How my story begins: For a long time I struggled with whether I even deserved to tell my story since my CIN3 was caught early. I had positive margins on my LEEP but the cone biopsy did come back clear. And so far my paps since have been clean. But upon reflection, I really believe my story begins when I was 16. My mom told me she had an abnormal pap, and I was the first person she told about having to get additional testing. She ended up being diagnosed with cervical cancer and had a radical hysterectomy.
At that time Gardisil was available, and she immediately had my sister and I vaccinated. She felt it was so important to try to protect us from what she was facing.
Unfortunately, her cancer came back and over a period of 10 years with intermittent chemo and radiation was deemed stage 4 that was not responding to traditional treatment. My mom then participated in 2 clinical trials, but eventually was advised to pursue hospice care when I was 28. I took care of my mom off and on during a lot of her cancer treatments along with my siblings and aunt. But I came home to live with her and take care of her the final 5 months of her life. My mom died shortly after her 52nd birthday. A relatively young woman, who prior to her final recurrence, was healthy and enjoying life. Watching someone you love that is so strong lose their battle with cancer is traumatic.
Life before my diagnosis: I had recently gotten married and moved with my husband to Albuquerque. My husband had just finished his first year of law school. I was focusing on work and supporting him through his education.
How I felt after diagnosis: My feelings about my diagnosis were complicated. I felt anger. I knew my mom would be so pissed off that I was having to deal with this. She’d done her best to protect us, but the vaccine available at the time covered fewer strains of HPV. I remember looking at my HPV typing and it simply said “high risk, other”. As in, not a strain I was vaccinated against as a teenager.
I was afraid. I’d just watched my mom die from the disease 3 years ago. I knew exactly how bad this could get because I’d lived that experience as a caregiver. And I’d had to have therapy to help me process my grief and trauma. As a 32 year old woman dealing with my own diagnosis, I remember that I just really wanted my mom. I felt like I needed her to help me get through this.
Telling my family and friends: I told my husband immediately when I got the call about an abnormal pap. He went with me to the follow up appointment where I expected to get a colposcopy. Instead the MD informed me that the cells captured on the pap were advanced enough I would need a LEEP regardless and recommended doing it that day. I remember being terrified but my husband held my hand during the procedure and we got through it. It was not until the LEEP had positive margins that I told my siblings. I was trying to protect them from worry because I knew they were also still trying to process my mom's death. My sister had just finished PT school and had already planned to move to Albuquerque, mostly to be near me, and I was so grateful to have her close by. I told my in-laws mainly because I didn’t want them to be asking questions about when my husband and I would have children.
My treatment: I initially had a LEEP which had positive margins and marked atypical cells. I was referred to an oncologist immediately. I got that call in the airport. I was taking my sister to Alaska to celebrate her graduation. I was so glad she was there when I got the call and we had happy things planned to keep me busy until that first appointment with the oncologist.
When I got to the oncologist, I told her about my mom, and how my priority was to remove what was necessary to prevent recurrence. My husband was struggling with the concept of not having biological children but I felt that I wanted to be healthy if I had children. So I needed to do whatever was necessary to be healthy. We talked about adoption and the possibility of a surrogate. We did the cone biopsy because it was required regardless, and I told my oncologist prioritize getting whatever you need to help make informed decisions.
At the initial visit, there was a lot of talk about hysterectomy. I shared about my experience with my mom and was immediately referred to an onsite counselor. We anticipated the cone would tell us which type of hysterectomy I would need.
I had the cone biopsy done in September 2021. And surprisingly my cone came back normal. The LEEP had actually burned the edge of the atypical cells. I was revaccinated with the expanded Gardisil series and I’m currently in surveillance.
Due to the extensive cone (which I asked for), my husband and I are not planning on having biological children. I know that she took a large sample because I told her to, and both myself and my husband feel confident that if we decide we want children in the future we can adopt. We would provide a great home for a child that needed one.
How I felt after treatment: Sometimes I am in disbelief. Those weeks were so stressful. Then magically I was ok. I still have major anxiety before every appointment at the oncologist. I learned during that time period what scanxiety actually was — I’d had that multiple times going to appointments with my mom and wasn’t familiar with the term.
Sometimes I feel guilt. I don’t know why I was able to get away thus far reasonably unscathed. So many women (including my mom) are not as lucky as I am. And not only from a treatment outcome standpoint— I have a lot of support from my husband and siblings.
Physically, I’m healthy now. I do have some pain with intercourse which my oncologist believes is due to the surgery and scarring. I’m currently in pelvic PT to try to help with this.
What I did to help myself: I went to a counselor at the cancer center when I was referred. That was so helpful and that provider made me feel like I was not crazy for how scared I was because of this diagnosis. She also helped me unpack a lot of my grief about my mom. I had been in counseling prior to moving to Albuquerque, but was not established with one in town. Seeing the therapist at the cancer center was absolutely one of the best things I did for myself during that time.
My life after cancer: I’m still focusing on working and being a wife. My husband just graduated from law school and is studying for the bar exam.
Where I am today: Currently, I am still under surveillance. We discuss fertility at every appointment. I am confident in September that my husband and I will both be able to say definitively we will not have biological children. It took my husband a little longer to accept that reality. I was supposed to have a referral to high risk OB to figure out how risky it would be (they’ve told me I would definitely need stitching to maintain a pregnancy) but I think we eventually both came to that final decision without the appointment.
My next appointment at the cancer center is in September or October. But I made it past the 1 year mark and am celebrating that milestone.
What I want other women to know: Please ask your oncologist if they have onsite counselors and make a visit. They are there to help you.
I also would encourage any person eligible to receive the expanded Gardasil vaccine to do so (male or female). I personally believe we are not focusing on boys as much as girls and HPV can have devastating cancers for males as well. Also, if more males are vaccinated there could, over time, be less high risk HPV circulating. My husband was vaccinated on my oncologist’s recommendation.