40% stop growing??

[Greg M]

I keep hearing this percentage, 40% of AN's stop growing once they hit the 2cm mark.. If symtoms are managable, why wouldn't you wait to have treatment untill after the 2cm mark?? That's a pretty big percentage, to have a treatment before then doesn't make sense to me unless the symptoms are getting worse. What's the cut off for size if I was going to get radiosurgery?? I do know the smaller the tumor, the better chance for control or removel. I just know either treatment is going to hurt me in some way and if I wait till the 2cm mark, then I will know for sure I need treatment. I don't know.... Any thoughts on this?? Thanks Greg

[Syl]

Greg:

Making a decision for treatment was the most difficult part for me.

I had retrosig surgery in June 2008 to remove my 1.5 cm. AN. It was a year before that when I had sudden hearing loss. One dr said, the AN doesn't have to grow to cause dammage--inflammation alone can do damage. My dizziness and balance issues I'm sure were present long before that, but it wasn't until the hearing loss that I paid attention to them.

I was a candidate for watch and wait. Sure, it was very possible that the tumor would not grow anymore. But, for me the best choice was to get it out before it could caused more damage. And, if it did grow, the challenge of removal would be greater for the surgeons. We know that often surgery causes additional nerve damage. Whatever nerve damage my surgery could cause, it would only be greater if the tumor did grow. So I had to get it out.

What size is your AN?

No one can decide your treatment better than you. If watch and wait is what you feel is best for you, then we're here to support that decision. Good luck in reaching a decision.

Syl

[Jim Scott]

Hi, Greg:

I don't know where you've obtained the interesting information that 40% of ANs stop growing once they reach two centimeters.  I can't argue against that statistic because I cannot verify it.  If it were found to be accurate, it might seem logical to wait until such time as the AN grew past 2 cm to address it.  However, that supposes the AN is very closely monitored with, at a bare minimum, semi-annual, gadolinium-enhanced MRI scans.  It also assumes the tumor doesn't have a growth 'spurt', which also occurs in some AN patients and, as you stated, we're assuming that symptoms are 'manageable', which is an ambiguous assumption based on very subjective criteria.   One person's 'manageable' is another person's 'intolerable'.  These caveats make the '40% stop growing' supposition somewhat problematic and not something I would want to stake my well-being on.   

The feasibility of irradiation treatment (in place of microsurgery) is factored on the basis of the tumor's size and location.  Assuming the location does not preclude radiation, the generally accepted maximum size that can be considered for radiation treatment is 3 cm.  That is not an absolute number because every AN patient has a slightly different situation regarding tumor placement.  In short, 'your mileage may vary'.  These are my thoughts on the issue you raised (and asked for our comments).  Do with them what you will, as they are simply an opinion...and I'm not a doctor.

Jim

[sgerrard]

There is a figure of 45% not growing to be found in the Wikipedia entry for Acoustic Neuroma. However, it should be noted that this is the percent of tumors that are initially managed by watch and wait that do not grow. It also appears to be related to older patients, and mentions a 3 to 5 year observation period. It is not a percentage that applies to all acoustic neuromas, which makes sense, since about 75% of them are treated, and treated neuromas can't be counted in such a percentage.

If your AN is not too big, and is presenting mild and acceptable symptoms, and does not seem to be getting worse, then watch and wait makes sense. Once you establish that it is not growing, say 6 or 12 months later, then you could expect to have a 40% chance of never needing treatment (if that percentage is correct). But I don't think such a percentage applies to all ANs up front, when deciding whether watch and wait is a reasonable choice in the first place.

If your symptoms are manageable, and you aren't concerned that waiting might risk losing hearing or other damage, then waiting to see to see if it gets bigger is a reasonable thing to do. There is a trade off, because the general rule is that outcomes are better the smaller the AN at time of treatment.

Steve

[EJTampa]

Hi Greg,
 
I'm also curious as to what size your tumor is.  I'm also curious as to what symptoms you currently have, how bad they are, and how quickly they came on.
 
My Surgery is scheduled for March 5th.  My Physician talked about the 3 options I had available to me, and recommended surgery and watch and wait.  I have to admit, the W/W sounded good at the time, but what he said to me made a lot of sense too.  Based on the location of my tumor (back against the brain stem) he said I have a better than even chance of saving useful hearing.  The word useful was important to me, because some people retain some hearing, but not much word recognition.  Anyway, I digress.
 
I heard a statistic somewhere that a large percentage (was it 40 or 60 percent?  Darned memory ) of people who have had autopsy's performed are found to have some stage of an AN.  That's much larger than the 1 in 100,000 that are diagnosed while living.  So I would have to say W/W is a viable option for those that have a tumor that 1)  Is difficult to remove/radiate due to location, and 2)  Has already resulted in hearing loss or other problems, so there's not much risk of losing more without significant growth.  I guess and 3)  You are at such an age where the risks outweigh the benefit.
 
Talk to your physician, or better yet, talk with several.  That's one piece of advice that everyone here will always agree with, talk to more than one Doc.  Find a doctor you are comfortable with, and listen to his/her recommendations.  My physician told me, that if he were recommending a treatment of one of his family members with a tumor such as mine, he would recommend removal with retrosigmoid.  You know what, that was good enough for me!
 
Also you can count on lots of great opinions and help from fellow ANers who have already gone through 1 or more of the 3 treatment options.  They are all here to help you through your journey!
 
Ernie

[Greg M]

Thanks for the responses so far. I'm 32 years of age and my AN is 1.3cm, with high frequencies hearing loss, and mild tinnitus. I have 85% word regination. I first noticed the hearing loss one year from my first and only MRI. I have noticed that I cannot spin around like I used to (I get dizzier quicker) and swinging on a swing feels like I'm on a roller coaster. When i found out about my AN in the beginning of January I started noticing more of my symptoms, weird... I will soon be talking with surgeons and radiologist and folks who do both. I am not sure what they are going to say. I'm very interested to find out more about my case,(where the tumor exactly is sitting, and what options are on the table). Either way I'll be on a table of some sort! I think I will have a three month and a 6 month MRI to see if there is growth. Then decide on what I need to do. The most important thing to me is that I am already feeling symptoms, even though they are mild I do not want them to get worse. I want to keep what I have!! I will know more when I talk to the pros's. I'm hoping the radiosurgery option is on the table. I just don't feel like brain surgery is for me. I will definitely let you all know any updates. Thanks for taking the time. Greg

[salamander]

I guess I was in the 60% group, because mine wasn't found until it was 2.7 cm.  I would love to know how long it had been growing to know the pattern (steady or spurts).  However, I agree with the comments that it depends on your symptoms and the location.  The darn thing lurking in  my head was ideally positioned to allow stelth growth with minimal symptoms!  When they finally hit, my symptoms couldn't be ignored because I had facial numbness and hearing loss.  Although with my resulting paralysis maybe that didn't exactly prevent further damage.   

Samantha

[leapyrtwins]

I keep hearing this percentage, 40% of AN's stop growing once they hit the 2cm mark.

Greg -

This does not make logical sense to me.  There are so many of us on the forum who have or had ANs larger than 2 cm and we seem to have a pretty decent size population of AN patients.

I think the threshold for radiation typically ends at 2.5 or 3.0 cms - depending on the doc.

Because of your hearing level, I'd ask the docs you consult with if mid-fossa might be a possibility for you.  If you do decide on surgery, mid-fossa would give you the best chance of keeping the hearing you currently have; but location of the AN is usually a deciding factor on whether or not you are a candidate for mid-fossa.

Obviously with an AN of 1.3 cm radiation would be an option for you.

Jan