Author Topic: cyberknife or middle fossa at UPMC Pitts.  (Read 7470 times)

dianne

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cyberknife or middle fossa at UPMC Pitts.
« on: April 03, 2007, 03:02:41 pm »
Hi, I was diagnosed with an AN the end of Jan. 2007. I'm not very good with computors so please bare with me.My tumor is 5mm by 3mm. Very small compared to alot of the ones I've read on here. Anyway, I went to see Dr.Hirsch and Dr. Kassam at UPMC Presbyterian Hospital Jan. 30th. They do cyberknife radiosurgery or middle fossa micrsurgery- this is what the recomended for me.I am 53 years old,54 in June. I'm  in need of advice. I'd like feedback from any one who has gone to UPMC for AN treatment.Also,advice on which way to go. I have a little hearing loss,tinnitus mostly on right side,also fullness in right ear. Other than that I have no symtoms. Once in awhile I lose my balance but nothing drastic.     Thanks so much, Dianne

ceeceek

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Re: cyberknife or middle fossa at UPMC Pitts.
« Reply #1 on: April 03, 2007, 07:00:24 pm »
I am suprised that they opted for the micro surgery over the cyberknife due to the size..did they say why?
Ceeceek


ps..sorry cant really give opinion, but seeing that they do both..you have a good unbiased opinion it seems to begin with although I would as a patient like to know the reasoning for surgery over cyberknife seeing your hearing is good and minimal symptoms...
Such is life...Finally identified...vidian nerve schwanomma, 2.8x2.8x3cm.....in the middle but under my brain.....post transphenoidal endoscopic surgery April 19th, 2007 Pre CK treatment in Sept 07.....re-arranged cavity in hopes of reducing side effects and now officially diagnosed as hard headed.

Evan

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Re: cyberknife or middle fossa at UPMC Pitts.
« Reply #2 on: April 03, 2007, 08:51:12 pm »
Dr. Lunsford at UP authored the only long term study on radiation vs. microsurgery.  UP is one of the foremost radiation centers for the treatment of AN.  But as the previous post stated, you do seem to have a very small AN.  What symptoms if any do you have currently?

Evan
1.5 cm x 1 cm x .5 cm/Diagnosed March 8/AN Right Side as per MRI/Upon further review, docs do not know what it is.  Could be Facial neuroma/could be nothing.  Repeat MRI in 6 weeks.

ppearl214

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Re: cyberknife or middle fossa at UPMC Pitts.
« Reply #3 on: April 04, 2007, 09:46:29 am »
Hi Dianne and welcome to the forums. Good to see you here.  You are truly blessed that your AN is extremely small...... you do have many options, as you know, since you are already in communications with treating physicians and researching treatment protocols. There is a wealth of info here on the forum boards (and it can feel overwhelming at times, as everyone provides terrific inputs)......

Like you, I was also told middle fossa vs. radio-surgery.  At the time of treatment, my AN grew to 1cm.  I felt, for me, that at that point, with minimal symptoms, I should opt for treatment.  At this point, your age really is not a factor for radio-surgery and am also curious since your symptoms are also minimal.

Anyway, welcome aboard.. the drinks are watered down but you will find answer and shoulders and good ears and a giggle or 2 when needed.

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

dianne

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Re: cyberknife or middle fossa at UPMC Pitts.
« Reply #4 on: April 04, 2007, 05:53:00 pm »
Hi everyone, I guess I stated my post wrong. They didn't recomend microsurgery over cyberknife. They recomended either one or the other. My symptoms right now are slight hearing loss in my right ear and tinnitus, also pressure and fullness in my right ear. Has anyone been told that there is a slight chance that radiosugery could cause the tumor to turn to cancer down the road ? Also does anyone know if or how I could read up on Dr. Lunsford's research on radiosugery vs microsurgery ?
                                                                       
                                                                                                  thanks again so much !
                                                                                                             Dianne

macintosh

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Re: cyberknife or middle fossa at UPMC Pitts.
« Reply #5 on: April 04, 2007, 09:12:34 pm »
Actually, the website at UPMC (www.acousticneuroma.neurosurgery.pitt.edu) is one of the best sources of information about treatments of ANs.

ppearl214

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Re: cyberknife or middle fossa at UPMC Pitts.
« Reply #6 on: April 05, 2007, 11:54:11 am »
Ah, Dianne... you got hit with the scare tactic of radiosurgery could really cause cancer down the road.  Please know that with radio-surgery (not radiotherapy as there is a difference), it is not a "disposable" radiation that is used.  The chances of you getting hit by lightening is more than you getting cancer from radiosurgery.  There have been many posts here and on the Cyberknife Patient support website (http://www.cyberknifesupport.org/forum/) with full discussions on this.... please do not be duped into believing this.  Yes, the risks/chances are there as with any risk in life, but the chances are so dang minute, I'm more worried (personally) for walking across the street and getting hit by a MacTruck.....

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

FlyersFan68

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Re: cyberknife or middle fossa at UPMC Pitts.
« Reply #7 on: April 05, 2007, 01:13:57 pm »
Ah, Dianne... you got hit with the scare tactic of radiosurgery could really cause cancer down the road.  Please know that with radio-surgery (not radiotherapy as there is a difference), it is not a "disposable" radiation that is used.  The chances of you getting hit by lightening is more than you getting cancer from radiosurgery.  There have been many posts here and on the Cyberknife Patient support website (http://www.cyberknifesupport.org/forum/) with full discussions on this.... please do not be duped into believing this.  Yes, the risks/chances are there as with any risk in life, but the chances are so dang minute, I'm more worried (personally) for walking across the street and getting hit by a MacTruck.....
Phyl

Phyl, I believe there is no difference in the radiation used for acoustic neuromas versus that used for cancer. Radiation is radiation and all types present with the same benefits and risks. I don't understand the word "disposable" in regards to radiation. Please elaborate so that we make sure we are not potentially creating anymore myths. If turns out that I am wrong I do apologize in advance but in all my research I have never heard of that term. The future risks do appear to be quite small especially those who are not tumor prone but I would definitely seek clarification on that "disposable" term. Maybe you can check with the Cyber board you previously mentioned? Hope to hear back.  Thanks, Steve   :)

FlyersFan68

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Re: cyberknife or middle fossa at UPMC Pitts.
« Reply #8 on: April 05, 2007, 01:23:31 pm »
Hi Dianne,
   You are a good candidate for all three options being Mid Fossa, Cyberknife and Oservation. In the end only you can decide so research all options and I wish you all the best of luck. Don't let it get the best of you! Take Care.

ppearl214

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Re: cyberknife or middle fossa at UPMC Pitts.
« Reply #9 on: April 05, 2007, 01:51:18 pm »
Hi Steve,

I'm at work right now and can't do the full dig, but this is just one of MANY posts and articies on such... will look for more later, but this is one start... (also follow the link within the thread noted below)

http://anausa.org/forum/index.php?topic=677.0

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

ppearl214

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Re: cyberknife or middle fossa at UPMC Pitts.
« Reply #10 on: April 05, 2007, 02:00:17 pm »
http://anausa.org/forum/index.php?topic=2725.msg29747#msg29747

add'l thread/.... pls note Bruce and Mark's commentaries... I'm trying to find more to back what I note but need more time and I have to close my work day at office... will research more later :)

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

FlyersFan68

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Re: cyberknife or middle fossa at UPMC Pitts.
« Reply #11 on: April 05, 2007, 02:08:49 pm »
No problem I'm almost out the door too. I will check back later...

macintosh

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Re: cyberknife or middle fossa at UPMC Pitts.
« Reply #12 on: April 05, 2007, 02:40:15 pm »
Here's the description from the UPMC website regarding the long term risk of malignancy from GK:

Malignant schwannomas are rare, but have been reported de novo, after prior resection, and after irradiation. We answer that this is always a risk after irradiation, but that the risk should be very low. We have not seen this yet in any of our 5,400 patients during our first 15 years experience with radiosurgery, but quote the patients a risk between 1:1000 and 1: 20,000. We reported one patient with a malignant mesenchymal tumor of the cerebellopontine angle that resembled an acoustic tumor. One report from Japan found a malignant tumor four years after resection, and six months following radiosurgery. The time interval after irradiation was too short to be causative. A second report noted the development of a temporal lobe glioblastoma 7.5 years after radiosurgery for a nearby acoustic neuroma. The temporal lobe had received a low radiation dose. In contrast, we have a patient who had initial management of a frontal lobe astrocytoma, and years later developed an acoustic neuroma. Was the development of these tumors related in some oncogenetic way, or were they radiation related? 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 their own in another body location.

Evan

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Re: cyberknife or middle fossa at UPMC Pitts.
« Reply #13 on: April 05, 2007, 06:29:55 pm »
From what I have read (and from what I have heard from speaking to several doctors) there is no definitive link between radiation and future malignancies.  Any evidence is anecdotal in nature.  What you should also know about radiation is that even though it is clearly "safer" than microsurgery, there is still a 1 in 4 chance that your hearing will be affected.  Nevertheless, those are simply statistics and as I have said previously (and others have said and are saying), you should explore all of your options, get solid consults and then make the decision for yourself.  As long as you are comfortable with any decision (radiation vs. microsurgery vs. observation), that is really the only thing that matters. 

Evan
1.5 cm x 1 cm x .5 cm/Diagnosed March 8/AN Right Side as per MRI/Upon further review, docs do not know what it is.  Could be Facial neuroma/could be nothing.  Repeat MRI in 6 weeks.

goinbatty

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Re: cyberknife or middle fossa at UPMC Pitts.
« Reply #14 on: April 05, 2007, 08:52:08 pm »
Hi Diane,
My AN is small too and it sounds like we've experienced similar symptoms.  My local ENT suggested middle fossa.  I've consulted with a neurosurgeon about gamma knife.  Spoke several times with nurse at Skull Base Institute about endo.  Also spoke with Dr. Field in Orlando about endoscopic+microsurgical approach.  With my age (46 going on 21 - HA!) and small size tumor, he recommended radiation, either gammaknife or cyberknife, as there are less overall risks associated with those.  I had heard that before of course but for some reason coming from him it finally made sense or sunk in, however you want to look at it.  I'm still not sure which route I'll take but continue to research all options.  I plan to visit the gammaknife center soon in SC.  I've also requested info about cyberknife from GA and FL centers.  Hopefully one day soon, I will come to a conclusion as to what is best for me.  I do believe that after all is said and done, we really should be able to add research analyst to our resumes, don't you think?!  Good luck in your research and keep us posted. 
1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

 


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