Cancer program navigates cultural barriers, red tape
on October 10, 2011
It took three years for Mayra’s doctor to biopsy the lump in her left breast. At each annual appointment, a hospital-provided interpreter translated her complaints about the strange nodule from Spanish to English. Each year, the response from the doctor was an assurance of a clear mammogram. The excessive discharge Mayra reported was dismissed as breast milk, though the Guatemalan native had never had children. When her symptoms worsened that third year, the doctor agreed to order further tests. Eight days later, she was diagnosed with breast cancer.
“That day I felt like I was dying,” Mayra said in Spanish from the passenger seat of a gold SUV en route to her appointment at UC San Francisco’s oncology center. “But I knew I had to get through it.”
“She was diagnosed in 2002 and had a lumpectomy, radiation and chemotherapy,” Lucero Barajas said from behind the wheel, navigating through stop-and-go Bay Bridge traffic while translating for Mayra, who preferred not to disclose her last name or age. “In 2009, it came back. She had a mastectomy and had almost completed treatment when she was diagnosed with ovarian cancer.”
It was this latest diagnosis that brought Mayra and Barajas from the East Bay to UCSF’s Helen Diller Family Comprehensive Cancer Center last week. Barajas, the Latino Program manager and community health advocate coordinator for Oakland’s Women’s Cancer Resource Center (WCRC) accompanied Mayra to the appointment—a service the center’s staff and volunteers often provide, offering transportation and translation services in addition to moral support. Most of the 13 volunteers Barajas manages are cancer survivors themselves.
Like many other women who utilize the center’s services, Mayra does not have access to her own vehicle, and the severe abdominal pain she had been experiencing made public transportation unbearable. Since immigrating to the East Bay in 1998, Mayra had learned enough English for casual communication but relied on interpreters like Barajas to decipher complicated health information.
Barajas encourages clients to request hospital-provided interpreters when available, in order to receive the most accurate translations of medical terminology. But she and Mayra both agreed that having her along that day would help with more than interpretation. “When somebody comes from the center, they pay more attention to me than when I come by myself,” Mayra said of the hospital staff she had encountered throughout the course of her care. “Maybe they feel more pressure to take better care because they know somebody will follow up.”
Follow-up is an important aspect of Barajas’ work at the center. Many of her duties involve assisting the women she accompanies with paperwork and helping them book additional visits if necessary. “A lot of clients get lost from one appointment to the next,” Barajas said, glancing in the rearview mirror. “They can fall through the cracks without follow-up.”
October marks the 25th commemoration of National Breast Cancer Awareness Month, a collaborative effort by nonprofit organizations, medical associations and government agencies to promote public consciousness of the disease. Though the cause has garnered growing media attention, breast cancer remains an epidemic: The most recent report on breast cancer statistics from the American Cancer Society predicts an estimated 39,520 women will die from the disease this year.
According to the report, breast cancer remains the second deadliest cancer among women, surpassed only by lung cancer. Although the disease affects women of all ages and ethnicities, the survival rates among African Americans and Latinas are particularly low. The report states that Hispanic women are less likely to be diagnosed with breast cancer at its earliest stage and their five-year survival rate is lower than that of non-Hispanic white women—83.8 percent compared to 88.8 percent. African American women have only a 77.5 percent five-year survival rate.
Barajas agrees that breast cancer disproportionately affects women of color because many African American and Latina women are not diagnosed and treated until the disease has progressed to an advanced stage. “With certain cancers, African American and Latina women have higher mortality rates, even though their incidence rates are not always higher,” Barajas said. “There are of course a lot of factors, but a piece of that is women from both groups face barriers culturally. Many are low-income and don’t have the resources for transportation, for food, for rent.”
Barajas says that some of the obstacles frequently encountered by low-income women of color include a lack of health insurance and a mistrust of the medical system, both of which can prevent women from seeking preventative treatment or help during the early stages of their illness. A 2009 Michigan State University study funded by the Susan G. Komen For the Cure foundation reported “44 percent of minority women who have never had a breast examination believed that healthcare organizations sometimes performed harmful experiments on patients without their consent.” A 2008 study published in The Journal of Cancer Epidemiology, Biomarkers and Prevention reported that “nearly half of minority women who sensed discrimination by their healthcare providers were less likely to undergo screening for breast cancer.”
Other obstacles to seeking early treatment are primarily cultural, Barajas said. “It’s not in the culture to speak about cancer,” Barajas said. “Women in the Latina culture are the ones who put the families together and are the caretakers. Very often, people feel they can no longer be women when they’re diagnosed with cancer and have to be cared for. They don’t want other people to worry about them so they don’t disclose it.”
The center ’s Latina Services Program, instituted in 1997, was modeled after the center’s Sister to Sister program for African American women. “It’s important for us to get the word out,” said Dolores Moorehead, the center’s client services manager and Sister to Sister program manager. “There is still a misunderstanding with some individuals feeling like breast cancer is not an African American disease. Many say it’s a white woman’s issue.”
Barajas and Moorehead say that the cultural interpretation of femininity in both Latina and African American communities can also be a barrier for women seeking diagnoses or treatment. “The female is the matriarch of the family, the backbone of the family,” Moorehead said. “You may have a little pain but if it’s not stopping you from getting up and taking care of your family, you deal with it tomorrow.”
“Even if someone is diagnosed, they want to protect the family from worrying. And if there is a need for a mastectomy, women have a sense that they’ll lose their femininity,” Barajas said.
And even with medical coverage and community support, care can still by difficult to navigate. Barajas pulled up to UCSF’s Mount Zion campus, handed her car keys to the black-jacketed valet attendant and quickened her pace to follow Mayra into the lobby elevator, explaining why that day’s visit is so important. Mayra’s complicated double cancer diagnosis had led to a referral to a specialist at UCSF, but her insurance had been reluctant to cover these out-of-network appointments, despite the close relationship Mayra had previously developed with the doctor. Barajas and others at WCRC had been able to negotiate some out-of-network appointments, so today would be Mayra’s first appointment with her preferred doctor in months.
But as Barajas and Mayra sat in the brightly lit waiting room discussing which questions to ask the doctor, it remained unclear whether her insurer would approve any future visits. That would depend on the results of Mayra’s most recent blood tests. She fidgeted with the lab report in her hand. Mayra said she didn’t understand most of the document’s English medical jargon, but she recognized one term on the paperwork she held: carcinoma.
The receptionist handed Mayra a multi-page form regarding her medical history. Barajas looked it over and asked if there might be a Spanish version. “I only have it in English,” the receptionist said, advising Mayra to take the form home and mail it back if she could find someone to help her fill it out. Barajas translated the receptionist’s suggestion and Mayra nodded. Barajas promised that someone at the center would help Mayra with the form.
After a brief wait, a nurse called Mayra’s name and escorted her and Barajas past the reception desk, through a narrow corridor, then into a small examination room. As they waited for the doctor, Barajas and her client sat side by side, bathed in the room’s fluorescent lighting, taking deep breaths. Mayra had suddenly grown anxious and Barajas suggested deep inhalations to calm her nerves. They sat silently, inhaling and exhaling the antiseptic air.
The doctor entered the room and she and Mayra greeted each other warmly, exchanging a few words in English before Barajas began translating for them. As the doctor pored over the lab report, Mayra repeatedly balled one hand into a fist and released it.
After scanning the document, flipping the pages back and forth and furrowing her brow, the doctor locked eyes with Mayra and delivered the news matter-of-factly.
She explainedthat the ovarian cancer had returned and recommended another course of chemotherapy immediately. Barajas translated the news and Mayra gasped quietly.
As the doctor explained potential clinical trials and treatments, Mayra kept her eyes on the doctor and Barajas steadily kept her gaze on Mayra. Barajas took notes, interrupting only to ask for the proper spellings of the various suggested medications.
After a brief pelvic exam, the doctor led Mayra and Barajas back into the hallway, assuring them that she would help in the negotiation of further insurance-approved appointments. Barajas helped Mayra schedule a follow-up visit and the two made their way back to the elevator, talking about the doctor’s attentiveness during the hour-long appointment.
Back in the lobby, Barajas suggested a quick lunch before getting back in the car. She and Mayra ordered tuna fish sandwiches, joking and laughing with the Spanish-speaking cafeteria worker, before sitting down at an empty table. As they ate, neither one spoke of the diagnosis, of doctors, or of chemotherapy. Mayra talked only of the American children she babysat and how much they adored her. She said the three of them often embraced her and lay their heads on her stomach. She said they learned to ask for foods and drinks by their Spanish names, even requesting leche from their parents instead of milk.
Then Mayra and Barajas climbed back into the SUV and buckled up before heading toward the Bay Bridge. On the ride back, nobody spoke of Mayra’s diagnosis; the two were focused on avoiding rush hour traffic so they could get to a cancer support group meeting for Latina women at Alta Bates Summit Medical Center.
If Mayra’s heath insurance allows her to return to to UCSF, the doctor will begin her chemotherapy treatment within two weeks. If not, Barajas and others at the center will continue to negotiate for additional out-of-network appointments
In the meantime, Mayra said, she would continue using the center’s services and contributing to the organization as a volunteer, speaking to others about her own experiences. “I learned that so many other women didn’t know there was help and support and resources out there,” she said. “Now I also help when I know someone is diagnosed.”
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