ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: Vivian B. on October 28, 2009, 12:48:34 pm
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Hi Guys,
O.K. I just came back from my consultation at the Gammaknife Centre. I met with two Neurosurgeons, and three Oncologists. All very pleasant. It turns out that they can't confirm for certain that the tumour grew 2mm. They gave me a choice to wait another 6 months or to get it treated now. They did not recommend what I should do and thay said that it was totally up to me, whatever I am most comfortable with. They booked by next consultion which is May 5/2010 and they will call me with the MRI date. They told me that there are no advantages or disadvantages to do it now. They also said that if it stops growing at some point, I can have another 4 years without treatment. However, they can confirm the growth rate better I guess on my next MRI.
It was confirmed that the size is now 20mm. So I imagine this is considered medium size. I actually met a very nice lady in the wating room, the first time I ever saw a person with an acoustic neuroma. She shared her experience with me and I with her. She said she had surgery many years ago, but the tumor grew back and she had gammaknife last year and was very pleased with the whole experience and the results and was just there for a followup.
Anyway, I don't know what to do. I got the impression that the doctors felt more comfortable if I waited to ensure the growth rate, but at the same time they did give me a choice.
Vivian
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Hi Vivian:
From what I'm understanding, the 2mm growth may not have occurred at all.
:)
I'm thinking you do have 2 options and you have to feel comfy with what one you take.
Now I assume you are asking for opinions so here is mine ;) Since it may not even have grown at all.. or may not grow for another couple of years, I would hold off. However, are your symptoms bad enough that you want to end any further discomfort?
If you are non symptomatic and there is really no growth, I would consider leaving it. BUT, since it is 20 mm already and there could be an irratic growth spurt at some point, then the smaller the easier to remove. Also, the earlier you treat, they younger you are, the easier/faster to heal (that is what I have been told over and over by the docs lately anyway).
My answers are all over the board once I re-read what I typed up there. lol But they all make sense from one side of the fence or the other.
So of course you still have 2 choices and it ultimately falls into your hands and you future.
Read lots on here and find out what others have done and their final results, their ages, the sizes, ect... this will help you in your decision.
Thinking of you!
Rhonda
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Hi, Vivian ~
Thanks for the update from your consultation.
Your AN is approximately at 2 cm, which is about medium-size. If the doctors are not pushing you to immediately address it then I would follow their lead and wait another six months, barring any sudden onset of symptoms that might indicate a growth spurt. If you prefer radiation, you don't want to see the AN get much past 2.5 cm due to post-radiation swelling issues that tend to preclude radiation treatment on tumors larger than 3 cm. However, unless you're extremely anxious to undergo treatment and don't want to worry about growth, I would wait for your next scheduled MRI in May, 2010., realizing that you may have to make a firm treatment decision, then. Meanwhile, try to relax - and hope that the AN actually stops growing. It does happen. :)
Jim
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Vivian, I had gamma knife at UT Southwestern in Dallas with Doctor Mickey and Doctor Hittson. I am very, very pleased with the results. I was able to watch & wait through 3-6 month MRI's. During that time I did lots of research and talked to family and friends and decided that was the best decision for me. I did have some issues this past June. It was exactly 2 years after gamma knife. I was having balance problems. Scared me so I went back for a 3 month MRI. It showed the tumor had started shrinking. I don't remember being told that when the tumor shrinks, it may cause some issues, just like when it is growing. Makes sense now, but at the time was scared. My brain and body has relearned and adjusted to the changes, so I am almost normal ;D
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Hi Vivian,
obviously 2 mm is within the margin of error, but also 2 mm is within the typical annual rate of growth of an AN. So it is very hard to tell. The good thing is that you don't need to rush into anything.
I did want to point out though that these doctors tend to not recommend treatment unless it is absolutely necessary. They are very conservative. In my case they said that I could wait to get treatment and my AN was a whopping 3 cm ???.
2 cm is still in the medium range, but even some modest growth may start causing symptoms and compression. Did the doctors mention anything about brainstem compression?
As Rhonda pointed out, the decision to get treated is a double edged sword. On one hand, you risk having symptoms from radiation, from being totally asymptomatic. On the other hand you risk having sudden onset of symptoms if the AN grows, as well as getting at the borderline for radiation treatment. I consider myself very lucky that I continued to be asymptomatic post-treatment .
You need to make the decision you feel more comfortable with and fortunately you are not in any rush.
What I might do is schedule another MRI at 6 months and also a date for treatment soon after that. So you will have your date scheduled already and if you see there is no growth then you can always cancel it.
Marianna
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Sounds pretty consistent with the Canadian 'sales' story on treatment - don't do anything until absolutely necessary. It is a very conservative approach.
YOu know my opinion, more than likely - I would wait - don't see why you would want to irradiate your brain if it wasn't medically required. Wait the 6 months, and check in again with another MRI (which you would have to do if you got treatment or not). You may get 4 years out of this watch and wait (or more) and the technology, the research/approach and experience may prove to be better in a few years. While you are older than me (by a bit), you certainly aren't anywhere near the point of 'get treated before you get too old'!
Hopefully you can take their words of wisdom and kick back for another 6 months!
Congratulations
Ann
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Thank you everyone for your advice. Marianna to answer your question, my tumour is not growing upward toward the brainstem but downward toward the acoustic area and facial area. I am torn as you can see as many others have been as well. I am leaning toward maybe waiting another 6 months, but a little part of me says just go ahead with it. I don't know! Very confusing.
I will keep you posted.
Vivian
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Hi Vivian,
I will help by giving this useful advice: either watch and wait some more, or get GK now. :)
2 mm is not enough on its own to get excited about, so it should probably be more about your symptoms and whether they are increasing. It may also be about how comfortable you are with watch and wait. If it creates too much anxiety, you might decide to just get it over with. If you think you will end up getting treatment sooner or later, sooner is not such a bad idea.
Take care,
Steve
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Hi Steve,
Thank you great advice. I am still sitting on it I will decide soon.
Vivian
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Hello Vivian,
It's a difficult situation to be in, I do agree with Steve, about how you "Feel" about things, though. I think that part of our Watch and Wait, scenario is the hope for advancement on technology and also the hope of never having to get treatment. It's all kind of a gamble, guess that's why I enjoy gambling??? Hahahaha. Actually I am leaving it up to my maker. Blessings to you in your decisions,
Jackie
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Hi Vivian,
I wanted to stop by and say i am thinking of you.
Watch & wait can sure be hard place for me to sit at times...i am always concerned, will symptoms pop up and have i waited too long?
If i get treatment, will i have any symptoms that were not there before?
My doc also suggests i 'do something' at 1.5cm - don't know where he came up with that threshold - maybe before any additional symptoms occur.
So - i guess i have some more questions to ask during my next MRI in early Dec.
My thoughts and prayers are with you during this time.
Stay strong and i know you will make the right decision when you need to.
Sincerely,
Sue
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Hi Sue and Jackie,
Thank you both for your kind words. It sure helps. I am still thinking of what to do. I keep on thinking that some light will shine on my forehead an give me the answer. Silly, I know.
Vivian
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vivian... I'm just walking in to give you good vibes... and hoping that your gut will steer you to what will be best for you and your particular situation. Regardless of what you do, you KNOW I'm cheering you on....
hugglez!
Phyl
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Hi Phyl,
Thank you so much. It's so hard to decide either way. I am still thinking about it. I will let you know.
Vivian
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Phyl, you said it right!
We are all here to cheer you on Vivian! Your personal cheering squad!
xo
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Hi petgroomer,
Just caught your note. Thank you. I think I finally decided to wait until my next MRI which should be sometime in April 09. I would feel better if they can actually confirm growth, more out of curiosity than anything. I expect it is growing as it already reached 20mm. Why stop now right? Once I know that it is growing, I am going to tell my doctors to go ahead with the gammaknife procedure. It's too painful to watch and wait at this stage as the tumor is considered of medium size. Although I am not sure there is ever closure with this condition but you hope to move on somehow after treatment.
It's so great to have all of you to discuss things with. Who better than the people going through it.
I will keep you posted. I do have a consultation on May 5/09 to get results of the next MRI(date pending). I was so terrified of the MRI itself prior to all of this. Who knew, it's a piece of cake now after my 2nd one in a closed machine! It's funny how you can get the inner strength within you to kick in when you need to or at least you hope it does.
Vivian
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Hi Vivian:
One of the factors that caused me to have Gamma Knife radiosurgery last week was the comment made by my Doctor. He said that right now my hearing in my AN ear is very good. In time, the growth of the AN may cause my hearing to diminish. If I have the procedure now, my hearing after the procedure could be close to the same as it is now. If I wait, and my hearing diminishes, I would likely come out with the same hearing I had going into the procedure. That did it for me. I decided to have it done when my hearing going in was very good. It is the same now but my time after Gamma Knife is only one week. Hopefully, when the swelling subsides several months from now, my hearing will still be good. (I detest the thought of ever having to wear a hearing aide).
Frank
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Hi Frank,
Thanks for your thoughts. I was also considering that, and I am thinking of having another hearing test soon just to see if there is any differene from my last on in June 09. I understand how you feel about the hearing aid, lately I have been thinking about it too. Let me know how your recovery progresses and good luck.
Vivian
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FYI, if it ever comes to it, hearing aids aren't so bad these days. My main complaint is that it makes my ear itch sometimes - I think it has to do with ear hair. ::)
Steve