How long can we "watch and wait"?

[vjharris]

I just got good results from my hearing test on the (right) AN side, and the Dr. says the reflexes show that the hearing nerve has not been "stressed" yet. I also called in for my MRI results and the nurse says the written report shows no significant growth to my 2.2 tumor. I am very thankful that I can put off surgery or radiation a little while longer.
I guess I was wondering how long others have postponed any treatment.
Another Dr. told me that the tumors will generally grow slower as we get older. (I'll be 46 next week.) Any experiences with tumor growth at middle age?
vjh

[russ]

Hi
  I'm 55 and my 2 side by side ANs grew together last year. Yes; It is often true they do grow slowly, little, or even shrink somewhat with age, BUT, it's not always the case.
  By the size of your tumor and good hearing I would assume it is in the CPA, Cerrobellopontine Angle.
  Removing it now could take your hearing. Removing it when larger, and you facial nerve damage risk may increase.
  This is a situation I would want 2 or 3 good opinions on. House Ear Institute is a good starting place and you can do a web search to find out where to have your MRI sent and they will return with a free telephone opinion. Other facilities will do likewise as MGH, John Hopkins Hospital, and others as well.
  If it decides to grow and reaches 3.0 cm.+; Many facilities will not treat with radiation if you've considered that at all.
  Best wishes in this!
  Russ

[jrhafer]

Hi,

I am 56 and my AN was discovered 3 years ago during an MRI. My only symptom was tinnitus.  My hearing was normal.  The AN was 3mm.  I decided to watch and wait.

After 3 years, (I had MRIs' every 6 months) the AN increased to about 4.5mm, but the volume doubled in size from the original size.

So, last month I finally decided to have Cyberknife radiation for it. My hearing was still perfectly normal and my only symptom was still tinnitus but I decided to do somthing about it now because:

1.  It appears the tumor was still growing.
2.  Even though my hearing was still normal, I felt that the longer I waited, the harder it would be to treat it and the more "problems" could develop.

So,I guess I will see what happens now.  I hope this treatment will do the trip.

Hope this helps.

John

[vjharris]

Thanks John and Russ for your replies. John, I pray for a great result from your cyberknife treatment. If I had the growth you experienced, I would have chosen to treat it now, just as you did. My tumor is much larger than yours, but as Russ had guessed, it is primarily in the CPA, which has not yet caused a problem with my hearing. (The technician and Dr. kept saying what a shame it would be to lose my hearing on the AN side, as it now tests above normal at all frequencies...it made me feel better and worse at the same time.) Russ, I value your opinion, too. I have seen Drs. from University Hospitals and the Cleveland Clinic, so far. With no symptoms except tinnitus right now, my plan is to continue to monitor the situation. If my tumor grows to 2.5, or I if experience any other symptoms, I will have Gammaknife. I have another question: my daughter was born with a congenital cataract, which can be a sign of NF2, but all the Drs. say I don't have it, or I would have more tumors at my age. She has had MRIs with no sign of tumors. (She's 20.) Of course, I still worry about her. Any info on this?
Good day to all!
vjh

[Jeff]

Hi,

Whether to wait or not is a tough decision. I currently have a 3.5 cm tumor on my only remaining hearing side (I have NF2). Though the tumor is large, my hearing remains within the normal range in all frequencies and my speech recognition is 100%. Consequently, I am waiting until I lose hearing or the tumor causes other symptoms. I get an MRI every 6 months like you.  In regardds toNF2 diagnosis, this link has the criteria for diagnosis: http://ctf.org/aboutnf/nf2/diagnosisnf2.htm I might add that according to my doctor, the risk for facial nerve complications increase as a tumor grows beyond 2 cm. Unfortunately, however, there is no gauratee of a good outcome any time you have treatment. My only other comment would be to choose the course that you can live with, because you will have to. Tough choices....and not very fun.

Best wishes,

Jeff