Melzie21's Journey:

Survivor: Endometrial (Uterine) Cancer > Leiomyosarcoma

Patient Info: Finished active treatment more than 5 years ago, Diagnosed: over 11 years ago, Female, Age: 32

  1. 1
    • Melzie21
    • Experience with Leiomyosarcoma
    about 5 years ago
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    Began Feeling Weak & Out of Breath All the Time

    Oh No

    At 21 years old, I had always been 100% healthy. I was very athletic and a good body size. The last time I was in the hospital was the day I was born. But lately, I had been feeling weak and tired. As the weeks passed, it got worse. Finally one day, after I had to sit down to rest while in the middle of putting my clothes from my washing machine to my dryer, my roommate convinced me to go to the Student Health Center. All signs pointed to mono. It was winter, my throat was sore, I had constant hoarse voice, no energy, and it had been going on a few months. The doctor at Mizzou's Student Health Center said it sounded exactly like mono. She drew blood and sent me home saying she'd call with my results. Just as I had walked into my house, my doctor called back saying my hemoglobin was dangerously low (5) and I needed to head to the hospital and that I was being admitted. I cried and called my parents who immediately hoped in the car. My roommate went with me, I got checked, and put in a room. Two hours later, my mother arrived. Over the next 48 hours, I received two blood transfusions. We could not determine the cause or source of blood loss. It was not showing up in urine or stool samples. My hemoglobin levels were holding around 12 so they discharged me with instructions to return after the weekend for an upper endoscopy to check for bleeding ulcers or possibly a rip in my esophagus.

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  2. 2
    • Melzie21
    • Experience with Leiomyosarcoma
    about 5 years ago
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    Surgery

    Procedure or Surgery

    Less than week after being discharged after my blood transfusions, I underwent an upper endoscopy. It was then that a tumor, about the size of a golf ball, was found in my stomach, attached right at the top near my esophagus. The bottom of it was ulcerated and bleeding and it was confirmed this was the cause of my blood loss. I was set up to get surgery there in two weeks. While in recovery, a nurse pulled my mother aside and told her I should not have the surgery done there. That they had never seen anything like this. She told my mother to take me back home to St. Louis, Missouri (where we are from) and find a doctor at Barnes-Jewish/Washington University. They are a top ranked hospital with amazing surgeons. So my mother took me home and we found a thoracic surgeon. He did an upper endoscopy and told us "I'm sorry, but I feel this is beyond my expertise." We began to get scared and sought out the BEST there was. We were referred to another doctor who then did his own upper endoscopy. A small biopsy was taken and we were told the tumor was benign and that that would be 100% confirmed once it was removed.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  3. 3
    • Melzie21
    • Experience with Leiomyosarcoma
    about 5 years ago
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    Surgery

    Procedure or Surgery

    We then scheduled an appointment with one of the best gastrointestinal surgeons there was. He said he would have to remove my entire stomach and would create a stomach out of a piece of my colon or intestines. He was also afraid he might have to crack my chest. On February 14, 2006, I went in for surgery. Luckily, my ribs did not have to be cracked and my surgeon was able to save two-thirds of my stomach. Unfortunately, when they removed the tumor and cut it open, my surgeon said he had never seen cells dividing at such a rapid rate and he was almost 100% positive this was in fact malignant cancer. I spent 14 days in the hospital recovering. I was not allowed to use my abdomen for about 10 weeks and it was a very, very rough recovery for me. While in the hospital, we were told this might be a GIST (gastro-intestional stromel tumor) and it could simply be treated with a Gleevac pill. Things turned for the worst when just days before I was to be discharged, my surgeon came to tell me that my tumor's C-kit stain came back negative. After sending my tumor away to other institutions (because they just could not believe the results) it was confirmed that I had Leiomyosarcoma (LMS). We had never heard of this cancer but knew it couldn't be good. We were assured we were under the best care and that he would get me the best oncologists they had. We quickly learned this cancer is very rare and very serious. My cancer does not have stages simply because of it's severity. The tumor did test highest grade and that was alarming. My doctor presented my case to the board of experts he sits on and him, along with other experts devised my plan. Usually with LMS, removal is the only treatment. But with my tumor being such a high grade, they had reason to believe that cancer cells had entered my blood stream. Because I am young and could handle treatment, they decided to hit me with one of the toughest regiments.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  4. 4
    • Melzie21
    • Experience with Leiomyosarcoma
    about 5 years ago
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    Other

    Side Effects

    Recovery was long and difficult. Along with one-third of my stomach being removed, I also had the very bottom portion of my esophagus removed. This meant I was now missing my cardiac sphincter, which keeps the acid (and food) in your stomach. I now suffered some horrible acid reflux which has resulted in me having to get an upper endoscopy at LEAST once a year to check for pre-malignant esophageal cancer, which I am now at a risk for the rest of my life. Through surgery, the nerves in the esophagus got a little screwed up and when I eat, my esophagus doesn't function properly. Food gets stuck and will slowly slide down on it's own or I will have to dislodge it on my own.

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  5. 5
    • Melzie21
    • Experience with Leiomyosarcoma
    about 5 years ago
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    External radiation

    Radiation

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

    Painless Experience: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Neutral/NA
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  6. 6
    • Melzie21
    • Experience with Leiomyosarcoma
    about 5 years ago
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    Eating problems (anorexia)

    Side Effects

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

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  7. 7
    • Melzie21
    • Experience with Leiomyosarcoma
    about 5 years ago
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    Reproductive Endocinologist

    Other Care

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

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  8. 8
    • Melzie21
    • Experience with Leiomyosarcoma
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

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

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  9. 9
    • Melzie21
    • Experience with Leiomyosarcoma
    about 5 years ago
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    Other

    Side Effects

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

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  10. 10
    • Melzie21
    • Experience with Leiomyosarcoma
    about 5 years ago
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    Hospitalization

    Other Care

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

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  11. 11
    • Melzie21
    • Experience with Leiomyosarcoma
    about 5 years ago
    Melzie21's Avatar

    Surgery

    Procedure or Surgery

    Upper Endoscopy

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Strongly Agree
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  12. 12
    • Melzie21
    • Experience with Leiomyosarcoma
    about 5 years ago
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    Remission

    Celebration

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

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  13. 13
    • Melzie21
    • Experience with Leiomyosarcoma
    about 5 years ago
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    Cardiologist

    Other Care

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

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