If you survive 4 Years of W&W are you home free?

[Freelander]

I may have stated elsewhere that I have been W&W for nearly 3 full years, yet with some growth each year.   My  AN doc is Dr. McKenna at MEEI.  I poached this article from ANSydney (thank you for posting!) and everyone on W&W needs to read it: http://acusticusneurinom.dk/wp-content/uploads/2015/10/natural-history-of-vs.pdf   

Has anyone been on W&W for 4+ years and then found that their tumor started growing?   

Does anyone know if similar studies or trials have been done on this topic?

Your feedback is appreciated.

[bethtretrault]

I think the answer is no. It may grow and it may not. At any time. It may shrink and it may not. At any time. I am sure there are percentage chances you can cite but there is no 100% chance of any outcome. I think you have to be guided by your symptoms, size and location of the AN, and your tolerance for just knowing it is there. Good luck whatever you decide.

[Echo]

You ask the question "If you survive 4 years of W&W are you home free?" You can only enter the W&W phase once you have been diagnosed, and since these AN's are suppose to be slow growing, how can you truly know how long you've had the AN in your head?  Your AN may have been growing, not growing and then growing again for many years.  Had it been found several years ago, you may already be well past the 4 year time period...am I making sense?   AN's can grow for years and exhibit absolutely no symptoms or they can present with many symptoms while still at a very small size.  I don't think there is a clear answer to your question, but I personally agree completely with what bethtretrault has posted. 

Cathie

 

[mac84]

As one on the W/W with no growth for 4 years myself I'm tempted to think the same thing.  I was given the option last year of having the MRI every 2 years now but decided that if insurance would approve it that I'd go ahead and take a look each year. If there's no growth in April of this year I "MIGHT" go to 2 year intervals. I just fear that because I don't know how long it's been in there that the moment I decide to go to 2 years that it enters a growth spurt and then makes it too big to do the GK I've always planned on having if the time came to do 'something'

[Citiview]

I was told at the beginning that there was a 33percent chance of growth in a five year period.
I was also told that there was a fifty percent chance of SOME hearing loss in that same five year period.
I have notes taken from the original consult.

If there happens to be no growth in those five years there is a good chance of it not growing in the future. I cannot remember that specific stat however as it was not written down.

Freelander
For people like yourself, having a small tumor at an older age, and the fact that it is slow growing may be a better scenario than if you were younger. It may never become life threatening.

I don't think there is ever a promise of anyone being home free.

[ANSydney]

Citiview, I concur with the figures. With regards to growth following the fourth year, this paper has it as "very rare" https://www.bhtinformatie.nl/pdf/ingrijpen.pdf

[Citiview]

I think the most prudent thing for anyone to do is just monitor the progress of their own tumor and see what actually happens, then make decisions based on that.

It's good to support people in watch and wait, but also good to support people in their decision to treat with either surgery or radiation --- whatever they want.

[ANSydney]

I think the most prudent thing for anyone to do is just monitor the progress of their own tumor and see what actually happens, then make decisions based on that.

Cityview, I think that's the best sentence I've read on the forum.

[Carolgre]

Although I have a CPA meningioma, not an acoustic neuroma, I went four years in wait and watch (and even skipped an MRI one year because I was so sure that nothing had changed). Well, the MRI after that showed that the little bugger was starting to grow slightly, but definitely getting bigger. I went for a consultation with a new neurosurgeon who recommended radiation treatment while it was still safe to do so. She said I could wait but that if the tumor became much bigger, the radiation option would no longer be available to me. In answer to your question, being on watch and watch for four years does not mean that your tumor will not start growing at any time.

[JLR]

I agree with Carol.  I was on WW for many years.  After 10 years it grew. Had CK which I though was successful. After an additional 6 years I had surgery. My facial nerve apparently compromised and I have been faced with eye problems and facial paralysis.  I should have had the surgery instead of the CK. Coulda woulda shoulda. Yes it does not stop growing after 5 years.

[midee]

Hi everyone, I was on w&w for almost 5 years. I was told because of my age (67 now) that the chances of my tumor growing was very small. I went 18 months between my last 2 MRI. My tumor was 8mm. My last MRI in Oct. of 2017 showed a doubling of size to 2CM. It was now right next to the brain stem, so something had to  be done. I was given either option, surgery or radiation. I saw both surgeons and opted for surgery. I did not want the chance of it growing again, and then surgery at an even older age. I just had retrosigmoid 3 weeks ago. My surgeons were excellent. I am doing wonderful. I just got my stitches out today. Felt great after surgery, only needing Tylenol for minimal pain. My hearing was already 100% gone. I still have the tinnitus. Because I was in W&W for so long, my brain had already compensated for the balance issues and dizziness. I also have been doing exercise classes and Zumba for many years. I believe this has really helped me with my quick recovery.

[JLR]

Wow congrats on a successful recovery. Was the entire tumor removed. 95% of mine removed. Surgeons left 5 % which was on facial nerve and it is causing all sorts of problems. May I ask name and location of surgeon. Thanks and congrats! Joan

[midee]

Hi, yes, both surgeons said 100% of the tumor was removed. My surgeons were Dr. Megerian and Dr. Bambakidis at University Hospital in Cleveland, Ohio. He did say that there can always be a few cells left that they cant see. He also told me he has never had one patient come back with a tumor regrowth. I am now 4 weeks post surgery and still doing fine.

[JLR]

That's great!! Keep up the good work!!