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Leiomyosarcoma vs pelvic masses and getting a diagnosis

Sarcoma | Last Active: 6 days ago | Replies (14)

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@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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Replies to "I am sorry to hear your daughter is having these issues. I was diagnosed with Leiomyosarcoma..."

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

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