Hopegirl's Journey with Liposarcoma

Patient: Sarcoma - Adult Soft Tissue Cancer > Liposarcoma

Patient Info: Prefer not to answer/not applicable/unsure, Diagnosed: about 22 years ago, Female, Age: 67, Stage Recurrent

  1. 1
    over 4 years ago
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    Surgery

    Procedure or Surgery

    I have had multiple surgeries to remove liposarcoma tumors from my right thigh and groin. As a result of multiple rounds of radiation, my right femur broke in September and surgery was performed by placing a rod and screws in the femur. I am able to walk, but only with a cane or walker, and pain persists.

    Went as Expected: Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  2. 2
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Chemo shrank the size of the tumor but did not stop a recurrence.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  3. 3
    over 4 years ago
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    cyberknife

    Radiation

    I had cyberknife on two liposarcoma tumors in my right lung, and it killed the cancer. Only 5 days of treatment versus 40 days of more conventional radiation. I will be getting it on a tumor in my thigh in January 2013.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  4. 4
    over 4 years ago
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    ET 743 - a 24-hour infusion every three weeks

    Clinical Trial

    The experience was okay, but the drug didn't kill my cancer.

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  5. 5
    almost 4 years ago
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    Bone fracture or break

    Side Effects

    Last September my right femur broke from having a lot of radiation. Surgeon inserted rod in bone, followed by PT, but still very uncomfortable. Learned in April that the rod had shifted in the bone. Another surgery at the end of May to replace first rod with a wider one. Recuperating and doing PT again, but will continue to need a walker or cane for mobility.

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  6. 6
    over 4 years ago
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    External radiation

    Radiation

    I have had 40 days of radiation 3 times - twice to my right thigh and once to my groin. During my most recent radiation, they used a bolus, with resulted in burning to my skin and pain. Needed to use various treatments to deal with the red and burned skin.

    Painless Experience: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  7. 7
    over 4 years ago
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    Loss

    This person has yet to add any details about this experience.

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  8. 8
    over 4 years ago
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    Many decision points along the way.

    Decision Point

    The problem is that no one doctor or other medical person is coordinating my care. I am the "general contractor" trying to figure it out. When you have an orphan cancer as rare as liposarcoma, it's especially difficult to navigate the system because there's so little information "out there."

    1 Comment