Teal Health’s Take: It can be difficult to see cancer death rates everywhere we turn. The one positive about cervical cancer is that if detected early through routine screening, it is one of the most successfully treatable forms of cancer. But several barriers exist for routine screening. We are thankful to our community for sharing their stories and putting names to the numbers. We hope you find these inspiring and share the importance of cervical cancer screening with all the women in your life.

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When my results came back as irregular after a routine Pap smear in 2015, I wasn’t overly concerned. I had already been diagnosed with human papillomavirus (HPV) when I was 19, ten years prior. 

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But then my doctor ordered a colposcopy, in which they would take a biopsy from my cervix. I delayed this because it wasn’t made clear to me that this was an important follow-up, and like many young professionals, I had a busy life that I made the decision to prioritize; in hindsight, I wish I had understood the follow-up appointment should have been my priority. A few days after the colposcopy, my doctor called and asked me to come in for my results and to bring a support person along with me. For some reason, even that didn’t set off any alarm bells; I brought my boyfriend to the appointment and there, my doctor told me I had cervical cancer. 

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My cervical cancer diagnosis

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Looking back, there were a couple of symptoms indicative of cervical cancer. First, about two months before my diagnosis, I started feeling a lump inside my cervix. It wasn’t painful, just noticeable. Second, I started consistently bleeding after sex, beginning about a month before my diagnosis. Neither of these were warning signals to me and the diagnosis came from my routine Pap smear. 

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Fortunately, my cancer was in a stage classified as Stage 1B1 when I was initially staged and diagnosed, this is considered to have been caught early. After I underwent surgery to remove the tumor, a biopsy showed that the cancer had metastasized to my lymph nodes, but the staging for cervical cancer doesn’t change even if it has grown to affect other areas. 

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Because it was caught early, I never felt in real danger of dying. I just knew that having cancer and, subsequently, treating the disease, would upend my life for a while. 

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Treatment 

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Because of my stage, I was lucky enough not to require a full hysterectomy and instead was able to undergo what’s known as a radical trachelectomy, in which just a piece of the cervix is removed. In my case, this was about two inches.

Had my lymph nodes come back clean after the radical trachelectomy surgery, this would have been the end of my treatment. However, my doctor and I learned that the cancer had metastasized to two of the sixlymph nodes removed for biopsy. As I sat in his office while we received the results together, he began laying out a plan of care for my chemo and radiation regimen and connected me with a radiology oncologist. 

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Cervical cancer treatment and fertility preservation

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As a young woman dealing with a cancer diagnosis, I was the one who brought up the question of fertility because I was in my late 20s and knew I wanted to have children one day. Fortunately, because my cancer wasn’t highly aggressive, I was able to put off my chemo and radiation regimen to go through the 4-week process of IVF.  

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One important observation I had is that the doctor’s primary focus is to kill the cancer.

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As the patient, you can’t rely on them to think through every way your life and future will be impacted outside of curing the disease. This is why it’s important to do your own research, ask questions and advocate for yourself. 

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Though this is luckily changing in many parts of the US, at the time of my diagnosis fertility treatment and egg preservation were less common and not typically covered by insurance. These are quite cost-prohibitive procedures that can make it unrealistic for cancer patients to prioritize. In my research, I found that there are nonprofit organizations whose mission is to aid cancer patients with the monetary aspect of fertility treatment. These can be found through a quick Google search.

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Advocating for yourself throughout cervical cancer treatment

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While fertility preservation is one example, you absolutely need to take ownership and do your research so that you can be prepared and actively participate in your treatment plan. Second, if something doesn’t feel right, bring it up and don’t let it go until your concerns are adequately addressed. I’d also always recommend getting a second opinion; if for no other reason than to feel completely confident with your doctor before starting treatment. 

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Could my cancer diagnosis have been prevented? 

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Because of my HPV diagnosis at 19, I saw my doctor for annual Pap smears even though the guidelines for most people recommend one every three years. The results consistently came back as “irregular,” until one year they were regular, which I’ve now learned can happen even if you have a high-risk HPV strain. 

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Because of this “regular” result, my doctor at the time said I didn’t need a Pap smear for another three years. My next Pap smear, in June of 2015, was the one in which I was diagnosed with cervical cancer. The obstetrician who diagnosed me said it looked like a very slow-growing tumor that had probably developed over about three years—meaning my cancer could easily have been prevented had I continued with annual screenings. 

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Today, I’m living cancer-free, married, and expecting my first child. While a cancer diagnosis changed my life, surviving it has helped me see life for what it is and not stress nearly as much about the every day minutiae. You will get through this, but it’s going to be hard. You’re going to need to support yourself and you’re going to need a support system. You’ll come to appreciate the good news that you’re alive and no longer have cancer. 

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A note from Teal: Following a positive HPV test, it’s important to speak with your doctor to determine and understand your screening schedule moving forward. The type of test performed, along with your results, determines when you should screen again. 

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You may be aware that the cervical cancer screening guidelines have been updated in recent years. These updates reflect advances in women’s health and highlight how much we have learned and continue to learn about HPV. Most significantly, evidence shows that high-risk HPV causes more than 90 percent of cervical cancers. 

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We also know the primary HPV test (which is the test utilized by Teal Health) is a better (more sensitive) screen for cervical cancer. It was first incorporated into guidelines with a Pap smear (known as a co-test), and more recently as a stand-alone screening test (“primary” screen in some guidelines). For decades, Pap smears were recommended every 1-3 years, or more frequently if results were abnormal. With HPV testing, screening guidelines changed to every 5 years for a negative result. If you receive an abnormal result, this timeline may be adjusted and should be discussed with your provider.