New Cervical Cancer Screening Guidelines: the Good, the Not-So-Good & the Need to Educate

Recently, the American Cancer Society updated its cervical cancer screening guidelines. There are significant updates that we as survivors and advocates should be aware of.

The new guidelines recommend initiating cervical cancer screening at age 25 and that primary human papillomavirus testing (HPV testing  alone, without the Pap test) every 5 years be the preferred method of testing through age 65. This is a significant update to the previous ACS guidelines, released in 2012, which recommended screening starting at age 21 with the Pap test, then at age 30+ screening with the Pap plus HPV test every five years.

The Good:

  • The proposed shift to fewer, less frequent testing starting at a later age, is in large part due to the broadening adoption of HPV vaccination in the U.S. and the impact HPV vaccination has on the public health landscape. This is good progress from where we were a decade ago! With more and more of the population vaccinated against HPV, screening should and will evolve.
  • Compared with today’s current approach (Pap testing alone beginning at age 21 and switching to Pap+HPV co-testing at age 30) the ACS reports that starting with primary HPV testing at age 25 “prevented 13% more cervical cancers and 7% more cervical cancer deaths.” This could be achieved “with a 9% increase in follow-up procedures, but with 45% fewer tests required overall.” 

So for women who despise the stirrups, perhaps this is good news. But…

The Not-So-Good:

The data that ACS shares is good news: preventing more cervical cancers and preventing more cervical cancer-related deaths are goals we all share. But as survivors of cervical cancer – many of us young adults when we were diagnosed – our lived experiences don’t ring true with the ACS’ recommendation to delay the start of testing to age 25, with a 5 year interval between tests. 

Our top line concerns:

  1. Many of us were diagnosed in our early 20s. It may not be the “statistical norm,” but we know from direct experience that it is our norm. Delaying the start of cervical cancer screening to age 25 is concerning.
  2. While we are proud of the strides in uptake of the HPV vaccine, the National HPV Vaccination Roundtable reports that at this time, approximately 65% of teens in the US have received the first dose. But we are not “there” yet. ACS is changing its recommended guidelines based on the successful adoption of the vaccine, but we believe this needs to be accompanied by ongoing concerted, collaborative efforts and education to continue to increase the vaccination rate. 
  3. We remain concerned that the five year interval will separate women from their healthcare providers. For many women, an annual health visit is the only time they see a health care provider – and so many discussions and screenings happen beyond a pelvic exam. We are concerned that 5 year screening intervals have the unintended consequence of women further delaying visits to a healthcare practitioner. 
  4. To put it simply, we are concerned that with this long interval, far too many women will fall through the cracks. Will miss follow-ups. Will miss screening altogether. We are particularly concerned how this impacts the racial disparities that already plague this disease. We are concerned about any unintended consequences and want to make sure they are fully understood and vetted by policy and guideline experts. 

The guidelines were just released by ACS in early August and are still being absorbed and debated across the cancer community. While these new guidelines point to the future of cervical cancer screening in a post-vaccine world, these changes will not be immediate. In fact, the guidelines specifically clarify that using HPV testing in combination with a Pap test (“co-testing”) every 5 years or Pap tests alone every 3 years “remain acceptable options for now, as not all labs have transitioned to primary HPV testing.” It is no surprise, however, that the downstream impact of broader HPV vaccination is a change in screening practices. But what doesn’t make sense is the lack of education to accompany these guideline recommendations.

Our Key Take-Away: Our Stories Have Never Been More Important

Now more than ever we need to elevate our voice, educate and share our stories. As cervical cancer survivors, we and we alone can speak with unique authority about the disease and how it affects lives. 

As a Cervivor community, we know the need for ongoing education about cervical cancer prevention and screening. We need more women to understand why they are getting screened, what Pap and HPV tests are looking for, what results mean, and what the recommended testing intervals are. We need to make sure that women appreciate that a change in recommended intervals for a pelvic exam does not mean the end of annual health visits. 

Importantly, we need to encourage and educate women to be proactive participants in their own health

To engage their health care providers in conversation. 

To ask questions and to seek clarifications. 

To engage in discussion and shared decision making with their healthcare team. 

To trust their bodies if they feel like something isn’t right. 

With policymakers, we need to ensure that within any guideline shift there is room for consultation and shared decision-making for women and their healthcare providers. 

Rest assured, your Cervivor leadership is in the process of engaging in discussions with policymakers, providers and experts to seek clarity and fully understand the guidance and its impacts. But what remains essential is our proactivity in sharing our stories. In being the voice and face of cervical cancer. In making the disease real and un-ignorable and un-stigmatized. In being a force of education. 

ACS may have new statistics, but we have the stories. And our stories have power. Our stories tell the “why” behind screening. Our stories are what make screening relevant to women. 

Now more than ever, share your story. 

Remind women to keep up with their annual health exams and cervical cancer screenings, at whatever interval they’ve discussed with their provider. 

Encourage young women to get the HPV vaccine. Encourage parents to get their tween and teenage girls and boys vaccinated.

Our stories and voices have an impact. Our stories help educate women. Our stories help inform policy. 

Our stories will help end cervical cancer.  

The ER diagnosed my pain as sciatica instead of advanced cervical cancer

My cervical cancer story started in my 40s. I’d been a single mother to three amazing children. They’d all grown up and I had started taking better care of myself and my health. For many years, I admit, I didn’t do my annual check-ups and Pap smear. I didn’t have insurance, but I also did not make time. I didn’t understand the importance of annual exams. I didn’t know what I was up against.

Tracy at Cervivor School 2019 in Chicago

When I turned 45, I started noticing that my periods were different. I was having pain during intercourse. My lower back and the backs of my legs hurt constantly. I still didn’t have health insurance, so I didn’t go to the doctor. I thought my back hurt because I was trying to get healthier and doing more exercise. I lived with the pain for a while until I finally decided to go to the ER when the pain became worse.  

At the hospital, I was told my pain was a “sciatic nerve” to be treated with ice and heat. They didn’t do a pelvic exam or ask about my reproductive health history or anything about that part of my body. They just assumed they knew what was wrong, and they sent me home.

(I guess they didn’t know what I know now:  that low back pain and pelvic pain can be linked to problems with reproductive organs such as the cervix. That a sign of cervical cancer is pelvic pain – especially continuous pain, like the type I had.)

The pain went on for months. Then a day before my 46th birthday,  I was going to the bathroom and something came out that was not normal – it was what looked to be a piece of flesh, from inside me. I knew right then something was wrong.  The day after my 46th birthday, I went back to the ER. This time, they took me in for a CAT scan. After the scan, the ER doctor came in the room and handed me a card. He told me they saw a mass and that I needed to contact the doctor on the card ASAP. 

I left the hospital crying, confused and scared. I was able to get an appointment for the following day. That doctor found an 8 cm tumor on my cervix. She told me right then, “I am sorry to tell you but you have cervical cancer.”

I did not know what to say or think. I burst out into tears. I knew my life had changed forever. I didn’t know what HPV or cervical cancer was. I was scared I was going to die.

My next six months were all treatment, a lot of it: 28 rounds of radiation, 6 rounds of chemo and 4 rounds of internal radiation also known as brachytherapy – a procedure that involves placing radioactive material inside your body.

The good news: in August 2017, I was told I was cancer free! 

Today I want to teach everyone about HPV, cervical cancer and the other cancers that HPV can cause. I want to encourage all parents of boys and girls to make sure their kids get the HPV vaccine. I want to educate women of all ages to keep up with their annual gyn exams.

I also want to make sure that women and doctors know about the connection between lower back pain and pelvic pain to cervical cancer. While of course back pain and pelvic pain can be caused by many different reasons, it is important to at least be aware of the connection and ask questions. I wish the doctors in the ER had asked me before diagnosing me with sciatic nerve pain. I wish I knew to ask questions myself and to mention my irregular bleeding and pain during sex, even though I was at the ER for “back pain.” Cervical cancer is not something I want anyone else to go through. I am going to work hard for the rest of my life to spread the word and end the stigma.

Tracy Jimenez  is a 2-year cervical cancer survivor from Colorado who recently attended the 2019 Cervivor School, where she learned “that cancer will not stop me and that I will be a voice to educate others. I am a fighter and Cervivor School showed me no one is alone in this fight.”

Read Tracy’s full Cervivor story