ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: jsanders1379 on January 31, 2013, 11:48:41 am
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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"?
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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
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Thanks, Derek- sounds very reasonable...
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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.
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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
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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
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[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
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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.
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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
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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!!!
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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
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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
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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
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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
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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.
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Who did your surgery at Methodist ramirezjrj?
JW
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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.
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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
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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?
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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
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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. :)
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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
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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.
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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?!
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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.
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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.
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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
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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
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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...
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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.
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Annamaria -
I lost track. Are you still watch & wait?
Jan
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Here's a link to the full article that Annamarie posted:
http://thejns.org/doi/pdf/10.3171/2012.6.FOCUS12192
Very detailed.
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That is a great reference to help in our understanding and treatment choices. I wonder if they will bring this up at the next symposium. The last one in Cincy is where I gleaned a lot of info towards my eventual WW, but this study was not up yet.
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My ENT gave me this research yesterday. He also indicated that when surgeons were asked which approach they would make, the majority said "Watch and Scan" (source: Clinical Otolarngology, 33, pp. 236-238.
Clin Otolaryngol. 2008 Jun;33(3):255-9. doi: 10.1111/j.1749-4486.2008.01705.x.
Conservative management of vestibular schwannomas: third review of a 10-year prospective study.
Hajioff D, Raut VV, Walsh RM, Bath AP, Bance ML, Guha A, Tator CH, Rutka JA.
Abstract
Seventy-two patients with a unilateral vestibular schwannoma have been treated conservatively for a median of 121 months. They have been followed prospectively by serial clinical examination, MRI scans and audiometry. Twenty-five patients (35%, 95% CI: 24-47) failed conservative management and required active intervention during the study. No factors predictive of tumour growth or failure of conservative management could be identified. Seventy-five per cent of failures occurred in the first half of the 10-year study. The median growth rate for all tumours at 10 years was 1 mm/year (range -0.53-7.84). Cerebellopontine angle tumours grew faster (1.4 mm/year) than intracanalicular tumours (0 mm/year, P < 0.01); 92% had growth rates under 2 mm/year. Hearing deteriorated substantially even in tumours that did not grow, but did so faster in tumours that grew significantly (mean deterioration in pure tone average at 0.5, 1, 2 and 3 kHz was 36 dB; speech discrimination scores deteriorated by 40%). Patients who failed conservative management had clinical outcomes that were not different from those who underwent primary treatment without a period of conservative management.
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Many thanks Patrick for the synopsis to that very interesting research which every W & W stalwart will greatly appreciate, particularly the opening reference that the majority of surgeons would choose W & W as their treatment option and the ultimate paragraph indicating that if W & W (conservative management) was not ultimately successful then the clinical outcomes were no different to those who had opted for intervention without first having embarked upon W & W following initial diagnosis. Very informative and encouraging for those who are in a dilema regarding W & W.
Regards
Derek
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particularly the opening reference that the majority of surgeons would choose W & W as their treatment option
Well, not exactly.
What it said was:
"when surgeons were asked which approach they would make, the majority said "Watch and Scan"
That implies that SOME surgeons were asked and the majority of those surgeons said "Watch and Scan."
That doesn't mean that the majority of ALL surgeons said "Watch and Scan."
Besides, the article on conservative management is from 2008 and reports of one study with 72 patients.
The article from UPMS is from 2012 and compiles the results from about 80 studies of about 6000 patients patients.
Food for thought.
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Actually, theres a survey out there somewhere that was sent to Congress of Neurological Surgeons that had over 600 responses asking two questions about what they would do if they had AN. I believe the result of the scenarios presented indicated most of them would choose radiosurgery over surgical resection or fractionated. Second most response was watch and wait. I have the article somewhere or can find it on the web, but thouhgt id mention it. Dr. Kondziolka and/or Dr. Lunsford quote this in one of their presentation papers.
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particularly the opening reference that the majority of surgeons would choose W & W as their treatment option
Well, not exactly.
What it said was:
"when surgeons were asked which approach they would make, the majority said "Watch and Scan"
That implies that SOME surgeons were asked and the majority of those surgeons said "Watch and Scan."
That doesn't mean that the majority of ALL surgeons said "Watch and Scan."
Besides, the article on conservative management is from 2008 and reports of one study with 72 patients.
The article from UPMS is from 2012 and compiles the results from about 80 studies of about 6000 patients patients.
Food for thought.
I think it is fairly obvious that I was specifically referring to the surgeons who were involved in the particular survey as outlined by Patrick and not to ALL surgeons in general. The fact that the article was published in 2008 is irrelevant unless there was subsequent data available discrediting the findings.
Interesting that some who have opted for microsurgery or radiosurgery tend to have rather negative views relevant to the many positive aspects of conservative management.
More food for thought...perhaps!
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Although the study cited here is older (2002), it is interesting in that it takes into account the surveyed surgeons' ages, and the particular details of different case studies and how they might have impacted their decisions
http://www.acousticneuroma.neurosurgery.pitt.edu/docsurvey.html
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Very interesting reading, these studies. As you know I chose WW. This was after much reading and consulting. I was one on the lucky few whose tumor decide to have a growth spurt. It is wort noting that after the diagnosis I continued on a healthy lifestyle. I do not smoke or drink. My diet consist of very little red meat, pork on the holidays for, Christmas, Easter, New years. Barley greens, and fruit daily, along with assorted vegetables. And dont forget the fish oil, D3, and B12. At least I felt better but it did not stop the little bugger from growing. Just goes to show you everyone is different and these AN,s act differently for different people.
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Hi Jeanne-
Thanks for posting that link, exaclty was I was referring to!!
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MRI results are in and EVERYTHING REMAINS STABLE, NO CHANGE IN SIZE!! I have been Watch and Wait now since Jan. 2007
I am so happy, doing that famous dance!
Jackie
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Many congrats on your good news Jackie...good to know that W & W is working well for you and long may that comtinue :)
Regards
Derek
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Congratulations on the fabulous news, Jackie! Six years as a Watch & Wait AN patient is extraordinary! I very much hope your AN is permanently dormant.
Jim
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Congratulations!!! :) :) :) :)
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Thank-you to my AN friends with the Congrats for my great news!!!
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From a fellow W&Wer - WOWEE - Way to go and congratulations. ;)
Sheryl