Author Topic: Perhaps a dumb question  (Read 4038 times)

RandomWalk

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Perhaps a dumb question
« on: March 07, 2012, 04:46:02 pm »
Hello everyone,

   I was recently diagnosed with a small AC roughly 13mm x 7mm.  I'm also 31 years old.  I have two questions for those of you who have had Cyber/Gamma Knife:

   I was told by a very reputable AN specialist (who I prefer not to name in this arena) that, because of my age, radiation was a bad option.  That longer term data on the procedure is not available and surgery is far-preferred in younger patients.  Are there any younger gamma/cyber knife patients here?  What, if anything, have you learned about the potential effects of radiation.


  Any guidance is much appreciated.

RandomWalk

pjb

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Re: Perhaps a dumb question
« Reply #1 on: March 07, 2012, 05:46:13 pm »
That is what I have been hearing as well the younger you are the surgeons prefer surgery and this is from some surgeons in the NY region.
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

lrobie

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Re: Perhaps a dumb question
« Reply #2 on: March 07, 2012, 06:41:11 pm »
I'm not as young as you, but at 45 I did have a radiation oncologist tell me that he would not recommend radiation because of my young age and the long term effect it could have.  I know that there have been some reported cases of malignancy already.  What we don't know is if there will continue to be reported cases and if that number will begin to increase.  That's where I'm stuck.

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

PaulW

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Re: Perhaps a dumb question
« Reply #3 on: March 07, 2012, 06:57:45 pm »
One of the challenges in seeking treatment is that the experts have different opinions.

Check out this link, it may help you put into perspective some of the different opinions that exist.

http://www.medscape.com/viewarticle/456117_2

Small part of the article is below..


Survey of Neurosurgeons on Acoustic Neuroma Management. A survey was mailed to members of the Congress of Neurological Surgeons in July 2002. Six hundred sixty-three surgeons (30%) responded to the survey. There were four questions written on one page. Forty one percent of responders were between the age of 40 and 50 years ( Table 2 ). Eighty percent of neurosurgeons (530) surveyed had either performed radiosurgery in a patient with an acoustic neuroma or had referred a patient for neurosurgery.

Survey Case One. Question: You are a 37-year-old neurosurgeon who presents with mild decreased hearing on one side. You have no tinnitus and no balance problems. Facial function is normal. An MR image reveals an intracanalicular acoustic neuroma and serial images have demonstrated a small amount of growth. Which management strategy would you choose for yourself? Observation; resection; SRS; or fractionated radiotherapy? (Fig. 2).

 
Response: The majority of surgeons (283 [43%]) stated that they would choose SRS for management of their small acoustic tumor. Only 122 surgeons (18%) stated that they would choose resection. Fractionated radiotherapy was chosen by 2% of responders. Interestingly, 240 surgeons (36%) stated that they would continue to observe their tumor rather than undergo any specific treatment at the time. It had been stated in the case presentation that serial images had already demonstrated a small amount of growth. This tumor had been observed and was increasing in volume. Nevertheless, approximately one third of responders continued to choose observation for a 37-year-old patient with a small but growing tumor.

We evaluated the age of the responding surgeon and compared this to the treatment chosen by that surgeon ( Table 2 ). Across the age groups between 30 and 70 years, at least twice as many neurosurgeons chose SRS for their tumor rather than resection. This is most pronounced in the younger surgeon age group (30–40 years), in which the number of surgeons choosing SRS over resection was fourfold higher. Observation, however, continued to be chosen by many. Although one might think that an older person might choose radiosurgery over resection, simply to avoid the risks of general anesthesia or the surgical exposure, this did not necessarily appear to be true. This case reflected the care of an actual neurosurgeon who had undergone GKS. He remains well 18 months following his procedure, maintaining a full practice. He has experienced no facial weakness or change in hearing.



 
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

PaulW

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Re: Perhaps a dumb question
« Reply #4 on: March 07, 2012, 07:54:56 pm »
While there is a small risk of malignancy, this needs to be weighed up against the risks of general surgery too.

Also remember that the amount of radiation you will receive is related to the volume of the tumour.
A 1.0 x 0.5 x 0.5 tumour in the IAC has a volume around 0.15cm3
A 3.0 x 3.0 x 3.0 tumour is 10.6cm3

It will take at least 70 times more radiation to irridate a 3cm tumour versus a 1cm IAC tumour.

One would presume that the risk of malignancy is far lower when treating small tumours.

Newer machines, higher accuracy, better targeting of the tumour through MRI's, lower dosages, better sparing of good tissue, all of these things help towards reducing the risks of radiosurgery.

There is now over 20 years of data on radiosurgery for Acoustic Neuromas, and much more data on radiation treatments going back 50 years, as well as risks of radiation from things like government atomic testing, Hiroshima/Nagosaki.
The risks of radiosurgery causing malignancy are reasonably understood.
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

RandomWalk

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Re: Perhaps a dumb question
« Reply #5 on: March 07, 2012, 08:41:40 pm »
PaulW,
   You seem very knowledgeable about this subject.  I was wondering though, how do they tell if the tumor stopped growing?   Growth rates for ANs are notiously slow to begin with... and there's always a degree of error in measurement of AN's via MRI anyway.  Sometimes it looks like 11mm, other times 10, still other times 13.  Complicating this problem is that swelling post CK may make the tumor appear larger in some cases...

   I understand that necrosis is not likely to be visible in a tumor my size - even if the CK were a total success.  So the only way to gauge the effectiveness of CK/GK is by studying the growth (or non-growth) rate.  This seems challenging and not without its own problems. 

   I really enjoyed reading that survey you posted... very interesting.  Thanks for the insight.

RandomWalk

   

MDemisay

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Re: Perhaps a dumb question
« Reply #6 on: March 07, 2012, 11:54:06 pm »
Random walk,

If anything I've learned in Life after living it for these brief 54 years is that the only question that is dumb is the unasked question! Here you are among friends, ask away!

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

ppearl214

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Re: Perhaps a dumb question
« Reply #7 on: March 08, 2012, 05:33:38 am »
I understand that necrosis is not likely to be visible in a tumor my size - even if the CK were a total success.  So the only way to gauge the effectiveness of CK/GK is by studying the growth (or non-growth) rate.  This seems challenging and not without its own problems.   

Correct.

The goal of any radio treatment on any AN is to stop further growth. Some demonstrate physical changes on an MRI view slice (ie: necrosis) but as long as there is no enhanced growth, that is the ultimate goal. There are some reports of shrinkage of the AN post-radio (not common but not unusual either.... I am one that did experience shrinkage of my AN post-CK).

Head MRI's do have a margin of error of +/- 2mm based on the type of MRI used (ie: open/closed magnets), reads of the images (each radiologist, dr, etc may measure from different edges of the growth, etc). 

It is true that by doing invasive/surgical procedures and having the doctor put a physical hand on the growth is easier to determine what exactly is the growth and to get an exact measurement, it is a chance we take, as radio patients, to rely on what MRI images are noting... but with medical technology improving all the time, it does become more reliable, IMO.

Hope this helps.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

PaulW

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Re: Perhaps a dumb question
« Reply #8 on: March 08, 2012, 07:01:46 am »
I think as patients we get hung up on the growth/dimension thing, as well as the "necrosis"

My understanding is that early necrosis has no bearing of long term success or failure of radiosurgery.
As long as the thing stops growing or shrinks after 2-3 years.

As for the measurements, this is how we as patients interpret the results on the radiologists report. Looking at those 2 or 3 dimensions on a report is a very simplistic view of what is really happenning, and that simplistic view means we should not read too much into 1-2mm here or there.

The neurosurgeons will look at the mulitple image frames and create a mental 3D model of the tumour in their heads, and then work out if it has changed or not compared to the last MRI.   

I think the measuring thing is more of a problem for us as patients and how we perceive those numbers..

So if you are concerned by the measurements probably worth having a good chat with your doctor.

Some things can make your tumour look a lot bigger than it really is.
If you have a sausage shaped tumour in your IAC then consider the following.

Think of a stick of French Bread, when you cut it.
You can make slices of bread bigger or smaller depending on whether you cut the bread diagonally or straight across.

The MRI does the same thing to the tumour as a knife to the French Stick.
And they can also choose which angle to cut the tumour..

So the important thing here is, What does the tumour look like in 3D and not just one slice on a 2D film,  the Doctor will of course consider this.

Meanwhile, us patients, are getting hung up on dimensions that may have more to do with whether the Breadstick was cut straight across or diagonally. 

MRI's are a lot more accurate than +/-2mm but for a whole lot of reasons including the bread stick effect, makes some of the measurements quite subjective to interpretation. 

10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

luttman

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Re: Perhaps a dumb question
« Reply #9 on: March 08, 2012, 04:48:51 pm »
I had Gamma Knife 30 days ago today at UPMC in Pittsburgh with Dr. Kondziolka. I am 45 years old. This is some of the information I found when making my decision.
They have not had any cases of AN malignancy's after radiation at UPMC to date.


http://www.irsa.org/publications/Vol9No2.pdf
(dated 2004)
Second, patients inquire about the risk of delayed malignant transformation.
Malignant schwannomas are rare, but have been reported to
occur spontaneously, after prior resection, and after irradiation. We
answer that delayed malignant transformation is always a risk after irradiation,
but the risk should be very low. We have not yet seen this in
any of our 6400 patients during our first 17 years of experience with
radiosurgery, but quote patients a risk of 1 in 1000 over the next 5–30
years of their life. We believe the risk of developing a tumor years after
radiosurgery is much less than the risk of mortality immediately after a
resection, and likely less than the risk of the patient developing another
tumor on his own in another body location.

http://anworld.com/malignancy/malignancy-bari.et.al.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1770165/

http://www.pennmedicine.org/neuro/gammaknife/ask/acousticneuroma.html

http://www.anausa.org/smf/index.php?action=printpage;topic=694.0

http://neuro-oncology.oxfordjournals.org/content/9/4/447.short

Also very good articles in the December 2011 issue of the ANA Notes (issue 120)

 


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