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In celebration of Hispanic Heritage Month and Breast Cancer Awareness Month the California-based John Wayne Cancer Foundation funded a program to increase breast cancer research and awareness in Latina women from the Omaha metro area.
Roxanne Fellbaum-Hernandez of Bellevue, Nebraska was changing her clothes when she noticed her breast hurt. It was 2004, she was 22 years old, a mother of three, and her husband was deployed.
"I would notice in the shower that I had this lump on my breast," she said.
However, she didn’t get it checked for months. Her kids were her priority, she said. When her husband convinced her to go see a doctor, they told her she had Stage 4 breast cancer.
It’s common for Latina women to report problems too late, said Romeo Guerra. He’s the executive director of El Centro de Las Americas, a non-profit in Lancaster County providing services to the Latino community.
"Prevention is not a real effort that happens in the Latino community a lot," he said. "I think we try to wait until it’s, in many cases, actually, too late."
He said Latino communities don’t really talk about breast cancer or know much about it. Especially within families, Hernandez said. Nobody in her family ever had cancer.
"When they gave me the diagnosis, I was more numb, because I was like, trying to figure out what it was. What is cancer?" she said.
Hernandez, like most Latina women, had factors that usually prevent breast cancer, like early childbirth, having multiple children, and breastfeeding, said Dr. Lazaro Spindola. He’s director of the Latino American Commission in Nebraska. However, he noticed something different when he was minority health coordinator at East Central District Health Department in Columbus, Nebraska.
"Even though less Latina women were diagnosed with breast cancer, breast cancer was the first cause of death for those Latina women," Spindola said.
Dr. Juan Santamaria wants to change the fate of his people. The surgical oncologist at University of Nebraska Medical Center recently received program funding from the John Wayne Cancer Foundation. The program will help Latina women learn about breast cancer, how to prevent it, and how to fight it. One of the ways he’s doing that is by training future patient advocates. These are women who have experienced cancer treatment, and will help new patients in their journey, from what to expect in chemotherapy, to insurance issues, body image problems and more.
"Many women, when they hear they have cancer, then their brain shuts down, and they don't hear anything else," he said. "So it's a second set of ears, a helping hand, and a person living in the community who identifies with the patient, linguistically, ethnically, racially. That is also very powerful."
In Nebraska, only 35% of Hispanic women receive annual mammography screenings to detect breast cancer early. That’s 13% less than white women, according to the 2021 County Health Rankings & Roadmaps.
Dr. Santamaria’s program also aims to build trust with Latina women by informing them in Spanish about screenings, breast cancer, and treatments like clinical trials on social media.
"The problem comes that many times they decline that treatment, or they don't trust it, or they wait too long to get treated," Santamaria said.
Dr. Spindola agrees. He said cancer information is complex, and many Latina women never finish high school. Breast cancer survivor Hernandez thinks they’re just scared.
"My mom would see me get very sick from chemo and the radiation and she, instead would just get so frustrated at the doctors and was like, 'Why is she getting sicker and not better?" she said. "It's very common in Hispanic families because they don't understand that that's just the medicine that's doing its job."
The distrust leads to a major lack of minority representation in clinical trials. Dr. Santamaria said the best way to learn about which cancer treatments are most effective is through clinical trials and minorities need to be a part of that research. He hopes to expand the program to other women, including Black and Native Americans.
After being in remission for 15 years, Hernandez said getting checked is a matter of life and death for Latina women.
"Vayan al doctor, just means go to the doctor," she said. "It's super important, not just for yourself, but for your family. Because, I know how important family is and how it's very much instilled in you growing up."
She said you're not going to be able to take care of your family unless you take care of yourself first. That’s something she didn't learn until later on in life.