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Uterine Leiomyosarcoma ???? Do I have it or not.

Posts: 1
Joined: Jan 2014


I don't know if I have ULMS or not, but I am so upset I can barely breathe. I have spent months researching only to find old and dismal research.  I have read every radiology and medical journal I can get my hands on. There is nothing left on google I haven't seen and I've spent hours in Sloan Kettering's library accessing whatever research I can get my hands on. Apparently there is no way to really tell until I have surgery and get a pathology report.


I am interested in what diagnostic testing other people had before their surgery.

Did anyone have blood tests for LDH isoenzymes? and if so what were the results?

Anyone have fibroids that showed necrosis and edema over a period of months? All I see in reference to this are people that had necrosis after embolization. I've had necrosis for months. What does that mean. If it's not cancer, is it possible that the necrosis could just eat away the fibroid till it's gone?

Anyone have necrosis that did not results in terrible pain and sent them to the hospital?

Here are my 2 MRI's, the second of which suggest leiomyosarcoma. In 2010 they did not mention cancer. If I have leiomyosarcoma, wouldn't my 2010 MRI's be indicative of that as well? or show the same T2 signal?  If a leiomyosarcoma was never really a fibroid but always a sarcoma as research suggests then shouldn't it have looked like a sarcoma in 2010?  By the way, I also had my doctor run LDH with isoenzymes, which were normal.

Jan 2010 – MRI of pelvis, with and without contrast

Uterus is retroverted in position and measures 8x6x5cm. There is an exophytic myoma anteriorly on the left measuring 4x4x3.8 demonstrating intermediate T1 and heterogeneous T2 signal. This is well circumscribed and demonstrates heterogeneous enhancement. The appearance may be related to degeneration or edema versus a highly cellular myoma. (There is also reference to 2 more small fibroids but with low T2 signal)

Nov 2013 – MRI of pelvis, with and without contrast

The enlarged fibroid uterus measures 8.6cm in length x 9.9cm in AP dimension x 8.8cm in transverse dimension. The uterine volume is 406cc. An 8 x 6.9x 6.9cm heterogeneous ovoid broad-based subserosal mass is seen in the anterior uterine fundus which demonstrates internal high T2 signal, edema and necrosis. This has significantly and disproportionately increased in size in comparison with the remote 2009 CT studies where it measured 3.7 x 3.4 x 3.8cm. Given the heterogeneous high T2 signal intensity, areas of necrosis and disproportionate growth in comparison with the other myoma, leiomyosarcoma should be considered. Then it talks about 2 other small myomas, both subserosal with one pedunculated.

They say my  fibroid is fast growing. Is 1 cm a year fast growing? I just had another MRI a few days ago (Jan 27). There is no new growth and it might actually be smaller. The lastest research says that a fast growing fibroid is not indicative of ULMS in women that have not entered menopause.

I am 51 and premenopausal. My periods are now 25 days apart but I get them every month. I think my mother was 55 in menopause and my hormones are going like crazy. I have always had problems with cysts and too much progesterone.

Can I have this necrosis and not have cancer? I am beyond out of my mind with worry and anxiety.

All my thoughts here and so many questions that no one can seem to answer......



Posts: 12
Joined: Feb 2013

Hi.  I am wondering where you stand at this point.  i'm guessing by now you have some answers although some of the things you said sounded a bit confussing to me.  First I never heard of LMS getting smaller on it's own so that sounds like very good news that it is not LMS or even cancer but what do I know.  The other thing is being a man I obviously didn't have ULMS but a biopsy would be the standard to see what type of cancer it is.  I don't know if they couldn't do one for some reason as you certainly seem very informed I would think they would have discussed this with you.  If you respond on here I will try to come back at some point and respond further but hopefully you are fine and you don't bother coming back. Good luck

Posts: 1
Joined: Oct 2015

My mother was just diagnosed with uterine LMS after weeks of waiting for test results.  My mother is 59 and had a fibroid for years they were watching that wasn't increasing in size and then increased in size and caused pain leading and not able to have bowel movements.  She finally went to the doctor and had an emergency complete hystro and the fibroid had abnormal parts and nercrosis sent to Mayo and came back with LMS a 4inch tumor high grade. No other cancer is seen in the body, one questioning small mark in the lung but too little to do a biospy.  So the options were chemo to decrease chance of reoccurance or nothing just watching.  My mom entered menopause about 1 year ago.  I would suggest seeing an ob who is ob oncologist to get their opinion.


Posts: 1
Joined: Oct 2018

Hi Rshirk,

My mom's situation (today) is remarkably similar to your mom's at the time of your post. Can I ask how is your mother doing?

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