confusion re fractionalized "stereotactic brain radiosurgery"

[leapyrtwins]

That is the reason I personally applaud and appreciate everyone who's a "postie" and stays involved on this forum to give back and support either the newly diagnosed or those who are having issues. It takes a commitment to others and a gift each of you give 

Mark -

this statement applies to you also. 

Thank you for adding much valuable information and insight to the forum. 

Jan

[jb]

Even though I have a glass of wine and not a martini, I'll add a couple thoughts here:

*pours martini, shaken/not stirred, slightly dirty, straight up, extra olives.... and pulls bowl of popcorn back into lap*

I'm just  a beer drinker, maybe that's my problem 

For jd as well, on the swelling subject:

It seems to me that there are two kinds of swelling that occur. The first is swelling of surrounding normal tissue, along with the tumor, in an immediate response to the radiation. This kind of swelling can be reduced by fractionation, and also by taking a steroid during and just after treatment.

The second kind occurs later, perhaps 2-3 months, when the tumor begins to die off, and is undergoing necrosis. This swelling is a result of having had radiation damage to the tumor, and the treatment protocol doesn't really make any difference. Once you have received your full allotment of radiation, and the tumor begins to die from the damage it has sustained, it is a dying tumor, regardless of how it got that way.

The purpose of fractionation is to reduce the first kind of swelling, where healthy neighboring tissue can suffer, including the hearing nerve and cochlea. None of the treatments can do anything about the second kind. Tumor death is the goal, and the edema and swelling that often accompany it must simply be accepted, and treated with steroids when necessary. That is the reason that tumors over 3 cm are not good candidates for any kind of radiation - they can swell up too much when they start dying 3 months later.

That's the way I see it, anyway.

Steve

Thanks, Steve, that's my understanding as well.  I don't take issue with the immediate treatment or the sparing of healthy tissue surrounding the tumor with fractionation. My concern is with necrosis in the tumor itself and the swelling that may accompany it.  It's my understanding that this type of swelling is what causes serious, possibly life-threatening problems with the large tumors.

As to your second question, I can't talk for Dr Lederman, but I do think he, and other radiosurgeons, define "failure" as inability to control growth in the long term.  Patients have a different viewpoint.  We might consider a procedure to have failed if the results don't match our expectations. 

Surgeons are just as bad.  If the patient has chronic headaches or facial paralysis or a regrowth, that, in surgeon speak, is a complication, not a failure.    Even if the patient dies I think the doctor might consider the operation a success!

Donna's report on FSR failures was from the patients' viewpoint.  And her sample was necessarily skewed because patients who are happy with their results usually don't stick around on mailing lists to tell us about it as much as unhappy patients do.

Philip

Actually, there is a separate category in the survey for "non-medical failures"/dissatisfied patients, so I assume the cases you're referring to would have ended up there.  Even with a skewed sample, it is difficult to reconcile a greater number of failures in the sample than was reported for the entire population.

[Philip]

Steve and Mark,

Just a quick response. 

I think it's just too difficult for most patients to worry about the differences in the machines and protocols and dosages.  Those of us who have an intellectual curiosity about these things find pleasure talking about it.  But the newly diagnosed patient can't try to dictate the doctor's protocol.  They need a basic understanding of the options and then should ask each doctor: how many patients have you treated using this protocol, what outcome statistics can you give me, what outcome do you predict for me specifically?

Steve, I think you are right about FSR being an ambiguous acronym, describing different things for different people.  When I changed the wording on the http://anworld.com/treat/ page following our conversation I removed the term and just talked about fractionation.  On the radiation page http://anworld.com/radiation/, this terminology problem does not arise because each protocol is described ad nauseam.

Mark, was that comment from Dr Medbury specifically about Dr Lederman's protocol?  He seems to be talking about a hypothetical case.  Dr L has been treating ANs with the same protocol since the early 1990s.  Long term results are available. Time has told.  For instance Chris - who wrote the radiation section of the ANworld site - was treated by Dr L in 1998.  He reported at his latest MRI that his tumor had now shrunk to 25% of its original size (with no hearing loss).

Philip

[Mark]

Philip,


Mark, was that comment from Dr Medbury specifically about Dr Lederman's protocol?  He seems to be talking about a hypothetical case.  Dr L has been treating ANs with the same protocol since the early 1990s.  Long term results are available. Time has told.  For instance Chris - who wrote the radiation section of the ANworld site - was treated by Dr L in 1998.  He reported at his latest MRI that his tumor had now shrunk to 25% of its original size (with no hearing loss).

yes, the response from Dr. Medbery was to Dr. Lederman's protocol as described on the AN world site. Are you sure he has used the "exact" same protocol over those years? If so, then I would agree he should have at least 10 plus year follow on it and tumor control results that are definitive. I guess the next question is where are those studies and why aren't other doctors familiar with them? I've followed Medbery's posts for several years now and he's always impressed me as being on the "top of his game" in terms of being aware of and referencing current studies. Can you get or point me to a copy of Lederman's study (s) on this protocol?

As far as the machines go, I don't disagree with you that most people get overwhelmed with some of the technology issues and at a certain level most would be satisfied following the process you describe. It is all about managing outcome probabilities and many people are comfortable with a machine that has a 7 out of 10 good result ratio vs. an 8 out of 10. I take a philosophy of giving myself the best odds I can get  . I know you feel machine accuracy and isocentric capability is a non factor and we can agree to disagree on that one. Again, while I think your comment reflects the norm for most radiosurgery patients, unfortunately , outside of probably the teaching medical centers where they are research oriented, I think getting good and honest information from many doctors on their "results" falls into the trap you so correctly pointed out in a previous post- that many docs define success differently and sometimes may be better at managing a patients outcome expectations that delivering on them. But as the old adage goes "it is what it is"

Mark

[Philip]

Hello Mark,

> Are you sure he has used the "exact" same protocol over those years?  <

The only thing I'm sure of is that he says he has, and makes a strong point of it. 

> where are those studies and why aren't other doctors familiar with them? <

The latest information available is summarized in the Powerpoint presentation he gave in January,  which we published on the ANworld site: http://anworld.com/radiation/lederman-Paris-Jan-2008/LedermanParis2008.html. Flip through the slides and watch some of the video. He seems to prefer to talk directly to patients rather than publishing in peer reviewed journals.  He is a colorful character, as you will see from the video.  I'm sure he must have rubbed some of his colleagues the wrong way over the years. 

> I take a philosophy of giving myself the best odds I can get <

Yes so do I.  I was given the luxury of researching this thing for 7 seven years while the tumor kindly stopped growing.  But I can understand those who have neither the time nor the inclination to question the medical experts.

> I know you feel machine accuracy and isocentric capability is a non factor <

Did I say that?  I've given you the wrong impression.  I don't think it is unimportant.  I do think it is complex and requires more medical knowledge to evaluate than I have at my disposal.

Cheers
Philip

[sgerrard]

> where are those studies and why aren't other doctors familiar with them? <

The latest information available is summarized in the Powerpoint presentation he gave in January,  which we published on the ANworld site: http://anworld.com/radiation/lederman-Paris-Jan-2008/LedermanParis2008.html. Flip through the slides and watch some of the video. He seems to prefer to talk directly to patients rather than publishing in peer reviewed journals.  He is a colorful character, as you will see from the video.  I'm sure he must have rubbed some of his colleagues the wrong way over the years. 

You have paid a lot of attention to a doctor who does not publish in peer reviewed journals, and is not well regarded in the world of radiation oncology. That detracts from the credibility of the AN World site. It is your site, you can put up whatever you want; but if you want to know what makes others skeptical about it, look no further.

Steve

[ppearl214]

*takes 100mg Imitrex.....*   

[Mark]

Hi Philip,

> I know you feel machine accuracy and isocentric capability is a non factor <

Did I say that?  I've given you the wrong impression.  I don't think it is unimportant.  I do think it is complex and requires more medical knowledge to evaluate than I have at my disposal.

I guess I made that assumption from this section of the AN world web site, but it may have been written by one of your colleagues


The Accuracy Debate
Sometimes, treatment centres will claim that their treatment machine (Gamma Knife, Linac, Cyber-Knife) is "more accurate" than the others. We have seen "evidence" that shows each of these three common machines to be the most accurate!

It is our opinion that such a debate is meaningless. Why is this? Well, we also see evidence of excellent results from experts using each of the machines (and less good results from the less expert) and at the end of the day, it is the results which count. Once again our advice is find the centre/treatment provider whose results look best for you and not to worry too much about how that is achieved.

After all, if you are buying a painting, you don't worry that the artist may have chosen the wrong sort of brush; you judge what is on the canvas! (And I can't produce a Leonardo, even if you give me the very brushes used to paint the Mona Lisa!)


I certainly agree with you that it can be complicated for many patients to understand and easily "muddied" by various doctor and manufacturer claims, but it is also not an insignificant factor in the final decision in my view. BTW, reflecting back on a previous post about AN world not being biased, I think any time you use the phrase "in our opinion" you are injecting a bias by definition. You might want to reconsider the wording of that section 

In terms of Dr lederman's protocol success and claims without a supporting peer reviewed study, I guess I would also land in the same place as Steve's comments. I have a hard time reconciling a clinician having that much success on an "innovative" protocol and not presenting it to the healthcare community. Seems like you would want to document and demonstrate your outcomes. not doing that seems to raise concern on the validity of his results.

Mark

[ppearl214]

Hi all,

Official warning.... this thread will be locked.  I feel bad for the original poster, who has yet to respond back to this. Although the original post was in reference to Dr. Lederman, this is getting out of hand.  I know everyone is trying to keep it a respectable "discussion" and I commend you all for respect shown back and forth .... but know that there is also fine lines being walked here (ie: leaning towards flaming, etc, as noted in our site rules).

Please know this is being watched VERY carefully and will be locked if respect of opinions (on all fronts) is not demonstrated.

thank you.
Phyl

[km5]

Hello,

It's the original poster, and I have been actively following the discussion but did not feel I had anything essential to contribute.  All of your knowledge and generosity and passion are very much appreciated.  Actually, today I had a brainstorm that I am going to further investigate re our 23-yr-old son with the 4 mm neuroma.

Through an incredibly lucky coincidence, which proves once more to a native Los Angelean that our city is really quite small, a friend called and reported that his new neighbor just arrived from Europe to head the Neural Tumor Research Center at the House Institute and was a specialist in ANs.  The doctor invited us to call him directly, my husband spoke with him today, and says that the doctor was incredibly kind and generous with his time.

Apparently, in Europe, small ANs such as our son's are not treated with either radiation or surgery, but are watched and monitored with regular MRIs.  It is not expensive in Europe to use MRIs to monitor ANs over lengthy periods, and that is done frequently.  Interestingly, he says that he is going soon to an international conference where there will be a lot of discussion re possible malignancy many years following the radiation of benign tumors, a dispute which he says is very much alive.  So all of this has got me to thinking...

We are all relying on our son's subjective report that his hearing has gotten worse recently because he says he uses one ear more than the other to listen to his cell phone.  The MRI confirmed that he has a small AN with a loss of high frequency hearing in his right ear.  However, this is not the first time that our son has had a hearing loss confirmed.  When he was 10-12 years old he visited an ENT several times, and was diagnosed at that time as having some loss.  We can't remember now whether it was in one ear, but something about "high frequencies" seems familiar.  So...could it be that if we are able to find our son's audiograms from 10 plus years ago that the loss was already apparent?  Could it be that he had an AN that has been stable for all these years, and that his subjective report of loss today was instead something he just "noticed" for the first time, and now just keeps on noticing.  After all, he is becoming much more aware and mature in many respects over the last few years.  As a wild and crazy teenager, he just may not have noticed or paid attention to his uneven hearing deficit.

So today it seems like it would be a very good idea to watch and wait, which was actually a very realistic option suggested by Dr. Chang, at least for 6 months.  We will search for the original audiograms, and then will actually have something to compare.

It could be that I am reaching for an answer that is what I "want", rather than the medical realities, but I'm pretty comfortable that this is an avenue that is worth pursuing.

Thanks to all of you for everything you provide our community. 
Katherine

[sgerrard]

Hi Katherine,

Thanks for posting back. Your actual case did kind of get lost in the shuffle here. 4 mm is certainly small enough to watch and wait; I am not surprised to hear that Dr. Chang suggested it.

One sided hearing loss is a little more unusual, and seems to be a indicator that gets ENT's looking for something as a cause. It is possible to have a small AN that stays small for a long time. Besides getting another MRI or two, having regular hearing tests will help establish whether your son is losing more hearing over time.

I know for a fact that in my own case, I was losing hearing at least six months before the "plugged up ear" symptom got me in to see a doctor. After it was noted on a routine hearing test at work, I was vaguely aware my hearing was weaker, but not bothered enough by it to say anything. So it is also possible that your son has simply been ignoring the symptom for a while.

Let's hope you have a nice long watch and wait.

Steve

[Joef]

I noticed a hearing loss in my AN ear in my early 20's ..but my mother had the same loss .. (today she wears normal hearing aids) so I said it was bad genes! and really  thought nothing of it .... untill other issues started to crop up at 40 ... I wonder how big my AN was back then ..  I would bet it was there - just starting out...

[leapyrtwins]

Katherine -

thanks for getting back to us.  I'm sorry your original post was kind of lost in the scheme of things.

With an AN of 4 mm, watch and wait is a very good option.  From what I've read on this forum, some patients are lucky enough to be able to watch and wait for years -  that might just be the case with your son.  The important thing is the watching because if the AN grows to a size where it does need to be treated, the doctor(s) will realize it.

Best of luck to your son,

Jan

[FlyersFan68]

I'm sure Dr. Brackman suggested mid-fossa because the possibilities of saving his hearing at this size is very good. He could have the tumor removed for good. Dr. Chang obviously suggested radiation because the hearing preservation rates are great with a tumor this size and the tumor itself could be controlled for many years. Two good options. Since the tumor is small and your son is only 23 it does seem wise to hold off for a while to really think things through. Unfortunately, he may still continue to lose hearing by waiting but he would remain a prime candidate for both mid-fossa and radiation. Some folks make the decision when the hearing keeps getting worse and when the tumors are small. They take action hoping for one final chance to save hearing. There is closure at the same time and people must accept the end result. There are no guarantees with any approach so in a way we all take our chances. There is always the very slight possibility of NF2 for anyone with an acoustic neuroma and even though the tumors usually present themselves together at once there is always that very slight possibility one may grow at a later time. The odds are a bit higher for people in their twenties versus people in their thirties. Each decade the chances drop. Again. it is very rare especially when they are not arising together but it's just another reason (worth mentioning) for waiting and watching at a young age and with a small tumor. Also, I would suggest easing up on the cell phone usage if possible. Good ear and bad. There may be a cell phone connection with acoustics and what's the harm of easing up some as a precaution? My 10 year old son asked for a cell phone the other day and I replied NO WAY! The brain doesn't fuly develop until 12 years of age and it's not even neccesary. I gave up my cell 4 years ago and don't even miss it. A few times a year I may need to carry one so I borrow my wife's.
Remember, these tumors usually grow slowly but will grow. If it was my son I would wait a while and keep a close eye on certain symptomes like ear pain, fullness, vertigo and hearing. Please keep up with the audiograms. April 28th was my 4 year anniversary since surgery. I only respond once in a while since my time and needs have passed. Things will be fine now and later. 

[FlyersFan68]

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