Age and treatment method

[CC]

Every single doctor I have consulted says that because I am young (46) surgery is THE method for my AN.  There is no medical reason radiosurgery could not work, but they say radiosurgery should only be considered for people over 80 years of age.  Like everyone else I want the treatment I choose to work, but my AN is only 1.77cm, I have no symptoms other than very mild hearing loss (outside the speech range) and the other overriding factor is that I am a musician so hearing is vitally important.  But, that said, I want to make the right decision.  I've read a lot of postings on this site and am scared by the complications arising from surgery.  I have also been told that middle fossia isn't a surgical option as most of the AN is outside the auditory canal.  I have seen six doctors already, have just sent a copy of my MRI to Stanford for their opinion, and am about to see doctors 7 and 8.  How many doctors is too many doctors?  I would appreciate any help I can get shedding light on age and treatment methods so I can make an informed decision. 
CC

[philadelphia1]

I'm 45 with a ~1cm AN and was told (by a surgeon at the University of Pennsylvania) that I have the options of watch & wait, surgery, or radiosurgery.  Six months later I'm very close to a decision to the FSR route at Thomas Jefferson University.

Unless there is something unusual about your tumor (like its placement - on brainstem), you probably have more options than just scapel surgery.  Doctors tend to pitch what they are selling. Check out some place that do gamma knife or cyberknife/fractionated radiosurgery like
Stanford (Cyberknife)
University of Pittsburgh Medical Center (Gamma Knife)
Johns Hopkins University (FSR)
Thomas Jefferson University (FSR)

Dr. David Andrews at Thomas Jefferson made the case that scapel surgery and radiosurgery are both very effective at tumor control.  Getting the tumor is no longer the problem. The challenge is to minimize other unwanted outcomes like hearing loss.  He makes a good  case that FSR is the best option for hearing preservation.  He spoke at the last ANA convention.  I didn't hear him there, but you can purchase the tape for $13.50 at:

http://www.ctran.com/scripts/shopplus.cgi?DN=ctran.com&FILE=/orders/ANA/orderform.htm

ML
Philadelphia

[IFA]

Hi, I am 34 years old, my AN (right) is 1.5cm and even my surgeon said that I am eligible for all three options but he (of course) recommends the surgery. So far I couldn't find any convincing research showing that my odds to have a long happy life after a microsurgery are better than after a radiosurgery. Would be interested to know why you prefer FSR to other radiotreatments (GK, CK)? Is it hearing preservation or something else?

All the best to you.


IFA   

[philadelphia1]

After I ruled out scapel surgery (too many negative outcomes), I went to Dr. Andrews at Thomas Jefferson where the do both GK and FSR.  I had actually been leaning toward GK because it is one-shot, in and out, over and done with.  I was also impressed with the research done by the University of Pittsburgh's Medical Center and the fact they have done over 1000 ANs.

Dr. Andrews recommended FSR using their dedicated LINAC because he thinks there is a better chance of hearing preservation and lower chance of other negative outcomes with FSR over GK.  They do both treatments at Thomas Jefferson University published in 2001 comparing outcomes for about 120? patients -- half FSR, half GK.  Results were roughly equivalent except FSR did significantly better on hearing preservation.

Another factor was insurance.  Thomas Jefferson is in-network for my HMO.  I would have had to fight hard and possibly pay my own way to go to Pittsburgh. 

Other things equal, I'd rather get treated in Philly over long distance treatment since I live here and there are good treatment options available.

Here's the citation for the FSR/GK study:
David W.Andrews et al,
"Stereotactic Radiosurgery and Fractionated Stereotactic Radiotherapy for the Treatment of Acoustic Schwannomas: Comparative Obsertations of 125 Patients Treated at One Institution,"
Int J. Radiation Oncology Biol Phys, vol 50 (2001).


ML
Philadelphia

[russ]

Hi
  Re: The issue of FSR vs. GK, I just have the assumption treatment outcomes and complications will have similar positive stats if performed say, at UPMC ( GK ) or JHH for ( FSR ).
  Intracanicular midfossa microsurgical outcomes as reported by HEI are very near similar to those of radiation.
  I think GK as a slight edge over Linac in accuracy but not enough to really matter because the AN is irregular in shape.
  One might remember irradiation is not always w/o post Tx complications.
  Best wishes to all!
  Russ

[JHager]

Hello!

Having done considerable (you might say exhaustive), including speaking to my father and brother, who are both surgeons, (my brother is a surgeon at Jefferson in Philly - small world!), I have decided one thing is true: whatever your surgeon is the most comfortable with is what he or she will recommend.  Do they have LINAC? That's what will be suggested.  Are they a Gamma or Cyber Knife center?  You bet that's what you'll hear.  Are they surgeons?  Then that will be the 'best way' to go!

I believe Russ, among others, has it right: consult with as many as you can, from each possible treatment method.  Then, go with what feels best for you.  There are no perfect solutions - each has risk factors.  But I think it's true that we know what is best for ourselves, especially when it comes to something as serious as brain surgery.  (And I include radiation as surgery - you'd be foolish to treat such a procedure lightly!)

Making this decision is probably one of the hardest things you'll ever do.  I wish everyone who is faced with it, as we all are, the best of luck and my prayers.

On a lighter side, facing AN does make other decisions, which you may previously have dreaded, much easier.  I recently bought a new car, trading in a fairly new minivan for a smaller, fuel-efficient sedan.  I did my research (we know about research, don't we?  ), calculated a fair value for both the trade-in and the new car, and started hammering away at the local dealerships.  I don't think they've often run in to someone who is both prepared and immune to stupid sales pitches.  In the end, I got the car I want and a check for several thousand dollars.  Pretty good deal, considering the first offer they gave me would have had me PAYING for the new car! 

We're stronger than we think!

Josh

[CC]

Thanks to all of you for your insights.  Sorry it's taken me some days to post a reply.  I really needed a break from all of this  - it was getting to me.

It seems the Philly connection is rampant!  Coincidentally I'm also off to Philly to Dr Thomas Wilcox at Thomas Jefferson for an opinion.  I had hoped to speak with someone who did both invasive (as I've now come to call it) surgery and radiosurgery because as Josh says, everyone will recommend their particular expertise as "the way".  Hope this guy can give me a balanced view.

Incidentally I recently purchased the papers for a study done by Dr Stephen Chang, Stanford University Hospital on staged stereotactic radiosurgery using cyberknife.  Although cyberknife is a relatively young procedure results are promising.  The study looked at patients at the three year post treatment mark (some were post surgery regrowths).  74% of patients still had serviceable hearing, no patient with at least some pre treatment hearing completely lost it, only one AN progressed after treatment, 50% decreased in size and the remainder had no grown, and no patient had permanent facial nerve damage.  This is the first study I've read on CK.  I hope that someone does a study soon comparing GK and CK.  But I think that will be too late for me!  Frankly the stats most doctors and people on websites quote to me haven't been backed up by hard scientific evidence.  But from what I've been able to glean from those studies out there GK and CK are comparable in their success rate - with CK showing early results at being better at hearing preservation.  And regrowth from both seems as rare an occurrence as it is from traditional surgery.  Of course the better surgeons as with the better radiosurgery guys may have better results.  But this is across the board.

I'm at present waiting to hear Dr Chang's opinon and once I have that and the TJ opinion, I plan to get a final view from the doctors at House.  Then it's decision time.  Frankly I've already ruled out GK because of the good chance of healthy tissue damage.  And I'm really loathe to have someone carve up my head just because I'm young and healthy.  So unless a doctor can give me a medical reason why I should choose surgery over radiosurgery I'll probably end up with CK.  But I'm keeping my options open until all the opinions are in.

Lucky for me my insurance will pay the medical costs of wherever I choose.  And I don't mind travelling to get someone I feel comfortable with.  As corny as it sounds I think that's what I haven't yet experienced - someone who makes me feel as if they actually care about me. 

CC

[JHager]

CC,

I completely understand the need to just get away from it - I do the same thing!  Just take a few days and force myself to not think about it...

Good luck with all your appointments.  It really sounds like you're getting the most balanced information, which is exactly what is needed.  I hope you find a doc you're comfortable with - that is key.  I'm having translab surgery on November 7 (my AN is too big for radiation), and I was fortunate enough to find two doctors here in Las Vegas who were both expert and comforting.

Please keep us posted!

Josh

[CC]

Josh

Thanks.  As I think we've all found it's a long hard road.  But I'm starting to realise the wisdom of that old saying....what does not kill you makes you stronger.  Will keep you posted.  Incidentally, what size is you AN?  I was told I could have CK with an AN up to 2cm.

CC

[philadelphia1]

Here's a citation for a study that compares FSR and GK.  It's not random assignment (I don't know of any that are) and the follow up period isn't as long as I'd like. The bottom line is the same results you summarized in your post (rough equivalence on tumor control, better preservation of hearing for FSR).

Andrews DW, Suarez O, Goldman HW, Downes, B, Bednarz G, Corn BW, Werner-Wasik M, Boulos PT, Rosenstock J, Curran Jr. WJ. Stereotactic radiosurgery and fractionated stereotactic radiotherapy for the treatment of acoustic schwannomas: comparative observations of 125 tumors treated at one institution. Int. J. Radiation Oncol. Biol. Phys, 50:1265-1278, 2001.

Good luck with your appointment at Jeff, as the place is affectionately known.  Feel free to email me offline if you need any local info -- I'm great with restaurant recommendations, tourist info and travel logistics.

ML
Philadelphia

[JHager]

Hey CC,

My AN is 3+cm.  I had a lot of ear/throat infections as a kid, so no one thought it unusual when I started to lose my hearing.  I switched ears when talking on the phone in 1994, so I've probably had the AN since before then.  My neurotologist thinks it probably showed up in 91-92.  Ah, well.

I've actually been doing some research on the actual surgery; checking out pictures, etc.  While it is still brain surgery, it's not as invasive as I first thought.  The hole they drill, from what I've read, is quarter to half-dollar sized.  Not too bad, really.

My neurosurgeon is making it his primary goal to preserve my facial nerve, even if that means leaving some of the tumor.  If that's the case, they'll monitor me and Gamma Knife the residual tumor if necessary.  He doesn't like Gamma for a large tumor, but has had success (he's done close to 300 AN's) with the translab/Gamma approach.  I feel like I'm in good hands.

My surgery's scheduled for Monday, November 7.  I'm a high school teacher, and that coincides well with the holidays - I can get 8 weeks off while only missing 5 weeks of classes.  I have to say, I feel more anticipatory than nervous - 'just get it over with'.  For now, though, everything else seems a little bland.  Just mentally prepping for surgery and recovery, I assume.

Hope all is going well, and the right answers forthcoming!  Let's keep each other posted!

Josh

[Desilu]

CC

I am glad know that you are going to check with House Ear Institute before making your final decision. The doctors out there really make you feel comfortable. They answered every question to my satisfaction. Although my tumor was smaller than yours (8mm) I had a very good outcome. My speach discrimination before surgery was 84% after surgery it was 96%. You will know when you have found the right doctor. You only have one chance to chose the best doctor, take your time. I wish you the best, with whatever decision you make. Ann

House Ear Institute
July 26, 2005
Dr. Brackmann & Dr. Hitselberger
5mm x 8mm left AN

[jamie]

  I was told I could have CK with an AN up to 2cm.

Hi CC, CK can be used on tumors larger than 2 cm, they are even using it to treat tumors larger than 3 cm, which pretty much used to be the ceiling with gamma knife.