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

[JWW]

Who did your surgery at Methodist ramirezjrj?

JW

[FLsunshine]

Going on my 7th year of W&W.  Its not without pitfalls though.... having to deal with daily symptoms that drive me batty and make me feel sick (mostly fatigue, headaches, and wonkeyhead).  But for me, being the major bread winner in my family, treatment and all its possible short- and long-term issues are risks that I need to put off as long as possible. So I put up with the symptoms and try to keep a good attitude of faith.  This little bugger in my head is sort of a gift... reminding me daily to not take my life, my health, or my relationsips for granted.  No one on the outside knows that I deal with this everyday; helps me to remember that everyone has something within them (physically or emotionally) that weighs on them so I'm a better person and a better leader in my organization for realizing this.     

Whether its treatment or W&W... its all a very personal decision and no two people are alike.  I just smile when I read other posts of W&W periods longer than me as it gives me continued hope.

Good luck with your own decision.

[ramirezjrj]

Dr Verbec and Dr Trask did the surgery.   I understand your decision.  I am the only income in my household as well.   I work for Methodist and they provide STD  and that was part of my decision to move forward.   

Good luck  and hang in there

[arizonajack]

The tumor started out around 2cm and my last MRI was in Dec of 2012 and it had increased in size to 5cm. 

5cm?

Is that right?

That's bigger than a golf ball (4.7cm).

Or is 5cm the volume, not the dimensions?

[JWW]

ramirezjrj: Did you ever consider Radiation therapy with Dr. Teh (a radiation oncologist at Methodist) when your AN was 2 cm? Just curious. Did you ever consider Radiation therapy at all?

JW

[ramirezjrj]

I actually did,  I  consulted with two  different teams one at MD Anderson and the other team where I work (Methodist)  both were in agreement that because of my age and the size of the tumor that radiation would cause more damage in the long run then good.  Treatment outcomes for the AN only goes back maybe 20 yrs. Both teams felt that there would be a good change for regrowth and it would further complicate surgical removal because of the collateral damage that radiation causes.  At that time my only issues was SSD in my left ear so I figured I would just keep watching and waiting. 

When the tumor was first discovered it was 1.4 x 0.9x .08 cm back in 2011.   In Dec of 2012  it had increase to 2.0 x 1.3 x 1.2 cm. and I was starting to have balance issues.  So given my age (48)  and good health status I figured  I need to get this out now cause I know I was not going to get younger.   
 

[JWW]

I used Dr. Ben Teh and Dr. Robert A. Williamson (Vrabeck's partner) for SRS on my AN (10mm x 7mm) on 7/31/2012. Doing well except I developed tinnitus. Still have excellent hearing.

I would ask your doctor about staying on Valtrex a little longer, maybe reducing the dosage.

JW

[sharonov]

I've been in W & W mode since 2003.  At first, my doc (who specializes in GK) advised against doing anything, as I would lose at least 15% of my remaining hearing.  My AN has only grown from 1.4x1.3x1.1 to 1.6 in one measurement, which I consider minuscule, but my hearing in the affected ear has deteriorated until there is very little speech discrimination.  I could hear on the phone if I HAD to, but that's all.  However, my great love is the symphony and yes I can still hear concerts in that ear so I absolutely want to preserve what I have left.  Plus my balance is OK as is my facial nerve.

So, I choose to remain W & W.  Four years ago I attended the seminar in Chicago and asked the panel of doctors if they had any patients who lived with the tumor until they died All said that yes, it's possible to go your whole life with it in your ear and then die of totally unrelated causes.  That encouraged my W & W status, and most of the time I forget that it's even there.  Now and then I get a full feeling, but from what I've heard, that is nothing to what I may encounter if I have treatment.  I  have trigeminal neuralgia, which can be caused by an AN, though several doctors have said that in my case it's unlikely.  Who knows?  And would surgery of any kind just make it worse?  Who knows.  But I'm 70 now, and just don't want to mess with it.

[mesafinn]

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.

This is one thing I'm struggling with in my process.  I've had at least three doctors tell me to watch and wait and have another MRI in six months, post diagnosis.  On one hand, there's some logic to this.  But at 1.5 cm, clearly the tumor has grown.   So when I read "growth in the first 12 months is a good predictor of future growth," I don't understand how that is.  Virtually each doctor has said I've likely had the tumor for 8-15 years, so it's obviously grown--which suggests it will keep growing. no?   I had an MRI that "caught" the tumor because I was symptomatic, but I would think one would need multiple MRIs (not just two) to predict growth.

I'm happy to be "W & W" but can't get my brain around the realities of it.  Some here have given me pause, but I'm inclined to be more proactive.

Then again, I've also been told that the symptoms I have now (partial hearing loss, occasional balance issues) will continue post-treatment (GK or surgery), so why not watch and wait?!

[skipg]

The first 6mos I had no growth and every Dr suggested WW as a viable alternative and wait a year for the next MRI. At the end of the next full year just before the MRI, started to get increased symptoms. MRI showed I was the unlucky one whose AN had doubled from the year before. Proton therapy in Oct, Nov 2012 and last MRI showed no growth and a dying tumor. To go back in history I would have gotten treatment asap when it was small. But , who new. 

[mesafinn]

Skip:  I've followed your treatment and read about your proton therapy.  I don't think I'm sold on the distinction between proton and photon enough to pursue, but I'm intrigued.  And I thank you for how you have educated me on this site!   P.

[skipg]

I should have posted also that as a result of WW I lost the hearing in my AN ear. It seems there are new studies that indicate people with small tumors, as mine was, are better served by immediate treatment with G Knife with a resulting hearing preservation. So many different treatment options, tumor sizes, Drs opinions, and insurance nightmares. But life is good and I did not lose my balance, very thankful for that. If only I could pluck out the tinnitus 

[jsanders1379]

Thanks for your post Skip-can you refer me to the "new studies" that you mention? I would like to read them as I'm in that struggling, "am I doing the right thing by "W&W" mode...thanks, Jeanne

[mesafinn]

It would be interesting to see these studies as I'm wavering between W & W and GK.   I have the GK scheduled but am "on pause" while I further consider waiting...

[annamaria]

Use actual data in decision-making ...

Annamaria

= = = = = = =





Neurosurg Focus. 2012 Sep;33(3):E8. doi: 10.3171/2012.6.FOCUS12192.

The newly diagnosed vestibular schwannoma: radiosurgery, resection, or observation?

Kondziolka D, Mousavi SH, Kano H, Flickinger JC, Lunsford LD.


Source

The Center for Image Guided Neurosurgery, UPMC, Pittsburgh, Pennsylvania, USA. kondziolkads@upmc.edu


Abstract


OBJECT:

Management recommendations for patients with smaller-volume or newly diagnosed vestibular schwannomas (< 4 cm(3)) need to be based on an understanding of the anticipated natural history of the tumor and the side effects it produces. The natural history can then be compared with the risks and benefits of therapeutic intervention using a minimally invasive strategy such as stereotactic radiosurgery (SRS).

METHODS:

The authors reviewed the emerging literature stemming from recent recommendations to "wait and scan" (observation) and compared this strategy with published outcomes after early intervention using SRS or results from matched cohort studies of resection and SRS.

RESULTS:

Various retrospective studies indicate that vestibular schwannomas grow at a rate of 0-3.9 mm per year and double in volume between 1.65 and 4.4 years. Stereotactic radiosurgery arrests growth in up to 98% of patients when studied at intervals of 10-15 years. Most patients who select "wait and scan" note gradually decreasing hearing function leading to the loss of useful hearing by 5 years. In contrast, current studies indicate that 3-5 years after Gamma Knife surgery, 61%-80% of patients maintain useful hearing (speech discrimination score > 50%, pure tone average < 50).

CONCLUSIONS:

Based on published data on both volume and hearing preservation for both strategies, the authors devised a management recommendation for patients with small vestibular schwannomas. When resection is not chosen by the patient, the authors believe that early SRS intervention, in contrast to observation, results in long-term tumor control and improved rates of hearing preservation.