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endolymphatic stromal myosis anyone out there? endolymphatic stromal myosis anyone out there?

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  #1  
Unread 09-15-2001, 03:18 PM
endolymphatic stromal myosis anyone out there?

Kinda scared, I had a fibroid myomectory on 9/4, and never in my wildest dreams did I think that IT would turn out to be cancer, a very rare type. I am scheduled for a TAH BSO from stem to stern surgery on October 15, my son's thirtieth birthday and the due date for his first child. Has Anyone out there been treated for this, and can let me really know the odds. DR, the best at Dartmouth Medical Center, wrote the text on this, and he seems too happy for me to have this. (my perception).

Thanks for a wonderful forum. I have little experience expressing myself online. I have started a cancer journal and it seems to help me get through the dark.

Braiding Lady
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  #2  
Unread 09-15-2001, 04:01 PM
endolymphatic stromal myosis anyone out there?

Hi Leona,
Welcome!!
I am so sorry to hear of your cancer diagnosis. I have not heard of this, but hopefully one of the ladies here may have some information for you.

Have you searched this on line Leona? I find 2 sites very helpful when looking for info on things here. First I always search the site here, which I did on this, and there are only the 2 posts of your on it.
So....you could try www.webmd.com as well as www.google.com Those seem to be wonderful search engines, and I find that google has a great deal of information.

I think its wonderful that you are keeping a journal. I wish I had done that. My sister who came to every appt. and chemo treatment with me has kept alot of notes and things, so when I am trying to think of when something happened during my ordeal I ask her and she checks her notes. But I think its great what your are doing.

I wish you the best, and please keep in touch with us. You will find a great deal of support here Leona as you go through this.
Sending big hugs!!
Maria
  #3  
Unread 09-15-2001, 05:58 PM
endolymphatic stromal myosis anyone out there?

Leona,
You came to the right place to bring your fears and all your feelings. You can know that even though we don't have the same thing, we know what you're feeling because someone here has felt it too.

I did some research around the Web. I think your doctor seems happy because it is so treatable, not because he's callous about his specialty. In fact, if it is Stage I endolymphatic stromal myosis, a TAH/BSO brings a 100% cure rate. You can't get better than that.

I too had a rare stromal cancer (ovarian). Unless it's a late stage, they are routinely cured with hysterectomies. I didn't even have to have chemo or radiation, just lots of follow-up to keep an eye on things.

Nonetheless, a cancer journal is a wonderful thing to do. Even the word starts to change your life and for sure the surgery does too. It's good to process that on paper.

You express yourself beautifully.

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