<40 yr old Leiomyomasarcoma Patients

Dai.
Dai. Member Posts: 1
edited April 2023 in Sarcoma #1

This sucker is hard enough to come by. But most patients seem to be older by the time its found or diagnosed. I'm looking to hear from people who dont fall into the "research study norms" for LMS.

 

I was 31 when my tumor was found. It measured 10cm on a chest CT. It wasn't until after surgery 4 months later that they figured out that it was rooted in my IVC. A couple weeks later the pathology came back as LMS despite the presurgery biopsy having been clean.

 

This sucker came out the size of a baseball. 'Well-encapsulated' was the term my surgeon used, right before he sent me down the road to a radiation oncologist. Said he was also sending me to the chemo kind, but I have yet to hear anything. Already finished 5 weeks of 'air-frying', as my sister has lovingly dubbed the machine.

Honestly I'm concerned about it occuring/recurring in my reproductive organs. Nearly every woman I'm generically related to has had an emergency hysterectomy and been found to have numerous cycsts of one type or another, or (like in my mother's case) to have fibroids of various sizes everywhere. They always mysteriously find these issues after surgery regardless of how much testing or imaging is done for years beforehand. No woman even makes it to her out of her 40's with her uterus intact. Yet I cannot get any of these doctors in Alabama to take me seriously and even do a contrast CT. OR!!! SINCE I'M ALREADY IN THE MRI MACHINE!!!! Just take it a notch lower guys! Please? 

 

All joking aside I've been dealing with this right smack in the middle of the global covid crisis. The disease nearly took me out in mid 2020 before we knew about the tumor. I've lost everything physically and am only beginning to recover. So anyone in or from my age range who's dealing with these things, share your wisdom? 

 

Comments

  • grateful gal
    grateful gal Member Posts: 1
    edited May 2021 #2
    Your age range

    Hi <40 yr LMS survivor, I too am an LMS person although I'm older than you and new to this forum. Have you tried lmsdr.org or their FB page? Most folks there are typical age uterine LMS but there is age diversity and a lot of mutual support on the Facebook group. Best wishes, Linda

  • Oneinabillion
    Oneinabillion Member Posts: 25 Member
    #3
    https://csn.cancer.org/discussion/323310/x

    It’s been 2 years since your post and with LMS that could be a lifetime. If you are still with us which hopefully you are I suggest you get to MSKCC Or MD Anderson asap. Good luck.

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