Author Topic: Recurrence of tumor  (Read 4006 times)

JP

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Recurrence of tumor
« on: August 10, 2010, 08:14:17 pm »
I have been diagnosed with a recurrence of an AN tumor.  Anybody been through this before? Looking for any advice and guidance and the right questions to ask. (My 1st surgery was at House in '05. )

Thanks, J 

opp2

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Re: Recurrence of tumor
« Reply #1 on: August 10, 2010, 09:23:19 pm »
So sorry that this has happened. There are a few on here who've had recurrence. There are many of us who pray yearly that we don't (though I don't have my first MRI til Oct 5th). All the best to you as you make your way forward.
Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

iluuvpups

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Re: Recurrence of tumor
« Reply #2 on: August 11, 2010, 07:48:38 am »
I'm sorry this has happened to you.  It must be very disappointing and scary.  I wish you good luck!
Original 1.75cm left-side AN diagnosed Feb 2010
Translab surgery May 27, 2010 with Drs. Kartush and Pieper of MEI
SSD on left side, some facial weakness, tear duct doesn't work
Found I actually had a facial neuroma during translab
Remaining 6mm facial neuroma - watch and wait

Lizard

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Re: Recurrence of tumor
« Reply #3 on: August 11, 2010, 10:53:53 am »
Wow this is not the outcome we like to hear when we have our visits to the tube of gloom, but sometimes even with the "best of the best" doing your surgery the booger still has a chance of regrowth.  I can't personally offer you any experience from regrowth, but as said by others there are a number of people here who have.  Have you searched on regrowth?  That might be a good way for you to start a dialogue with someone who has been through similar circumstances, as I can't remember who off the top of my head.

Hang in there, you will find the best approach for your individual circumstances and hopefully the growth is slow so you have some time to decide and perhaps W&W for a while while getting regular MRI's. 

How large is this regrowth? and what are your symptoms?  I know if I had a choice to do surgery or radiation I would not go under the knife again as it was the hardest thing I've ever gone through in my life...just my personal thoughts on if I ever did have this occur again.
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

Jim Scott

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Re: Recurrence of tumor
« Reply #4 on: August 11, 2010, 02:16:00 pm »
JP ~

I'm always sorry to read about a re-growth, but, unfortunately, although the odds are small, it does happen.  I'm just sorry that it happened to you.  I know that in many cases, radiation is used to destroy the tumor, but I haven't been through a re-growth experience so I hope you'll find the kind of first-hand information you're seeking from our members. 

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.

pjb

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Re: Recurrence of tumor
« Reply #5 on: August 11, 2010, 02:23:35 pm »
Hi, sorry to hear that you have a recurrence after 5 years have you been going for regular MRI's ??  I  just found out sort of by accident that I have some residual after my 1 year MRI and that the surgeons knew a year ago but they told me it was totally removed... Needless to say I am shocked, upset, mad for a year I have been thinking it was gone and now to find out some is still there.... I have no idea what my next step is just trying to get over the shock as I am sure you are as well...

I am hoping and praying that all goes well with yours,

Best Wishes,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

JP

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Re: Recurrence of tumor
« Reply #6 on: August 11, 2010, 04:16:39 pm »
Thanks for your kind words.  I've been getting my yearly MRIs since the 1st surgery.  The new tumor is about half 1cm.  I'll search the site for 're-growth' and see what I can learn.  Thank you again.

JP

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Re: Recurrence of tumor
« Reply #7 on: August 11, 2010, 04:18:13 pm »
I meant '1 cm' not 'half 1 cm'

pjb

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Re: Recurrence of tumor
« Reply #8 on: August 12, 2010, 01:15:42 pm »
Nothing showed on previous the MRI's I know that is probably a silly question otherwise you would have done something sooner... But I am just surprised that it took so long to show up ? As you must have read I posted that one MRI place I went to did not show anything and then the other place did, so it is so important for us to follow up with newer advanced machines.  We have to be diligent with our bodies especially having gone through it before we can not take anything for granted... Thank goodness I went with my gut feelings otherwise it would also be years before I new of the residual.

My prayers and thoughts are with you,


Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

JP

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Re: Recurrence of tumor
« Reply #9 on: August 12, 2010, 08:18:14 pm »
Thanks again for the kind words.   I was encouraged to wait before deciding on treatment to make certain that what was on the MRIs was actual new growth and not scar tissue.  Right now I am researching what questions I need to be asking. 

Kathleen_Mc

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Re: Recurrence of tumor
« Reply #10 on: September 12, 2010, 12:04:07 am »
Yes I had a regrowth. I did not have an MRI until approx. 6 years post-op and it was there then. I have it removed after several years of watch and wait, it wasn't required to be removed but it was growing slowly and I couldn't handle it psychologically so had it removed.
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

 


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