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Diagnosed with Intravenous Leiomyomatosis Diagnosed with Intravenous Leiomyomatosis

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Unread 06-16-2007, 01:52 PM
Diagnosed with Intravenous Leiomyomatosis

Hi all! First, I want to say what a help this web site has been. I am looking forward to perusing it more now that I am post op. Anyway, I had my TAH on June 13, 2007. My Gyn said my insides were the worst mess she has ever seen! Thanks! Besides the 2 fibroids that she was originally going in for, after removing those and my uterus, she found an addition tumor. One she has never seen before. While I was still in surgery, she sent a piece of it to pathology. It is apparently an Intravenous Leiomyomatosis. A very rare tumor that grows inside the veins. I will have to follow up with a Gyn Onc eventhough I have been reassured this is not cancer. I am scared to death however! Has anyone been diagnosed with this rare intity? I would love to hear from you. Thanks!

P.S. I just got home today and I love my Swelly Belly Band!

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Unread 06-16-2007, 03:55 PM
Diagnosed with Intravenous Leiomyomatosis


Welcome home! So sorry to hear that things were a mess. I know you're glad the surgery is over. It's your time now - rest and let things heal!

I did a google search, and found the following:


Sounds benign - but let us know what the doc says, ok?

Take care,
Unread 10-26-2007, 05:30 PM
Diagnosed with the rare fibroid

Hi, I just wanted you to know that I also was just this minute diagnosed with the intravenous Leiomyomatosis as well. My doctor told me that it is never cancerous, however it is rare. She also indicated that if the fibroid gorws beyond the uterus into other veins it can cause issues. I was lucky and mine was confined to the uterus. Did you ever get any additional information when you went to the oncologist? Hope my Doc is correct.

This web site is wonderful. It was the first place I went after the call. Thank you~
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Unread 10-26-2007, 10:39 PM
Diagnosed with Intravenous Leiomyomatosis

Hey...another rare sister! I thought I was in this alone. Anyway, mine apparently was confined to that area just outside of my uterus. It was in my veins...and would continue to metastasize if not removed. Also, I can't take anything with estrogen...even natural such as soy or flax seed. It was 100% hormone receptive so if there was only one cell left, the estrogen would continue to feed it and would have grown and metastasized into my vena cava. Still don't know much more about it. I am just trying to get through menopause without any hormone replacement and it's quite miserable. Please feel free to write back. I am interested in hearing where yours was and what your prognosis is and whether or not you can have hormones.

Thanks for replying! Cathy
Unread 10-27-2007, 12:49 PM
Diagnosed with Intravenous Leiomyomatosis

Thanks for sending a reply. I really don't have much more info yet. I will be going in for my post op appointment next week. I will ask additional questions at that time and let you know what I hear. When I was on the phone with my doctor yesterday she indicated that mine was contained in the uterus and didn't start to grow outside yet. Maybe I was lucky. I waited 3 years before having my surgery hoping I would enter menopause and the fibroids would shrink. I finally took the plunge after a second opinion. I guess it was a good move.

I will let you know if I hear any more. I will definitely be asking about estrogen, menopause, etc.

Unread 10-27-2007, 01:25 PM
Diagnosed with Intravenous Leiomyomatosis

My situation is almost exactly like yours. Put off surgery for 5 years and doc monitored fibroids. Las sonogram came back with a giant mass that was not there last year, doctor sent me for MRI with contrast, results were NOT ovarian cancer but it might be a rare cancer (1% chance). She wrote the name down
Leiomyomatosis. Googled it and did not like what I read. Very very rare. Mine turned out to be a very large double cyst but I can fully emphathize with you.
I'm sure it will be benign. I think the doctors tell you the worse case because of lawsuits.

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