FSR at Thomas Jefferson University in Philadelphia

[philadelphia1]

I was diagnosed with a ~1 cm AN in June 2005 have been researching treatment options since then. I split my time between Philadelphia and Harrisburg, PA and have options. I am currently leaning toward FSR with Dr. David Andrews at Thomas Jefferson University in Philadelphia.  Couple of questions:

Does anyone have experience with Dr. Andrews and his FSR protocol (25 to 30 fractions)?  The research I've seen is encouraging, but follow up periods are relatively short.  It would be helpful to make contact with someone with first hand experience.

I have also considered GK at University of Pittsburgh Medical Center, but I am concerned that if I have a bad outcome it will much more complicated to have good follow up.  Any thoughts or experiences with managing long distance follow up?

ML
Philadelphia/Harrisburg

[JHager]

Hello, ML!

My brother is a 2nd year resident at 'Jeff', and I'm seeing him this weekend.  I'll ask about your situation, if you'd like!

Josh Hager

[philadelphia1]

Thanks.

My big question is trying to understand the thinking behind so many treatments.  Dr Andrews typically uses 25-30 treatments (at a lower individual dose) while other places may use only 3 treatments.

What are the pros/cons of the higher number of fractions?

[JHager]

Hey Philadelphia1,

From everything I've read (and I've done more research on this than my brother, who is a general surgeon at Jeff), the advantage of FSR is lower dosage over time.  When Gamma Knife came about, people were treated with what turns out to be probably too much radiation.  I teach Physics, Chemistry and Astronomy.  While I'm not the smartest guy out there, I do know that Gamma is remarkably powerful stuff.  Getting a major 'blast' has, according to studies, caused a greater number of side effects.

Breaking up the treatment into smaller doses should, the idea is, reduce those side effects.  Radiation is a progressive thing: the more frequently you are exposed, the greater the impact.  But, with FSR, the exposure to surrounding tissues should be greatly reduced.

Please note that even the most enthusiastic researchers and doctors, if they are being honest, will tell you that radiation treatment of AN's is still a relatively new science, and long-term data simply doesn't exist in the abundance surgical data does.  Results so far are very promising, but time will be the true judge.

If you Google "AN Treatments" or "Vestibular Schwannoma Treatments", you'll get a pretty hefty list of results.  The University of Pittsburgh has a pretty thorough database.  They are a Gamma Knife center, so they lean that way a bit, but their studies are solid.
Just beware of sites that lead you to an individual doctor claiming near-perfect results; every AN treatment has inherent risks, and side effects are possible in the best of situations.

Good luck, and if you need some other info on Jefferson, please let me know.  My brother is on his honeymoon at the moment, but he's promised to check out the FSR area, the rooms, and look into family and recovery housing options if that will be necessary.

We're stronger than we know!

Josh

[philadelphia1]

Thanks - that was a really clear explanation and I agree with you on the need to be skeptical of those who might oversell. 

I still don't understand why some protocols (like Jefferson's) call for 25 to 30 treatments (fractions) and others only 3.  It would seem to me that the higher number of treatments create added risk -- say that something will be misaligned in one of them.

Let your brother in law enjoy married life.  I'm seeing the radio oncologist soon and will quiz him.

[jamie]

Please note that even the most enthusiastic researchers and doctors, if they are being honest, will tell you that radiation treatment of AN's is still a relatively new science, and long-term data simply doesn't exist in the abundance surgical data does.  Results so far are very promising, but time will be the true judge.

I must very respectfully disagree with radiosurgery being a "new science", the gamma knife system was invented in 1968, only 7 years after microsurgery. Before surgery with a microscope was attempted, nearly 50% of patients died, and total resection was very difficult, usually resulting in tumor recurrence. I guess you're right that longer term data exists for surgery, but it wasn't very promising, and outcomes like we see today were few and far between.

This issue was addressed on the AN archive:

    *  The unproven myth: The radiation approach is unproven

    Gamma Knife (GK) has been done since 1969.  At the BANA Annual General Meeting on June 10, 2000, famous neurosurgeon Dr. Lindquist said that more than 10,000 AN's have been treated by GK. Just as for surgery, the procedure has evolved over the past 30 years, as new technology and doctors' experience allows them to introduce improvements.
http://www.anarchive.org/myths.htm

In my personal opinion, I believe neither treatment method should be considered new science. Of course surgery dates back before civilization, but radiation use in medicine dates back a long time. Alexander Graham Bell first came up with the idea of using radiation to treat tumors, and radiation was used to treat thyroid disease in 1905. The two treatment options today have nearly the same amount of proven time behind them. Also, the main indicator as to whether a medical procedure is proven or not, is if insurance pays for it. If it's not considered effective, it's not paid for. I know this because I work in clinical coverage review for a major medical insurance company. Stereotactic radiosurgery is considered proven for brain tumors, and payable without a medical director's review. 

[Mark]

Hi Philly, (which is where I grew up by the way)

The issue of why there are multiple FSR protocols has always interested me as well. I posed your question over on the CPSG board and got the following response from Dr. Rosenberg. I'm not sure how helpful it is other than identifying the different variables that can influence the decision. I was previously told by Dr. Chang at Stanford that there was not any significant theraputic value going beyond 3-5 treatments and the associated risks ( and inconvenience) of going 28-30 times for treatment.

Here is the post, if any of the other doctors who monitor that board offer anything else, I'll copy it over


Mark


Moi

On the Acoustic Neuroma Association message board the question of FSR protocol variations has been posed on occasion. When I was treated by the Cyberknife at Stanford almost 4 years ago, the protocol was 3 treatment sessions of approximately 1 hour. I believe this is still in effect today. However, other places such as Johns Hopkins utilize 5 while medical centers such as Thomas Jefferson use 28-30. This is perplexing to many newly diagnosed patients and I was hoping one of the doctors could elaborate on the reasons behind the differences and any pros or cons involved. Is it driven by the type of machine and accuracy involved? is there any proven value with more , shorter sessions vs. 3 higher dose sessions. Is there any difference in total dosage and is that an issue.

Thanks for any clarity you can offer.

Mark



Dr. Rosenberg

This is a very complex and sophisticated question. The short answer is that the variation are from lack of knowledge. Fractionation has theoretical benefits with regard to preserving normal tissue. This does not necessarily mean that more is better, however. We need studies looking at fractionation and outcome since the Gamma Knife, being unable to deliver more than one fraction, has not generate these data. So, as far as 3 vs 5 fractions, no one really has an answer. (I've never heard of a CyberKnife giving 28-30 fractions. Could this be another form of radiation?)

As far as length of time for each session, this has more to do with the complexity of the plan, how many beams are used, the dose given and the size of the collimator (opening in the machine; it takes longer to put a certain amount of water through a thin hose than a thick one).


--------------------------------------------------------------------------------
William S. Rosenberg, MD
Medical Director, Menorah Medical Center CyberKnife
Midwest Neurosurgery Associates
6420 Prospect Street, Suite T411
Kansas City, MO 64132
(816) 363-2500
wsr@post.harvard.edu

[jamie]

Here's another good source of info on FSR:

http://www.anarchive.org/fsr_qa.htm

 

[jiguana]

Hi,

I had Gamma Knife at Jeff with Dr Andrews.  I can tell you he is an excellent, top rate doctor.  I am 6 years post GK now with no side effects.  I go every two years for an MRI and I have no growth.  It is just a dead mass now.  If there is no change in 4 years I will be considered cured. 

Dr Andrews is very thorough.  He explains everything in detail and makes you feel very comfortable about the procedure.  I am glad I made the choice to go with him.  I originally went to him to get an opinion on FSR, but since I had already lost my hearing he recommended GK.  I asked about his success rate and he provided me with a lot of data of his patients (not names or any other confidential info) and success rate.  He had a 99% success rate in 1999. 

Although i didn't answer your question about the # of FSR treatments, I hope I helped with my confidence and recommendation of Dr Andrews. 

Best of luck in your treatment.

joe

[philadelphia1]

Joe - thanks for that very supportive post.  I have had a similarly good reaction to Dr. Andrews and, frankly, just about everybody at Jefferson.  I think they take the concept of patient centered care very seriously and it shows in quality of care delivered.

You and I are opposite in some ways.  I went to Dr. Andrews to get a referral on GK but since I have good hearing (90%) in my AN ear, he recommended FSR instead.  His success rate is not quite as high as you quoted, but still 90+% tumor control with very few side effects.

Since I made this original post, I saw Dr. Walter Curran (also at Jeff) and asked him why so many fractions.  His answer made sense but was frightening at the same time.  He said they used to do 9 fractions but they were getting some bad side effects so they upped it to 25 to 30.  There is no real science behind the number. I'm all for learning by doing, but I do wish there was a bit more science than that. 

Anyhow -  here's to 4 more years of no growth MRIs for you.  You sound cured to me already.  I go for my MRI/CAT/Fitting on Nov 28.

ML
Philadelphia/Harrisburg