JAJO25's Journey with Pleomorphic Undifferentiated Sarcoma ...

Patient: Sarcoma - Adult Soft Tissue Cancer > Pleomorphic Undifferentiated Sarcoma (also called Malignant Fibrous Histiocytoma)

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 6 years ago, Female, Age: 55, Stage III

  1. 1
    • JAJO25
    • Experience with Pleomorphic Undifferent...
    over 4 years ago
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    Lost loved one

    Loss

    My journey really started before I really even knew it had started. My mother was I'll with an auto immune disease and was in her final stages the last 6 mons of 2010. I was so involved with her care and busy traveling back and forth from my home to hers to Mayomin Rochester while trying to stay abreast my new job position. My stress level was high, I was losing my mom. She passed on Oct 25 2010 . 2 weeks later approaching the holidays and in deep grief, I noticed a lump on the back of my left thigh. Sure it was just a tight muscle, but cautiously concerned it could be a blood clot from all the travel I had one of the Dr at the clinic I work in take a look. Without any alarming concern he recommended I have an ultrasound thinking it was more like a hematoma but I didn't have any kind of injury to suggest that. My husband and I are both in the medical field and work closely with many area Drs, he in a raidiology dept and I in a family clinic. I managed to get my ultrasound that day by a coworker with my husband looking over. The look on their faces within the first 5 mins was not what I was expecting. This was not going to be good. I found myself on the MRI scanner within the hour.

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  2. 2
    • JAJO25
    • Experience with Pleomorphic Undifferent...
    over 4 years ago
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    Diagnosed

    Oh No

    Since we are friends with the radiologist that was reading my MRI and my husband works beside him everyday, he was in the reading room the minute the MRI was processed. It confirmed his suspicion....I had a tumor in my muscle that was likely a sarcoma. What? How can it be? I had no pain no symptoms, I was young and healthy! I needed a biopsy and an oncologist. Where, who?

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  3. 3
    • JAJO25
    • Experience with Pleomorphic Undifferent...
    over 4 years ago
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    Where to get treatment?

    Decision Point

    Sarcoma is rare. Drs are few. Treatment is specialized. Luckily, are medical contacts were able to help us find a sarcoma oncologist in our area.mShe agreed to meet us after hours in her clinic right away to look at my MRI she confirmed the highly suspicious tumor as a probable sarcoma. It was large and it was deep and would require a large surgery. There are only 2 Ortho-oncologist surgeons in the Omaha NE area, one at each university. I needed a biopsy ASAP. The surgeon she preferred was out for the week so an appt was made for the next week but we opted to meet with the other dr as well before then. We had him do the punch biopsy and he gave recommendation to radiated to shrink the tumor and then have surgery later to remove it. The next week when we met with the other surgeon we had a confirmed diagnosis but not a type. This Dr recommended immediate surgery to remove the entire tumor which he felt he could do with a wide margin and maybe prevent the need for radiation. On dec 8 2010 I had a 14 cm tumor removed along with my entire hamstring muscle from attach point to attachment point. The visual is a scar from the top of my hip to the back of my knee. Pretty!

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  4. 4
    • JAJO25
    • Experience with Pleomorphic Undifferent...
    over 4 years ago
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    Surgery

    Procedure or Surgery

    The hamstring controls much of the backward lift of the leg and the stopping of the forward motion of your leg as well as some of the lifting power of the lower leg and foot. I was missing that piece. Amazingly I could walk fairly well with little assist the day after surgery. It took months to train new muscles to take over certain movements and some things I either do a different way or not at all. I can not run without looking like the Hunchback of Notre Dame, but I still have my leg and I can walk normally for moderate distances. Imwas allowed to heal and strengthen for about 6 weeks before moving on for chemo. So in the mean time I was whisked in to have a port placed.

    Went as Expected: Agree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Neutral/NA
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  5. 5
    • JAJO25
    • Experience with Pleomorphic Undifferent...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    In Jan 2011 my surgical sight had healed well and I needed to begin chemotherapy. By now we knew that I had an aggressive type of MFH sarcoma. It was stage 3 high and high grade with a high potential for metastisis. While the data for the effectiveness of chemo for sarcoma is limited it is recommended more with the higher grade and staged rumors. My husband and decided we can not bear to have made a choice against it if the cancer came back so we opted to do all we could to prevent that. I was put on high doses of the MAID recipe, on one week off two and repeat for 4 rounds. It is a brutal routine. I was the first one to arrive in the morning at the cancer center and the last one to leave. They have come along way with nausea medicine though so even if I felt sick and lousy, I didn't vomit. I actually GAINED weight much to my disliking. They pumped me back up at the end of each chemo week with a shot to boost my blood counts

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  6. 6
    • JAJO25
    • Experience with Pleomorphic Undifferent...
    over 4 years ago
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    External radiation

    Radiation

    After chemo my blood counts were essentially nil so I was given another short rest period before starting radiation. Though my surgeon had said he didn't really think Inwould need it as he had removed the whole muscle that encased the entire tumor with wide margin. But my oncologist and nearly all the litierature as well as the radiation oncologist all supported it as the front line in treatment to assure nothing was left behind. Since sarcomas have a high reoccurance rate as well as metastisis , it made sense to us to proceed with the radiation. A mold of my body had to be made withnme laying on my stomach and my good leg bent up as high as possible and the bad leg twisted and laid just so. I laid there in that crazy thing 20 mins a day 5 days a week for 7 weeks. It was exhausting.

    Painless Experience: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  7. 7
    • JAJO25
    • Experience with Pleomorphic Undifferent...
    over 4 years ago
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    Side Effects

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

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  8. 8
    • JAJO25
    • Experience with Pleomorphic Undifferent...
    over 4 years ago
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    Celebration

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

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  9. 9
    • JAJO25
    • Experience with Pleomorphic Undifferent...
    over 4 years ago
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    Procedure or Surgery

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

    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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  10. 10
    • JAJO25
    • Experience with Pleomorphic Undifferent...
    over 4 years ago
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    Other Care

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

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