The Language of Prevention
Six years ago, my ob-gyn found two millimeters of cancerous cells on my cervix and told me that my uterus should be removed as a precaution. I steeled my nerves and decided I would not have the procedure. I was 38 years old. I wanted to keep my uterus, keep my body whole, keep all of my spirit. I’m not sure where this idea came from. I’d never considered myself a deeply spiritual or religious person. (Perhaps agnostic theist is the best term to describe my beliefs.)
As I pondered my response, I recalled my interview, years earlier, with Dr. David Hayes-Bautista, director of the Center for the Study of Latino Health and Culture at the University of California at Los Angeles. He told me that the Latino population’s medical needs were different from the Anglo population’s, citing attitudes toward heart transplants as an example.
“Hispanics believe, as did the pre-Columbian Nahua Indians, that the soul resides in the heart, and wonder whether a heart transplant recipient could become a different person after the operation,” he said.
I found it ridiculous at the time. But my experience with cancer—I was diagnosed with Stage 1A micro-invasive cervical cancer in 2005—has changed my mind. Today, with good reason, health care providers and researchers talk about the importance of cultural competency, the concept that the prevention and treatment of diseases are affected by the culture, gender, race and ethnicity of patients. In short, belief systems affect people’s attitudes toward disease and treatment, and to be effective, health care professionals have to understand these differences.
I have prided myself on being an atypical Mexican-American, defying the statistics. I’m not Catholic, I am educated, and I get annual health screenings. Yet I decided that if the heart holds the soul, then my uterus held the magic of life—and as a woman I wouldn’t be whole without it.
But there was more to my feelings than wanting to be “whole.” Cervical cancer is caused by the human papillomavirus (HPV), which is transmitted through sexual activity. It’s the most common sexually transmitted infection in the country, and, with regular screening and early treatment, the most preventable female cancer.
I imagined facing the judgment of my family and friends for my condition, like Hester Prynne in The Scarlet Letter, and it scared me, though there was no basis for my fear. I had grown up in El Paso on the border with Mexico, but unlike many of my Catholic friends’ mothers, my mother encouraged me to leave home and live with a man before I committed to marriage. She talked to me about sex and introduced me to birth control in my early teens. Still, after my diagnosis I recalled my five relationships, chastising myself for being sexually active before marriage. I didn’t want my husband or father to think poorly of me. Perhaps a subconscious reason for wanting to keep my uterus was to punish myself by holding the disease inside me.
The embarrassment and difficulty in talking about sexuality and reproductive health are part of the reason Latinas are not getting these life-saving screenings, according to studies by the Centers for Disease Control and Prevention (CDC) and other health organizations. Lack of health insurance remains the major barrier to receiving early cancer diagnosis and treatment for many women. I was not a member of the uninsured, but I was part of a cultural statistic. Like many Latinas, I was ashamed to share sexual information with health care workers.
This mindset, coupled with the lack of health insurance, keeps cervical cancer and mortality rates among Latinas in Texas and the U.S. higher than those for Anglo women, according to the CDC. Three of every 100,000 Latinas diagnosed with cervical cancer in the U.S. die from the disease, compared to two of every 100,000 Anglo women. The highest mortality rate is for black women, at 4.3 per 100,000 women, even though black women have high rates of screening for the disease. Eighty-one percent of black women are screened for cervical cancer, compared to 82 percent of white women and 76 percent of Latinas, according to Usha R. Ranji, Associate Director of Women’s Health Policy at the Kaiser Family Foundation.
In communities along the U.S. side of the border with Mexico, cervical cancer mortality rates for Mexican-American women are almost identical to national rates among black women. A study by Dr. Theresa Byrd, co-authored with Drs. Katherine Wilson and Rafaelita Chavez in the journal Ethnicity & Disease in 2007, found the mortality rate from cervical cancer in El Paso County was 4.2 per 100,000 Latinas. According to the study, “Hispanic women have a lower rate of participation in cervical cancer screening programs than other women.”
The same can be said of breast cancer screenings, the most common cancer diagnosis and the second-leading cause of death among Latinas. Heart disease is the No. 1 killer. Colorectal and lung cancer are the second and third most common cancer diagnoses, while cervical cancer ranks seventh. Though cervical cancer is not the leading cause of death among Latinas, health officials say it is the most frustrating because, as with colorectal cancer, “you can find early changes before they are cancer,” Byrd said.
“So there are cancers where screening can be either for early detection or for prevention.”
Byrd’s study was used to develop educational information targeting Mexican-American women along the U.S. border. The result was the AMIGAS project, created in 2004 to help reduce cervical cancer rates among Latinas. The program has since expanded to El Paso, Houston and Washington state’s Yakima valley. Community health workers called Promotoras de Salud (Promoters of Health) fan out in neighborhoods with a DVD, flip charts, and games. The program is part of a broader effort by the CDC to increase cervical cancer screenings for all women to 93 percent by 2020.
The program helps women put themselves first by stressing their importance to their families. “We stress in the video that we don’t [get Pap tests, which detect the presence of cancerous cells] for us, but for our family, because what would our family do without us,” Byrd said, explaining the program’s approach.
How health care providers get the word out is one of the most important factors in reaching a community, said Dr. Wilson. A large part of educating Mexican-Americans, the largest Latino population in the country, lies in who delivers the message. “The community health worker programs have been alive since the 1960s,” said Dr. Wilson. “The health worker acts as a bridge [between the patient and doctor].”
The promotoras have lists of low-cost and free resources for cancer screening and early-detection programs. The video opens with two young women from El Paso talking in Spanish about the dates they are about to go on. The conversation progresses to birth control. One of the young women, Alyssa, invites her mother, who is a promotora, to explain why a Pap test is important. Alyssa’s grandmother overhears the conversation and joins the intergenerational discussion. The video also highlights issues that CDC researchers found were barriers to screening, such as lack of insurance and misinformation.
The program also addresses embarrassment about going to the doctor. “For all women, Pap tests are embarrassing and unpleasant,” Byrd said. “Hispanic women, especially young women, have the added problem of not wanting everyone to think they’re having sex.”
Not wanting to talk about my sexual history initially led me to reject having a hysterectomy. But I changed my mind, stunned back to reality by the fact that Latinas have a rate of invasive cervical cancer that is twice as high as that of Anglo women.
I consented to having my uterus removed. But I toyed with the idea of keeping it after surgery, as I continued to grapple with what it meant to me.
I settled on merely seeing it. Looking at it in the hospital pathology lab a few hours after my surgery, I realized that it didn’t define me. I was still whole. I had learned something about myself through my experience with cervical cancer. My belief system was not so different from that of the border community where I was raised, and the thousands of Latinas I hope the AMIGAS program can save.
Christine Granados is a mother, wife and writer, although not always in that order. Her writings have appeared in anthologies, journals, magazines and newspapers. She teaches at the University of Houston-Victoria.