ShellyL's Journey with Endometrial (Uterine) Cancer

Survivor: Endometrial (Uterine) Cancer

Patient Info: Finished active treatment more than 5 years ago, Diagnosed: almost 10 years ago, Female, Age: 41, Stage I

  1. 1
    • ShellyL
    • Experience with Endometrial (Uterine) ...
    over 4 years ago
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    Misdiagnosed

    Oh No

    The first symptoms I'd had were a clear, "watery" type of vaginal discharge, progressing to a very light pink color. This was happening for approximately a month, then I decided to go to the doctor. I had procrastinated to begin with, because I didn't know what was happening, but it was a little embarassing. Not only because of the discharge I was having, but because as a nurse, I worked side by side with my physician at the hospital every day. (I know, you'd think if I was a nurse, I'd know better... but nurses are human too, and I just wasn't sure what to do. Nurses, like everybody else, put themselves last). Finally I sucked it up, and called and made an appointment. My physician did a sonohystogram (ultrasound looking at the lining of the uterus), and she did a biopsy at the same time. A couple of weeks later, the biopsy came back negative. The physician told me it was due to a hormone issue, so I accepted this, and figured it would be something I would just have to put up with. Months go by, and this discharge progresses to heavy bleeding. I had (false) reassurance, because of the negative biopsy. However, I do remember tellling my husband one night that even though I didn't know what was going on, whatever it was would kill me. I wasn't being over-dramatic, but just had a really bad feeling and sense of doom...

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  2. 2
    • ShellyL
    • Experience with Endometrial (Uterine) ...
    over 4 years ago
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    Money

    Oh No

    After months of this weird discharge / bleeding, I had decided it was now time to go back to the doctor. During the time I'd told my husband that whatever this was, it was going to kill me, and I needed to go back to the doctor. I'd discussed this with my husband, and at the time, money was almost non-existant (was so tight due to bills), I really didn't have the funds to go to the doctor, even though I had good insurance, I wasn't able to pay the co-payment to see a specialist. Looking back, this was a terrible decision, although at the time, I didn't see an alternative. This didn't go on too long (maybe a couple of months), then I made it a priority, and went...

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  3. 3
    • ShellyL
    • Experience with Endometrial (Uterine) ...
    over 4 years ago
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    Diagnosed

    Oh No

    When calling to make the appointment,(This appointment was approximately 8 months after the initial negative biopsy I had had). I had discussed with the nurse the urgency of my situation, telling her that I was bleeding so much, it looked like someone had been murdered. She said "yeah, my periods look like that all of the time". Uuuuggghhh!! Frustrating! I was trying to explain to her that this was not a period! Ultimately, I was able to get an appointment. At this appointment, I was bleeding so heavily, the doctor wanted me to have another ultrasound was done. The ultrasound couldn't be done until that afternoon. So, in the meantime, the doctor handed me some birth control pills for hormones, in an attempt to stop the bleeding. At the ultrasound this time, the endometrial lining was much thicker, and the ultrasound tech wouldn't let me leave until she'd talked to my doctor (the doctor at this time was at the hospital delivering a baby). So, back to the waiting room I went. When the physician returned, she talked with the ultrasound tech, then she called me back. She told me she wanted to do another endometrial biopsy, and not to take the birth control pills she'd given me earlier, because endometrial cancer (if that's what it was), is sensitive to Estrogen, the hormone in the birth control pill. After the biopsy, I was speaking with the doctor in her office. She stated several times she "didn't think it was cancer". A week after the biopsy, I started hemorrhaging (not due to the biopsy, but due to the cancer). While in the ER waiting room, the doctor's office called me, and said they needed me to come in to discuss the biopsy result. I told her I was in the ER, so the nurse went and spoke with the doctor. When the nurse came back to the phone, she said the doctor was coming to the ER. As soon as I got into a room (which wasn't long, because of the hemorrhaging), the doctor came in, and told me. She was shaking her head before she started speaking. In my mind, I was thinking "OK, she's saying 'no' - so it's not cancer." So, when I tuned in, I heard her say "adenocarcinoma"... WHAT? I had to ask her to repeat what she'd just said (although I didn't tell her I wasn't listening to the beginning...) So, the results were endometrial adenocarcinoma, Grade I. Then she explained that even though the results were grade I, because the biopsy was negative only 8 months ago, not even showing hyperplasia, she wanted to get this surgery done ASAP due to the aggressiveness of the cancer. She wanted to get a CT scan to see if it was still contained in the uterus, or if it was outside of the uterus. If it was outside of the uterus, she wanted me to go to a GYN Oncologist to have the surgery done. If it was contained within the uterus, she would do the hysterectomy the next day. At the time, I just wanted it out... I didn't want to wait until I could see another doctor. I had the CT scan done, and the results were that it was contained within the uterus, but they wouldn't know the stage until after surgery...

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  4. 4
    • ShellyL
    • Experience with Endometrial (Uterine) ...
    over 4 years ago
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    Which surgeon should do the hysterectomy???

    Decision Point

    As I said, I just wanted it out... I didn't care if my regular GYN did the surgery. At the time, I actually wanted her to, because I knew her, and I was scared, and I didn't want to have to wait to see another doctor... If I could've went back in time to change my mind, I would've requested the GYN Oncologist do the surgery. My regular GYN did the hysterectomy. She did not, however, remove lymph nodes for evaluation of cancer cells. She did washings to evaluate for cancer cells, but if she'd removed the lymph nodes and they'd been found to be negative for cancer cells, it's possible I wouldn't have had to have had the radiation therapy... During my post-op check up, I asked her what was next. She said as far as she knew, the surgery cured the cancer, and that was all I needed, but she was going to present my case at the next tumor conference at the hospital, and discuss it with the oncologists there, and she would let me know... So more waiting. In the meantime though, I got the results of the staging for my cancer. The pathologist was concerned because the tumor was so large to be a grade I. She said this wasn't normal because a grade I tumor isn't this aggressive. When doing staging, it was determined that my cancer was stage IC - meaning the tumor was greater than 50% through the myometrium, or through the muscle of the uterus. Then, I was notified that the oncologists at the tumor conference decided I needed follow up care with an oncologist, so I was referred to the GYN Oncologist she'd first spoke of doing my surgery... In my time at home recovering, I'd been doing google research on this cancer, and had mixed feelings of having follow up treatment. I kind of wanted it for my peace of mind... but what would it do to me?

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  5. 5
    • ShellyL
    • Experience with Endometrial (Uterine) ...
    over 4 years ago
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    Treatment prescribed

    Oh No

    I went to my first visit with my GYN Oncologist... A very anxiety provoking appointment. The doctor and staff were wonderful. Very compassionate, and didn't make me feel like another number at all. After speaking with my doctor, he stated that because the cancer was more advanced (a large tumor, with much invasion into the myometrium), and since lymph nodes weren't removed for evaluation, I would benefit from radiation. I was to meet with a radiation oncologist, who would provide my care.

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  6. 6
    • ShellyL
    • Experience with Endometrial (Uterine) ...
    over 4 years ago
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    External radiation

    Radiation

    The actual radiation is painless... I was to have radiation treatment 5 days a week for 5 weeks. OK... this isn't so bad. My radiation oncologist was wonderful, and took as much time as I needed to explain everything. She told me how things would go, and was very honest about side effects. Side effects depend on the type of radiation, as well as the part of the body being treated. I was less than thrilled to be looking at the information she gave me, to find that abdominal / pelvic radiation had the most side effects. With my external radiation, I experienced a lot of diarrhea... but my doctor talked to me, and worked with me to help minimize side effects. She told me to start coming with a full bladder, with the idea that a full bladder would help shield some of the intestines from getting radiation, and maybe that would help with preventing some diarrhea. Well... I tried that, and ended up with a lot of bladder side effects. It was very painful, as it was even painful to walk... and to urinate was terrible. I was able to talk with the doctor / nurse practitioner. They prescribed some bladder medication that was slightly helpful, although nothing really helped the bladder spasms. Ouch!

    Painless Experience: Strongly Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Disagree
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