Radiation or Surgery?

[jwick]

I have a 5 mm right AN deep in the canal.  The radiation/oncologist is recommending Novalis FSR, the neurosurgeon recommends the retro/sub-occipital surgery, and otologist says I would not be wrong with either choice.  I have no hearing loss, but have had minor episodic balance issues.  I am leaning towards the surgery.  It is great to have someplace like this to find information and advice.  Jeff

[leapyrtwins]

Jeff -

with an AN your size, radiation and surgery are definitely both available options.  However, your treatment decision should be your personal choice.  What is right for one, is not right for all.  For example, I chose surgery and it was the best choice for me; others chose radiation and it was the best choice for them.

You need to research both options, weigh the pros and cons, and then make your decision.  The ANA has some wonderful informational literature that can help you make your decision.  If you haven't already, you should contact them and request it.

Good luck,

Jan

[Desilu]

Hi Jeff,

Because your tumor is so small, and you still have your hearing, why didn't the doctor suggest Middle Fossa surgery? They usually use this approach if they are trying to save the patients hearing. Just wondering?  Ann

[another NY postie]

Hi!  I too was just diagnosed (3 weeks ago today) with a 5mm, right side, deep in canal.  Sounds eerily similiar!

I have so far seen three people; 2 neurotologist and 1 neurosurgeon. They all have presented all three options (radiation, surgery, wait) and two of them do both surgery and radiation.  That is the beauty and confusion about having a small AN - lots of options - lots of choices - lots of outcomes to weigh and it can be so overwhelming.

One recommended watch and wait (neurosurgeon) but if I chose surgery - retro.  The other two recommended watch or retro (said I had good reason for either and wouldn't commit to any recommendation).  No one seems to think I am a good candidate for radiation.  (age,etc) and I realize that this is all such a personal decision (ie gamble) and for me, radiation is not my choice so at least I can eliminate that one.

It seems that retro is favored on the East coast.   I am just outside of NYC so my dr. have been in the city. 
I sent my films to House and I have heard West Coast favors Middle.

I also read this:
The middle fossa approach is used for tumors typically less than 2 cm in greatest dimension, where hearing conservation is to be attempted. This approach has the advantage over the retrosigmoid approach in its direct access to the lateral end of the internal auditory canal. Multiple reports have shown that the retrosigmoid approach cannot reach the lateral end of the internal auditory canal without violating the posterior semicircular canal, and hence destroying the hearing.

I think that the position, how deep in the canal, affects our outcome of preservation of hearing.  I am a bit concerned at this point that perhaps it will be very difficult to preserve it through retro because it is deep in canal.  I have another appt on Wed and also House should be calling me so I will ask them specifically about position and access to tumor and let you know.

If you are considering radiology, I would also ask them that vis-a-vis the location. Ours are small but very near all the other nerves so radiology may pose risks to hearing and facial nerve also since they are all there.

Good luck!
Cheryl

[nteeman]

Jeff,

Like Jan said, this is a decision you have to make for yourself. I would recommend asking these doctors as many questions as you can think of before you make up your mind. Consider that while you are a good candidate for radiation therapy, the tumor remains in your head and though it doesn't happen often, years after treatment it may begin to grow again. Surgery removes the tumor and usually once it is out, its out, they rarely ever grow back. Surgery does include other risks and recovery can have many bumps in the road like facial paralysis, hearing loss as well as others.

You reall need to get all the facts as they apply to your tumor, and talk to as many doctors as you can.  When I was reserching my treatment options I conferred with all the doctors I know. Even doctors that do not treat ANs like my Internist, my GP and even my Chiropractor. Get as many opinions as you can and make sure you choose a treatment with a doctor you feel good about.

Good luck.
Neal

[ppearl214]

Hi Jeff and welcome... good to have you here.

Although mine was slightly larger than your AN at time of the diagnosis (mine was 7mm x 5mm at time of diagnosis),  I had to sit back and evaluate all AN treatment options. At first, my docs told me to watch and wait to see if there was any growth as I was not experiencing any symptoms of my AN (a bit of tinnitus but that was about it). I had most of my hearing (at the time of diagnosis, my word recognition was over 90%, etc).  We waited 6 mos and did another MRI... and mine did grow.  So, I researched all routes, from surgical removal to radiation.  For me, my ultimate goal was to save my hearing since I had most of it.  I checked with local surgeons and those across the country. Living in Boston, I had all forms of AN treatment options there for me.  Bottom line was this... since mine was deemed "small", I could do any of the choices.  I inquired about surgical vs radiation since it was so small but for me, I wanted to save my hearing.  I found the forums here (over 4 yrs ago) and began my research... of those that had surgery and had radiation.  Some attitudes here were "I want this thing out of my head"... there were attitudes of "I don't want to endure surgery and the potential after affects that could occur".  As many here have noted, it truly is a personal decision.

I had radiation (Cyberknife radiosurgery) over 3 yrs ago, in a "fractionated" approach (done over 5 days) with the goal of saving my hearing.  I was blessed that this has occurred as I still have over 90% of my hearing and knock on wood each day that I was able to make the best choice possible for me at the time.

Take your time to do your research as it sounds like your's is definately not an emergent situation.  Maybe do the W/W and see how the next MRI goes to see if there is any growth (please keep in mind that head MRI's have a total margin of error of +/-2mm, so if today, it is 5mm but the next shows as 6mm, that is within the margin of error so it would be deemed as no enhanced growth).  Maybe take the time of W/W to do further research and ask and research from docs/treatment teams to inquiring here from all those that have had treatments done.

Your gut will help guide you as you do your research... but know we are all here to help answer questions and share experiences......

Here's sending you wellness wishes... and again, welcome.
Phyl

[CHD63]

Hi Jeff ....

Just want to add my welcome to our unique group!  As the others have said, with your size tumor you have many options.  I would have to agree with Neal to talk with any and all medical professional acquaintances you can, especially the ones you know and trust their opinions.  After you have done your research, then listen to your inner self ...... this is a very personal decision.

In my case, my AN was over 2 cm when diagnosed and unfortunately one of the unusually fast growing types, therefore I did not have the options you have.  After much research, I chose retrosigmoid approach surgical removal.  I have absolutely no regrets in making this choice ..... sure, I'm not the same as I was before but I retained 20% of my hearing and no facial issues (which was a big fear for me pre-surgery) and I can do everything I did before.

Please ask any and all quesions (none are too small or insignificant!), not only here on this Forum, but everywhere you seek information.

Keep us posted on how things are going ..... we get attached to each other.   

Clarice

[Jim Scott]

Hello and welcome, Jeff ~

All the good responses have already been offered so I'll just echo them by reminding you that whatever path you choose to take you'll have to live with the consequences so don't be bullied or intimidated by doctors claiming you 'should' choose a specific treatment.  I have to reiterate that there is no guarantee of outcome with any procedure, whether it's one of the surgical or radiation approaches.  Most have good statistics for positive outcomes but with every option, there will always be a certain level of inherent risk that cannot be avoided and so, has to be taken into account. This is why we emphatically remind all newly diagnosed AN patients seeking advice that this is a decision only you can make.  However, we're here to offer whatever information we can and support you in every way possible.  Consider these forums a resource as you research and eventually come to a decision on treatment.

Jim
 

[jwick]

Hello, Thank you all for the information and advice you have given. 
     I haven't asked the neurosurgeon about the middle fossa approach yet, but I did ask the neurotologist.  He said something about where it was at.  They would have to do alot of maneuvering around of stuff(don't remember exactly what he said).  Definitely a question I need to ask the surgeon.  I am only 33, so I worry a little about the long term effects, if any radiation may pose.  I don't think I have ever had to make such a decision before.  Usually the doctor's say do this and take that and I said ok.  With this they say what do you want to do?  And I am like Uh I don't know??? lol  I think about the watch and wait attitude, but I don't have hearing loss and my wife is due with our second child at the end of October.  So I figure I have maybe a couple of months to do something so that I am able to help her when the baby comes.  Thank you all again.  I will let you know what the neurosurgeon says about middle fossa.    Jeff

[Desilu]

Hi Jeff,

Glad you are researching all of your options. Please keep us posted when you make a decision. I wish you the best. Ann

[eab]

Jeff,

Sorry to hear that you to have an AN, but I'm glad you found this site. I won't repeat what has already been said, but here is my additional 2 cents.  I found it beneficial to talk to a Dr. within each option who believed that their option was the only option.  Their strong opinions supported by their data even the playing ground (rather than only listening to a Dr. who typically does surgery but will occasionally do gamma knife for example).

Good luck in making your decision!
Beth

[Vivian B.]

Hi Jwick,

I am glad you found this forum. Your AN is small and like many others have said you have options. Here in Canada, if you have  options, they would rather use radiation instead of invasive surgery. This is the impression that I got from my surgeon. We have gammaknife treatment only and it seems to be favourable with results. Also, when the AN is small, I was advised that the W & W approach is recommended to monitor growth. I was given the impression that if it's not growing why mess with it. The damage that it has already done prior to being diagnosed is irreversible in any case. Once you have read some of the posts and have done your own research you will feel comortable with your decision as confusing as it may get. Good luck.

Vivian

[suboo73]

Hi Jeff!

Welcome to the Forum (but sorry you had to join this AN club....)

Researching your options, i believe, is important.  Sounds like you have some time, since your tumor is considered small.
As long as you don't have any other symptoms pop-up, you have time to research and then take a break if you want.

I wish you well on your AN 'journey.'  Know that you are not alone.
The hardest part for me is making the decision myself.  But i think i am getting there...
Stay strong and keep posting!

Sincerely,
Sue
 

[jb11258]

Hi, I aM NEW TO THIS SITE BUT FIND MYSELF RESPONDING TO SO MANY. i DID 4 MOS. RESEARCH AND FOUND THE MOST QUALIFIED IN THIS TUMOR- dR. bRACKMAN OF hOUSE eAR cLINIC iN l.a. Send him your MrI for free consult. He is the best and trains many Drs. Dont mind my typing, I am not good with computer, but want to help. He will give you an honest opinion.

[Tumbleweed]

If you are considering radiology, I would also ask them that vis-a-vis the location. Ours are small but very near all the other nerves so radiology may pose risks to hearing and facial nerve also since they are all there.

Actually, both types of treatment -- radiation and surgery -- pose risks to nearby nerves. If a nearby nerve is touched during surgery, it may lose some function -- even if it remains anatomically intact. And while radiation may irritate or damage nearby nerves, both CyberKnife (CK) and GammaKnife (GK) have roughly a 1mm margin of error and are not too likely to cause serious collateral damage to nerves not enveloped by the tumor. The facial nerve is very resilient and unlikely to be affected by radiation treatments. The balance and hearing nerves are more sensitive and easily damaged or irritated. But scraping even a small tumor off the balance nerve during surgery can potentially cause as much or more damage as radiation exposure. Meanwhile, radiation avoids many of the potential complications of surgery, including CSF leakage (somewhat common), chronic headaches (about 10-15% risk with retrosigmoid approach), hydroencephalitis (rare), and cognitive or behavioral changes (also rare, and presumably due to retraction of the cerebellum). My point is that both types of treatment involve risks, and damage to nearby nerves is not a concern only with radiation.

With all due respect to Neal, statistics show that there is roughly equal chances of a tumor growing back with either radiation or surgery, so that shouldn't factor into your decision-making. Also, I wouldn't be overly concerned with the long-term effects of radiation: to my knowledge, none of the early adopters of GK and CK have ever observed malignancy caused by radiation on followup visits by previously treated patients, and the history for GK, in particular, is decades long for many patients now. Dr. Chang has treated over 700 patients and has never observed malignancy at the site of a treated tumor. The odds of malignancy occurring are statistically the same as the risk to the general population for getting cancer.

I think it is far better to focus on immediate risks associated with a given procedure than to become fixated on hypothetical risks decades into the future that nobody has yet confirmed.

Toward that end, ask your doctors what are the risks, in percentage terms, associated with all the types of treatments you are considering. In general, retrosigmoid approach (to surgery) carries a higher risk of chronic headaches and hearing loss compared to middle fossa approach. However, middle fossa approach carries a higher risk of damage to the facial nerve (which must be navigated around when using this above-the-ear entry point) compared to retrosigmoid. Translabyrinthine approach ("translab" for short) carries a 100% certainty of deafness following surgery, as it entails the complete removal of all hearing structures (as well the vestibular nerve).

I think W&W should be strongly considered if you are having little or no symptoms. Dr. Brackmann once told me he has seen some ANs stay the same size for over 20 years. All forms of treatment carry very significant risks. But if you are already losing some function (whether hearing, balance or other), then you should not wait too long before getting treated.

Best wishes,
TW