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diagnosed with desmoid tumors in the abdomnial wall


Forum: Women's Health

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  #1  
November 18th, 2006, 11:59 AM
Mega Super Mommy
Join Date: Dec 2004
Location: New York
Posts: 4,307
I was diagnosed with desmoid tumors last month, just had my second surgery to remove all of it. Very rare, affects 1-2 per 1 million people. The tumor itself is benign, but it is a locally recurring tumor that grows only to attach to an organ or the spine. I caught it early cause it was growing on nerves and was painful. I hve to go every three months to monitor, and they do not know if it is all out with this surgery, I have to wait for pathology to come back form emory in georgia (they are specialists in this tumor).

I feel so helpless and overwhelemd right now. I know it can be worse, but it really just sucks right now.

If anyone knows somebody with this, or has it, please feel free to strike up a conversation with me, I am itching for info and there is not too much out there!

Thanks.

http://www.dtrf.org/dtrf_aboutdesmoids.htm
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  #2  
November 20th, 2006, 06:12 AM
~.Sally.~'s Avatar Platinum Supermommy
Join Date: Jan 2006
Location: UK
Posts: 7,822
Hi and welcome to the board.

Sorry to hear your news. I admit I had never heard of your type of tumour, I hope that the surgery has removed it all. Your feelings are totally normal and you may feel like that for sometime, hopefully this board will help and support you. Please feel free to pm me or come to this board to vent your feelings, you may find someone else who has your type of tumour although it is obviously very rare.

x

P.S. Your two girls look adorable.
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  #3  
November 20th, 2006, 09:36 AM
Mega Super Mommy
Join Date: Dec 2004
Location: New York
Posts: 4,307
Thanks for responding, I feel like I am on pins and needles until the biopsy comes back. I don't know if I can go through this again now, I mean 3 major operations in 6 weeks? I can only suck it up so much, ya know!

But thanks for answering, I will keep up hope that someone will know something about it to put my mind at ease!

And your little Alyssia is a cutie pie, I want to squeeze her cheecks!!\

**ETA because I cant spell!
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  #4  
November 21st, 2006, 01:12 AM
~.Sally.~'s Avatar Platinum Supermommy
Join Date: Jan 2006
Location: UK
Posts: 7,822
How long have you to wait for the results?

You sound like you have been through a lot in a short period of time and as well as waiting for results you have so much to recover from. I would think you have been through all the sites on the internet, but if I find anything that looks interesting I will post it on the board for you.

I hope all goes well for you and the waiting is the worst thing, there will be not a lot I can say to make it easier but keep your chin up and let us know how you get on.

There might be someone else on JM that has had a similar thing and if they have hopefully they will pop by.
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  #5  
November 21st, 2006, 11:39 AM
Mega Super Mommy
Join Date: Dec 2004
Location: New York
Posts: 4,307
Thanks a lot! I have to wait at least 2 weeks, so as of tomorrow, one week down. I am hoping it is not going to be longer because of the Thanksgiving holiday, that would really drive me to drink!!

I will keep checking in and hopefully hook up with someone who has, or knows someone who has it. That came out wrong. I hope no one else has this. I hope I find a JM doctor who knows all about this!!!
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  #6  
November 30th, 2006, 07:13 AM
~.Sally.~'s Avatar Platinum Supermommy
Join Date: Jan 2006
Location: UK
Posts: 7,822
Hi Hun,

Have you got your results yet?

Hope you are doing OK.

x
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  #7  
January 26th, 2007, 07:06 PM
Regular
Join Date: Jan 2007
Posts: 2
Quote:
I was diagnosed with desmoid tumors last month, just had my second surgery to remove all of it. Very rare, affects 1-2 per 1 million people. The tumor itself is benign, but it is a locally recurring tumor that grows only to attach to an organ or the spine. I caught it early cause it was growing on nerves and was painful. I hve to go every three months to monitor, and they do not know if it is all out with this surgery, I have to wait for pathology to come back form emory in georgia (they are specialists in this tumor).

I feel so helpless and overwhelemd right now. I know it can be worse, but it really just sucks right now.

If anyone knows somebody with this, or has it, please feel free to strike up a conversation with me, I am itching for info and there is not too much out there!

Thanks.

http://www.dtrf.org/dtrf_aboutdesmoids.htm[/b]
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  #8  
January 26th, 2007, 07:18 PM
Regular
Join Date: Jan 2007
Posts: 2
hi, this message is for the girl with the desmoid tumor. not sure if i am responding to the right message but, i too had a desmoid removed from my abdominal wall in 2003 2 months after my 4th child was born. it was fairly large 13cm and they had to remove the muscle with the tumor. had a resection of the abdominal wall and a piece of mesh put in. very painful. i have been doing very well ever since. i was wondering why you had to have 2 surgeries and how are you doing now? i was very depressed for about a year and a half, thinking i was going to die. any illness or bump i was sure was going to kill me. try to tell yourself that worrying is not going to help you. your mind is very powerful. keep telling yourself how strong you are and you will be. i hope all is ok for you now. if you need advice email me @ sorrentino70@aol.com. i don't know if i will be back to this site any time soon. good luck.---angela
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