Cervical Cancer Survivor
Survivor turns her silence into outspoken advocacy
When Lisa Lakey was diagnosed with human papillomavirus (HPV) at 18, she wasn’t given any information about what it was or what it could mean later in her life. Years later, when she was 37 and trying to have a child with her second husband, she was diagnosed with cervical cancer. They found that the cancer was due to that long-lasting HPV infection. Despite her initial reluctance to tell anyone about her HPV diagnosis, she now advocates for women to get cervical screenings on a regular basis to help end this preventable cancer.
Embarrassed about the HPV diagnosis, I didn’t tell anyone at the time, especially my parents. I didn’t want them to know I’d been having sex because I was a good Catholic girl. No one explained what the diagnosis meant or whether I needed treatment. I had no symptoms, and, at the time, the HPV vaccine was not available, so I just went on with life. I had regular cervical cancer screenings with normal results. I even had a child with my first husband without any problems. I wish someone had explained how HPV could affect me in the future.
After I got remarried in my late 30s, my husband and I tried to have a child. I was having trouble conceiving, so I saw my OB/GYN. My screening showed abnormal cells on my cervix. She tried to remove as much as possible with a cone biopsy using LEEP, a technique that uses electric current passed through a thin wire loop to remove abnormal tissues. However, she told me after the procedure that there were no clear margins. She recommended a hysterectomy.
I was devastated, and my dad encouraged me to get a second opinion with a gynecologic oncologist. The second doctor performed another cone procedure but still couldn’t remove all the abnormal cells. Testing of the cells revealed I had adenocarcinoma in situ, and I was given a diagnosis of Stage IA1 cervical cancer. I decided to have a partial hysterectomy to remove my uterus and cervix but leave my fallopian tubes and ovaries. It made having a biological child in the future possible, and I still wanted a chance to have a child with my husband.
We looked at several fertility treatment options, including freezing some of my eggs, but we were surprised and disheartened at how incredibly expensive they were. It simply was not affordable for us. I looked online for information and support. This led me to Cervivor, which was a great place to meet other women going through something similar. Over time, I shared my experience with them. They asked me to speak at their Cervical Cancer Summit about family planning, so I joined their panel.
After the surgery, my doctor said there was only a 5 percent chance the cancer would return. I was hopeful. Although I was considered a survivor, I didn’t feel like it because for the next two and a half years, I had an ultrasound every six months. All results were normal until an 18 cm cyst was found on my right ovary during a routine scan. The doctor ordered bloodwork, and the results indicated cancer. Testing of the cyst showed it had the same cells as my original cervical cancer. Therefore, it was considered a recurrence.
This shook my world. I was like a zombie for a few weeks as I tried to come to grips with the news. The doctor scheduled surgery to remove the mass and my ovaries and fallopian tubes. I was so scared, but I put on a positive face and adopted the adage of “fake it until you make it.” Inside, I was mourning the fact that I would not be able to have any more children. I felt robbed.
Surgery was followed by six rounds of aggressive chemotherapy treatment every six weeks. Today, I am cancer-free and have annual follow-up appointments.
After the recurrence, I became more involved with Cervivor. Talking about my experience helped me to feel less embarrassed and more emboldened to speak out. I began advocating for other women. I was invited to Cervivor’s Communities of Color event to share my experience as a Latina woman who had cervical cancer.
Many people, especially people from communities of color, have trouble discussing HPV. There is a stigma around it because it’s tied to sexual activity. I like to think of HPV as more like the common cold for your vagina. I even wear a button that says, “Ask me about HPV.” It is a great conversation starter and reduces the stigma of discussing a private part of the body.
Being a part of Cervivor lit a fire in me. I continue to use my voice to bring awareness to this totally preventable cancer. Many women reach out to me in private, but I’m willing to talk about cervical cancer with anyone, anywhere, because I don’t want them to feel alone. Today, I feel like a survivor.
The advice I give other women is to not be afraid of cervical cancer screening, advocate for yourself and find a team of doctors who have your best interests at heart. It’s worth it for your own well-being.
