Author Topic: ~50% of AN tumors don't grow in various studies - ?  (Read 5884 times)

Sheba

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~50% of AN tumors don't grow in various studies - ?
« on: April 22, 2016, 10:44:29 pm »
Hi.

I've been reading a ton since my diagnosis last week.

I had the impression, most younger (<65-70?) people in good health should choose active treatment (surgery or radiation), unless their tumor is pretty small. 

I was thinking mine, at 1.4cm, is probably past the "wait and watch" window, and I should take care of it now since I am healthy and have good insurance.  I figured my only dilemma now is choosing surgery vs radiation, and which docs.

But I just read a bunch of abstracts/reports tonight, about 8 different studies, all finding basically that less than ~50% of tumors show any growth at all, when monitored for various periods of time (some studies were shorter, one was 9 years and still had the same finding!). 

The exact % varied from one study to the next but tended to stay between 40-50%.  And for smaller tumors, the % that grow was smaller. 

I had read the stats about average growth of 1-2mm/year, and simply assumed mine would probably do that.  Now I am not sure at all.

Given a 50/50 chance that it does not grow for a long time, it seems like monitoring may not be a bad idea, even on a medium size tumor that is outside of the canal ???  (compared to the known risks of surgery, anesthesia, etc.)

Argh  so hard to weigh the various alternatives.   I certainly don't want it to get much bigger and harder to remove.  But it's a pretty radical thing to open one's skull and poke around.

Curious how others evaluated WW vs surgery,
thanks for any input !
« Last Edit: April 22, 2016, 10:46:36 pm by Sheba »
Diagnosed 4/2016 1.4cm AN.  Mild hearing loss and tinnitus.
Removed 7/2016 at Keck, Drs. Freidman and Giannotta, Retrosig approach.  Lost hearing in AN ear, but no other negative outcomes.  Will investigate bone anchored hearing devices.

elizabethpoff

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Re: ~50% of AN tumors don't grow in various studies - ?
« Reply #1 on: April 23, 2016, 12:44:33 pm »
I'm still pretty new at this.... But from what I've read.... Even if there is no growth.... Damage is still happening.... So hearing loss... Nerve damage.... Etc... Seems inevitable with watch and wait.... But with surgery there is a chance of preventing further damage.... And you don't have to always wonder

2mm by 3mm diagnosed on feb 18 2016 ...watch and wait for now

caryawilson

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Re: ~50% of AN tumors don't grow in various studies - ?
« Reply #2 on: April 23, 2016, 12:50:36 pm »
As with all AN, their "uniqueness" makes it a hard question to definitely answer. My tumor was 4.5 cm so I never had W&W. Several factors:
1. AN are normally slow growing 1-2 mm per year but may not grow at all for years or may get very aggressive.

2. You need some during W&W phase to get an understanding of your growth rates. It sounds as if you are not sure on the characteristics of your tumor.

3. I would W&W, unless: a. Have some debilitating symptoms today, b. Worried on you short term health or c.insurance is always a concern. AN are not cheap

Basically all the reasons noted by yourself. Sounds like you are going through the right process and you may want to W&W.
4.5 cm, 17.5 hour modified retro surgery
John Hopkins: Lim / Carey
Complete Facial Paralysis
Facial Plastic Surgeon (amazing): Dr. Boahene

UpstateNY

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Re: ~50% of AN tumors don't grow in various studies - ?
« Reply #3 on: April 23, 2016, 01:05:24 pm »
Hi Sheba,

Deciding when and if treatment should occur is probably the most difficult part of the decision.  The reason most younger people are treated is that they have a long life span left, so the odds are that the tumor will grow to the point of needing treatment at some point in their life. It is also important to note that ANs can grow in spurts, so some decide to wait and watch to determine if growth is occurring and how fast.  However, the danger of waiting too long increases the symptoms, risks and side effects with either treatment.

My AN was 8mm at diagnosis and grew to 12mm in 6 months.  I had the option of waiting longer to see if the growth would slow down or stop, but being 49 years old the odds were that it would either continue to grow or grow larger at some point in my life time and increase the risks.  Therefore, I had it removed surgically while I was in decent shape and healthy.  With either treatment (microsurgery or radiation), the chance of better results and lower risks occur when the tumor is smaller.   I was scared of surgery on the front end based upon what I saw and read on the internet, but found my recovery to be very quick and issue free.  This was most likely because it was removed when it was small and with very experienced surgeons.  My experience is documented at the following link:
http://www.anausa.org/smf/index.php?topic=22581.0

The best you can do is to gather as much info as possible to make an informed decision, but go with what makes you feel most comfortable, whether it be waiting or choosing treatment.
« Last Edit: April 23, 2016, 01:10:58 pm by UpstateNY »
Apr 2015: Diagnosed with 8mm AN at age 49
Oct 2015: MRI showed growth to 12mm
Feb 2016: Completely removed via Transcochlear approach at House Clinic; no facial/eye issues, balance improved
Aug 2016: MRI shows no regrowth/residual tumor

My story:  http://www.anausa.org/smf/index.php?topic=22581.0

rupert

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Re: ~50% of AN tumors don't grow in various studies - ?
« Reply #4 on: April 23, 2016, 07:30:59 pm »
Hi.

I've been reading a ton since my diagnosis last week.

I had the impression, most younger (<65-70?) people in good health should choose active treatment (surgery or radiation), unless their tumor is pretty small. 

I was thinking mine, at 1.4cm, is probably past the "wait and watch" window, and I should take care of it now since I am healthy and have good insurance.  I figured my only dilemma now is choosing surgery vs radiation, and which docs.


I would concentrate on these two o paragraphs of yours.   Your tumor grew to 1.4 CM.  How long did it take to grow to that?   Nobody knows but,  the fact that it is 1.4 CM  means that it grew. It could have been 20 years, 10 years or 10 months.   How would any study conclude that tumors don't grow?  They all grow or they wouldn't be there right?  There's all sorts of questions with studies like these. Just way too many variables to draw conclusions like they don't grow.  Of course they grow. It all comes down to how long you feel comfortable waiting.  By your comments I'm thinking your not that comfortable with it.   

ANGuy

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Re: ~50% of AN tumors don't grow in various studies - ?
« Reply #5 on: April 23, 2016, 07:38:56 pm »
I'm still pretty new at this.... But from what I've read.... Even if there is no growth.... Damage is still happening.... So hearing loss... Nerve damage.... Etc... Seems inevitable with watch and wait.... But with surgery there is a chance of preventing further damage.... And you don't have to always wonder

Damage often happens from the surgery ITSELF thereby increasing symptoms.  My balance nerve will fail whether I get treated or not.  My hearing right now is "not that bad" but is almost certain to be non-existent following treatment based on my ABR results.  Right now, I have no headaches, but many with surgery or radiation end up with them.  I think it's a bit optimistic to assume that having a hole bored through your head to the base of your brain will some how improve the way you feel.

In my case, my tumor hasn't grown in the 2 years since my diagnoses and my life is just about perfect.  I'm not going to loose my hearing, cut my head open, spend weeks or months recovering and risk facial paralysis unless and until I have to.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

caryawilson

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Re: ~50% of AN tumors don't grow in various studies - ?
« Reply #6 on: April 23, 2016, 08:16:35 pm »
As you are starting to see,W&W is the most difficult phase and you are also seeing everyone has advice based on their experience. I've noticed that most people recommend their path since most AN patients are comfortable with their decisions, and hopefully you have noticed the common theme: go to an experienced doctor.

In the end, all paths have their risk:
1. W&W: more damage to the nerve, change in insurance, etc
2. Surgery.. Not a minor procedure
3. radiation. Radiation also has risks and one area of concern is that it could modify the tunor and make a future surgery (if needed) more complicated.

The best part of a large AN was surgery was the only option. I'm sympathetic to everyoner that is troubled with these decisions. However, rest assured you will be working with some of the finest doctors in the world.

4.5 cm, 17.5 hour modified retro surgery
John Hopkins: Lim / Carey
Complete Facial Paralysis
Facial Plastic Surgeon (amazing): Dr. Boahene

Sheba

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Re: ~50% of AN tumors don't grow in various studies - ?
« Reply #7 on: April 24, 2016, 10:26:37 am »
Hi all - thanks for the great discussion !!

@Cary - yeah I am somewhat concerned about insurance, but maybe that is not rational since if I got laid off, I would have option of 18 months COBRA to continue it, that's the law.    I think my bias is, if I will need to treat it eventually anyway, I'd rather get it out of the way and move on with my life....  but I am taking pause to read the stories of those who have regret and "quality of life" issues after.  It's alarming that AN Treatment necessitates so much ongoing research on post op QOL.  My QOL now is great.

@Rupert - agree totally - obviously it has been growing in the past !!  but if I had not seen so many studies with very similar findings (i.e. only 40-50% grew in observed period), I would not have brought the question here.  ANs seem to grow in phases and potentially can stop for quite a long time.  "Averages" can often be misleading.

... and as @Elizabeth noted, they can continue to cause damage even if not growing.  Right now I have 88% speech discrimination still in AN ear.  Things sound a little muffled and conversation in loud places is a little hard.

@AN Guy - your stable tumor of course supports the studies which show ANs may just stand still for quite some time.  My AN is larger than yours so I am nervous to give it opportunity to grow more.  My symptoms have been gradual / subtle (hearing, tinnitus), mine is already outside of IAC, which some say allows them to grow faster. 

@Cityview - re: picking docs - thanks to this website - I sent all my packets within a couple of days of diagnosis to all the top places (House, Keck, Chang/Stanford) as well as locally to UT Southwestern (will ask UTSW about volume of AN treatment; I've spoken at length to one of their patents; their neurotologist had some experience at House as well).    Consults in progress.

@Upstate - thanks so much for your post that detailed your experience at House.  it is really comforting to know about the cases that go well.  as others have noted, there is a tendency for good cases to just move on with their life and not come back to the Discussion board. 
« Last Edit: April 24, 2016, 10:30:41 am by Sheba »
Diagnosed 4/2016 1.4cm AN.  Mild hearing loss and tinnitus.
Removed 7/2016 at Keck, Drs. Freidman and Giannotta, Retrosig approach.  Lost hearing in AN ear, but no other negative outcomes.  Will investigate bone anchored hearing devices.

Echo

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Re: ~50% of AN tumors don't grow in various studies - ?
« Reply #8 on: April 25, 2016, 06:56:22 pm »
Hi Sheba,

My AN started growing from the end of my IAC, with the bulk growing out into the CPA. While AN's do on average grow very slowly within the IAC, there's nothing to slow them down once they extend into the CPA if they decide to start growing.  I was 58 when diagnosed with a 1.8cm AN which grew to 2.4cm within a year.  If your AN is primarily within the CPA, then do keep a close eye on it with regular MRI's. 

While W&W is certainly a good route to go, it's important to remember that if your AN does grow, so do the risks of complications.  It's critical to find a specialist with lots of experience treating AN's with either microsurgery or radiation to help minimize the risks we face when moving forward with treatment.

Deciding on the type of treatment to have and when to have it was the toughest decision I've ever had to make. Your not alone in that area, but I can tell you once the decision was made and the treatment behind me, there was an immense sense of relief.

Cathie.
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

Greece Lover

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Re: ~50% of AN tumors don't grow in various studies - ?
« Reply #9 on: April 27, 2016, 07:51:53 am »
This is a helpful discussion.  One thing that hasn't been said is the emotional/cognitive side of it all.  I'm scheduled for surgery for a 1.2 cm in a little over a week.  I just want this thing out of my head and over with.  I know I risk losing my hearing from the surgery.  But the surgery is never going to get less complicated.  The thought of waiting sounds worse to me emotionally.  I want to get on with my life, even if it means assuming some risk at this point.

My doctors also told me that symptoms can change and progress even if there is no tumor growth, which I think is documented in some studies.  But, if these forums show anything, its that one of the hard things is that there is not one clear path. Research and personal feelings play into the decisions that are made.  I hope I've made the right one!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!

mcrue

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Re: ~50% of AN tumors don't grow in various studies - ?
« Reply #10 on: April 27, 2016, 11:32:56 pm »
Greece Lover, good luck with your up coming surgery. I'm curious since your AN is small, if you're not having major symptoms from the AN, I'm curious why you're choosing microsurgery over having it "zapped" with radiation?
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

Greece Lover

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Re: ~50% of AN tumors don't grow in various studies - ?
« Reply #11 on: May 16, 2016, 07:28:48 am »
I decided on surgery because I'm relatively young (40) and didn't like the lack of long studies of the GK option. Also the idea of the continued uncertainty seemed horrible to me. I wanted this behind me, even though I knew I assumed some risk in choosing surgery.

My tumor is now out. No major complications yet, knock wood. Stitches out today hopefully. Main issue is the vestibular readjustment. Very difficult. But it should get better!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!

mcrue

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Re: ~50% of AN tumors don't grow in various studies - ?
« Reply #12 on: May 18, 2016, 02:55:48 am »
I decided on surgery because I'm relatively young (40) and didn't like the lack of long studies of the GK option. Also the idea of the continued uncertainty seemed horrible to me. I wanted this behind me, even though I knew I assumed some risk in choosing surgery.

My tumor is now out. No major complications yet, knock wood. Stitches out today hopefully. Main issue is the vestibular readjustment. Very difficult. But it should get better!

Good luck with a speedy recovery Greece Lover. Needless to say, selecting a treatment option is not an easy decision as both have their pros and cons. It certainly is a personal choice. Like you,  I was also in my early forties (42) and I knew one way or the other that I would likely have to monitor my brain with lifetime MRI's regardless which option I selected (surgery or radiation).

Unfortunately, some radiation treatments fail, and some surgical removals end up growing back even after they "got it all." 

It's always interesting understanding what makes a candidate select one option over another.  Best wishes.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

 


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