Does anyone have a positive experience with "watch & wait"?

[jsanders1379]

I have read many posts from people regretting that they "watched & waited" (tumor grew, symptoms increased, etc.) I am 65 with excessive prior radiation & struggling with whether to go ahead with GK. Has anyone had 5+ years of uneventful "watching & waiting"?

[Derek]

Hi Jeanne...

From a personal perspective I am fast approaching my 69th birthday and 11 years in W & W having been diagnosed in 2002 with a 2.5cm AN which was touching my brainstem and was advised by a neuro surgeon to have 'early' radiation or surgical excision.

Fortunately for me I decided to carry out my own in-depth research and decided to opt for W & W. During the ensuing years maintaining a rigid healthy diet and lifestyle, which is well documented in the 'sticky' thread 'Top Tips For the Wait & Watch Brigade' within the Watch and Wait forum, my AN has self-reduced to 1.3cm, my tinnitus has abated and I have no symptoms other than single sided hearing loss which is not a problem for me.

My advice to you, having regard to your age, the size of your AN and your medical history, would be to carry on with W & W for as long as is possible notwithstanding that you have regular MRI scans and you have the full approval of a neuro consultant in whom you have total trust. Remember that even if you opted now for treatment you will still need to have regular scans just as in W & W so unless there is a particular medical reason of which I am unaware, I would not be minded to take seemingly unnecessary risks via medical intervention at this stage.

Best of luck with whatever decision you ultimately decide upon.

Kind Regards

Derek

[jsanders1379]

Thanks, Derek- sounds very reasonable...

[arizonajack]

I have read many posts from people regretting that they "watched & waited" (tumor grew, symptoms increased, etc.) I am 65 with excessive prior radiation & struggling with whether to go ahead with GK. Has anyone had 5+ years of uneventful "watching & waiting"?

I looked through all your previous posts and you haven't mentioned the status of your hearing on the AN side.

I think that would be an important factor in anybody's decision.

My hearing was pretty much gone on the AN side when I was diagnosed in Apr 2012 with a 9mm tumor and was completely gone by Oct 2012 when it had grown to 11mm, a growth of 20% in 6 months.

If you still have good hearing on the AN side you might keep that in mind.

If the hearing is already gone, it isn't likely to make any difference if you wait another couple of months till your next MRI to see if it has grown any.

[Mickey]

I`m a 64+W+W person for close to 6 years now diognosed (1cm.) I have pretty good hearing, feeling good also, only with bearable tinnitus as my main symptom. I would go to the W+W brigade posts started by Derek if you would like an in depth look on how we handle things. Derek was inspirational in my quest on finding way to deal with my AN. So far so good if not better... Best wishes, Mickey

[PaulW]

There are some pretty good statistics supporting W&W as a strategy.
Facial Nerve Preservation near 100%, Death rates near 0%
However hearing loss is a common side effect of being in W&W as well as increasing balance issues.
With that said sometimes the hearing and balance nerve are both destroyed already, so your symptoms wont get worse.

For me W&W would have driven me batty... Everyday my hearing was getting slightly worse, the head was feeling stuffier, and more like a bobble head doll. I certainly felt like I had to do something..

My doctor recommended W&W and I chose to treat proactively.   I am pleased that I did.
Mentally getting it treated now was empowering, I was in charge of the tumour, and not the other way round.
Every symptom I had after treatment was a symptom on the road to recovery, versus another symptom towards deafness and a possible operation or more uncertainty as to what an AN could bring.

There is a lot of good medical literature and the advantages of W&W. While it takes into account the possible physical effects of W&W it does not address the mental effect of being in W&W. While statistically its a good strategy, its not for everyone

[Derek]

[quote author=PaulW...etc
...There is a lot of good medical literature and the advantages of W&W. While it takes into account the possible physical effects of W&W it does not address the mental effect of being in W&W. While statistically its a good strategy, its not for everyone
[/quote]

Just a point with regard to the perceived 'mental effect' often wrongly attributed to W & W. Throughout my 11 years in the W & W mode I can honestly say that I have never had any mental health problems relevant to W & W. Indeed the very fact that I made my treatment option of adopting the W & W procedure based upon carefully considered options following much research actually had the effect of eliminating any hitherto stress particularly so with regard to the fact that I have not subjected myself to unnecessary invasive radiation or surgical procedures which are not risk free. There are no guarantees that radiation or surgical intervention will halt the growth or regrowth of the AN or prevent eventual deterioration of hearing ability.

For what it is worth my philosophy on this subject is relatively simplistic. If in the first instance you can eliminate the 'mental effect' label mistakenly attached to W & W then if you have no escalation of symptoms, undertake regular MRI scans and follow the advice of your trusted consultant, W & W must be the way to go!

I again emphasise that irrespective of whether you choose radiation, surgical intervention or W & W the aspect of any such 'mental effect' is largely the same as we still have to undertake regular MRI scans for growth or regrowth.

Regards

Derek
   

[robinb]

I agree w/PaulQ.

I considered W&W for a couple of days, then I agreed w/docs who asked me what I was watching and waiting for.

[Mickey]

When diognosed around six years ago more than half the Drs wanted to operate or radiate. I was told at the minimum my hearing would most likely be lost. There was nothing postive said, like less tinnitus, no facial problems, no wonky head, etc.  I couldn`t understand why not at the minimum give W+W a chance... I not only gave it a chance but became very pro active on whatever I could do to feel better. (alot of tips in W+W brigade). Well anyhow it`s six years later and I`m actually feeing pretty good, if not a little better... We got to remember I`m pushing 65, normal aging process. All in all I wish whatever my fellow AN decide to do works for them. Best wishes, Mickey

[Sheryl]

Hi - haven't been checking out the posts recently but this one grabbed my attention.  I may be the "senior" W&Wer having found my 9th cranial nerve schwannoma in November of 2001, when I was 55, although there was a report at one point of someone up to 20 years.  My brain stem tumor is much like an AN but on a different nerve.  I guess mentally I am okay with it as most days I don't even think about it.  Size has slightly changed in 11 years starting at 9 mm (although other opinions state it started out a bit larger) and now at 14 mm.  Symptoms for the 9th cranial nerve would be hoarseness, decreased gag reflex, and trouble swallowing - none of which I have.  I follow through religiously with my doctor and yearly MRI's.   

Good luck with whatever decision you make.
Sheryl
P.S. To Derek - glad to see you're still trying to catch me!!!

[MDemisay]

Jsanders,

I am 55. I had an operation in 2004. I had a CT scan in 2011. My doc told me that my watching and waiting was over and I had to do something "radiation", I waited until June 11, 2012. I guess you could say my last day of watch and wait was June 10.

Mike

[Jackie]

I can relate to you in your dilemna of whether to watch and wait or get treatment. We are the same age, I was diagnosed 6 years ago and at time of diagnosis had lost 60% hearing, had Tinnitis and that fullness feeling. After much research of options I took the same attitude as Derek. I have learned to live with my situation and have yearly MRI's. There is always ,so far, great relief that everything remains stable. I believe over time you get used to W and W. Age is on your side, however size, and location do play an important part in the decision making process!
Listen to your "heart", weigh the doctors advice and do what's best for you!
Jackie in Oregon

[jsanders1379]

Thanks, Jackie-so far I have about an equal number saying "watch & wait" and saying go ahead with treatment...but all say everyone is different, weigh your options and try to make an informed decision....Jeanne

[PaulW]

One of the challenges with AN's is that there is no clear best way to manage them.
I know in our support group there are people that have been on W&W for many many years with slightly diminished hearing, and occassional balance problems and thats it.. Their symptoms are mostly stable. Staying in W&W may be their best option. Others hate that they were on W&W and that they lost their hearing, or that it became much bigger and more difficult to treat.
They felt a little robbed that they didn't treat it more proactively.

Nobody knows what joys our AN's will bring in the future. Proactive treatment may actually leave you worse off than if you are one of the lucky ones on W&W. However treatment will give you some level of certainty moving forward.

The reason W&W is often used for the first 6-12 months helps determine the probability of W&W being successful in the longer term.
Growth in the first 12 months is a good predictor of future growth, and therefor treatment.

There are people out there that have been in Watch and Wait for 10+ years and I believe many will never need intervention

[ramirezjrj]

I was in the watch and wait mode for two years.  I had SSD in my left ear and the risk of the surgery out weighed the benefits.   I was not going to regain my hearing and I was not have any other issues.   I am 48yrs old and in pretty good shape.   I am a RN with 25 yrs clinical exp.  My surgery was 01/23/2013.  The tumor started out around 2cm and my last MRI was in Dec of 2012 and it had increased in size to 5cm.  I whish I would have followed my gut feeling and continued to watch and wait.  You can only do what is best for you depending on your current health status and age.  Just keep in mind that is a major surgery.  My complications have been minimal but I would have been better off to have left it alone. 

Best wishes.