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Carla's Story - Uterine Cancer

I had a day of severe pain in my right ovary. Since it went away, I made a mental note of it and that was about all I did at that time. Several months later I was able to get on Medicaid, so I asked the doctor to see if I had a cyst or fibroid or something that was going on. She did a transvaginal ultrasound and did not find anything concerning, especially since at this time I was believed to be in perimenopausal stage. My primary care physician did a pap smear, and it came back abnormal but she said I did not have HPV so she had no concerns.

About a year later it just so happened that my pastor's wife mentioned to me that she had had non-stop bleeding for about 3 months, and she was going to the doctor to find out what was going on. I don't think they actually followed up on that for her, but they did find out that she had breast cancer. Not very long after that I started noticing that every time I wiped from going to the bathroom I had a pink tinge on the toilet paper. I thought I should keep track of this since the pastor’s wife had experience the same thing and was seeing her doctor because it hadn't went away for her. I kept jotting it down on the calendar and moving on in life. After what I thought was a month of this very light constant bleeding, I got the calendar out and noticed that it had actually been 2 months.

I called my primary care physician and said I wanted to see a gynecologist. She made the referral to the hospital nearby, but they told me they would not get me in for 2 to 3 months. I said absolutely not, that's unacceptable. So, I told my primary care physician to make my referral to a hospital an hour away and they got me an appointment within 3 days. They went ahead and ordered another transvaginal ultrasound which showed nothing. They did a urine test and another pap, and then they were going to have me back the following week to do a biopsy and a colposcopy – which they did. The biopsy made me sick to my stomach and I became very cold and started shivering – just to put that out there; not everyone probably responds this way, but I did. This all happened in December 2023.

On January 2nd, 2024, the gynecologist called me and said she was very glad that I had come in because I had grade three aggressive endometrial uterine cancer. She said I would need a total hysterectomy and she told me I would be going 2 hours away to an oncology gynecologist for the surgery. She wanted me to have a CAT scan of my chest, abdomen and pelvic area, so I did that the same day, and it all came back clear. She also did a test which I believe was a blood test to see if I had ovarian cancer. That test came back good as well. So absolutely nothing, none of the blood works, none of the CT scans, and none of the ultrasounds showed anything. It was only the biopsy that caught it. I went to see the oncology gynecologist within 3 days. She did a pelvic exam and scheduled me for a total laparoscopic hysterectomy within 4 weeks. I did more blood work, and EKG I think, and answered lots of questions prior to the surgery. They then called and rescheduled the surgery for 3 weeks instead of 4. I had the surgery, and it went extremely well. Within 48 hours I was up fixing myself breakfast and doing quite well. I would say I was mostly recovered after 2 weeks. The pathology came back, and just as she said, it was grade 3 endometrial uterine cancer. But, praise God! It was caught early. It was stage 1A; still in the uterus. It had not gone 50% into the uterine wall – it was only 35%. It had not gotten to the lymph nodes (it was on its way to the lymph nodes but still confined within the uterus). So, I did not require chemo.

I was initially told that I would need 5 internal vaginal brachytherapy treatments. At a follow-up appointment the nurse practitioner told me that they were also now recommending 25 pelvic radiation treatments. I told her I do not believe I need it and I didn't want to do it. I saw the possible side effects especially with lymphedema and again I knew it had been caught very early. So, I asked three different radiation doctors and all three said they did not believe the 25 pelvic was necessary either.
I went to see the radiation doctor to insert the gold seeds as markers for the internal radiation. I did not feel two of the seeds, but I did feel one and it was extremely painful. I will honestly say I started crying and was very traumatized by it. They said it could feel like a sting, but mine did not feel like a sting. It was horrible. Sorry I'm not sugar coating it. Hopefully no one else feels that way when they get theirs. So, I completed six internal vaginal brachytherapy that ended in April, and I got to ring the bell. I had quite a bit of fatigue.

I was fired two weeks into my sick leave, so I've been without a job since the end of January. With the radiation treatments being twice a week and the fatigue, I really didn't understand how anyone would expect me to get a job. I have applied for SSA, but I have a feeling I'm not going to get it. It seems to me like people don't understand how hard it is to go through not only the diagnosis but the treatments and the side effects of the treatments.

I've had a few scares along the way. The nurse practitioner also told me I had mix match repair deficiency and that I may have Lynch syndrome, which is a genetic disorder that can cause cancer to show up at any time in any place. I left that appointment crying, but come to find out through genetic testing, I do not have Lynch syndrome. The genetic counselor also told me the mix match repair deficiency was just my tumor; it is not my body and I do not need immunotherapy. Thank God. And I understand several have had to go through chemo and immunotherapy and I applaud you for your bravery. But I honestly think it's just too hard for me to go through and I thank God that he helped me get through this as good as I did.

I thank God for the gynecologist in Lebanon; she helped save my life. And I thank God that he gave me the ability to notice the bleeding and advocate for myself. Especially since it was grade three very aggressive cancer. I am very blessed it was not a worse outcome for me. I had the church anoint my head with oil and prayer for my healing and full recovery and I believe God helped me every step.

Just to mention as well, I had no idea that I was going to have to be tied to medical care for every 3 months, pelvic exams, my CT imaging and I have to place a dilator in my vagina twice a week for the rest of my life to keep the vagina from closing shut. I had told my daughter when she graduates high school that we are going to travel, and I intend to keep that plan. I'm going to go ahead and sell the house, take the money and travel with my daughter. I pray God will take care of all of us in His more than capable hands.