ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: Vivian B. on October 13, 2009, 08:19:08 am
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Hi Everybody,
I just received shocking news from my Neurosurgeon. Remember initially they were unsure as to the measurements of my first MRI in comparisson to my 2nd MRI and the Dr. said he would confirm it and call me back. He said that if there was 1mm in growth it would not matter at thist point. The doctor called me this morning and he confirmed that there was a 2mm growth and this requires tratment right away. He said he will make a referral to the gammaknife centre and they will call me for a consultation and treatment should be scheduled within 6 weeks. When I asked him if this is considered a rapid growth he said not rapid, but significant enough to require treatment. I'm scared!
Vivian
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Vivian .....
My thoughts and prayers are with you. How well I remember the shock of hearing "you need treatment now." In your case, you probably have been thinking, "well, someday in the future...." and suddenly the future is here.
Relax, take a deep breath, you still have plenty of time to make the right decision for you. Do not be in a rush or feel pressured to do what does not feel right to you. You will be OK.
Let us know how the gamma knife referral goes.
Clarice
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Vivian:
I have read JUST today a doctor Clinton reported on a message board (I think in here) that sometimes a 1-2mm growth could just be the difference in the MRI used or the position at which they did the measure.
Have confidence and always double ask everything.
In the meantime, know that someday it will have to come out and that the sooner the better before it gets too big. You will have alot of support on here and everyone will walk you through it!
Everyone has also felt that "scared" feeling, that is natural. Try to replace it with a confidence that ALL will be OK!!!
Hugs to you and keep us posted....
Rhonda
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Hi Rhonda and Clarice
Thank you so much for replying so quickly. The only people that can truy understand are us on this forum. Thanks for your support. I waiting for a consultation appt. date. I will keep you posted.
Vivian
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Vivian,
We will be keeping you in our prayers. If you haven't already, write all your questions for the doctors down so that you don't forget. I remember not being able to think straight the first time I talked with my doctors! I had my list of questions with me thank God. Please keep us posted and know we are with you all the way. Everything will be okay.
Scarlett
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Hi Vivian,
sorry for this unsettling news. 2 mm is still not very much, but can be significant for 6 months. Changes in shape can also be indicative of growth. I think that Dr. Schwartz is trying to be proactive, and schedule treatment for you soon, to make sure that you keep all your options open (including radiation). He is probably afraid that if your AN (or meningioma) grows a bit more, it will start to cause significant compression, thus eliminating the option for GK.
From my personal experience, having a proactive physician who takes you seriously is very important. This is what Dr. Schwartz is doing right now.
Let us know when your appointment with the GK centre is scheduled.
Marianna
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Hi Marianna and Scarlet,
Thank you both for your good wishes.
Vivian
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Hi Vivian,
Keep us posted on what you plan on exactly doing for treatment and when. I go for a MRI on Wed Oct 21st so as you can imagine, I am nervous too. Best wishes for you and wish me luck too.
LisaP ;D
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Hi Vivian,
Wow is all I can say!!! You are in good hands and I know you know that. It is shock that you are feeling. Just know that I would be freaking also. This community is behind you all the way. As I have been told over and over again.....BREATHE
Anne Marie OX
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Vivian ~
I was dismayed to learn that the MRI showed a growth in your AN and that your doctor has decreed the AN needs almost immediate treatment. I hope the upcoming consultation is helpful and you can get a better idea of the situation. Being frightened at this unexpected turn of events is perfectly normal but I think you'll be able to handle this. You know your 'AN family' is with you in spirit and that prayers and good vibes are, even now, going out to you and for you.
Jim
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Jim, Anne Marie, Lisa, I don't know what I would have done without this forum other than self destruct. I know I can count on everyone here for support. I will provide an update as soon as I have an appt . date. I think I will follow up in a few days to make sure that the clinic received my referral.
Lisa, good luck. We are all in this togother.
Vivian
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Hi Donnalynn,
Thank you for your kind words. I think the Dr. thought that 2mm in 6 months was significant and maybe because it's sitting on top of the facial nerve he didn't want to take any chances. I will keep you posted.
Vivian
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hey vivian :-*
Just my 2 cents... head MRI's have a "total margin of error" of +/-2mm... and it honestly sounds like you are within the "total margin of error". Pls keep in mind different MRI technologies, different "slices" of the MRI views, different radiologists reading the films, different dr's measure differently, etc.
I may be out of line, but in my research and discussions with others, it certainly sounds like you are in the "total margin of error" for head MRI's... and not sure if I'm wrong, but it sounds like you are still within the same, with no enhanced growth. Now, you know I'm not a dr.. and if there was a difference by... say...... 4mm or 5mm, then I would definately be concerned.
either way... regardless if I'm right or wrong, I'm sending the healing hugglez your way... you know it :)
Phyl
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Vivian,
I am sure this news in disconcerting at the very least! Hang in there and still take your time making this BIG decision unless the doctor can give you a compelling reason why he is recommending immediate action. Even if it did grow 2 mm in 6 months, you should still be able to take your time to decide- a month or two should not have a significant impact. THis is a huge decision and you need to be able to feel calm in your gut that you made the right decision for yourself. You will know this. I was told this and didn't really get it, until I just knew! :D There is a right treatment, right doctor, right timing for YOU alone! So take a good deep breathe, write those questions down, seek another or several opinions and then listen to your body. We are all here for you and you will be just fine! Hang in there!
Cheryl
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Hello Vivian,
As a fellow Watch and Waiter, I can only imagine being told that your intruder is growing. Those are not the words any of us want to hear, however we do know that this could be a possiblility. Please make sure that whatever you decide to do, be comfortable with your decision and don't feel pressured. Review all of your reasons for moving forward, and make sure it is the best option for you and your situation. Whatever your decision, know that we will be there for you and support you and comfort you!!!
Blessings coming your way,
Jackie
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Hi Phyl, Cheryl and Jackie,
It's great to have everyone's support. As you all know no matter how understanding the ones around you may be, it's never the same as the ones that have gone through the same experience. Thanks for all your advice.
Vivian
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Hi Vivian,
This is the news none of us want to hear, all I can say is "Take A Breather" you in are in good hands and there is all our support behind you.
Hang in there kid, prayers are with you from afar
Don
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Hi Don,
Thank you. I am trying to come to terms with it. It is starting to settle in. I am just anxious for my consultation.
Vivian
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Hi, Vivian:
My AN went through a similar growth spurt about a year and a half ago. I was shocked and dismayed. I took my doctor's advice and scheduled treatment. Looking back now, it was totally the right thing to do. You may be scared (you have a right to be), but just know that everything is going to turn out okay. Your doctors are on top of this situation. You're in good hands.
Best wishes,
TW
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Hi Vivian We appear to be at the point in our wait and watch journey.I have been watching my AN grow for over 2 years now. My 5 MRIs have been at MEEI on the same machine and My AN has grown from 1.9CM to 2.2CM and Dr. McKenna thinks that treatment should start some time within the next 6 months. Dr. McKenna thinks that my particular tumor should not be allowed to grow beyond 2.5CM which to me seems rather large. I am exploring surgery and proton treatment at MGH but can not decide. I seem to lack the confidence or will to do so. Just plain scared I guess. It seems that my AN's will decide when it needs to be dealt with (through my Doctors of course) and at that point I must find the will (courage) to proceed.Wait and watch does not last forever at my age 54.
I have read the replies to your post and find them helpful.There are many who made the decision we now face and have done well.I find comfort in their experiances and advice.
Good Luck with your Doctors Appt. Peace David
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Hi TW and David
Thank you both for your good thoughts and advice. I am overwhelmed at how helpful everyone has been. I thank my daughter everyday for finding this forum for me. It has become a comfort for me as well to provide advice or some warm thoughts to those that need it.
David,
I guess we are at pretty much the same stages. It is a scary thought, but when I look around the forum and see how well people have done regardless of their battles, it's comforting to know that there is life after an AN. I know that you will come to the right decision. I am kind of looking forward to being a "postie".
Vivian