How my story begins: Before diagnosis, my life was great! I had no health issues and was very active in yoga and the community.
My story begins like many women’s I suppose. I have always been consistent with my annual exam and never had any gynecological health issues. I was diagnosed with a high-risk strain of HPV at 30, but my understanding is that the virus went away and I never had an abnormal Pap smear. In March 2018, I went in for my annual as usual and was shocked to learn a few weeks later that my Pap was abnormal and showed AGUS cells. I was sure it was a mistake! My PCP sent me to an OBGYN who performed multiple biopsies on my cervix and uterine lining. The uterine biopsies came back negative but the cervical biopsies showed adenocarcinoma in-situ (AIS). Again, I was shocked. Where did this come from? Why did I have it? Why didn’t I have any symptoms?? From there, I was told that I needed a cone biopsy to determine if there was any further spread. I had the cone biopsy done a few weeks later and the results came back with invasive endocervical adenocarcinoma. I had been doing a lot of research and knew that a radical hysterectomy would be recommended, which it was. Childbearing was not something that interested me, so losing fertility was not a concern. I agreed to proceed with the radical hysterectomy, which I had done in July 2018.
How I felt after diagnosis: In shock. It was very surreal to think there was something inside of me that was trying to kill me, but that I did not feel or know was even there. Oddly enough, I wasn’t as afraid of the cancer as I was of the surgery. I knew it was a big surgery and could have a lot of complications. Mostly though I tried to stay positive and focus on the fact that we found this early. The hardest part was waiting for results.
Telling my family and friends: I have been very open with everyone about my diagnosis, so it was not hard for me to tell family and friends. Telling my mother though was a bit more challenging since she was in the middle of fighting her own cancer scare and was nearing the end of radiation. I knew my diagnosis would add to her emotional burden and that upset me more than anything.
My treatment: I had a radical hysterectomy in July 2018 and kept my ovaries. Thankfully, there was no cancer in anything that was removed so I did not need any further treatment beyond the hysterectomy.
How I felt after treatment: I have not had any complications from the surgery, but it is a long recovery. I am about 7 weeks in at the time of writing this and I feel about 50% normal. Getting back to my pre-surgery fitness and energy levels will take some time.
What was most difficult for me: What was most difficult for me was how sudden and swiftly everything happened. Going from never having any gynecological issues to having invasive cancer and needing a radical hysterectomy was quite the challenge to accept. What really got me though is that if I had followed the national guidelines and waited 3-5 years for my next Pap smear, I could have been at a much later stage than what I was. I credit myself for advocating for my own health and getting one each year regardless of the guidelines, which may have very well saved my life or at least saved me from radiation and chemo.
What I did to help myself: I joined online communities of supportive women who were, or had gone through what I was going through. I did lots of research and armed myself with knowledge. I made videos that detailed my diagnosis and the process to help educate other women. And probably most importantly, I rallied people around me for support to help get me through the surgery and aftermath.
Where I am today: Recovering from surgery. I am still early in this process and will be heavily monitored over the next 5 years for any signs of recurrence. I am still wrapping my head around the emotional weight of having to deal with regular Pap smears and waiting for results. But for now, I am healing well and trying to get back on track with my life and goals.
What I want other women to know: Demand an HPV test with every Pap smear. I did not know it wasn’t standard, and I could have had a colposcopy sooner had that been part of the Pap smear package.
How I will try to help others: Education!!