Watch and Wait -- Tumor Size

[letranger]

I was diagnosed with an AN about two years ago.  At that time, the tumor was 0.4 x 0.6 x 0.4 cm and my neurotologist, for whom I have great respect, suggested that we watch and wait.  However, my most recent MRI (January of 2007) showed that the tumor has grown and is now 0.6 x 0.9 x 0.5 cm.  My neurotologist now says that I should have surgery by the end of the year.  I sought a second opinion and was told that it was still safe for me to watch and wait.  The second doctor said I should have an MRI in about six months to monitor any changes.   

I am wondering if others with tumors roughly the same size as mine can share advice or information they were given about whether surgery was necessary or whether it was okay to watch and wait.  Thanks very much.

[Captain Deb]

As an AN survivor with a small tumor who chose microsurgery, I would strongly suggest consulting with a radiosurgeon about Gamma Knife or Cyber knife or FSR, all of which are recently showing good success rates with small tumors.

Capt Deb

[BeJoi]

There are people on this site with larger tumors who are in watch and wait mode.  Always keep in mind that, even though a doctor is competent and well respected, you should always have more than one consultation and speak to doctors in different disciplines, i.e., neurosurgeons and radiation oncologists.  You will get different viewpoints and more options.  If you read the threads on this site, you will also learn a lot about your options and other places on the web to do your own research.  No one can tell how fast or big a tumor will grow, but it appears from what your MRI shows, that you have some time to assess your options and make a choice that will be right for you.

I have a tumor that has been judged as anywhere from .9 to 1.9 in size--so much for consistency in diagnosing .   After doing a ton of research and meeting with no less than 6 physicians, I've chosen to go ahead with FSR treatments starting 6/18.  It's a very personal choice as to what method to use and when to start treatment--based on size, location, symptoms and other factors re: the tumor.  The more you know, the more faith you'll have in the choice you eventually make.

Good Luck,

Beverly

[Jim Scott]

letranger:

Hello and welcome.  No one wants what it takes to be here (an acoustic neuroma tumor) but we're glad you found the informative ANA website - and this forum.  No, we're not physicians, but we do stand ready to offer whatever practical advice we can.

Thankfully, you have a small AN.  Radiation is very likely a viable option for you.  So is surgery.  At this point, it would seem as if 'watch-and-wait' may also be feasible.  When it comes to treatment approaches, ultimately it's your decision to make, not your doctor's.  That means you need to do some research into radiation and, as Bejoi suggested, consult with other physicians.  Consider them all and then make an informed decision as to how you'll address this medical problem.  Don't agree to have surgery because one doctor, even a well-respected doctor, tells you that you 'must'.  You do have more than one option.

We wish you the best and hope you'll use this site and the forums to your benefit.

Jim

[mema]

Just recently on one of these threads I thought I read someone who was in wait and watch for 3 yrs., and the AN wasn't getting bigger.  My AN was 8mm x 6mm.  I researched thoroughly seeking out 4 hospitals from Florida to Philadelphia.  Only John Hopkins told me to wait and watch.  Work was talking about getting rid of medical benefits, so I preceded with FSR.  Now when I read all the posts I wished I had waited and watched at least for a little while.  But I know everyone does what they think is best and at the right time, for whatever reason.  Best of luck whichever way you decide to go.                                                                                                               


                                                           mema

[Desilu]

Hi,

I had a very small AN 3mm x 4mm and was on the watch and wait mode for 5 years. My last MRI in 2005 showed that my tumor had grown to 5mm x 8mm. At that point my doctor suggested that I do something within the next year. I went for a second opinion and was told the same thing. I decided to get serious about my situation and do lots of research, about 2 months after that, I decided to have surgery and be done with it. I had a very successful outcome and I am very happy with my decision. It is a very personal choice that you have to make and as someone stated before me, that you are the only one that can make the final decision. Don't let any doctor try to convince you one way or the other. Do your research, and make an educated decision. I wish you the best, whether you choose radiation or surgery. We are all here to help you!  Ann

[Sheryl]

I have been "waiting and watching" for five years.  I originally started out with a 9 mm tumor and it has grown to 12 mm over that period of time.  I was told that the first MRI at 9 mm may have been "under read" and that it was actually a tad larger.  I was also told that +/- 1 or 2 mm can be due to "technical" differences - different machine, different technician, etc.   As mentioned in other posts, the decision is ultimately up to you.  I have not been unhappy with my decision and have even, at times, forgot about the "booger" (Phyl's definition) in my head.  If and when the time comes, I have already decided to go the radiosurgery route but will keep a close eye on this with yearly MRI's.  You've come to a good place - keep us informed.
Sheryl

[johnsli]

Like Brucifier my booger is 1.7 cm x 2.5 cm, and I am on a wait and watch.  I am having an MRI on 6/20/07 to see if it has grown.
If not we will check again in 3 to 6 months.  As long as my symptoms don't get worse.  (Memory, balance, dyslexia,headaches)
The only change I have had since dx on 3/19/07 is tingling down the left side of my face, and severe fatigue.  I usually feel like I hit the wall around 3 in the afternoon.  At my desk at work the yawning starts and doesn't end.

LOL
Laura

[macintosh]

I'm going to paste in a study that I've cited before on other threads. This is from the U. Pittsburgh site.

Survey Case One: You are a 37 year-old neurosurgeon who presents with mild decreased hearing on one side. You have no tinnitus and no balance problems. Facial function is normal. An MRI scan (right) shows an intracanalicular acoustic neuroma and serial scans have shown a small amount of growth. Which management strategy would you choose for yourself -- observation; surgical resection; stereotactic radiosurgery; fractionated radiotherapy?

Response: The majority of surgeons stated that they would choose stereotactic radiosurgery for management of their small acoustic tumor (n=283; 43%). Only 122 surgeons stated that they would choose surgical resection of their tumor (18%). Fractionated radiotherapy was chosen by 2% of responders. Interestingly, 240 surgeons stated that they would continue to observe their tumor (36%) rather than undergoing any specific treatment at the present time. It had been stated in the case presentation that serial scans had already shown a small amount of growth. This tumor had been observed and was increasing in volume. Nevertheless, approximately one-third of responders continued to choose observation for a 37 year-old patient with a small, but growing tumor.

[Patti2007]

I am in wait and watch mode with 8mm x 4mm.  I ask myself, what do I risk waiting - My hearing is already gone, I have really really loud tinnitus and fullness feeling in my head, but other than that quality of life is really good.  So when do you make a decision.  I would say when symptoms become worse than those you will get from treatment. It is all about quality of life.  If someone is so freaked out about having it that they cannot enjoy life, it is time to do something.

Patti

[rezski]

I just had my 2nd annual MRI and hearing test on Wednesday 6-6 and get to wait for another year as there is no change.  Dr. Backous suggested that at this point he could remove the tumor -1.2 x .6 cm -and preserve my hearing but I pretty much have decided on radiation if and when it grows. I hope next year is just as uneventful.

[Battyp]

Interesting study mcintosh thanks for sharing.
My hats off to those of you who are waiting and watching.  I had to make a fast decision would have probably gone nuts knowing I had a tumor in my head and was leaving it alone.

[johnsli]

I am nuts, so that doesn't pose a problem HAHA.  I am so anxious about my MRI on the 20th, I can't sleep.  HOpefully it will not have grown, and I can start to live a semi-normal life.  Hey, guess what, my doctor's nurse called me on Sunday, can you believe it.
Someone caring that much to call and see how I was feeling, and to discuss what the next step would be after the MRI.
Who would have thunk it

LOL
Laura