Quick Question About Watchful Waiting

[kentcorbin]

Just a quick question: Can someone help me understand why, since 70% (this is the figure I see cited most often) of ANs do not grow--why is Watchful Waiting not the preferred course of action for ALL small acoustic neuromas not presently causing serious symptoms? This seems like a no-brainer to me (which means that I am clearly just missing some important info  .)

[ANGuy]

Can you provide any links etc to the 70% figure?  It's not that I am questioning it, it's just that I would like to learn more about that as I have seen it mentioned here a few times.

As for so many choose treatment, I think it comes down to personality.  Some obviously can't wait, they find they have a tumor when it is already large and on the verge of causing serious brain issues or maybe already is impinging on the brain. 

As for others, I don't get it myself.  It's not for me to say what they should do, only what I would do in their situation, and I am in their situation.  I am with you.  I am basically doing well.  The relatively minor symptoms I do have are certain not to improve with having surgery, and there is a very good chance that I will come out of surgery slightly worse than I feel now.

I think some people believe that they have symptoms that will improve with surgery.  They think this AN business is like torn ACL, it won't get better unless it is repaired through surgery, and surgery will almost certainly repair it.  I think that is erroneous.  I have read it here many times that people should get treatment so they can start feeling better.  I think that is an inaccurate assumption and contrary to most of what I have read and many anecdotal reports I have read in the post -treatment sections of this forum.

Having said all this, this is merely my two cents.  There is a lot to support this position including my team of highly experienced AN and skull-base surgeons, and personal friends one a surgeon the other a dentist who both see no reason to cut open an otherwise properly functioning head.

This is a pretty emotional issue with us having so much invested in this decision making.  Because of this, I think this one post making my point is enough.

[Petrone]

Kent,

You ask why those of us with smaller ANs (say, <1cm) don't opt for W&W? I tend to agree, but as ANGuy said, we all come to our own decisions from our own unique perspectives. 

Some of us START in W&W and later decide that action is necessary if there is tumor growth.  I was in W&W for 3 years after my initial diagnosis (1.4cm), but I decided to act when I saw growth (to 1.8cm) on subsequent MRIs.  I decided to act before surgery would be my only option.  With GK, you need a cushion between the tumor and your brain stem to allow for swelling.  My AN swelled from 1.8cm pre-GK to 2.2cm six months post-GK.  At 2.2cm it was very close to my brain stem.  I don't believe I could have waited much longer before GK would no longer have been an option for me.  Now my AN has shrunk to about 1.6cm.   

Some of us make quicker decisions.  I've seen comments on this forum like, "I want this alien thing out of my body, asap."  I've never worried that my AN was "alien." After all, it grew from my cells, out of my DNA.  It just doesn't bother me that it's there, as long as it doesn't give me any problems.  Two years after GK, it seems to be dying.  That's enough of a solution for me. 

Best regards,
Petrone   

           

[ANAuD]

Just a quick question: Can someone help me understand why, since 70% (this is the figure I see cited most often) of ANs do not grow--why is Watchful Waiting not the preferred course of action for ALL small acoustic neuromas not presently causing serious symptoms? This seems like a no-brainer to me (which means that I am clearly just missing some important info  .)

I agree with you! From reading the experiences of people on these forums and the Facebook groups, I don't understand why anyone would choose to risk SSD (if hearing is good currently), facial paralysis, balance issues, and a host of other side effects and complications of surgery or radiation if the AN is small, relatively asymptomatic, and not located near the brainstem  . For me, I have a 1.5x.8x.6 cm that is confined to the IAC and my only symptom is intermittent mild vertigo less than 25% of the month that seems to be triggered by hormones, stress, and driving long distances. At only 28, I'm not ready to give up my normal hearing, functioning facial nerve, and good balance just to know that the tumor is out of me! As long as the AN doesn't grow and I don't develop any more symptoms, I'm perfectly happy staying in W&W status. I also figure that treatments will continue to improve over the next 5-10 years, so if I do end up needing treatment in the future, I'm hoping that the surgeons will have new techniques that will increase chances of hearing and facial nerve preservation at that time!

[arizonajack]

70% (this is the figure I see cited most often) of ANs do not grow--

I'd like to know where you got that figure because it's 100% wrong.

ALL ANs grow. They grow from Zero to whatever size they are when they are discovered. Some grow slowly after that, some grow rapidly, but only a small percentage don't grow at all after discovery.

Even the ones that don't grow perceptibly are still doing damage which is why the WW faction is smaller than the Kill It faction.

[ANGuy]

70% (this is the figure I see cited most often) of ANs do not grow--

I'd like to know where you got that figure because it's 100% wrong.

ALL ANs grow. They grow from Zero to whatever size they are when they are discovered. Some grow slowly after that, some grow rapidly, but only a small percentage don't grow at all after discovery.

Even the ones that don't grow perceptibly are still doing damage which is why the WW faction is smaller than the Kill It faction.

According to Barrow 70% of AN's in older patients don't grow.  So, basically, it doesn't seem as though it is "100% wrong".

[arizonajack]

According to Barrow

I'd still like you to provide a link to wherever you got that because, according to Barrow's website:

"These tumors usually grow slowly over a period of years. They expand in size at their site of origin and when large can displace normal brain tissue."

See for yourself:

http://www.thebarrow.org/Neurological_Services/Brain_Tumor_Center/Acoustic_Neuromas/203275
 

70% of AN's in older patients don't grow. 

OK. Now you've qualified your statement by limiting it to "older patients." But it's still not 70% don't grow.

In the following study 48 AN patients participated. They ranged in ages from 70-90 years. 15 of those patients demonstrated no growth of the AN during the mean observation period of 28.5 months (range 5-108 months).

http://www.ncbi.nlm.nih.gov/pubmed/9093682

15 out of 48 is only 31.25% for no growth in elderly patients.

In all fairness I continued my search and came up with an article from Barrow Quarterly which does mention a study of elderly patients where 71% showed no AN growth but also cites another study where only 42% showed no growth:

"Deen et al.[7] followed 68 elderly patients (mean age, 67.1 years) with acoustic neuromas conservatively for a mean of 3.4 years; 71% demonstrated no tumoral growth. Eventually 15% required treatment. Glasscock and coworkers[13] followed 34 patients for a mean of 2.4 years. The mean growth rate of 56% of the tumors was 2.9 mm/year. Mirz et al.[21] reported 50 patients. The mean growth rate of 64% of the tumors was 1.6 mm/ year. During a mean follow-up of 4.8 years in 80 patients with no prior treatment, 42% exhibited no growth"

http://www.thebarrow.org/Education_And_Resources/Barrow_Quarterly/203363

By the way, Randall Porter, who co-wrote that article was my neurosurgeon for my GK.

If you average out the 3 studies only 47.67 % of ANs showed no growth amongst elderly patients.

 it doesn't seem as though it is "100% wrong".

The 100% thing was my sense of humor kicking in. Since all ANs grow from nothing to something it means that 100% of all ANs grow. Get it?

[ANGuy]

 

70% of AN's in older patients don't grow. 

OK. Now you've qualified your statement by limiting it to "older patients." But it's still not 70% don't grow.





In all fairness I continued my search and came up with an article from Barrow Quarterly which does mention a study of elderly patients where 71% showed no AN growth but also cites another study where only 42% showed no growth:

"Deen et al.[7] followed 68 elderly patients (mean age, 67.1 years) with acoustic neuromas conservatively for a mean of 3.4 years; 71% demonstrated no tumoral growth. Eventually 15% required treatment.

http://www.thebarrow.org/Education_And_Resources/Barrow_Quarterly/203363


The 100% thing was my sense of humor kicking in. Since all ANs grow from nothing to something it means that 100% of all ANs grow. Get it?

I agree that 70% is in one study under limited circumstances.  It's why I asked for a reference to that number earlier in the thread because while we sure would all love for that blanket statement to be true, it didn't seem likely.  In fact, nothing about AN's can have a blanket statement applied to them because if you wanted to be that general about them, they wouldn't exist in the first place since you could pretty much do a study of tens of thousands of members of the general population and not find one at all.

I would like to make the point that not all of them do "grow".  They obviously "have" grown, and for most of the younger people "will" grow, but certainly not all of them "will" grow any further, or at least not for a long time.

That long time brings up another point.  I am 48.  If my tumor doesn't grow for 10 years, at 58 I will still be relatively young and able to weather surgery well.  But, if I push it to 68 and THEN need surgery, it may well be risky at that age since I will likely have all of those other typical things that come along with age.  If I keep riding the WW train until I am say 68 and then I need surgery, but by then I have cardio or lung issues, it would have been better to take care of it 10 years before.

In my case, these are all things that go into my calculations.  Of course, my best laid plans will all go out the window if I get an MRI that shows growth.  In fact, I am off to Duke for a nice buzzy session in that expensive tube that we all know well for my 6 month MRI.  That will make it one year from my initial dx, 14 months I think.  I'm hoping to make it 9 more and hold off treatment for a total of 10 years. 

[Forum Admin]

Hi everyone! 

As much as this topic has been helpful, it is now going off topic and unfortunately has to be locked from anymore posting.

Thank you for your continued support of ANA.

Courtney (Admin)