Hispanic Breast Cancer Clinic aims to make care more accessible

Erika Aleman of Cicero took up running a few years ago to have time to herself. Then she started challenging herself by running marathons. Her goal: to qualify for the Boston Marathon.

As her training progressed, she lost weight — 20 lbs. to be exact, some in her breast area.

“Thanks to that, I was able to find my lump,” said the mother of two. “I started running to take care of myself and to make my daughters proud and then I found a lump in my right breast.”

That was in November 2021. Her physician thought it was a cyst. Aleman insisted it was cancer. But she held out hope. Because she had to pay out of pocket for her mammogram during the height of the pandemic, she got the mammogram in January 2022, and was officially diagnosed with triple-negative cancer in March 2022 at Northwestern Memorial Hospital.

“It’s so funny because when they say triple-negative, I’m like, ‘It’s negative, negative, negative, a stage zero, right?’” Aleman said. “And they’re like, ‘No, it’s actually a very aggressive type of cancer.’ It was stage 2, grade A. I was devastated. I need to be OK for (my family) to be OK. Because if I’m not OK, they are never going to be OK.”

Aleman, 44, who works as a nanny in Elmhurst, said her aunt died at the age of 56 from ovarian cancer. Aleman, who is Hispanic, said her aunt didn’t go to a doctor because she was embarrassed, and by the time she went to a doctor, it was too late.

“Our culture is so different,” Aleman said. “My mom, my grandma, when they were sick, they never complained. We feel like a green tea is gonna cure you and we need to stop thinking that.”

Northwestern’s new Hispanic Breast Cancer Clinic, which opened Sept. 1, was created to make cancer care more accessible for the Hispanic population. Dr. Claudia Tellez, medical director of the clinic and a 25-year oncologist at Northwestern, said that since she’s been practicing, many Spanish-speaking patients have gravitated toward her, but not as many as she had hoped.

“I consistently saw less than 10% of Hispanic patients in that population of patients that I saw, and always thought, ‘I’m sure it’ll increase over time as people realize that I speak Spanish, when word gets around the community?’ And it never did,” said Tellez, a native of Bogotá, Colombia.

Tellez thought it was important to develop a center focused on providing culturally sensitive care, bilingual support and educational resources tailored to the needs of Hispanic cancer patients.

“They are interested in higher levels of care; they just don’t know how to navigate the system,” Tellez said. “They’re afraid. They think they might not have the right insurance, might not have insurance at all. They don’t speak the language, which is a huge barrier. And if you don’t speak the language, I think seeking out care in a place like Northwestern is so difficult. All these different barriers, we’re trying to understand and break through to get patients here.”

Dr. Roberto Carlos Montoya Barraza, oncologist at Advocate Good Shepherd Hospital in Barrington said multiple factors contribute to the disconnect between cancer prevention and treatment and the Hispanic community, including financial barriers, cultural differences, health disparities and language barriers. Tellez said that is why she sees women in the Hispanic community being diagnosed with cancers that are more aggressive — triple-negative breast cancer and HER-2 positive breast cancer, which require targeted treatment plans — and with prognoses that are less favorable.

According to the American Cancer Society, breast cancer is the leading cause of cancer death among Hispanic women in the U.S. The disease is also more often diagnosed at a younger age and at more advanced stages for Hispanic women. And Hispanic women in the U.S. are about 30% more likely to die from their breast cancer than white women, according to the Breast Cancer Research Foundation.

The Hispanic Breast Cancer Clinic offers a multidisciplinary team of experts, supportive care specialists and staff who all speak Spanish, including a nurse, medical assistant, social worker and research assistant, all of which Tellez hopes will improve health care access — from the first phone call to the center seeking help and throughout the cancer journey. The clinic is open Fridays from 8 a.m. to 1 p.m. at 250 E. Superior St. in Chicago.

“The entire team that these patients encounter will speak their language, which will certainly make them more comfortable,” Tellez said. “We’ve been working tirelessly going out to the community. … We hope that this becomes such a popular offering that people are coming in and we’ll have to expand the hours, the days and potentially even expand into other sites. I’m hoping that we’ll be able to create more in-person support with psychologists … potentially bring a Spanish-speaking surgeon to the program. This is going to grow as the demand increases.”

Tellez wants to make sure the new clinic increases the number of Hispanic patients participating in cancer clinical trials. Given the size of the Hispanic community in Chicago, Tellez said a third of the patients in clinical trials should be Hispanic, instead of less than 8%.

“Participation in clinical trials often means access to new drugs or treatments that aren’t available otherwise,” Tellez said. “More participation and representation also create an opportunity for clinical trials that are very specific to those subtypes, such as triple-negative, and can help improve treatments for the disease.”

Aleman welcomes the center. She said she was waiting for the doctor to tell her how long she had to live.

“I thought I was going to die. … I needed to tell my girls,” Aleman said. “I was praying so much. So when they told me I’ve got a 98.9% chance of surviving this, I said, ‘Bring it on.’ The doctor told me don’t stop living, and I asked, ‘Can I still train for my marathon?’ She said yes. So I trained for the 2022 Chicago Marathon during my cancer treatment (20 rounds of chemotherapy and immunotherapy). I kept running, but it was really hard because sometimes I couldn’t even put my shoes on, but when I couldn’t run, I walked around my living room. Running gave me control of something, and that gave me hope.”

Aleman underwent a bilateral mastectomy four days after completing the 2022 marathon. She was cancer-free when she ran the 2023 Chicago Marathon.

“Oct. 19 was my one-year anniversary,” Aleman said. “I’m going … to continue running until my legs allow me.”

She didn’t qualify for the Boston Marathon, as she’s still recovering. But she did cut an hour off her time, so she’s hopeful she will qualify for Boston one day. At the moment, she’s celebrating her survivorship and is grateful that she found her cancer was genetic. That’s knowledge and information she can pass on to her daughters, ages 23 and 17.

“I’m glad that it happened because now I have the tools to help them. Now, I have that knowledge to guide them,” Aleman said.

She has spoken to both children about getting tested for the BRCA and other gene mutations.

“It’s amazing that they’re doing this for the Latino community,” Aleman said of the clinic. “I am spreading the word. I’m telling everyone to touch their boobs. On Facebook, I’ve been having a lot of messages: ‘Erika, I think I have this; should I go?’ I’m like, ‘I’m not a doctor, but if you feel that your body is not right and something’s wrong, go.’ Don’t wait for the right moment. There is never going to be the right moment.”

Tellez said she wants “to raise the bar of the level of care that is being provided for all the women in Chicago, in Illinois and certainly the country and hope that this will also be a model for how we take care of other ethnic groups.”

The Hispanic Breast Cancer Clinic opened at time when research, like the Association of Historical Redlining and Present-Day Social Vulnerability with Cancer Screening study, shows historically racist practices, like redlining, continue to yield lower screening rates for cancers. The ramifications persist for those who live in areas where a lack of investment has been a problem for decades, according to Dr. Timothy Pawlik, surgical oncologist and surgeon in chief of The Ohio State University Wexner Medical Center and co-editor of the book “Social Determinants of Health in Surgery.”

“We need to be screening more for social determinants of health, as providers; I’m not just asking my patients, ‘Do you have diabetes, high blood pressure?’ I’m also asking, ‘Do you have transportation to your next appointment?’” Pawlik said. “Health care systems have to be more purposeful in their strategic approach to health equity. It needs to be a big focus, especially in vulnerable communities.”

The most important person in the equation is the patient, said Dr. Samilia Obeng-Gyasi, who is co-editor with Pawlik, as well as a breast surgical oncologist and an associate professor of surgery at The Ohio State University Wexner Medical Center. “It’s important for the health system and individuals who are experts to find ways to communicate with people that are meaningful,” she said. “But more importantly, help them understand the data that is out there and interpret it in ways that are going to be meaningful for their medical decision-making. Getting a good understanding of the patient’s value system and being able to provide the patient with information to help their medical decision-making, and having more linguistic and cultural inclusivity is what’s really going to be the key to get people to really participate in their health care.”

To make an appointment with the clinic, call 312-472-0805.

drockett@chicagotribune.com