Radiation vs. surgery?

[JoyDiane]

Hi,
This is my first time on this site.  I am 53 yrs. old and have a 1.3 cm. AN, recently diagnosed.  I have fairly good hearing in AN ear and no balance or facial issues (yet).  Went to Stanford Medical Center in CA., about 1 hr. from my home.  Saw very nice neurosurgeon at Dept. of head and neck surgery.  He recommends retro-sigmoid approach.  Lots of possible complications, 5days in hospital, possibility of 1-3 months off work, etc.  Yesterday I had consult w/head of radio-oncology dept. who recommend radiosurgery, specifically Cyber Knife.  (This was developed at Stanford and she has been working with it for 10 years.)  I would like to believe that Cyberknife would take care of my AN (stop it's growth) as opposed to having surgery.  My concerns are: not enough long-term studies, although there are some for Gamma Knife which is similar technology; loss of hearing after radiation; AN could keep growing or grow back making surgery risky after radiation; irradiation of other cells causing malignancy; etc.  Does anyone know anything about the success rates and risks to these two different approaches (surgery vs. Cyber Knife)?

Any studies you can recommend?  Each physician seems to have their own bias and I'm having trouble doing what is best for myself in the short AND long term.

Thanks for your help and thanks for being there!
-JoyDiane

[Syl]

JoyDiane:

Welcome! Pretty soon there will be others checking in with advise and recommendations or to just say hello. I can't give you any statistics on success rates of surgery vs CK. However, there are folks in the forum who have had CK or GK and are very happy with their decision.

I had the retrosig approach, and I can tell you why I chose it. I needed to know that the tumor was out. With CK and GK it takes time to know that the procedure worked.

I did worry about the additional risks that come with surgery, such as risk of stroke, infection, CSF leak, headaches. Actually I don't know that headaches are not a risk with CK and GK, but they are with retrosig. Also, the down time is much longer after surgery. I was on medical leave for 2 months. With GK and CK down time is only days, if there's any down time at all.
 
Do you mind if ask what city you live in? I'm in Stockton.

Syl

[cindyj]

Hi, JoyDiane, welcome to the site!  I am roughly your age and my tumor was roughly the size of yours...your question of radiation vs surgery is the one that almost all of us here struggled to answer for weeks, months, even longer for some.  Someone will be along with great answers about exact facts and figures for you, I'm sure.  It is such a personal decision and one that, unfortunately, only you can make.  Sounds like you are on the right track to make a well-informed decision...one that is NOT easy to make.  But, we'll help in any way we can (sorry I can't be of more help w/ #'s for you).  I chose surgery over radiation for various reasons, but both approaches have risks and issues...surgery, obviously has the potential of some pretty serious issues, as Syl points out.

Have you contacted the ANA office yet?  They can send you a wealth of information that can be very helpful to you in your research. You can request info from this website or you can contact them by phone at 770-205-8211.  There are very nice and would be glad to hear from you.

Best of luck to you,

Cindy

[leapyrtwins]

Hi and welcome.

Cindy has a great suggestion - contact the ANA for their informational brochures, they are invaluable.  They will also send you a WTT (willing to talk) list which you'll find very helpful; I'm on it myself.

I had the choice of surgery or radiation (specifically gamma knife) but chose surgery for various reasons.  Treatment choice - if you have it - is a very personal and individual decision.  My choice may or may not be yours.  You need to educate yourself on all the options, weigh the pros and cons, and go from there.

I can tell you that there is a wonderful doctor at Stanford (Dr. Chang) who does CK and from what I recall he also does surgery.  Steve Gerrard, one of our moderators, had CK with Dr. Chang in September 2007 and he's been very happy with the results.  I'm sure he'll be along later today to give you his input.

Best,

Jan

[JoyDiane]

Wow!  Thanks everybody! Phyl, I live in Santa Cruz so I'm pretty near you.  Thanks everyone for your help.  I just emailed Dr. Chang so hopefully he'll help me decide.  In the meantime I'll keep checking this site and doing research.
Thanks,
Joy

[Sam Rush]

My AN was about your size. I choose surgery because I wanted it out.  In experienced hands, Stanford or House Clinic you have a 98% chance of an excellent surgical result, and in your case, hearing preservation.

[Jim Scott]

Hi, JoyDiane - and welcome!  I'm sorry you have to deal with an acoustic neuroma but at least you've found a great website to research and ask questions.

As you probably realize, the question of what treatment to employ to address your AN is always both crucial and difficult.  Surgery removes the tumor but does present risks and inconvenience.  Radiation is physically easier and more convenient but presents it's own risks.  I've undergone both surgery (retrosigmoid) and radiation (FSR) in a carefully-planned assault on my large AN that would spare my facial nerves and avoid complications.  That was successful.  Three years later, I'm doing quite well and living a normal life.  However, we always emphasize here that we're unique individuals and that there is no treatment, doctor or facility that can guarantee success and no complications. I wish it were different.  Ultimately, you'll have to come to a decision on your own, based on research and all the other factors involved, including your own 'gut' feelings, which I believe can be termed 'intuition'.

I can't offer firm evidence but I believe that CyberKnife and GammaKnife offer success rates in the high 90% range.  Surgery is a bit more dependent on the skill of the doctor but most of the 3 most common surgical approaches also have high success rates.  Frankly, all the statistics in the world don't mean much if the treatment/surgery doesn't come out well.    However, it's all we have and I know that you'll be doing a lot of research in the weeks to come.  If we can help, just ask. 

Jim

   

[sgerrard]

Hi JoyDiane,

Glad you found us! 

Dr. Kondziolka at the symposium pegged the control rate for GK at 98% (slightly lower than surgery). Although CK is a different machine than GK, it is still the same principle of focused radiation, just a different design for the equipment. Having found this forum, you may also want to investigate the Cyberknife forum:
http://www.cyberknife.com/Forum.aspx

Both surgery and radiation have their risks, but fortunately the risk of serious consequences is low for both of them. When treating an AN, we have to accept the low percentage risks, and focus our attention on the most probable outcomes.

On the bright side, if you are choosing between CK at Stanford, or surgery at Stanford or House, you are choosing between the best options out there, and have every reason to be optimistic about having a good outcome. Has anyone mentioned having middle fossa surgery in the interest of preserving hearing?

Take your time, there is no rush to decide.

Steve