acoopr21's Journey with Leiomyosarcoma

Patient: Endometrial (Uterine) Cancer > Leiomyosarcoma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: almost 6 years ago, Female, Age: 31

  1. 1
    • acoopr21
    • Experience with Leiomyosarcoma
    over 4 years ago
    acoopr21's Avatar

    Laparotomy

    Procedure or Surgery

    Surgery is where my cancer journey began. On March 3, 2011 I went into the surgery suite with the possiblity of having a bilateral salpingo-oophorectomy (BSO), right salpingo-oophorectomy (RSO), or a left salpingo-oophorecomy (LSO). This is the removal of a woman's ovaries and fallopian tubes. I ended up having a LSO, and the removal of cysts off my right ovary. Right before they closed, my OBGYN and the assistant OBGYN noticed a large mass that they thought was a third kidney. Dr. Mann then called a general surgeon, Dr. Vassy, to see if he would come in and take a look at this mass. Dr. Vassy was not in the building at the time and told Dr. Mann to go ahead and close and if they needed to they would go back in at a later time. Dr. Mann ordered a CT scan of the abdomen and pelvis for Friday morning.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Disagree
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  2. 2
    • acoopr21
    • Experience with Leiomyosarcoma
    over 4 years ago
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    CT scan results

    Oh No

    Friday morning I had my CT scan. After my CT scan I was ready to go home and start recovering from surgery. Friday night both Dr. Mann and Dr. Vassy came into my room to share the results of my CT with my mother and me. From the looks of their faces it was not a third kidney as they were thinking. Instead it was a malignant mass that needed to be biopsied that coming Monday March 7. Those poor doctors did not know what to do when they told me and I was laughing. They kept saying "this is very serious and you have to come back Monday for this biopsy, it is very important!" To that my mother kept telling them "she knows, she understands. We will be back here Monday for the biopsy."

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  3. 3
    • acoopr21
    • Experience with Leiomyosarcoma
    over 4 years ago
    acoopr21's Avatar

    Other

    Other Care

    On Monday March 7, I returned to Deaconess to have my biopsy done. I checked into the outpatient surgery area, and waited to be taken to the CT suite. My mother, father, and step-mother were all there with me. We all were brought into the CT suite as they discussed the risks and benefits of the biopsy and if I consented to the procedure and of course I did. As they were explaining how the procedure would be done they informed me that I would be laying on my stomach, which would be very uncomfortable after having been cut wide open about five days before. To my surprise it wasn't that bad, but the bad part was that after taking about seven to eight samples from the back, they wanted me to roll over and they took another seven to eight samples through my abdomen. The reason they took so many was because they could not tell what type of cancer it was and wanted to be sure they got a good specimen. Finally after about the 16 or 17 specimen they decided those would do and I was able to go back to recovery.

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  4. 4
    • acoopr21
    • Experience with Leiomyosarcoma
    over 4 years ago
    acoopr21's Avatar

    Decision Point

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

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  5. 5
    • acoopr21
    • Experience with Leiomyosarcoma
    over 4 years ago
    acoopr21's Avatar

    Loss

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

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  6. 6
    • acoopr21
    • Experience with Leiomyosarcoma
    over 4 years ago
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    Celebration

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

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  7. 7
    • acoopr21
    • Experience with Leiomyosarcoma
    over 4 years ago
    acoopr21's Avatar

    Diagnosed

    Oh No

    Deaconess could not comfirm a certain cancer diagnosis, so they sent the specimens off to Mayo Clinic and they said 'probable leiomyosarcoma'. I went to see Dr. Vassy, the general surgeon for an office visit to explain some options. In between that appointment and the diagnosis being confirmed I had a PET scan. The PET scan showed liver metastasis, with at least 4 spots, and an area on my right adnexa. On March 16, the confirmation was made that I had 'probable Leiomyosarcoma' with liver metastasis.

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  8. 8
    • acoopr21
    • Experience with Leiomyosarcoma
    over 4 years ago
    acoopr21's Avatar

    Choosing my Oncologist

    Decision Point

    In the week of waiting on the diagnosis, we had confided in my PCP, OBGYN, and general surgeon to see who they suggested as an oncologist. Everyone was in agreement that I should see Dr. Anthony Stephens at Oncology Hematology Associates (OHA). So I made an appointment and met with him to discuss options. The whole family, again, was there with me. He basically told us that he had never seen this type of cancer and he did not know how to treat, but he would be more than happy to send us somewhere that had and if they would give him a treatment plan he would follow it to a tee. We immediately said we wanted to go to MD Anderson in Houston Texas. He said okay that's fine we will get a referral in right away.

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