Surgey vs radiation dilemma

[schram]

Hello Everyone!
I have been reading many of your messages and now, I am ready to ask a few specific questions....my father, 70 years old, was diagnosed with an AN 3 years ago and was in the wait and watch category.  His hearing has been completely lost in his right ear, so saving his hearing is not an issue.  Recently, the tumor has grown and now the doctors that he has consulted suggest doing the surgery.  I am unfamiliar with the various surgical methods, but even more confused as to his option to do the Gamma Knife.  It seems like the surgeons suggest surgery and the GK doctor suggests the GK.  I also don't understand why in some cases, the GK is a one time procedure, whereas, in other cases, it requires 25 doses?  Also, we are in San Antonio and wonder if anyone knows of a team of doctors to recommend.  Thanks!!

[ppearl214]

Hello Everyone!
I have been reading many of your messages and now, I am ready to ask a few specific questions....my father, 70 years old, was diagnosed with an AN 3 years ago and was in the wait and watch category.  His hearing has been completely lost in his right ear, so saving his hearing is not an issue.  Recently, the tumor has grown and now the doctors that he has consulted suggest doing the surgery.  I am unfamiliar with the various surgical methods, but even more confused as to his option to do the Gamma Knife.  It seems like the surgeons suggest surgery and the GK doctor suggests the GK.  I also don't understand why in some cases, the GK is a one time procedure, whereas, in other cases, it requires 25 doses?  Also, we are in San Antonio and wonder if anyone knows of a team of doctors to recommend.  Thanks!!

Hi schram and welcome. Sorry to hear about your dad but will try to help answer.

GK is typically done in 1 dose only (although, there are 2 locations to my knowledge that are "fractionating" them into a few days).  When you note the "25 doses", that typically is for FSR (ie: Novalis), not GK.

Since your dad's hearing in his ear is pretty much gone, GK is a very viable radiation treatment option for the AN (other factors have to come into play when deciding any form of radiation... ie: location of tumor, size of tumor, if it is pressing on the brainstem, etc).  "Fractionating" (ie: breaking it up into multiple doses vs. 1-dose like GK, or on occassion, Cyberknife, etc) does help with hearing preservation, but it is also to help prevent large doses of radiation to surrounding structures (ie: the brainstem, other nerves in the immediate area like the trigeminal nerve, etc).

As you noted, the surgeons are touting surgery... the radiation docs are touting radiation.... what we have discussed here extensively is that docs tout what they know and their comfort levels.  The most difficult part is to sit back and weigh out the differences for our own particular situation.  Each AN journey is unique unto itself and it is up to us to become the best, well-informed AN patient (and in your case, as a caregiver) we can be for our own particular situation.

I hope this info helps and I'm sure others will chime in with their thoughts.  Please keep in mind that "individual results may vary" and we're here to help share experiences... and knowledge we have learned along the way, to help you out.

Again, welcome........
Phyl

[Jim Scott]

Hi, Schram ~

I split your post into it's own, separate thread so it wouldn't get 'lost' in 'Sunfish's' thread and the many responses it's received. 

Phyl ('ppearl214') has quite adequately responded to your questions and I'll simply attempt to amplify her cogent answers.

Because I underwent FSR (Fractionated Stereotactic Radiation) I'll venture to explain that this is a form of radiation treatment that uses relatively low 'doses' of radiation aimed at the AN and stretches the treatment out over (generally) 5 weeks to give the brain tissue time to 'recover'.  I received a total of approximately 27 Gy in 26 fractions, which, according to my radiation oncologist, was what he considered the smallest amount of radiation I could receive that would still be effective.  GammaKnife is usually a one-time procedure using multiple beams of radiation of fairly low intensity to spare surrounding brain tissue.  The diverse radiation procedures are simply variations on delivering the radiation safely and effectively to the patient.  For what it's worth, I suffered no ill effects from my 26 FSR sessions (autumn, 2006) and the tumor responded by showing necrosis and some minor shrinkage on my last MRI scan.

As for surgery, there are numerous pros and cons regarding removing the tumor but the patient has to be in good health and of course, complications can occur.  Frankly, complications can occur following radiation procedures, too, so there is no panacea.  As Phyl wisely stated, we each have to look hard at the various treatment options and make an informed decision as to how we'll proceed.  However, as we often caution, there is no guarantee that any given procedure will be trouble-free and totally effective.  We can calculate 'odds' and factor in the variables but the actual outcome will never be known until the patient is done with the procedure, be it surgery or radiation, or, in my case, both.  However, the overall record for both surgery and radiation procedures is quite good.  Unfortunately, the location of an acoustic neuroma is the real culprit and makes treatment anywhere from problematic to difficult, yet the majority of our members do well, even if there are usually a few issues to deal with, post-op/radiation. I had both surgery and radiation (planned approach) and had few issues - and, if it's any comfort, I was 63 at the time of my diagnosis, surgery and radiation.   

I trust you'll receive more replies and we can help you and your father as you try to choose the most efficacious treatment for his AN.

Jim

[leapyrtwins]

It seems like the surgeons suggest surgery and the GK doctor suggests the GK. 

Schram -

you hit the nail right on the head.  In my opinion, your father should consult with a doctor who treats ANs with both radiation and surgery.  My neurotologist does both and he was able to give me a very unbiased opinion of the choices, and in addition, he left the decision up to me.

Kaybo (Kay), Pooter (Brian), and  texsooner (Patrick) are all in Texas - although I don't think in San Antonio - maybe one of them can recommend a doctor.

Jan

[schram]

thank you all for your responses.  i am slowly learning how and why there are so many approaches, and with 3 opinions, there are at least 9 options!!  i am joining my father for his scheduled appointment in april and i will now know what to ask and be better informed.  the 2 doctors that work together on ANs are bogave and miranda-king in san antonio.  so, if anyone has heard of them, or can recommend another team, i would appreciate it.

thank you all again and i look forward to hearing from any of you!

schram

[leapyrtwins]

Schram -

I sent a copy of this thread to Kay, Brian, and Patrick in the hopes that one of them will have some doctor suggestions for you.

Jan

[texsooner]

Hi Schram. I'm sure there are capable doctors in San Antonio, but I'm not familiar with them. If you're willing to travel (about a 3 hour drive to your east), Houston has some very reputable doctors with experience in treating AN's. My neurotologist is Dr. Joseph Chang and I would definitely recommend him highly. Dr Chang teams up with a local neurosurgeon for AN surgeries, but also considers radiation treatment as well depending on size and location of the AN.

There are other good doctors here in the Houston area and other areas of Texas with AN experience that I'm sure others can inform you about if interested.
Patrick

[Pooter]

Hi Schram...  Welcome to the forum!

As Jan said, I'm from Texas, however I'm in the Houston area so I have little to no knowledge of anyone reputable in the San Antonio area..  Like Patrick, if you're willing to travel to Houston for treatment, I have several doctors that I could recommend personallly.  Drs Vrabec and Trask (my doctors) come to mind first..  Dr Chang as Patrick suggested would be another.

Being in San Antonio, I know they have an ANA Local Support Group there.  In fact, the group leader was just featured on Discovery Health channel "Mystery Diagnosis" for her AN.  So, I'm sure they would be wonderful in recommending a local doctor for your dad.  And with the military hospital there in town, I can't imagine there NOT being a great doctor locally.

Welcome to the forum and let us know if we can help futher. 

Regards,
Brian

[schram]

Good Evening Everyone!

Hope everyone is doing well...i did find out that my dad's AN measures 3 cm and it is on the auditory canal.  (I think that's correct?)  We will meet with the doctors here in San Antonio and possibly the House Clininc in Los Angeles.  After reading many of your posts, it seems that others have gone there as well. 

I wondered if anyone has an opinion on House and/or if it worth the travel expense and the inconvenience?  I guess I already know the answer to this...no one can guarantee the outcome, so go with your gut!  Well, anyway, it is helpful to feel like we are making the best decisions based on gathering as much knowledge as possible and I would love to greaten my dad's odds somehow for a complete recovery. 

Thank you for your information and suggestions!

schram 

[JerseyGirl2]

I wondered if anyone has an opinion on House and/or if it worth the travel expense and the inconvenience?  I guess I already know the answer to this...no one can guarantee the outcome, so go with your gut! 

Well, I can obviously speak only for myself and my own experience, but I traveled from New Jersey to House in Los Angeles and felt that it was absolutely worth the expense, time, and energy expended. I had my AN surgery there in January 2008, have never regretted my decision, and would do it again in a heartbeat.

I'll add that it was the only place I considered for my surgery, and I'm sure you've learned from reading the posts on this forum that there are many, many wonderful places for AN surgery throughout the country. So you're right -- you've answered your own question -- since no one can absolutely guarantee the outcome, go with your gut and don't second-guess your decision. If you've found some doctors that you feel confident about who are geographically closer, then the expense and inconvenience of travel very well might not be worthwhile in your case!

Best wishes as you make your decison!

Catherine (JerseyGirl 2)

[leapyrtwins]

I wondered if anyone has an opinion on House and/or if it worth the travel expense and the inconvenience?  I guess I already know the answer to this...no one can guarantee the outcome, so go with your gut! 

BINGO!

Schram -

nothing against House, but I found that the best doctor and best place for me to have surgery was pretty much right in my own back yard; about 30 minutes from my home.  The main thing with AN surgery - and that's basically the option open to your dad since his AN is already 3 cms - is to find a doctor who has lots of experience in treating ANs.  This is equally important in those who opt for radiation.

Most who have traveled to House have been very satisfied with their outcomes.  However, there are just as many who didn't go there that are just as satisfied.  I can echo what Catherine said about never regretting my decision and doing it again in a heartbeat - and as you can see, she choose House and I didn't.

Traveling for treatment isn't practical for everyone - due to family situations, medical insurance, financial restrictions, etc.  And some - me included - couldn't imagine getting on a plane and flying home after major surgery. 

It's a personal choice.

Your dad should investigate all his options and then make the decision that is right for him.

Jan

[JerseyGirl2]

  And some - me included - couldn't imagine getting on a plane and flying home after major surgery. 

Just a quick comment on flying after surgery! Your doctor won't release you until you're ready to fly, and ten days post-surgery seems to be the typical "wait" at House. I wasn't at all apprehensive or uncomfortable prior to, during, or after my cross-country flight. If it's feasible, patients might want to consider upgrading to first-class if they have a long return flight -- it does make a difference. Some patients elect to get a wheel chair at the airport -- I didn't need one, but I'm sure that I walked more slowly and carefully that day than I did before or have done since.

Bottom line: please don't let "fear of flying" be a deal-breaker in considering your place of treatment!

Catherine (JerseyGirl 2)

[Tumbleweed]

Hi, Schram:

You might find the following thread, which compares surgery with CK and GK, helpful:
http://anausa.org/forum/index.php?topic=6670.0

Look partway down the page for my post, which makes the comparisons.

Best wishes,
TW