Protocol for FSR?

[richcooks]

I have been told by three separated Doctors that I have to have my AN treated due to its continued growth over the last six years.   

I have decided to have Fractionated Sterotactic Radiation treatment for my AN.   In all my research I cannot locate a STANDARD Protocol for FSR treatment of ANs.  I would think that the smart Radiation Oncologists who have treated ANs with this procedure would get together and identify the optimal dose, number of treatments, and treatment intervals necessary to have the best possible outcome.  My Doctor wants to “zap” me five consecutive days, (not sure what dose).  I understand the expert; Dr.  Gil Ledderman zaps you every other day!   Does anyone know of a Standard Protocol or publication that provides some standards for FSR treatment of ANs?   

[leapyrtwins]

Rich -

I didn't have FSR, chose surgery to remove my AN, but in most things AN-related docs have their own protocols.  When it comes to FSR, I'd imagine that a lot has to do with the size and the location of your tumor.

Also, you mention Dr. Gil Lederman.  Just a word of caution - he's somewhat of a controversial doctor when it comes to treating ANs and there are few posts about him on the Forum.  I was able to locate this one http://anausa.org/forum/index.php?topic=6397.0

Jan

[ppearl214]

Hi Rich and welcome. Good to have you here.

You will find much info re: all kinds of radio-treatments and lots to learn. If you find yourself overwhelmed with the info, please take a step back for a day or 2 before your research continues. Lots to learn.

There are many variables that a radio team has to look at to determine what will be the best course of radio-treatment.  The size of the AN, the exact location of the AN (ie: is it pressing against the brainstem, does it stick out of the canal, etc). Other factors are balance and/or hearing issues, etc.

On these forums, we have heard of 1 day, 3-5 days.... to 25-30 days. It all depends on the course being done and how applied. For me, I had 5 days (30Gy of radiation total) over 5 days and I do know of many more that had the same..... so, 5 days is not unusual.  Many here that had "FSR" (as you note, possibly via the Novalis radiation delivery) typically have from 35-30 days (I bet my co-hort in  moderator  crime, Jim Scott, wiil chime in as he had FSR delivered over approx 25 days).

There are many expert radiation teams across the US. I'm not sure where you are located but by mentioning Dr. Lederman, would it be fair to say you are on the east coast?  If yes, there are many terrific radio treatment teams up and down the east coast.  Being located in Boston, I"m kind of partial to the teams here locally but there are certainly many others on the east coast worth researching as well.

Anyway, based on what you shared, this is just a quick insight.  Hope it helps.

again, welcome!
Phyl

[Jim Scott]

richcooks ~

To the best of my knowledge (I'm not a doctor) there is no 'standard' protocol for FSR.  As Phyl and Jan indicated, size and location of the AN is what determines the amount of radiation delivered and for how many days.  My debulked (surgically reduced) AN was given approximately 27gy of radiation over 26 successive days (weekends off).  I suffered no ill effects from the radiation treatment and it succeeded in destroying the tumor's DNA, stopping it's growth. My neurosurgeon teamed with a radiation oncologist to 'program' the treatments for the lowest amount of radiation (to preclude adverse reactions ) that would still be effective.  It worked.  As you can see, FSR is a very personalized treatment, as are all radiation practices used on ANs.  One size does not 'fit all'.

Jim

[richcooks]

I would like to thank everyone for their input.  I do plan on FSR for my course of treatment.  I had a feeling that each case is treated uniquely with a individual protocol established.  Just need to get it confirmed.  I too read the "stuff" on Dr. Ledderman but he seems to be the only one you can easily located via google and he has been doing FSR for AN for 20 years.  I was only interested in his treatment options.  He did call me and hope to return his call tomorrow to hear what he has to say.  I think I will get a sales pitch but hope I don't.  I hope to find someone here in New Jersey.   

Is there a directory of facilities and Doctor's that perform FSR?   My local hospital does it, but I would at least like a choice.   

Although I would love to go to Boston. I spent 5 years going to college there and miss that city.   I am stuck in a house of NY Yankee fans! At time the tinnitus is welcome!

[pjb]

Just reading your article about Dr. Lederman he use to be the Director of Oncology at the Staten Island University Hospital where I live and they let him go I believe mainly because of the George Harrison case but I have heard several other problems concerning him and would highly think about another physician.. It is pretty bad when most of my other doctors and nurses here recommend me to go to doctors in NYC ....  I just saw that Dr. Lederman is practicing in NYC now just be careful it is a major decision you have and that is with Dr. Lederman being an expert  !

Best Wishes,

Pat

[leapyrtwins]

Rich -

if you go to the main page of the ANA's website there is a link that will show you medical facilities in your state that treat ANs.  Please note that this is NOT an all-inclusive list.

The medical facilities (and the doctors listed) are not endorsed/recommended by the ANA - because this is not something they do. 

But the facilities and doctors listed have passed certain standards/criteria in treating ANs to make them what the ANA terms a Center of Excellence.  In addition, they have paid a fee to the ANA to be "certified" and listed on the website.

As I mentioned above, this is NOT an all-inclusive list, but it's a damn good start.

If you aren't opposed to traveling to NYC, Drs. Roland & Golfinos have excellent reputations - as do several other doctors who practice there.  I don't know if they do FSR, but if nothing else, consulting with them might be helpful.

Jan