Hormone therapy with Uterine Leiomyosarcoma OK or not?

Posted by apple321 @apple321, Nov 16, 2023

My ER/PR test result :
ER 50% positive
PR 85% positive

I have consulted with a sarcoma specialist in Duke University Hospital, NC , he said NCCN guidelines do not strongly recommend hormone therapy for "Completely Resected Uterine LMS". Thus he don't agree with me taking any aromatase inhibitors.

Does anyone has the same experience ?

Thanks.

Background:
Diagnosed with the high grade Uterus LMS, stage 1B, not metastatic, and have the total hysterectomy surgery in Aug 2023. My oncologist said no therapy is need to be treated currently, but ordered CT scan every 3 months in the first 2 years.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

joan450 | @joan450 | Nov 17, 2023

I had my second surgery for Myxoid leiomyosarcoma Oct. 17, 23. There was/is no estrogen, so I am not taking a blocker - astrolazone (sp?). I was t dress taking it after my first surgery, Dec 1, 2022, but clearly, it didn’t work.

cjacobs99 | @cjacobs99 | Nov 22, 2023

There is a lot of data that supports taking AIs if your tumor shows ER/PR positivity, in fact the higher the number the more likely it is to work.

I’ve been on AIs since November 2022 , after finishing 6 rounds of Doxorubicin. The chemo kept three lung nodules from rapidly growing, and after I believe the AIs helped to prevent more nodules popping up. I was able to treat all three nodules by targeted radiation and one ablation.

In short, yes, I would definitely push for an AI especially since your number is high. I tried there different kinds until I found one right for me. I’m taking 5mg letrolzole everyday. More info on LMS can be found at LMSDR.org and join the Facebook support group.