Author Topic: University of Southern California - not keen on radiation  (Read 5972 times)

Kat From Indiana

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Well, dang it! As I continue my quest to determine which approach is better for me: Gamma Knife or CyberKnife, I came across the following quotes from the University of Southern California. What I found was depressing because it makes me question myself, just when I was starting to feel like I was on the right track. This is contrary to what I have been reading.
 
USC quotes:  "There are three treatment options available.......  Radiation is the third option. This is a nonsurgical approach often done in an outpatient setting. Radiation can be given as a single dose or in multiple or fractionated doses. This approach can be used for tumors under 2.5 centimeters with minimal contact with the brainstem and in patients that are not healthy enough for surgery. In general, we do not recommend radiation for people under the age of 65 as the long-term efficacy and potential risks are still not clearly defined. "  AND
" Radiation therapy (more than one session) or radiosurgery (single session) are useful treatment methods in appropriate circumstances. What those circumstances are is debatable and confusing at best. In general, radiation induces strand breaks in DNA, the genetic material of the cell. This theoretically leads to cell death and/or growth arrest in some fraction of the tumor. Although there are many studies described in our professional literature, each suffers from a lack of complete and long-term follow up.... We await solid evidence of efficacy and tolerable long-term side effects before recommending it as a first line in most cases. "
Diagnosed 3/29/14 Right Side AN 8mm x 3mm x 4mm
GK UPMC 6/13/14
MRI 12/03/2014

sandyinwisconsin

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Re: University of Southern California - not keen on radiation
« Reply #1 on: May 04, 2014, 06:44:07 pm »
Kat,

After watching this You Tube video from UCLA, I was more convinced of radiation.

https://www.youtube.com/watch?v=ZbS4K9ENMAg

If you can't open it, just go to You Tube and search for UCLA  Acoustic Neuroma.
I had a hard time at first with radiation, but just finished my treatments in January.   

Sandy
1 cm AN deep in the boney canal.  Treated with 26 treatments of radiation in December, 2013.  Please pray with me that this worked.

Petrone

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Re: University of Southern California - not keen on radiation
« Reply #2 on: May 04, 2014, 08:08:13 pm »

Hi Kat,

There has been other commentary here on this topic.  My two cents is that USC seems to have a bias towards microsurgery, possibly because that is what they specialize in. Even if they're good at what they do, the last thing any of us needs is a sales pitch on this or that treatment. 

One of the things I liked most about the otolaryngologist I initially consulted with is that he did not try to steer me towards one path over the other.  Instead, he gave me his unbiased opinion about all THREE general paths: radiosurgery, microsurgery, and W&W.  We all deserve the same objectivity from the people we entrust with our health and our lives.

Petrone   
1.4cm diagnosed 3/2010
W&W until 1.8cm by 10/2012
GK performed 4/17/2013 at Froedtert in WI
2 years after GK - 1.6cm
3 years after GK - 1.4cm

john1455

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Re: University of Southern California - not keen on radiation
« Reply #3 on: May 05, 2014, 12:52:48 am »
The problem with researching treatment options is it is difficult to determine if the information you are reading is biased or not. Neurosurgeons and facilities often recommend only procedures they do. That is why one should seek advice from those who are multidisciplinary (do both microsurgery and radiation). Check this site out if you haven't already because it contains some excellent information:

http://www.myacoustic.org/myacoustic/Photos%20and%20Videos/changinterview2.mp3

Another thing to keep in mind, especially in the health sciences, is you will ALWAYS be able to find studies that will contradict another if you look hard and long enough. One article is not reason enough to discredit what you have already read about. As an example, if 10 people ate at a particular restaurant and 9 people loved the food but 1 did not, that does not mean the food was bad in that restaurant just because 1 person out of 10 did not like it. You will never find universal agreement on the internet so do not be discouraged. Just know your sources and take that into consideration when trying to make a decision.
Diagnosed with 19x16x19mm cystic AN right side on 7/2013
MRI on 3/2014 showed AN increased to 21x20mm
right side 70% hearing loss, tinnitus, balance issues
CK at Stanford completed 3/21/2014 (3 sessions)
Dr Steven Chang and Dr Iris Gibbs

arizonajack

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Re: University of Southern California - not keen on radiation
« Reply #4 on: May 05, 2014, 10:13:09 am »
USC quotes:  "There are three treatment options available.......  Radiation is the third option. This is a nonsurgical approach often done in an outpatient setting. Radiation can be given as a single dose or in multiple or fractionated doses. This approach can be used for tumors under 2.5 centimeters with minimal contact with the brainstem and in patients that are not healthy enough for surgery. In general, we do not recommend radiation for people under the age of 65 as the long-term efficacy and potential risks are still not clearly defined. "  AND
" Radiation therapy (more than one session) or radiosurgery (single session) are useful treatment methods in appropriate circumstances. What those circumstances are is debatable and confusing at best. In general, radiation induces strand breaks in DNA, the genetic material of the cell. This theoretically leads to cell death and/or growth arrest in some fraction of the tumor. Although there are many studies described in our professional literature, each suffers from a lack of complete and long-term follow up.... We await solid evidence of efficacy and tolerable long-term side effects before recommending it as a first line in most cases. "

I'm calling BS on that.

Radiation treatment has been around for a long time and there have been many statistical studies about the long term efficacy.

Here are several reports.

http://thejns.org/doi/pdf/10.3171/2012.7.GKS12783

http://www.ncbi.nlm.nih.gov/pubmed/19625908

http://www.ncbi.nlm.nih.gov/pubmed/1630838

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

theshawn65

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Re: University of Southern California - not keen on radiation
« Reply #5 on: May 05, 2014, 02:56:48 pm »
Hi Kat, try not to take one places or Dr. opinion as radiosurgery has been done for 30+ years with many good outcomes long term. As in all cases, we are each individuals whose bodies respond to the different treatments in unique ways. If USC specializes in microsurgery you can bet they will find fault with radiosurgery any chance they get. And I dare say, were many of the Drs who specialize in microsurgery afflicted with this stupid tumor they would strongly consider radiosurgery themselves.

When talking to three different doctors at the Mayfield Clinic (well versed in AN experience) I still had the first surgeon I spoke with tell me my tumor was too big for radiation, while two others said "definitely not" too big for it. The second doctor was a neurosurgeon as well who specialized in different microsurgies for other tumors, but also specialized in radiosurgery for AN's. The third was a radiologist so he could be biased toward his only specialty of course just like the microsurgery only specialist was.

I asked both doctors who specialized in radiosurgery if they would recommend it were I someone from their own family and they said yes. Could they say that and be lying because they wanted to treat me? Possibly....but considering their length of doctoral experience I tended to take it at face value.

http://ucneuroscience.com/blog/symposium-shines-bright-light-on-acoustic-neuroma/

The Dr. Yang video link Sandy posted is great and was a big help when I found it making my decisions 6+ months ago.

It's a tough decision, one you will waffle on at times as is normal when making a decision of this importance that carries differing risks for each type treatment. At some point you will make a decision and be at peace with it I believe. What I did, was research all the options, then when I made my decision I stopped researching more as I felt I had the knowledge to make an informed educated decision that was best for me.

If I made a decision then kept researching further I'd probably still be procrastinating and researching today lol. Bottom line I could care less what anyone else chose for their treatment now and have zero desire to second guess myself as that would provide zero comfort to me.

Good luck with whatever treatment you choose as it will be the best choice for you.
2.2 x 2.2 x 2.3cm AN -- 3 FSR LINAC Oct 23-25th 2013

rupert

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Re: University of Southern California - not keen on radiation
« Reply #6 on: May 05, 2014, 03:40:40 pm »
I'm with Jack.  Calling BS on this one.  "long term efficacy and potential risks are not clearly defined"  Whoa!!  When it comes to AN's and treatment of any kind there is nothing guaranteed or defined.  Just look at these forums and what people have chosen for treatment and the results thereof.  Individual results may vary, is the common theme. No defined long term efficacy on surgery either.   Nobody can predict the long term effects of any of the treatment forms.   As a side note:  There are many times more doctors that would recommend radiation than don't.  We just try to keep everything in perspective and do our best for ourselves and what we feel comfortable with.

robinb

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Re: University of Southern California - not keen on radiation
« Reply #7 on: May 17, 2014, 10:05:25 am »
USC Keck only wants to do surgery. Period. What they post is a shame the way it can mislead and influence people seeking help. Prob good surgeon; I did see Friedman when he was at House and clearly he pushes surgery. I found him to be very arrogant, completely turned me off to the point that if I ever need surgery, would not likely consider him.

Just my opinion.
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

john1455

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Re: University of Southern California - not keen on radiation
« Reply #8 on: May 17, 2014, 12:53:01 pm »
Kat,

Have you seen this video about the difference between Gamma Knife and CyberKnife?

http://www.youtube.com/watch?v=v_wJ2z_RXc8
Diagnosed with 19x16x19mm cystic AN right side on 7/2013
MRI on 3/2014 showed AN increased to 21x20mm
right side 70% hearing loss, tinnitus, balance issues
CK at Stanford completed 3/21/2014 (3 sessions)
Dr Steven Chang and Dr Iris Gibbs