Author Topic: A new watch and waiter  (Read 5725 times)

davjack

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A new watch and waiter
« on: December 22, 2009, 03:47:55 pm »
Well, I'm really surprised to be here...since the first two doctors I saw/talked to, offered me no such option. I saw Dr. Antonelli at Shands yesterday. He told me I could w&w. I asked him, if it were him, would he choose w&w. He said "Not just yes...Hell yes!" So I'm gonna take that as a "yes"  ;)

So I'll get another MRI in March. That will be 6 months. And I'll see where I'm at from there. If it gets bigger, I'll go back to Shands and Dr. Friedman for the zappin'!

Have a very Happy Holiday Everyone!
DJ
Lumpy is 1.3cm...am now in W&W mode since Dec. 2009

Pooter

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Re: A new watch and waiter
« Reply #1 on: December 22, 2009, 04:27:41 pm »
At 1.3cm, I'm not surprised that you can wait and watch for awhile..  If it's not growing and the current symptoms aren't major and the MRI confirms that they're not likely to get much worse for the forseeable future, then why not as long as your comfortable with waiting..  Many with smaller AN's wouldn't be comfortable knowing the "lumpy" was there and just waiting to see what happens, but if you're good with waiting, then that's great...

Congratulations!

Regards,
Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

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Mickey

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Re: A new watch and waiter
« Reply #2 on: December 22, 2009, 05:16:34 pm »
Welcome to the Wait + Watch brigade! There is plenty of info here regarding people who are in the same boat like myself .12x.06 and "stable" Keep the faith, Mickey

petgroomer

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Re: A new watch and waiter
« Reply #3 on: December 22, 2009, 06:37:18 pm »
Happy Holidays...
Watch and Wait can be social.. as we are all here for eachother with advise and support on a daily basis. 
Welcome to our neighbourhood.
:)
JULY 2009 found 5.6 cm X 4 cm vagal schwan on the 10th cranial nerve and by MAY 2010 it grew to 7.1 cm X 4 cm X 4.1 cm  Nov 2010 it has grown another 10%... time for C.K.! :)
I love life but I'm finding it harder to do .. one millimetre at a time.
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leapyrtwins

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Re: A new watch and waiter
« Reply #4 on: December 22, 2009, 08:42:16 pm »
DJ -

I'm not surprised either that you can watch and wait for a time since most ANs are very slow growing.  The important thing is to monitor them periodically via MRI to check for growth. 

The other things that might prompt you to seek treatment would be a worsening of symptoms or a development of new symptoms.

Happy Holidays to you  :)

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Jackie

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Re: A new watch and waiter
« Reply #5 on: December 22, 2009, 09:18:30 pm »
Hello DJ,

Welcome to our coveted group of fine people that also have chosen the Watch and Wait treatment for now. In February I will have been doing this for 3 years, with no changes!  I hope to be able to continue this path along with the rest of my pals. Good luck to you and don't be a stranger, as we have vital things to contribute also.
Blessings to all,
Jackie
9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

Jim Scott

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Re: A new watch and waiter
« Reply #6 on: December 23, 2009, 03:24:27 pm »
D.J.  ~

Welcome to the Watch-and-Wait club.  As Brian & Jan noted, at 1.3 cm and with minimal symptoms, you're well qualified to simply observe the tumor (via MRI scans) and not rush into anything.  At least you have a viable 'Plan B' (radiation) which seems like a prudent course, should the next MRI indicate some tumor growth.  I hope your AN remains 'stable' for a very long time.  Meanwhile, I know you'll find the many 'Watch-and-Waiters' here a convivial group.  Of course, you can post in any forum you wish....but you knew that, didn't you?  Yeah, I thought so.  ;)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Sheryl

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Re: A new watch and waiter
« Reply #7 on: December 26, 2009, 06:52:01 pm »
Hi DJ - I'm in Florida too - just for the winter - one of those dreaded "snowbirds".  I have been on W&W for 8 years and although my tumor is not an acoustic (8th cranial nerve), it is on the 9th cranial nerve.  My latest MRI showed an increase of 1 mm (now at 14 mm) over a period of two years and a difference from one done five years ago at 13 mm.  So I'm going to keep up the W&W as any symptoms are extremely minimal.  Meanwhile my husband was jealous so he has been dealing with another type of benign brain tumor called a meningioma.  Unfortunately he's had two surgeries and one Cyberknife treatment.  Hopefully his next MRI in January will be stable. 

Hope you continue to W&W along with us.
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

davjack

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Re: A new watch and waiter
« Reply #8 on: January 02, 2010, 11:25:12 am »
Thanks everyone! You all are the best  ;D
DJ
Lumpy is 1.3cm...am now in W&W mode since Dec. 2009

Tumbleweed

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Re: A new watch and waiter
« Reply #9 on: February 18, 2010, 02:36:50 am »
Many with smaller AN's wouldn't be comfortable knowing the "lumpy" was there and just waiting to see what happens, but if you're good with waiting, then that's great...


Just to expand on Brian's train of thought, when I first found out I had an AN my perspective was this: before it was diagnosed, I still had an AN in my head; I just didn't know it. After diagnosis, I was still the same person. So why not watch and wait (if the doctors thought it was okay to do so)? After all, I'd been sort of watching and waiting for all those years the tumor was growing before I was diagnosed. I bet there are a lot of people in the world who have a tumor -- or multiple tumors -- in their body and don't know it. They are all in watch-and-wait, without the "watch" part.  :D

A lot of people (those not in this forum) who have never experienced a slow-growing disease think they are perfectly healthy until the day a disease magically appears, when in fact the process of aging (even when you're young) is one of a body slowly getting torn down, wearing out, and becoming the target of opportunistic forces of disease. One of the spiritual challenges of living with a disease is accepting the new you and being okay with it. This in no way means people who opt for immediate treatment aren't capable of accepting their disease. Many opt for immediate treatment not out of fear but because they refuse to let the AN control their life and choose to take positive action so they can move on with their life.

It's a personal decision and process that is different for everyone, with no right or wrong way. That is perhaps the biggest spiritual component of having a disease like an AN. It puts us on a path of self-discovery like few other things in life can.

Good luck on your next MRI in March, DJ.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08