ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: TxNurseNoelle on May 11, 2009, 06:56:59 am
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Hi All, Just had my 2nd MRI since initial diagnosis and it is showing growth..was 19mm now 22mm was 12mm now 14 mm not significant but, still a growth, My doctor told me it is up to me if I want surgery or wait another 6 months and do another MRI to check growth..but then she said I probably have 10-15 years to wait? I went home feeling confused, 5mm growth over 10-15 years? wow that will be a huge AN! I know that it may not grow at that rate, and may actually stop growing at some point but, I have been having new symptoms of sharp pain behind the ear, tinnitus, periods of deafness in the effected ear, and the wonderful balance issues that have NOT subsided...Im asking for advice from my fellow ANers ..oh P.S. my Doc was in a hurry that day she was late for surgery so I did not feel her attention was 100% on me, even happens to us nurses too!
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Noelle ....
Now, I'm confused ..... if your AN has grown 3mm in six months, at that rate it would be way over 5mm larger in 10-15 years! As you know, ANs have very erratic growth patterns .... some grow very, very slowly, others grow quite rapidly, and still others experience spurts of growth. From my research, it seems we ANers need to go by symptoms as much as anything else. If you are having new symptoms that are negatively affecting your life, it may be time to be more aggressive about seeking appropriate treatment. Usually the sooner you seek treatment, the less negative after effects you can expect.
Have you explored any other opinions or options for treatment? I think I would like a doctor who at least gives me the impression he/she is giving me 100% of their time!
Keep us posted on how this goes.
Clarice
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Noelle -
IMO - and please note, this is just my opinion - once your AN starts causing "problems" and it sounds like yours is, I'd seek treatment.
Treatment may not make some of your symptoms go away - like the tinnitus - but it might make some of them better - like the balance.
Jan
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Noelle~
Hey Girl! i was just thinking about you the other day! I have to agree with what the others said - can you call or e-mail and ask the question about the 10-15 year thing?
K
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Hi everyone, I am home for lunch so dont have alot of time but wanted to see if anyone replied..and of course I can count on all of you!!!! to Kaybo..when I get home this eve I will message you pvtly...I had a crying jag at work this morning in my supervisor's office! how emabarrasing! I think I have too much on my mind, as you all know it can weigh very heavily on your shoulders trying to decide what the right thing is to do...I am going to make an apt with my dr's assoc who will assist her for the surgery and see what he tells me. Thank you to all who respond soo promptly I have always kept up with everyone's comments and love the way you all seem to know the right words to say....Hugs and Kisses..Noelle
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Hi Noelle,
I'm with the others. Symptoms, above size, should guide your decision. I don't think anyone would argue the fact that a small tumor is more easily treated than a large one. That holds true for both radiation and surgery. Outcomes can vary regardless of size. We've seen people with small tumors have unfavorable outcomes, and people with large tumors have very good outcomes. Still, the odds favor treatment while it is still small, before it becomes too involved with the facial nerve.
Of course, I am not a doctor, so I am just offering my opinion :).
Ernie
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Hi, Noelle ~
Your AN is quite small but it's location is more of an influence on a treatment decision than the size. If your symptoms are increasing in intensity or regularity (or both) surgery or irradiation may be soon be in your future. You may want to consider getting a second medical opinion if this doctor seems less-than attentive to your situation. Remember, you have the tumor, not her, and you'll have to deal with the consequences of any decision you make, whether that is surgery, radiation or simply observation. Be cautious and be prepared. We'll support you all the way. :)
Jim
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Noelle, if it were me, I'd get treatment soon. 22 mm is not all that small and is widely considered a medium-size tumor. But semantics aside, a 22mm AN typically (and I stress the word "typically," because only your MRI would show this for certain) would be getting pretty close to your brainstem, if not already beginning to press against it. You don't want it to get much bigger before getting it treated.
If you are considering radiation treatment at all, you want to act before the tumor reaches 3 cm in size. Most doctors won't treat a tumor exceeding 3 cm in size with radiation.
Especially considering your symptoms are worsening, your body is trying to tell you that you don't have the luxury to wait much longer. The better condition your cranial nerves are before getting treatment, the better-preserved their function will be after treatment.
FWIW, statistically speaking with your size tumor, you have a better chance of retaining your hearing and avoiding facial paralysis with radiation treatment than you do with surgical resection. But many people have great outcomes from surgery. It's a decision only you can and should make. But if you haven't considered all the available options, I think it's important you do so. Like Jim said, you're the one with the tumor, not your doctor. So please don't rely on the opinion of one doctor alone. Inform yourself, seek additional professional opinions and then go with your gut. You're the boss!
Best wishes,
TW
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Great words, Tumbleweed!
Noelle~
How are you doing?
K