Watch and Wait vs Surgery

[HeidiC]

So I got the MRI results this morning-super fast since I just had the mri last night.  The ENT says it is an Acoustic Neuroma that is about 3 mm on my left side/ear.  5 1/2mMonths ago he told he it was 1 mm, although he says he must have mispoke because his notes say it was about 2 1/2 mm at that time.

He is referring me to a Neurotologist and says my options will be surgery, radiation, or wait and see.  I know it is tiny and that many will say to watch and wait.  My concern is that I have had balance/dizziness issues for a couple of years now, my ear feels full and has some pain, and a numb spot on my cheek(ent says it could not possibly be related since the tumor is so small, I think it would be an awful big coincidence to have a tumor that can cause that sort of thing and it not be related).  I also have headaches but I'm not sure if they are just from stress or not.

If I have these issues now and the tumor is tiny, whats going to happen as it grows, and am I more likely to keep my hearing and face nerves intact if they take it out when it is small.  But on the other hand I don't want to have a dangerous surgery needlessly.  As you can see I am very unsure!!

[HeidiC]

Oh and he said it was located in the Proximal Aic, or thats what it sounded like on the phone LOL.  I know the proximal part is right, not sure about Aic.

[Jim Scott]

Heidi ~

Welcome.  I'm sorry that you're received an acoustic neuroma diagnosis but I'm glad you discovered the ANA website & discussion forums.  I think your doctor was referring to the IAC - the internal auditory canal - and that the tiny tumor was close to it.  You can ask him about this next time you talk to him - and if he uses medical jargon you don't understand, simply ask him to explain it to you.  That's what I did.  It helps.

With such a small AN, you very likely have the option of irradiation which will not remove the AN but will effectively stop it from growing and doing any further damage.  Radiation is non-invasive (no cutting) but has it's own set of risks, as does surgery.  I would suggest that you consult with more than one doctor and try to find physicians that perform both surgery and radiation because if they only do surgery, that is what they'll recommend.  Likewise, if the doctor only does radiation, he'll usually recommend radiation, especially for a tiny AN, such as yours.  Your concern about doing further damage by 'watching-and-waiting' is valid.  This is why you need the opinion/advice of medical professionals.  However, in the end, only you can decide what course to take, so be prepared to make that final decision.  We're here to inform as we can and offer advice when requested but most of all, we offer you our support.  We don't judge but we certainly do encourage.  We have many AN patients with much experience.  They know how you feel because they've been where you are.  I'm one of those folks and I hope you'll consider these forums as a resource and all of us as 'family'.   

Jim

[james e]

I agree with Jim. It is a tough choice. I had those wonky feelings for two years, and one day they got so bad that I almost fell out of a window. At that point, I knew I had to be treated. Deciding between surgery and radiation was hard to decide, and I changed my mind a couple of times, but chose surgery in the end. Glad I did...it turned out very well, and I live a full and happy life. Don't be in a rush to make up your mind. Read all you can about ANs...the answer will come to you and most of the anxiety will be gone.

James

[Desilu]

Hi Heidi,

Jim gave you a lot of useful information. My tumor was 3mm x 4mm when I was diagnosed. Because I didn't have any issues except for some tinnitus (ringing in the ear) every now and then, I decided to "Watch and Wait". I did this for 5 years. At that point my tumor size was 5mm x 8mm. I realized I wasn't getting any younger and the tumor wasn't getting any smaller. I did a lot of research, especially on the ANA website and found a wealth of information and made many lifetime friends. In the end, I decided on surgery (personal choice). I have no regrets and life is good. Because you are having noticeable issues now, you may have to seek treatment now as opposed to later. Do your research and make an informed decision. I wish you the best. Ann

[HeidiC]

Everyone is so nice and helpful here!   Thanks for the replies.  On one hand I feel overwhealmed, on the other it feel like its not really happening.  Its so surreal, like theres no way I could have a tumor.   Can the tumor just go away?!!  Oh well, such is life.  The knowledge of you all will be a big help as I go on this journey.  Whatever I decide, I will do what I feel is best for me at the time.  No regrets.

[leapyrtwins]

Heidi -

this is a personal choice.  Some with small ANs watch and wait, and some don't - it all depends on you.

I am not the type that could watch & wait - I have no patience and every little twinge in my head would have made me absolutely certain that my AN was growing (whether it actually was or not).  I just wanted to get the damn thing out of my head and move along with my life, so even though I was told I could watch & wait for a time I decided to have treatment sooner rather than later.

But that said, there are many on the Forum who've been watching & waiting for a long time - and that's working well for them.

I'm sure your doc mentioned that if you decide to watch & wait it's crucial to keep monitoring your AN through MRIs and make sure it's not growing rapidly.  Another thing to remember is that if your symptoms get worse and/or you experience new ones you should probably opt for treatment. 

Jan

[HeidiC]

Jan, Thank you for your reply.  I tend to be a worrier and and your statement about every little twinge making you feel that your AN was growing describes me to a T.  My symptoms are progressing-the full feeling in my ear showed up about a month ago, my tingly/numb cheek showed this week.

When the time comes, be it now or later after watching and waiting, I think I would go with the surgery, though I am going to do a lot of research.  The radiation scares me.  My father died of cancer in his 40's, so with heridity a consideration, I'd like to avoid things that could exaserbate that.

~Heidi

[Denise S]

One thing I want to mention is that when we are dealing with tumors this small and like your first comment where it may have went from only 2 1/2mm to 3 mm in 5 1/2 mo (or 1mm-3mm)  COULD just have to do with the slices of the MRI scans.   I don't remember it right off the top of my head right now, but there are 2 different MRI ratings and one can do scans/slices about 1mm and I think the other was 3mm.   Which means that the tumor size may vary a little bit just based on the scans/slices.   Hopefully that makes some sense.     Basically saying the MRIs are not super precise down to that small of a size.   So, it sounds like it may not have really grown much, if any (taking into consideration the scans/slice variations) if you go by your doctors 'notes'.    You definitely have time to do your research & get some opinions!!     

You seem to have a number of symptoms for such a small tumor.  BUT, that is one thing you will definitely find with these tumors....EVERY situation is completely different.   It is almost crazy how it goes.   Someone with the tiniest tumor may have more symptoms and problems than someone with a larger tumor.   That is also said for the same with the outcome of any type of procedure, no one is the same.    It just makes all of it harder to justify overall.    Not sure if you posted anywhere else, but be sure to try to get the brochures from the ANA!  They are SOOO helpful to have now and for later!!

Wishing you the BEST!   You are truly at one of the most difficult times (emotionally & mentally anyways) of this whole ordeal.

Take care!!
Denise

[FLsunshine]

I too have a small AN (4mm).  Each person is different in symptoms and treatment approach.  But you do have time to research, collect info, and talk to lots of people and doctors.  I've been in watch and wait for 5 years now with only 1mm growth in that time period.  However, this past year I've had very bad symptoms that I didn't have before.  Both a neurOTologist (Dr. Danner in Tampa) and a neurologist (locally since Tampa in 3 hours away) treat me to keep the symptoms under control.

Its scary to be told you have a brain tumor but its manageable and treatable.  Good luck.

[Silver Sonnet]

Heidi, welcome to the club no one wants to join

Please be sure to talk to more than one doctor, and be sure the doctors are well experienced in this kind of thing.  I've found that I can send my MRIs to doctors all over the country--House Ear Institute, Stanford, etc.--the the doctors will call me back themselves and talk to me about what they see and what they recommend.  These mini-consults have not cost me anything, but they have made the decision-making process much easier.  If you do that, please be sure to send copies of both your MRIs because rate of growth is an important consideration in this case.

Also, consider getting a notebook just for your AN stuff.  Write down what the doctors say (and you can always ask them to seen their observations/suggestions vie email, as well).  If a doc says something you don't understand, ask him what it means!  Any doctor who objects to clarifying what he's saying isn't one you want working on you anyway.

One good thing about your situation is that you can take your time to make a decision and to find a doctor you have confidence in.  In the mean time, we'll do all we can to help

[nftwoed]

Heidi;
  Would say focused beam radiation of ANs would rarely be considered an issue re, cancer. My feeling is, not even so in your family of origion's history.
  Just my opinion, as am merely a pt... I would have Tx, and not watch and wait the tumor.
  If your insurance will pay for multiple opinions, that's good advice, but, my feeling is not only Medicare, but also insurance companies are tightening their belts.
  I think you are looking at similar % outcomes of Middle Fossa vs. Gamma Knife on a small tumor as that.
  Your heart should lead a choice right for yourself.
  I'm anxious to read who the Neurotologist is. Experience and reputation seem most worthy of consideration.

[Rivergirl]

I have said this before, if I knew then what I know now, I may have done something back then.  I was watch and wait for 3 years and I was growing slowly but still safe enough to watch and wait.  My symptoms got horrible and this past year I was miserable with pain, pressure, roaring tinnitus and increasing hearing problems.  I am really better now that it is out quite a few of my symptoms have abated just dealing with the surgery symptoms at this time.  3 years ago I was younger, weighed less, was in better shape and I just know I would have done so much better with the surgery had I had it then.   I do know that the tumors are all different depending on where they are located and what nerve they are chomping on and robbing of blood supply so even though yours is considered small it still can make a hell of a statement.  So my advice is to go to the appointments, see a radiation oncologist, a neurosurgeon, send your films out to HEI and get those opinions, you will feel so much more comfortable with your decisions then.  Best of luck, keep us informed.

[jockieau]

Hi Heidi

Others have said it but I would reiterate - take your time in making your decision!

I found out about my AN in December last year and still haven't 100% made up my mind (it's either surgery or watch and wait).  My symptoms also sound similar to yours.  It's a terrible dilemma - do I get it out and then feel worse because of the surgery, or wait and create problems for myself by waiting?

For me I think surgery is the best option - but the question is when?  I'm spending the time now aligning myself with the surgical team I want to go with, and thinking about when might suit me to have it - maybe early next year?  At least I have the luxury of being able to do it when I am ready - at least at this stage while my symptoms are manageable.

When I first found out about the AN I felt every twinge - felt I could hardly walk down the stairs any more etc etc - and realise now I was a bit panicked by it all.  Now I know I do have some time on my hands and it is not going to knock me over tomorrow (well, very very slim chance of that).

One thing I notice with some people when they first discover they have an AN is that they feel they have to have an answer NOW about what they are going to do - but there is sooooo much to learn and understand I believe until you can make a truly informed decision.

Best advice I've got is:

Take your time (since you can)
Find yourself the best surgeon/s going (if you want to go surgery).

Those two points I've heard lots of others say and they have really hit home for me as I've become more informed.

Best of luck Heidi!

Jockieau