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Jamie's Story - Uterine Cancer

The most important this I want to tell others is to be assertive! If something does not feel right in your body, keep asking questions. Don't just assume "this is normal". If one doctor can't find the answer, request a second opinion. If there is possibly cancer, push for a biopsy. Don't rely solely on your pap smear. Don't wait if something feels wrong!

I have carcinosarcoma of the uterus & cervix. I had my yearly exam and pap in May 2022, and it looked normal. In June 2022 my period never really stopped. I continued to have weird discharge and it looked like I was spotting throughout the 3 weeks until my next period. I reached out to the doctor asking if this was a "perimenopausal symptom." She said maybe, but not for sure. I could get an ultrasound if I wanted to be sure. I chose to wait a few weeks to decide.

In July my period was getting heavier than normal and my spotting between periods continued. There were very few days that I didn't have spotting. I decided to get that ultrasound. The ultrasound results found a 5 cm mass that was labeled a fibroid. I was told it was "noncancerous" but I could go to the gynecologist to discuss surgery "If I wanted to." I said "yes" to seeing the gynecologist.

She discussed the option of having a hysterectomy in the fall or the option of waiting until the summer since I was a teacher and would have to be out of school 6-8 weeks. I expressed my concern as I was having very heavy periods by this point. I was soaking through heavy duty pads regularly. She asked a couple more questions and then requested a quick biopsy just to make sure there was no cancer. I quickly agreed. She started the exam and immediately her tone of voice became very serious. She said, "I'm so glad you advocated for yourself when things weren't right in your body. Something is definitely wrong, and I think you likely have cancer. I will send this biopsy off STAT." She described loose "friable" tissue floating around in the cervix and she couldn't even get to the uterus. This came back as a rare type of cancer that's actually two cancers together. I had carcinosarcoma.

Once the cancer diagnosis was obtained, I could make an appointment with the Gynecologic Oncologist. I saw her the next week. She immediately talked upcoming surgery and treatment but then asked to do an actual exam. When she did the quick exam and saw the tumor was blocking the whole cervix she stopped. That quick exam triggered very serious bleeding and she told her nurse to clear her morning schedule. She needed to do emergency surgery. She said I was one bleed away from a "critical bleed".

After surgery I was given the label of U3C1. The tumor was almost 10 cm in diameter at its largest point. I was given time to heal from the radical hysterectomy, pelvic washing, and lymph node removal. There was cancer in some lymph nodes. I then had 6 rounds of chemo, one every 3 weeks. It took me a full week to recover from chemo each time. I then had 27 radiation treatments.

I finished this treatment on May 8, 2023. I immediately got sick with COVID at the end of treatment. After recovering from COVID, I felt good. My next PET scan, in August I was shocked to see what looked like a terrible recurrence in 5 places, but all the biopsies were negative for cancer. I went to many specialists before they determined I have sarcoidosis. I got this diagnosis in November 2023. This inflammation was showing up on the scans and looked like cancer.

I am now on Humira and it seems to be working. Most of the inflammation is now gone. I feel a little tired, but otherwise good. I'm working on making memories and living my best life. My cancer may stay gone or it may come back. I was told I had at least 50% chance or recurrence. I have exams and scans every 3 months to monitor for recurrence but am doing well right now and as far as we can tell, cancer has not returned!