Diagnosed with Stage 3 cancer at age 32, Karol Contreras was already scared and unsettled.
The thought of discussing her condition and treatment with doctors only added to her anxiety. Contreras grew up in Honduras; her English is limited.
An acquaintance connected her with Nueva VIDA, a nonprofit that provided a bilingual mentor to accompany her to appointments at the University of Maryland St. Joseph Medical Center in Towson. Nueva Vida — Spanish for New Life — provides “culturally sensitive” cancer support services for Latino families in the Baltimore, Washington and Richmond, Va., areas.
“She made me feel more comfortable,” Contreras said through an interpreter. Two years after her diagnosis, Contreras is now cancer-free. Other Hispanic women are not as fortunate.
Breast cancer is the leading cause of death among Hispanic women, in part because many are not knowledgeable about the U.S. health care system or fluent in English. While they are less likely to get breast cancer than other ethnic groups, Hispanic women who are diagnosed are 20 percent more likely than white women to die from the disease. They are more likely to learn they have breast cancer at later stages of the disease, when tumors are larger.
This disparity persists, even as hospitals and nonprofits have pumped more resources into programs targeting Hispanic women.
“It is an important issue,” said Carol DeSantis, director of breast and gynecological cancer surveillance at the American Cancer Society. “One problem might be that they don’t think it affects them. But they should be getting screened, because it does affect Hispanic women. They want to catch it as soon as possible in order to improve their chances of survival.”
Doctors, nurses and advocates for patients blame the disparity on factors both medical — higher rates of diabetes — and sociological: cultural differences, language barriers and a desire to stay under the radar as anti-immigrant sentiment in the United States increases. All these factors have created obstacles that prevent women from getting screened, diagnosed and treated.
“Sometimes they have different ideas about breast cancer and screening and treatment,” said Kim Schmulowitz, a spokeswoman for Susan G. Komen Maryland. “A lot of times it is about educating them about when to get screened and dispelling some of the myths they might have about breast cancer.”
Komen, which has set a goal of reducing breast cancer death rates in the United States by 50 percent by 2026, funds Nueva VIDA and other programs that target Hispanics. The group believes it can reduce death rates by one-third by addressing disparities among vulnerable populations, such as Hispanics and African-Americans.
Komen and other groups have found that doing educational outreach to Hispanic communities, and hiring bilingual workers to help with doctor appointments and paperwork, have helped reduce gaps in screening, diagnosis and treatment.
The University of Maryland Marlene and Stewart Greenebaum Comprehensive Cancer Center hired a Hispanic outreach worker in 2014.
“She is right there with them,” said Rhonda Silva, division administrator for the center’s Baltimore outreach program. “She will hold their hand and sit with them and hug them. She speaks their language and helps them understand what’s going on.”
The center has found that many Hispanic women can’t take time off from work to see a doctor. Many work minimum-wage, hourly jobs and can’t afford to not get paid, or worse, to get fired. Others don’t know about checking their breasts for unusual lumps, or that good nutrition can improve breast health. Some don’t know whether there is a history of breast cancer in their family, because it’s not as widely discussed in the Hispanic community as it is among other groups.
Health advocates say that some Hispanic women, whether or not they are in the United States legally, have avoided seeing doctors or showing identification to medical workers as the Trump administration has increased enforcement against undocumented immigrants.
Avonne Connor, an assistant professor of epidemiology and oncology at the Johns Hopkins Bloomberg School of Public Health, said more research needs to be done into the ways biological factors and lifestyle affect breast cancer in Hispanic women. Even as more Hispanic women are getting screened for breast cancer, she said, the numbers of those dying have not improved proportionately — which leads her to believe there might be other reasons for the disparities.
Connor has studied the association between diabetes and obesity and their effects on the mortality rates of Hispanic women diagnosed with breast cancer in the San Francisco Bay area, New Mexico, Utah, Colorado and Arizona. She found that the prevalence of diabetes and obesity was significantly higher in Hispanics than in white women. Breast cancer mortality was higher among diabetics than among non-diabetics, and the difference was more pronounced among Hispanic women.
Other researchers have linked the high glucose levels, high insulin levels and increased inflammation caused by type 2 diabetes to the development of breast cancer.
“I feel like there have been large improvements with getting the message out about early detection,” Connor said. “Maybe we need to do behavioral intervention earlier rather than later.”
Contreras’ breast cancer was diagnosed through St. Joseph’s One Voice program. The hospital has scheduled times when an English-Spanish interpreter is present to assist with screenings. The women can then get treatment if they are diagnosed. Doctors and nurses have learned key phrases in Spanish to help the patients feel more comfortable.
“This was a group that was underrepresented and we needed a way to reach them,” said Dr. Ethan Rogers, a surgical oncologist at the hospital’s breast center.
Sandra Villa de Leon, Baltimore program coordinator for Nueva VIDA, took Contreras to the One Voice program. She went with Contreras to many of her doctor appointments, helped to interpret and tried to make her feel more comfortable.
Contreras didn’t have insurance, so Villa de Leon helped her get into a state program that pays for breast cancer treatment for low-income women.
Contreras has a 5-year-old daughter. She worried she could be left without a mother.
“I was so scared at first,” she said.
She said Villa de Leon helped smooth the process. Contreras now goes to follow-up appointments by herself. Villa de Leon still checks on Contreras from time to time.
Villa de Leon said Hispanic breast cancer patients once were lost in the system.
“We have prevented many people from dying,” she said.