Watch and Wait > For those in the 'watch and wait' status

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

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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.

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