Long drives and limited options: Indigenous women with breast cancer face harsh reality
Shannon Palmier felt a strange warm sensation in her chest, but she brushed it off.
It wasn't until the Oglala Lakota Tribe member had stomach cramps so severe she called an ambulance. While caring for her, the paramedic happened to remind Palmier to get a mammogram.
Palmier later did get screened, and a radiologist found a suspicious lump in her left breast that turned out to be cancerous. The retired food service worker was sent to her nearest cancer doctor – 120 miles away from her Pine Ridge Reservation in Rapid City, South Dakota.
Palmier, then 52, had a double mastectomy for her early-stage cancer. Several times a month, her husband would drive her more than 200 miles round trip for treatments.
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In her rural, sprawling community of widespread poverty, there aren’t specialty health services.
“I live in a desolate area,” said Palmier, 61, adding that homes on the reservation, including her own, recently got street addresses. “Physicians will come here, but once they come here and they figure out how it is, they don’t stay.”
Among early-stage breast cancer patients, Native American and Alaska Native women have significantly higher rates of mastectomies and lower rates of breast-conserving therapy than white women, according to a recent study published in the Annals of Surgical Oncology. Breast-conserving therapy consists of lumpectomy and radiation, and it comes with less complications and pain and better quality of life, according to multiple studies.
The disparity could be explained by health care access barriers many Indigenous people on reservations face, experts say, including lack of on-site cancer care, transportation, insurance coverage and patient education. Because breast-conserving therapy requires multiple, consistent trips to the doctor for treatments, it’s not a feasible option for many rural Native American women, possibly leading to the decision to have a mastectomy.
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“That’s where a substantial portion of the issue, I think, rests,” said surgical oncologist Dr. Jennifer Erdrich, the study's lead author a tribal member of the Turtle Mountain Band of Chippewa. “If someone’s in a very rural area and they have no subspecialty oncology services, and all their access is a general surgeon … that surgeon’s only choice he might be able to offer is a mastectomy.”
The University of Arizona professor's study is believed to be the first examining breast cancer surgical patterns in Indigenous women and found disparities were even more stark between regions: In the Northern Plains, almost half of Indigenous women with early-stage breast cancer had mastectomies, compared with about 36% of white women.
Among Alaska Natives patients, 47% were found to have gotten mastectomies versus just a third of white women.
Overall, across regions, the rate was 41% of Indigenous women compared with just 34% of white women.
Co-author Angela Monetathchi said previous research has explored rural and minority women's barriers to breast cancer care, including travel time, financial reasons, child care, caregiving and insurance.
“A lot of papers touched on these different themes,” said Monetathchi, who is Comanche. “What’s frustrating is that, since so many papers are touching on it, my question was, 'Why is it still happening, then?' Because it is.”
Indigenous women, researchers say, have the lowest breast cancer survival rates of any racial group, and cancer is their leading cause of death. Indigenous people suffer alarming health disparities compared with white people, and they rely on the chronically underfunded federal Indian Health Service for health care. But the agency pays only for primary care and refers patients for specialty health services.
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Hopi Tribe member Kellen Polingyumptewa is a program coordinator of a CDC-funded early detection program under Hopi Breast Cancer Support Services. The program helps coordinate transportation to appointments and sends mobile screening units through the Arizona reservation, whose communities are roughly 14 miles apart, he said. Research has shown Native Americans living on remote reservations struggle with access to screenings.
The first known cancer clinic on a reservation opened on the Navajo Reservation just two years ago through the Tuba City Regional Health Care Corporation. It also serves the Hopi Tribe. Up to that point, the closest cancer clinic to the Hopi Reservation was at least 90 miles away in Flagstaff, Arizona. The recently opened clinic doesn't yet have the capacity to see all of Polingyumptewa's patients, he said, and for mammograms, diagnostic screenings or chemotherapy, most still have to drive the 180 miles round trip to Flagstaff.
Many patients rely on family members to drive them and end up feeling like a burden, he said. He has known some patients to hitchhike or walk to appointments.
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“They would literally walk that mileage until they get picked up by a passerby,” he said. It’s “the biggest barrier – going back and forth, especially (for) chemotherapy, because oftentimes they would have treatments three to four times a month if not more.”
Family members often have to take the day off and risk not getting paid. “It’s very taxing on the patient and the family,” he said.
Polingyumptewa added that many Hopi breast cancer patients are uninsured and living below poverty. The new clinic started by a husband-and-wife oncology team with Tuba City Regional Health Care Center has been a welcome start, he said, but the center doesn't yet have the capacity to see all his patients. Most still go to Flagstaff, he said.
The pandemic made transportation harder. Contracts with nonmedical transportation came to a halt during social distancing and lockdowns.
“But people still needed their care. There were some that would walk. But there were some that didn’t go at all. Didn’t receive care," Polingyumptewa said.
The program is seeing the fallout of that now as more patients return with concerning symptoms, he added.
“Because of the barriers and the hesitancy to get access to their health care provider, oftentimes when they get to an oncologist or they get the diagnostics, it’s stage 3 rather than stage 1,” he said. “The options are limited. And, oftentimes, it results into a mastectomy.”
Marc Emerson, an epidemiologist and professor at the University of North Carolina’s Gillings School of Global Public Health, said prevention and early detection are difficult with limited resources.
“What’s difficult is when we’re already at the diagnosis and thinking about treatment. It’s really hard to think about how can we move the needle to think about prevention when there’s no specialist of any kind" on the reservation, he said.
Emerson, who is Navajo and Jemez, grew up on a farm in New Mexico’s northwest Shiprock community on the Navajo Reservation. When his father was diagnosed with late-stage stomach cancer, Emerson used to drive him more than 200 miles south of Shiprock – about 3½ hours – to consultations and surgical treatments in Albuquerque, New Mexico. His dad eventually died of the cancer.
The narrative echoes throughout his family: Various relatives drive at least an hour from their tribal towns to cancer treatments.
“In the overall socioecological framework … having to take time off work for these consultations and surgeries can be difficult and play into the decision (to get a mastectomy),” he said.
All difficulties – familial, financial, geographic – need to be taken into consideration to address the barriers, Emerson said.
"What’s really critical is thinking about these more holistically," he said. "It’s difficult, but I think it’s critical in how we start to frame out and think about what inequity looks like."