Uterine leiomyosarcoma found in fibroid after myomectomy

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Uterine leiomyosarcoma found in fibroid after myomectomy

by vtravis on Sat Jan 25, 2014 03:03 PM

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If you have a myomectomy and cancer is found in a fibroid, then what? Do you go back and have a hysterectomy? Might a myomectomy with wide margins around the fibroid end the issue, if the sarcoma has not progressed, just was well as a hysterectomy? Hysterectomy is the rule of thumb for everything, but what about those who have had myomectomy.

RE: Uterine leiomyosarcoma found in fibroid after myomectomy

by Sharon_in_San_Francisco on Thu Jun 26, 2014 02:27 PM

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I had a myomectomy - turned out to be leiomyosarcoma (LMS).  Yes - they recommend a full hysterectomy - you may have more LMS there.  Surgery is the most effective treatment we have.

See www.LMSdr.orgfor LMS resources.

RE: Uterine leiomyosarcoma found in fibroid after myomectomy

by acg1979 on Wed Dec 04, 2019 01:47 PM

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This is my situation right now EXACTLY! I was just diagnosed with a uterine sarcoma that my doctor waited for months to operate on him because he thought it was a fibroid and I was thin sent to a gyno oncologist who I just met with yesterday and she feels like it's very important to proceed with the hysterectomy as soon as possible, because I'm still in stage one. And I'm trying to look all over the Internet to see if it's at all possible for me to keep my ovaries because I'm not ready to go into menopause. It was bad enough to face the reality of me never having my own family, had the emotional rollercoaster of going through menopause on top of that? Oh no. I can't do it.

RE: Uterine leiomyosarcoma found in fibroid after myomectomy

by Sharon_in_San_Francisco on Thu Dec 05, 2019 04:14 AM

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Hi - there are a few hundred women with uLMS - uterine leiomyosarcoma where it was thought to have been a normal fibroid but was LMS. 

PLEASE ask the doctor to order hormone RECEPTOR test on the tumor they removed. If highly positive for estrogen or progesterone receptors... it means estrogen makes the cancer grow. You want to stop all estrogen. Even after menopause, you want to take an estrogen blocker... called aromatase inhibitors. Read about uLMS and estrogen here: https://lmsdr.org/uterine-leiomyosarcoma-ulms/

Please email me for a lot more info... I am an 18 year, stage 4, uLMS survivor. I have not had any tumors for the last 14 years after I got my ovaries out and started an estrogen blocker. I've never had chemo or radiation... just surgeries and the estrogen blocker.

Sharon  2taikomom@gmail.com

www.LMSDR.org

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