otol/library/aneuroma/treatmen.htm
When I first read this page several months ago, I found it presented a egregiously distorted picture of the treatment alternatives, saying things like only surgery could "cure" an acoustic neuroma and that radiation treatments failed "20% of the time." I actually emailed the chairman of the department - Dr. Sam Levine (whose email address is posted on the UMN website) - to express my concerns that his website was not presenting a fair or accurate picture of alternatives available to patients. He emailed me back with some polite and scientific justifications for the troubling presentation on his website. I was hoping that our little exchange might cause him to revisit some of the more egregious claims on the site, but I was mistaken.
As all of us know, deciding how to treat our AN treatment can be such a hugely challenging and stressful process, made more so by all the conflicting claims we hear from doctors. All of us deserve unbiased facts when we are researching our alternatives, and the truth is that too often, we are not getting them. Please read the website above and if you find it troublesome, as I did, please consider sending a brief and polite email to Dr. Levine asking him to revisit the presentation on his website. A link for purposes of emailing him can be found here:
http://www.med.umn.edu/otol/library/aneuroma/index.htm
(If you hover your mouse over the "email Dr. Levin" link, his email address will appear on the status bar beneath your browser window.)
For those of you with limited time, here is an idea for a brief and polite email:
Dear Dr. Levine,
I am a [newly diagnosed] [recovering] Acoustic Neuroma patient. Recently, I reviewed the description of Acoustic Neuroma treatment alternatives presented on the website of your department at the University of Minnesota. I found this presentation did not fairly present the relative risks and benefits of surgery and radiation.
For example, your website contains the following sentence: "At the present time, the only treatment that can cure the patient is removal of the tumor by surgery." This is misleading. A successful radiation treatment also will "cure" an Acoustic Neuroma in the sense that it will permanently arrest tumor growth, requiring no further treatment. Obviously, radiation and surgery each have risks and side effects but to describe one alternative as being the sole "cure" of an Acoustic Neuroma has the potential to be very misleading to a layperson. There are other examples like this, such as the claim that radiation fails "20%" of the time.
I hope you will consider revisiting the language on your website with some sensitivity to how a layperson might respond. Being diagnosed with an Acoustic Neuroma is difficult and each patient deserves the benefit of a fair presentation of risks and benefits of the available treatments.
Thank you for considering these comments.
Sincerely,
[______]
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Hi Francesco,
Unfortunately there are still quite a few "old school" physicans out there, who are not up to date on the state of the art of radiosurgery. Most of the radiation treatment content on that web site appears to be straight from the 1991 NIH Consensus Report on acoustic neuroma treatment. While it was a good document at the time, it included the remark that it should be revisited within 10 years, since radiation treatment was clearly changing. There has not been a more recent consensus put together, though.
As usual that link contains a remark on the small possibility of getting cancer from radiation treatment, without mentioning that the chance of dying during surgery is actually higher. It entirely fails to notice that to date, less than 2% of the 700+ ANs treated with CK at Stanford have shown any regrowth - a control rate as good or better than surgery. It is clearly not the view of an experienced, knowledgeable radiation oncologist, but that of a surgeon.
I think it is better to advise people to seek information and opinions about radiation treatment from good radiation oncologists, or neurosurgeons lwho use modern radiosurgery methods on a regular basis. The chances of getting a good overview from a web site like that one seem very slim to me.
Steve
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Steve,
Thanks for the extremely informative post. While I wholeheartedly agree that advising people to speak with a good radiation oncologist is the ideal approach, the problem I am trying to address is a little different. There are patients out there who never make it to this message board or who do not have the opportunity or wherewithal to get a second opinion. There are patients in rural areas or in other countries who are reading the UMS website and drawing firm conclusions.
My feeling is that it is important to try to correct this type of misinformation where it exists - particularly on highly-trafficked websites that reach a wide audience. While I would not necessarily expect UMS to provide the best possible overview of radiation alternatives, I do not think it is too much to ask that they simply provide accurate and up-to-date information for the benefit of their patients. In fact, I think that is their duty.
I hope you, and others on this message board, will consider sending Dr. Levine a brief email. I think it can make a difference -- especially if they hear from people who are as thoroughly informed and knowledgeable as you.
Sincerely,
Francesco
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fbarbera:
I agree with Steve. When I was first diagnosed, I visited many AN websites. Some had good information and some, out-of-date and/or biased info. I decided to trust what the ANA said and then compared that with what my neurosurgeon said. That made things easier. Fortunately, my neurosurgeon turned out to be a life member of the ANA.
The majority of doctors that deal with acoustic neuromas will usually have current information. My neurosurgeon, a few years older than me, was very cognizant of the latest procedures and utilized a much younger radiation oncologist to assist him in treating my AN; he operated, the oncologist radiated. They worked on the FSR 'map' as a team, using MRI and CT scans. The result was optimal.
I may send Dr. Levin a dissenting e-mail if I find the time but frankly, most doctors are not known for their abject humility. Doctor Levin wiil likely continue to believe he is disseminating accurate information - and I'm just some non-physician who doesn't know what I'm talking about. One can only hope that his website is so glaringly at odds with the facts about AN radiation and surgery that most visitors will recognize the discrepancy and discount Dr. Levin's opinions as the outdated mis-information they are.
Jim
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Thank you, Jim. Please do consider sending that email - you're an excellent writer and I think an email from you could really make a difference.
Best regards,
Francesco
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Francesco -
I will most definitely email Dr. Levin. There is no guarantee we will change anything, but as you say, perhaps we can make a difference.
Thanks for bringing this website to our attention.
Jan
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I would agree that the site seems to be much more supportive of highly invasive neurosurgery vs. less invasise radiosurgery (not sure I got that term correct). Likely just poorly written, and written from the perspective of a surgeon.
I am only a few weeks into this AN stuff - and would say this article is exactly what I heard from my youngish ENT (at a very hip hospital in Canada). He pretty much said at my age (and his age - so 37 years) he wouldn't go near GK or CK because of the unknown long-term impact, and in particular with an AN my size (5mm x 8mm). Now, he did say that if I was late 40s, early 50s or beyond with a smallish tumor that was growing, he would recommend it. It seems the doubt is the outcome in the next 20-45 years which they don't seem to have any research. (Not sure if anyone knows, but what are the mortality rates of young, apparently healthy people under anathestic - I would imagine it is significantly lower than any older population. Ask a response to some points that the likelihood of malignancy is lower than death from anesthetic. Obviously, not trying to be confrontational - but I think everything has to be apples to apples.)
A bit off topic - but I did post a question on the inquiry board, why small ANers choose what they do. I would imagine the decision of an 'older' (will let the author decide what that might be) ANer could be substantially different than a 'young' ANer.
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Going to add some stuff ...
The HEI clinic has a website too
http://www.acousticneuroma.org/house_clinic_perspective_acoustic_neuroma.htm
which while better written (long mile), basically says the same thing - radiation, malignancy risk, is unknown, is at least 3% (and much higher in other benign treatments) and is on the whole unknown over a 30 year range. [Read the bottom article.]
OK, again probably better in the radiation section, but as I am slowly learning (and trust me not writing off this option at all, but hoping to just wait it out FOREVER!), it is all about choice. Radiation at 37 years of age, with darn good health and a respected institution probably has much lower risks long-term than radiation. However, if you say you are 50+ and/or not a good surgery candidate for other health reasons - that 30 year range is probably not a consideration as the malignant transformation would occur past your expected life range. (Gosh medicine is so cut n'dry) Probably typing with only half the story - but it seems two good institutions are supporting the same theory. OR, as I will eventually ask, is the system so biased because of 'for-profit' medicine in the US that the surgeons focus on the benefits of surgery and the cons of radiation, and, of course, vice versa. (Remember, I am Cdn so I am a product of public health care - it is all free to me!)
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the surgeons focus on the benefits of surgery and the cons of radiation, and, of course, vice versa.
getting warmer... ;)
It is not so much profit (I hope) as area of expertise, and of non-expertise, that produces the bias. That 3% figure did not come from an oncologist.
You might have a look at a topic on the old CK forum, started by Francesco (fbarbera) when he was first diagnosed at age 34. I particularly like this quote from Dr. Medbery:
"If the surgeon starts telling you about the tumor becoming cancer from radiosurgery, politely excuse yourself and leave."
http://www.cyberknifesupport.org/forum/default.aspx?f=14&p=1&m=13837
Steve
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Unfortunately Steve here in Canada the medical community isn't sold on CK. I personally know two highly skilled nurses, one is an OR nurse the other one works in Acquired Brain Inquiry program and they both sat down and talked to me about the risks of a malignancy if I opted for radiation treatment.
My 18 year old son lost a dear friend to cancer this past March. She fought cancer at 15 months and received radiation for it. Her mother told me back in Sept her daughter's second battle of cancer was a direct result of the radiation. I also had a supervisor back in 1988 who had non hodgkins lymphoma in her 20th year. She too had radiation treatment. She did not make it to her 40th birthday. It turns out her brother is the father of another friend of Anthony's.
These two incidents could be coincidence, I don't know. I know many people on this forum have had different radiation treatments. I pray to God everyone who has had treatment will never be in that 3%. AN and cancer survivors included.
Please note that this is all food for thought. I am not criticizing.
Anne Marie
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Hi Ann Marie,
I can certainly share your wariness of radiation treatment given those experiences, and I am sorry to hear of those loses.
For acoustic neuromas, the important - maybe crucial - thing to understand is that stereotactic radiation, or radiosurgery, is very different from what is generally called radiation therapy. Something like hodgkins lymphoma cannot be treated with focused radiosurgery; instead, it requires a broad blanket of radiation covering a large area. That kind of radiation therapy does have a recognized risk of later cancer, usually 10-20 years later, and affecting 3-5% of treated patients. It is rarely used for benign tumors.
The risk from radiosurgery is vastly different, and vastly lower. It is a highly focused form of radiation treatment, with very little exposure for surrounding tissue. It can only be used on selected types of tumors, with well defined shapes and boundaries, such as acoustic neuromas. The known risks of radiation therapy simply do not apply to radiosurgery, and the risk of malignancy is much lower than 3%. It is that fact that so many who are involved with radiation treatment of acoustic neuromas struggle to communicate effectively to patients investigating their treatment options (hence my reply).
Steve
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For what it's worth concerning the radiation-cancer risk: prior to my FSR treatments (26) I did my internet research and learned that the risk of my AN turning malignant or any other cells doing so as a direct result of stereotactic radiation was insignificant. My neurosurgeon, a well-respected doctor with 30 years of AN removal experience and my radiation oncologist, a brilliant younger man, both assured me that the FSR was safe and would be effective. I had no problems from the radiation. It was very effective in shrinking and killing my tumor's DNA, which will eventually destroy the AN. Granted, I was in my early 60's at the time of the FSR treatments and so, the possibility of developing a malignancy in 30 years was not a factor. However, had I been 30 years younger, I still would have went with the radiation. Maybe that's just me. :)
Jim
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I'd like to refocus this thread on the issue of UMN's website. If you haven't already, please reread the initial post and consider writing the email to Dr. Sam Levine.
Thanks to all,
Francesco
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I totally agree with you Francesco. There is so much limited information for those newbies who never see a website or Forum. Thank God I was able to come to this forum. I did have an ENT that talked about Radiosurgery, but I know that Patti in Utah knew nothing about Cyberknife at the time she had surgery. It can be confusing that is for sure.
Sher
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Thanks for sharing that, Sher.
Jan -- Let us know how it goes with Dr. Levine. Thanks! Any other takers out there?!
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You know, I think this website is more important than I first thought. I happened to check what came up with the exact words [acoustic neuroma] entered in Google, and the UMN site was number 2, right after the Wikipedia entry. The ANA website came in number 4. :-[
I think I will put together an email to Dr. Levine as well.
Steve
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Steve, I hear you -- I'm not sure why this particular website gets such prominence in the Google returns. Let us know how if goes with your correspondence with Dr. Levine. How about it Jim?!
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Francesco:
I e-mailed the good doctor today. To save time I used your template with just a bit of editing. I don't know if this will have any effect, but I made the effort. Here is what I wrote:
Dear Dr. Levine:
I'm a recovering acoustic neuroma patient who successfully underwent both surgery and radiation to address my AN. Recently, I reviewed the description of Acoustic Neuroma treatment alternatives presented on the website of your department at the University of Minnesota. I found this presentation did not cogently present the risks and benefits of surgery and radiation. Semantics seem to be the problem.
For example; your website contains the following sentence: "At the present time, the only treatment that can cure the patient is removal of the tumor by surgery." I find that statment somewhat misleading. A successful radiation treatment will "cure" an Acoustic Neuroma in the sense that it will permanently arrest tumor growth, requiring no further treatment. Obviously, radiation and surgery each have risks and side effects but to describe one alternative as being the sole "cure" of an Acoustic Neuroma has the potential to be very misleading to a layperson. There are other examples like this, such as the claim that radiation fails "20%" of the time. That is not the current statistic. I would assume that you want your website information to be both current and accurate.
In reaching that goal, I hope you will consider revisiting the language on your website with more accurate information and by doing so, avoid sweeping generalities that can confuse the layman. I know from experience that being diagnosed with an Acoustic Neuroma is difficult. I think you'll agree that each patient deserves the benefit of a fair presentation of risks and benefits of the available treatments.
Thank you for considering these comments.
Jim
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So, here's my question.
Why is the ANA website #4 ??? And how do we go about changing that ???
Jan
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Francesco:
I e-mailed the good doctor today. To save time I used your template with just a bit of editing. I don't know if this will have any effect, but I made the effort. Here is what I wrote:
Dear Dr. Levine:
I'm a recovering acoustic neuroma patient who successfully underwent both surgery and radiation to address my AN. Recently, I reviewed the description of Acoustic Neuroma treatment alternatives presented on the website of your department at the University of Minnesota. I found this presentation did not cogently present the risks and benefits of surgery and radiation. Semantics seem to be the problem.
For example; your website contains the following sentence: "At the present time, the only treatment that can cure the patient is removal of the tumor by surgery." I find that statment somewhat misleading. A successful radiation treatment will "cure" an Acoustic Neuroma in the sense that it will permanently arrest tumor growth, requiring no further treatment. Obviously, radiation and surgery each have risks and side effects but to describe one alternative as being the sole "cure" of an Acoustic Neuroma has the potential to be very misleading to a layperson. There are other examples like this, such as the claim that radiation fails "20%" of the time. That is not the current statistic. I would assume that you want your website information to be both current and accurate.
In reaching that goal, I hope you will consider revisiting the language on your website with more accurate information and by doing so, avoid sweeping generalities that can confuse the layman. I know from experience that being diagnosed with an Acoustic Neuroma is difficult. I think you'll agree that each patient deserves the benefit of a fair presentation of risks and benefits of the available treatments.
Thank you for considering these comments.
Jim
Jim,
Well scripted and articulated response to the good Doctor, nicely done. I had come across this web site in the past and dismissed it as clearly the misrepresentations of a biased or poorly informed surgeon. In terms of profiling radiation, even more so than my opinion of HEI. In reading sites like this, one can only assume that the doctor is trying to scare people to his /her treatment option and that is a shame
Mark
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Hi Mark, Glad you joined this discussion - my initial reaction was to dismiss the site as well (actually, first it was anger and than it was dismissal) -- but then I saw how prominent the UMN site is. If you google the term "Acoustic Neuroma," this terrible website comes up FIRST.
Will you consider emailing Dr. Levine with a note along the lines of what Jim wrote, so we can hopefully get these doctors to describe the alternatives in a more balanced fashion?
Thanks much, Francesco
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Hi Mark, Glad you joined this discussion - my initial reaction was to dismiss the site as well (actually, first it was anger and than it was dismissal) -- but then I saw how prominent the UMN site is. If you google the term "Acoustic Neuroma," this terrible website comes up FIRST.
Will you consider emailing Dr. Levine with a note along the lines of what Jim wrote, so we can hopefully get these doctors to describe the alternatives in a more balanced fashion?
Thanks much, Francesco
Hi Francesco,
I'll be interested to see what, if any, response that Jim gets from the doctor, but I'll be surprised if there is one. Personally, I don't see much point to expending energy in writing a letter to add my perspective to Jim's for a couple of reasons
1) I tend to believe that his misrepresentations are deliberate and that the protests of some AN patients are of no consequence to the number of people he misleads into his surgical suite
2) If he truly is that ignorant of radiosurgery stats and the definition of a "cure", then I'm pretty sure he's not going to listen to anyone but another doctor in terms of changing his view point. While I've met many wonderful doctors over the years, surgeons as a group certainly have their share ( probably more so) of arrogant personalities. I would wager this one falls into that camp
Either way, I don't think this doc changes anything without pressure / education from a peer group
As an aside, this situation is not dissimilar to the misleading comparsions of GK vs. CK that are on the Wake Forest site and occasionally someone new posts here. It's pretty well known that the head radiation oncologist there is the son of an executive with Elektra, the GK manufacturer, so the bias is clear. I once asked the Accuray folks why they didn't do something about it, such as send a letter or file a lawsuit. While they acknowledged the grounds for the latter, they basically felt there was minimal gain to "getting in the mud" and that most doctors would recognize the differences between machines. Given that CK installs have outpaced GK by something like 7-8 to 1 over the last few years, they obviously were right.
Mark
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I did a little more looking and reading, and have some more comments.
1. I Googled again, and this time ANA came up first, then UMN, then Wikipedia. I think Google scrambles the top entries around each time. I also got a host of sponsored links, including 3 at the top, and 8 in the side bar. They included gammaknife at U. Penn. and CK at Stanford. Oddly enough, House was nowhere to be seen, which I find a little disturbing. They should be on the first page, at least.
2. I basically agree with Mark, there is little hope of teaching an old dog new tricks, especially if you are not a fellow old dog.
3. The "20% continue to grow" comment on the website is not factually wrong, only misleading. Some percent of radiated tumors do grow or swell, and stabilize at a size larger than the treated size. "Continue to grow" of course really means "get a little bigger before stopping," not "continue to grow and require surgery," as the website would like you to believe. 20% do grow somewhat larger; only 2-5% grow enough to require further treatment.
4. Neither radiation nor surgery provide a cure, in my book. A cure would mean that not only did the tumor disappear, but hearing and balance would be perfectly restored, all traces of facial nerve twinges would vanish, and there would be no tinnitus. In other words, time would be rolled back to before the occurrence of the AN. This does not happen with any available treatment, so to me there is no cure for AN. Use of the term cure is just marketing hype, which is tolerable when applied to cold remedies, but is most unbecoming when applied to something as serious as head tumors.
The latest survey results in the ANA newsletter indicate that radiation treatment increased from 5% in 1998 to 20% in 2008. The word is getting out, despite the sticks in the mud out there.
Steve
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Steve:
I doubt we can dictate where the ANA site comes up on a Googleâ„¢ search although a bribe might help (just kidding,!).
Whether or not this doctor responds to my e-mail, much less changes his opinion, is mostly irrelevant to me. I was asked (by Francesco) to contact him and I did so. It's like writing a letter to the editor of a national magazine: you know it probably won't be published - or even acknowledged - but you want your opinion known. Of course, I always want my opinion known. :)
I think the notorious '20%' figure is arguable and definitely a matter of semantics. The doctor is using the highest technically accurate percentage to make a subtle case against radiation treatment for acoustic neuromas. I agree that this is basically 'hype', as I tried to politely express in my e-mail to Dr. Levine. I figured flat-out calling him a liar might discourage his giving any attention to my communication. :)
The word cure is also problematic, as your comments demonstrated. The dictionary definition and most people's assumption when seeing that word is: a total absence of the problem. However 'cure' better describes the treatment of a disease (cancer) or even something as minor as a 'cold'. However, alcoholism is often termed 'cured' ("he took the cure"). I hate this kind of semantic game some people play (are you reading this Dr. Levine?). We all understand that an acoustic neuroma isn't necessarily 'cured', although surgery does remove it, so you could claim the 'condition' is 'cured'. Of course, irradiation destroys the tumor's DNA and effectively 'kills' the AN, so that, too, can be termed a 'cure', as the symptoms will lessen and/or disappear, 'curing' the patient. Arrrrrgh! Did I mention that I hate semantic games? This is why. It's something lawyers and politicians are good at but in real life, they simply confuse what should be relatively simple issues.
Finally, I concur with your conclusion that the (positive) facts about radiation treatment for acoustic neuromas is becoming better known and the old biases are falling away. If we can give them a push off the stage, I"m all for it. People's health and quality of life are involved and allowing misinformation, even information subtly presented by a physician on a website, should be challenged. We have, and I'm good with that.
Jim
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Whether or not this doctor responds to my e-mail, much less changes his opinion, is mostly irrelevant to me. I was asked (by Francesco) to contact him and I did so. It's like writing a letter to the editor of a national magazine: you know it probably won't be published - or even acknowledged - but you want your opinion known. Of course, I always want my opinion known. :)
Point taken, Jim. I have dispatched my own email to Dr. Levine. There is always a chance it may make a difference.
Steve