Myxofibrosarcoma

Stompson
Stompson Member Posts: 1 Member
edited January 2024 in Sarcoma #1

Hello I'm new here. Sitting at home recovering from surgery to remove a lump from my hip. It came back to be high grade myxofibrosarcoma. I'm 41 and worried, not going to lie. Anyone else know what my family and I have ahead of us or going through it?

Comments

  • aniak
    aniak Member Posts: 1 Member
    #2
    https://csn.cancer.org/discussion/327343/myxofibrosarcoma

    Witam Stompson, w styczniu 2023 usunięto u mnie guz tluszczaka na lewym ramieniu, jak się okazało z badania histopatalogicznego był to guz myxofibrosarcoma G3. W lutym 2023 przeszłam kolejną operację poszerzenia marginesów. Dwa miesiące później przeszłam radioterapię - 33 frakcje. Na dzień dzisiejszy jest wszystko ok. Mam badania kontrolne co 3 miesiące i TK co 6 miesięcy. Ma nadzieję że u Ciebie jest już wszystko w porządku. Pozdrawiam.

  • CSNSupportTeam
    CSNSupportTeam admin, CSN Member Posts: 215 Member
    #3
    https://csn.cancer.org/discussion/comment/1711929#Comment_1711929

    Hi Aniak,

    My name is Ken and I'm one of the support team members here at CSN. I just wanted to point out that our site is only available in English.

    Best,


    Ken

    CSN Support Team

  • gerritg
    gerritg Member Posts: 1 *
    #4

    Not much going on in this rare cancer forum. You can read my bio for background, but I have MFS again, quit all social media, then found this site.

  • GoToHellCancer
    GoToHellCancer CSN Member Posts: 1 Member
    #5

    Hi! My mom had a 30cm (!!) Myxofibrosarcoma removed from the back of her left leg. It started as a small lump in March 2024, so she waited 6 months to finally get it checked out because she could not sit. It was misdiagnosed as a "spontaneous hematoma" (as they often are). She had 2 drain bag proceduress...and I told the general surgeon something was off and to do an MRI to see if it was a soft tissue tumor. "Oh, it's not that. Those are very rare!". We eventually got the MRI, but at that point it was October 2024. We could not see a soft tissue surgeon until late November because South Carolina only has TWO surgeons that specialize in soft tissue tumor surgeries. Ours immediately wanted Radiation, but that didn't start until 3 weeks later (after cast model). So now we're in late February but surgeon will not operate until 3 weeks after Radiation. Hoo boy! At this point, it's been a year when surgery date arrives. The tumor was 40% necrosis (dead tissue), but literally the size of a football!

    The surgery went well and all was good until another lump was found on same leg, plus it has metastisized to her right lung. She is starting Votrient, which is supposed to do wonders with these horrible soft tissue sarcomas. I feel like everyone took too long. I begged her to get it checked earlier. Sudden lumps in our bodies is NOT NORMAL!

    My prayers are with you. You are not alone.

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