1. < Sarcoma

Leiomyosarcoma vs pelvic masses and getting a diagnosis

Posted by franklin592262 @franklin592262, Apr 17 12:05pm

Hello, I am here trying to find as much information as possible about pelvic masses... particularly lieomyosarcomas. My oldest daughter just turned 24. She's always had rough menstrual cycles, recently she started having pelvic pain, bladder pressure, bowel issues and rectum pains....then she had groin pain followed by soft swelling in her leg, close to her knee. Her primary MD suspected the leg swelling might be a lymphnode, as it was tender and red. He started her on antibiotics and scheduled an ultrasound. The antibiotics took care of the swelling. The US showed her uterus as unremarkable with large complex pelvic mass... 11 cm... differentials were endiometrioma, cystadenoma or cystsacarcinoma.... please forgive any misspelling here.... the report recommendated a CT for better view because visualization was suboptimal. Her blood work for cancer markers was good. She received the results of her CT yesterday.... all other organs are clear, lungs, liver, etc...bowels within normal limits, etc.... no lymph node involvement....but now this radiologists is saying " worrisome for liemyosarcoma". She has an appointment with her gyno monday. I'm just looking for info on this rare cancer. I'm a little confused about her uterus being unremarkable... I was under the impression the uterus was enlarged with this cancer. I'm also unfamiliar with the term " worrisome ".... I've always seen "suspicious" used in these situations, what does worrisome mean exactly? Any info would be deeply appreciated. Thank you

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kenc | @kenc | May 21 3:11pm
In reply to @dwagam0n "I am sorry to hear your daughter is having these issues. I was diagnosed with Leiomyosarcoma..." + (show)
@dwagam0n

I am sorry to hear your daughter is having these issues. I was diagnosed with Leiomyosarcoma in Jan 2023. Most of my left kidney was removed in March 2023 to get the tumor, however, because of a bad diagnosis from local doctors, the nodules in my lungs were ignored for 15 months. I am now stage 4 with over 15 nodules in my lungs. My greatest suggestion would be to go to Mayo for treatment. Locally, they could not even correctly identify the cancer on the biopsy, much less treat the lung nodules at all. Mayo identified the cancer and validated the lung nodules were also Leiomyosarcoma, but that was after it metastasized to my hip. Unless you live in a very large metropolis with excellent hospital research facilities, I would go to Mayo for all surgeries and treatment. I will add your daughter to my prayer list.

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Barnes Jewish Hospital in St. Louis, MO has a Sarcoma Cancer Treatment Center, which I am attending now.

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jeshaw6801 | @jeshaw6801 | May 22 12:17pm
In reply to @dwagam0n "I am sorry to hear your daughter is having these issues. I was diagnosed with Leiomyosarcoma..." + (show)
@dwagam0n

I am sorry to hear your daughter is having these issues. I was diagnosed with Leiomyosarcoma in Jan 2023. Most of my left kidney was removed in March 2023 to get the tumor, however, because of a bad diagnosis from local doctors, the nodules in my lungs were ignored for 15 months. I am now stage 4 with over 15 nodules in my lungs. My greatest suggestion would be to go to Mayo for treatment. Locally, they could not even correctly identify the cancer on the biopsy, much less treat the lung nodules at all. Mayo identified the cancer and validated the lung nodules were also Leiomyosarcoma, but that was after it metastasized to my hip. Unless you live in a very large metropolis with excellent hospital research facilities, I would go to Mayo for all surgeries and treatment. I will add your daughter to my prayer list.

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I will second that mayo is a good choice. Any hospital that is listed as a sarcoma center is the best place to be. The top hospitals for sarcoma are md anderson (Texas), sloan kettering (ny), john hopkins in Baltimore, Mayo clinic (rochester minn) and Cleveland clinic ( Cleveland). Each state has it top hospital and you should look up the best closest to home. Where to look: see lifeRaft for gist; https://nlmsf.org/ for lms

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1 reply
jeshaw6801 | @jeshaw6801 | May 22 12:18pm
In reply to @jeshaw6801 "I will second that mayo is a good choice. Any hospital that is listed as a..." + (show)
@jeshaw6801

I will second that mayo is a good choice. Any hospital that is listed as a sarcoma center is the best place to be. The top hospitals for sarcoma are md anderson (Texas), sloan kettering (ny), john hopkins in Baltimore, Mayo clinic (rochester minn) and Cleveland clinic ( Cleveland). Each state has it top hospital and you should look up the best closest to home. Where to look: see lifeRaft for gist; https://nlmsf.org/ for lms

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I suggest closest to home because it's always better if you can sleep in your own bed

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mb3 | @mb3 | 5 days ago

How is your daughter? Sending prayers

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