In December 2014, 42-year-old Gilma Pereda was sitting on the examination table when she heard the phrase every woman dreads at the doctor’s office: “I don’t like what I see.”
Her longtime doctor, who also did Pap smears, said Gilma’s test results from her last visit showed that, again, she had HPV and some abnormal cells in her cervix. Gilma had been diagnosed with abnormal cervical cells a few times over the years. And each time, her doctor used cryotherapy treatment to freeze and remove them before they had a chance to develop into cancer.
A month later, Gilma returned to the office for a cryotherapy session. But as she was lying on the cold, hard table, surrounded by medical equipment, her doctor sexually assaulted her.
Gilma stormed out of the room.
“I completely closed up,” she recalls. Gilma knew she should have looked for a new provider and resumed treatment immediately, but the assault prevented her from getting care for more than a year.
Seventeen months after being assaulted, she found the courage to seek a second opinion. When she was finally reexamined, a clump of abnormal cells was discovered in her cervix. Gilma was referred to another gynecologist, who performed a biopsy. And at that appointment, her worst fears were confirmed.
Gilma was diagnosed with a type of cervical cancer called squamous cell carcinoma stage IB in June 2016, which means that cancer had progressed and become aggressive. While the tumor in her cervix was small (around two centimeters wide), it had the potential to grow larger and spread to nearby lymph nodes and other parts of her pelvis if left untreated.
A month later, an oncologist found that the tumor had already grown another centimeter, so he adjusted her diagnosis to stage IIB, meaning that her cancer had become even more aggressive and was spreading to nearby tissues.
A Numbers Game
Gilma, now 47, became one of the more than 16,000 women diagnosed with cervical cancer in the United States on average yearly between 2014 to 2018, according to the CDC. The disease accounts for a massive amount of all cancer cases: The World Health Organization (WHO) states that cervical cancer is the fourth most common cancer in women.
But cervical cancer also has an incredibly high survival rate compared to other cancers. If it’s caught and diagnosed at the earliest stage, patients have a 92 percent five-year survival rate, according to the American Cancer Society.
“Before the 70s, before the Pap test was a thing, it was the leading cause of death in women,” says Jessica Shepherd, MD, ob-gyn, chief medical officer at Verywell Health. “And now, it doesn’t even crack the top 10 cause of death in women.”
Cervical cancer is caused by certain types of the human papillomavirus, or HPV, and is transmitted sexually, notes Shepherd. The virus can cause cells to become abnormal. “That’s when we start to watch what it’s doing and making sure that it doesn’t progress to cervical cancer,” she adds.
More than 42 million Americans currently have a type of HPV that can cause diseases, and the CDC notes that almost everyone will get HPV at some point in their lives. Fortunately, nine out of ten HPV infections go away by themselves within two years. And while most people with HPV don’t even experience symptoms, they can still infect others.
Any person with a cervix and an HPV infection is at risk of developing cervical cancer, according to the WHO. However, the level of risk can vary depending on a few factors, including ethnicity.
Hispanic women are at an increased risk. One ACS report showed that Hispanic women are 40 percent more likely to be diagnosed with cervical cancer than non-Hispanic white women and 26 percent more likely to die from it. They also tend to have more severe cases of cervical cancer, according to a 2015 study from the Journal of Cancer Education.
Obstacles To Compassionate Care
The medical community is divided on why these numbers are so high. Erica Montes, MD, a board-certified ob-gyn in Arizona, explains that a few factors can prevent her female Hispanic patients from getting the Pap smears and cervical cancer treatment they need.
A lack of health insurance prevents some from coming to the office regularly. “One in four Latinos don’t have insurance,” she says.
Language is often another obstacle. “Only 5 percent of practicing physicians in the United States are Hispanic or define themselves as Latino,” Montes says—5.8 percent to be exact, according to the Association of American Medical Colleges. “Maybe not even all of them speak Spanish,” she adds. Plus, for women who aren’t proficient in English, medical jargon and pamphlets can be even more frustrating to receive.
A 2019 Pew Research Center study found that while 72 percent of Hispanic people in the U.S. speak English proficiently, only 37 percent of Hispanic immigrants do. Ninety-four percent of Hispanic immigrants (and 57 percent of U.S.-born Hispanic people) speak Spanish at home—so closing the language gap is another way for physicians to make their patients feel more comfortable and welcome in the examination room.
Montes is bilingual and says entire appointments can change for patients when they receive care in Spanish. “Half of my patients speak Spanish, and about half of the ones that speak Spanish told me, ‘Oh, I’m so glad you speak Spanish because I can understand you better,’” she says.
“You Put Yourself Last”
Another hurdle for many Hispanic and Latinx women can be cultural expectations in their families and communities. Many people don't see an advantage to “offering sex education at schools or at home or in the community in general,” says Sarah Lucena, an assistant teaching professor of Spanish and Portuguese at Georgetown University.
Lucena, who is from Brazil, is an expert in women's narratives in Brazilian literature and film. “Latin American societies are still very much patriarchal, so the theme of women’s sexuality here is a huge taboo,” she says.
Girls grow up without receiving proper sex education, she adds: “This results in a lack of self-care, a lack of information towards their body, and their [overall] health.”
For Hispanic women, connecting with their sexuality can have many negative cultural consequences. “If you are interested in taking care of your body and your sexuality, it’s going to send a message that you’re having sex with everyone, or they’re not a virgin anymore,” she explains.
There’s also the cultural expectation that a woman’s role is to be in charge of the household. “Especially in the Latino community, you do everything, you put yourself last, you have to take care of everyone else’s needs,” Lucena says.
Alegra Woodard, 58, is both Black and Latina. Those cultural norms hit her hard when she was diagnosed with cervical cancer back in 1999. “Anything [medical] that is below the belt carries a lot of stigma,” she explains. “As a woman, you are expected to show strength, and it’s about getting up and moving on and pretending that nothing happened.”
Combine the general discomfort many people have with discussing vaginal health and procedures with the cultural expectation to suffer in silence, it’s no wonder that patients may be reluctant to visit the gynecologist or opt-out of a Pap smear altogether. “Cervical cancer is curable if you catch it early,” Montes explains. “This isn’t something that you need to die for.”
Breaking New Ground
Now, Alegra is entering her 21st year as a cervical cancer survivor. “But for 14 years of those 21, I was silent,” she says. “I couldn’t even say that I was a survivor.”
After finding a cervical cancer support group and sharing her story, both she and her husband transitioned into advocates and chapter leaders for the group Cervivor to spread awareness and information about cervical cancer. Today, she reaches out to people battling cancer and provides resources, like through the organization’s chemotherapy care packages program.
One of the most important lessons she teaches women is how to stand up for themselves at the doctor’s office. When you meet with your provider, she explains, “there are two experts in the room.” The doctor is the expert on the science of you as a patient, she continues. And you are the expert on your medical history and on your body.
She also says it’s important to remember that you can always switch doctors. “If you are unsure or you are not satisfied, you have the right to fire your doctor and continue looking for additional advice,” she adds.
After around two months of treatment, including 32 rounds of radiation and four rounds of chemo, Gilma Pereda is now almost five years cancer-free. “I learned to be more loving towards myself after the diagnosis and the treatment,” she says. “It was one of the best lessons I’ve received in my life.”
How To Be Your Own Advocate
1. Know which tests to ask for. Two tests can help detect and prevent cervical cancer: Pap smears and HPV tests, according to the CDC. You can get both tests done at a doctor’s office or a clinic near you. “When you do ask, just make sure you say, ‘I would like a Pap plus HPV testing.' It’s co-testing, so specify both,” Shepherd says.
2. Learn when to get tested. The CDC recommends that anyone with a cervix should start getting regular Pap smears at age 21. If your first test is normal, your gynecologist might say it’s okay to wait a few years before getting a second one. Starting at age 30, talk to your provider about which testing option is right for you: a Pap smear only, an HPV test only, or both at once.
3. Ask questions. No matter what your results say, make sure to ask your gynecologist any questions you have. Whether you’re wondering what the next step is or you don’t understand the medical terms your doctor is using, speak up for yourself and make sure you’re both on the same page. “We really want people to take part in their own lives and be proactive,” Shepherd says. “That’s how you’re going to have a better outcome.”
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