Do You Find This Website Misleading?

[fbarbera]

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?!

[Jim Scott]

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

[leapyrtwins]

So, here's my question.

Why is the ANA website #4   And how do we go about changing that

Jan

[Mark]

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

[fbarbera]

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

[Mark]

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

[sgerrard]

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

[Jim Scott]

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

[sgerrard]

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