Watch and wait over need advice

[doglover]

Hi I just found this website recently and I am so happy to have someone to talk to that doesn't look at me with pity on their face and say "everything is going to be just fine" BS. I am 55 yrs. old and 2 years ago my Dr. ordered an MRI because I was getting very forgetful, found out later that I was just overwhelmed with work. But! after the MRI she called me to tell me I had a benign tumor and it was very small and I should just go on with my life and not worry about it. I told her I wanted to see someone at OSU as I live in Columbus, Ohio.  It started at 4mmx6mm 2 years ago, just had a follow up MRI and it is slow growing to 5mmx7mm.  My neurologist wants me to have radiation and wants me to meet with the radiologist oncologist next week.  I'm not sure that is the way I want to go, I have done a lot of research and read that the tumor can become malignant after radiation or surrounding tissue can become malignant.  I currently have no symptoms other then balance once in a while but I'm not sure it's not because I'm always in a hurry and don't pay enough attention and trip alot. I have a hearing test scheduled next week.  I just think if it's not broke then don't fix it.  Am I right or wrong?  I know it's preventative but I'm not ready to loose my hearing with each of the approaches or chance having a droopy face at my son's wedding in January.  Can I wait? Has anyone out there seen a Dr. at OSU? I am so confused and scared.  Help!!!  Please give me some  advice. Thank you!

[Janey]

I believe your tumor size is still considered small.  I was diagnosed a year ago and had my 3rd MRI two weeks ago.  Mine is a bit bigger than yours and my doctor says I can watch and wait another six months. 
I lost significant hearing over the last year, but treatment will not change that.  I would definitely get another
opinion.  From all I've researched, you have pleanty of time to investigate your options.  Good luck to you!

[ANGuy]

Many people attribute too high a degree of accuracy to MRI's regarding size.  A small difference in two MRI's does not necessarily mean growth, it could very well just be differences in the scans or the interpretation of the scans by different Drs.  The way to accurately asses growth, as explained to me, when dealing with small changes between scans, is to take them over a long period of time and then compare the first to the most recent. 

In other words, the one mm  difference you are seeing in the two scans does not definitely mean that it grew.  If you are like me, in that you are in no hurry to get radiated or have your head cut open, I would go another six months and have another MRI.  It is not a hair brained idea to go from MRI to MRI until you have more substantial evidence that it actually grew.

[PaulW]

As AN Guy said the growth could be just differences in the MRI.. However the latest 3T MRI Machines done with fine slices would probably be quite accurate.. 1mm growth in two directions over 2 years is pretty much the norm.. I gather the Tumour is wholly contained within the Internal Auditory Canal.. Just think if it continues at this rate it will become potentially life threatening in 60 Years Time.

Radiation is a great option if you want your tumour treated. I chose to have my tumour treated proactively with Cyberknife because I did not want to have the constant worry about what the tumour was doing, and figured it was the best way to save my hearing. The risk of radiation induced cancers for such a small tumour is very small.

At the end of the day its a personal choice, If you want to stay on watch and wait you can. If you want radiation or surgery you can do that too....

There is a risk that staying on W&W that you will lose your hearing... But there is a risk of hearing loss with all options.

If in doubt speak to more doctors and get more opinions...

There is however a move towards proactive Gamma Knife Treatment, mainly based on this study
http://www.ncbi.nlm.nih.gov/pubmed/21121792

[doglover]

Thanks everyone! I'll let you know what my hearing test shows and how my radiologist visit goes.  So glad this group is here.

[john1455]

doglover,
I think your "if it ain't broke, don't fix it" attitude is flawed because something is already broke and that something is the AN growing in your head. Don't let the absence of symptoms or the presence of only mild symptoms lull you into complacency. Have you read this: http://www.myacoustic.org/ ? It is a must read for anyone with an AN, imho. Too many lay people have such a fatalistic attitude about radiation. Have you ever read all the potential side effects of the medications you are or have taken? Some are so downright frightening that it seems to be better not taking the medication at all. Yes, radiation can potentially do more harm but statistically, the odds are very much in your favor. Why else is radiosurgery still such a viable and effective option? If AN patients were dropping like flies from malignancies caused by CK or GK, wouldn't you think that option would have gone the way of the dinosaur a long time ago? I chose CK because quality of life was extremely important to me, especially at 64 (when it was diagnosed) and no way was I going to suffer the post op effects of microsurgery. I have absolutely no regrets in choosing CK and the experience and expertise at Stanford.

As a retired dentist (after 32 years of private practice) I have had to contend with many patients who were radiation phobic. They refuse dental x-rays because of their fear of radiation. The advantages so outweigh the risks that it was a non issue for the most part. I feel that the same is true with radiosurgery. However, we all must make our own decisions so I hope you will make the right choice for you. Radiation is not the boogey man it used to be. If you read enough posts on this site, I am sure you will see that many who have chosen CK or GK had no regrets.