• Leiyomysarcoma

    Asked by Franniemac123 on Friday, September 17, 2021


    Hello everyone! Anyone here have stage 4b uterine leiyomysarcoma? I'm almost six years in, metastasized to my lungs and most recently my liver, no new treatment available. Just wondering how you are handling everything. In February my oncologist basically sent me home, with no hope, kinda like, "nice knowing you but sorry". I've been living life, very active, feel great for the most part. I'm kinda lost as to what to do with myself. It feels like I'm supposed to just sit here, waiting for death. Which I am by no means doing but I don't know what to do now.

    2 Answers from the Community

    • kaki54's Avatar

      Have you gotten a second opinion? Can you get to MD Anderson? Maintenance therapy? Clinical trial?

      29 days ago
    • Cherry63's Avatar

      What a hard situation! Six years is a long fight so I’m assuming you trust your doctor. My mom was an RN and in her cancer struggle later in life she also voted for quality of life…as does my daughter who works in the medical field now. (Currently spending lots of time in covid ICU’s at work). Since my ovarian cancer that had spread about 9 years ago I have learned I have Lynch Syndrome. It is a mutant gene that I found after a deeper BRCA testing after being diagnosed with colon cancer about 5 years ago. Being adopted the state told my biological family-I do not know them. And telling my kids who were having their own kids by then was very hard. My son also was found to have Lynch. Any time you are diagnosed with cancer you can have PTSD with any twinge of your body. Even with different diagnosis I can relate to you. I have anxiety now at every doctors appointment and testing that I will be told I’m in your current position. I’m not sure if you are a worrier like me! Those who have not been through something like this may say, “we could all die in a car crash tomorrow so don’t worry.” But it doesn’t really apply. Sometimes anymore I just like to have someone validate my thoughts. You cannot help how you feel. I can tell you are strong. Do what makes you happy!

      27 days ago

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