Cervical Cancer Survivor | High Risk HPV & Lack of Support

Lori

Location: California, Washington

Age at diagnosis: 34

Diagnosis: Endocervical adenocarcinoma

Stage of cancer: I

How it all began: When I turned 30, I packed up and moved to Seattle, WA for new adventures. What a great choice! However, moving to a new city, it took me a while to find a new set of doctors and, frankly, I felt perfectly healthy…it seemed there was no rush. This included my regular Pap smears and pelvic exams. No woman raises her hand and says that it is one of her favorite things, so a new gynecologist was the last on my list. We tend to put off things that don’t motivate us. Four procrastinated years later, I finally went in for a checkup. And it came as a shock to me that my Pap smear results came back as abnormal…I had always had normal Paps.

When I realized something was wrong: Over the next four months, I would have several follow-up tests with my doctor and other specialists, but every secondary test came back clear. It was baffling. I was having abnormal Pap smears over and over, but follow up testing like ultrasounds and colposcopy (another view of the cervix) were all clear. Months went by and I finally asked for an HPV test (which was not yet the standard of care at the time) and the results came back positive for high-risk HPV.

My treatment: I was then referred to a gynecological oncologist and several months after my first abnormal Pap smear, I had a cone biopsy surgery. It was when I sat down with my doctor to discuss the results of that surgery that I first heard the words “…it’s cancer.” And it was invasive. I learned that endocervical adenocarcinomas are a bit more rare and it explained why it took some time to find the tumor…it was hiding high up in my cervix where Pap tests didn’t reach and likely had grown unnoticed for several years.

Unfortunately, my first surgery did not remove all the tumor. I was then scheduled to have a radical hysterectomy and my oncologist knew that I was devastated to lose my fertility at such a young age. While I was never convinced that motherhood was for me, the moment someone said they were going to take away that option, I was flooded with anger and feelings of loss. How could this be happening to me? I had been symptom-free. Or, had I? In hindsight, the frequent back pain, occasional vaginal discharge, and random bleeding were always just dismissed as stress. That’s why diagnosis can sometimes be tricky and why we should always listen to our bodies. These were likely unchecked symptoms.

Because my cancer was discovered at stage 1, my oncologist and I worked out a risky option to forgo the hysterectomy with the understanding that if they found any evidence of the cancer in the next surgery results, I would need the hysterectomy straight away. The second surgery removed the rest of my cervix and my pelvic lymph nodes. There was no evidence that it had spread. However, those two surgeries made the chance of carrying a pregnancy to full term about 50/50…something I didn’t want to risk and so I never had the chance for biological children; cancer took that from me.

How things have changed in cancer advocacy over the last 10+ years: When first diagnosed, there was a lack of peer support and cervical cancer resources in my local community. I felt so alone as I was going through treatment, no matter how many loving people were around me. I needed to know that there was someone else out there who understood what it meant to have a gynecological cancer. Since no one else was available, I stepped forward. Yet despite my efforts and the growing cervical cancer advocacy movement, gynecological and HPV-connected cancers remain grossly underrepresented in health education, patient care, and community action plans. Most important…in this decade, we have seen the release of a cancer-preventing vaccine. We are talking more about HPV cancers, but thousands are still dying from preventable disease and HPV vaccine rates remain low. We still have a long way to go.

My personal health mission: I help educate and empower people facing the tough questions around sexual health, HPV awareness, and cancer prevention. Through this process and my belief in the power of philanthropy and personal outreach, I now offer my story and subject matter expertise to train others and speak to the media, local groups, medical practitioners, community organizations, legislative leaders, and individuals to empower change.