“When I was a little girl growing up, I didn’t think one day I’m going to be sharing my coochie story and talking about HPV and cervical cancer,” Tamika Felder says about being a 22-year cervical cancer survivor.
Felder is one of the thousands of Black women who have been diagnosed with cervical cancer. Although the average age for a diagnosis is between 35 to 44, she was diagnosed at 25. The American Cancer Society estimates about 2,460 cases of invasive cervical cancer diagnoses will be made among Black women this year alone. Black women are 22% more likely to develop cervical cancer than white women.
Unlike other cancers, where the cause is unknown, healthcare professionals know what causes cervical cancer, how to prevent it, and the risk factors. But Black women are 65% more likely to die than white women from this type of cancer due to stigma, lack of access to healthcare services, and biases.
Since going into remission, Felder started Cervivor, a nonprofit cervical cancer awareness and support organization that works to educate women. She says she wishes she had the resources available today back when she was diagnosed with cancer.
“I didn’t know anyone that had cervical cancer, and I was really surprised by my diagnosis … it literally changed the trajectory of my life, my career,” she says. “I’ve dedicated my life to supporting others who are diagnosed with cervical cancer and helping them to find their voice.”
Cervical cancer is caused by persistent infection with certain types of human papillomavirus (HPV) and is highly preventable through screening and vaccination, the American Cancer Society states in its 2022-2024 study.
The same study says, over a five-year survival period, Black women have lower survival rates for every stage of diagnosis due to disparities in access to care and receipt of high-quality treatment.
Felder says the rates of Black women who are being diagnosed and dying from cervical cancer is alarming — one of the main things they can do to change these numbers is to speak up.
“There are not enough Black women sharing their stories, and I get why because there’s so much stigma involved in it,” she says. “When we talk about vaginal health … in a lot of cultures and communities, it’s taboo to talk about those things. But the problem when we don’t talk about them is that more people are dying.”
How Do Women Get Cervical Cancer?
Dr. Karen Patricia Williams is a preventative care cancer researcher who has spent more than 15 years educating women on cervical and breast cancer. She says some of the main reasons people get cervical cancer is because the healthcare system doesn’t always follow up after an abnormal Pap test and having unprotected sex.
The Center for Disease Control and Prevention says HPV is spread by having vaginal, anal, or oral sex with someone who has the virus, and it can also spread through close skin-to-skin touching during sex. Nine out of 10 cases of HPV go away on its own within two years with no health problems.
HPV may present itself as genital warts, which makes it easy to diagnose patients, but many people who contract the virus have no symptoms. Because there is no test to see if someone has contracted HPV, the CDC recommends women start getting screened for cervical abnormalities at age 30.
“One of the things about cervical cancer is that it’s a quiet cancer, you’re not going to feel it,” Williams says. “It’s a slow-growing cancer, and because of that, you could be 12 years out.”
Although HPV is most known for causing cervical cancer, it can also cause cancer of the vulva, vagina, penis, anus, and throat. Using condoms every time you have sex and being in a mutually monogamous relationship can help avoid HPV.
Williams says two things can be done to lower the risk of cervical cancer for Black women. The first is the healthcare system has to follow up with women who have abnormal Paps, and women should try not to jump to conclusions about what an abnormal test result means.
“It doesn’t mean that you are a whore,” she says. “At the end of the day, (who cares) what these people think because you’re talking about your health.”
One of the main preventative measures against cervical cancer is the HPV vaccine, which can be administered to boys and girls as young as 9. The vaccine prevents HPV from nine types of infection, but it does not protect against all types.
Williams says folks are more at risk when they smoke, have multiple sex partners, are overweight, and have given birth to multiple children. But there are things she recommends folks do to take care of their health.
“The thing about cervical cancer is that it’s one of the cancers you can screen for, and it can be treated, and you can be cured of,” she says. “It’s not something that has to be a death wish.”
Getting regular Pap screenings after becoming sexually active can alert women to abnormalities within their cervix. But this isn’t always as easy as it sounds. Williams co-authored a study published in 2020 that found Black women reported higher cervical cancer screening rates than white women, but after being diagnosed with an abnormal Pap, many don’t know what it means.
“When we’re saying cancer literacy, it’s not based on someone’s educational attainment because if you know you know, and if you don’t you don’t,” she says. “There were a lot of women — and a significantly higher rate of Black women — who were not followed up as it relates to their abnormal Paps.”
To increase cancer literacy in the Black community, Williams developed The Kin Keeper model. She says they have community health workers who come from that community, alongside health care workers to educate Black women and families about cervical cancer in their own homes.
Impact on Black Women, the Importance of Speaking Up
Cervical cancer treatment plans look different for everybody. Felder had a radical hysterectomy, which is the removal of the uterus, cervix, ovaries, both fallopian tubes, and some surrounding tissue.
“It takes up so much space in one’s life, and it just kind of fanned out to your workplace, your community, your family, and you become branded with cancer,” she says. “It’s hard to escape it even when the cancer is no longer present in one’s body. You still think about the cancer, you still wonder if it will return.”
What Felder is describing is common for many folks who experience cancer firsthand or care for someone with cancer post-traumatic stress disorder often follows. The American Cancer Society says people can develop PTSD after learning they have cancer, pain caused by cancer, cancer’s return, or fear of its return.
“When I was diagnosed with cervical cancer, it literally gutted me and I was an emotional wreck,” she says. “I think that’s something people don’t understand: Even the person who can withstand a lot, that can bear a huge burden, dealing with something so impactful can just pull your feet out from under you.”
Carrying the weight of life and death on your shoulders is painful, yet this is something Black women continue to bear the brunt of. Black women are also often diagnosed at later stages, Felder says; although she was diagnosed in an early stage of cervical cancer, she “lost so much.”
“When I look at my own story of not being screened because I wasn’t insured or at times, I was underinsured … I’m lucky to be here, honestly,” she says.
What Needs to be Done
Contracting HPV does not make someone “promiscuous,” Williams says, but having more honest communication with a partner can prove to be a simple preventative measure.
“You might need to ask your partner to wrap it up,” she says.
Williams encourages Black women to put the health care system on notice, by asking questions and not taking the first response at face value. She says it’s imperative to advocate for yourself or bring someone with you who can advocate on your behalf in a medical setting. Even if questions are not being answered in a satisfactory way, Williams says to ask for a supervisor and let them explain.
“As Black women, we know that we can be assertive and we know we can take charge, so we have to take charge of our health and not feel shame or embarrassed about it,” she says. “Because this falling through the cracks and this process of missing things … there’s a real problem.”
Felder says talking about cervical cancer normalizes things, empowers people, and brings comfort to women who are feeling alone. People may feel judged having cervical cancer, she says, but this can happen to anyone, and having more women share their experiences puts a face to the issue.
“I’m hoping that, by sharing my story, it will help others really take care of themselves and put themselves first.”