For 58-year-old Beatriz Topete, cancer has been a part of her life from an early age. When she was barely a toddler, Topete lost her mother to leukemia. Fourteen years later, her half-sister, 3, was diagnosed with Wilms tumor, a type of cancer that affects kidneys. The girl survived.
Later, the disease took her 62-year-old father, two uncles and one grandmother. Topete was anything but surprised when doctors told her she had a rare muscle cancer called leiomyosarcoma this year.
Cancer was the second leading cause of death in Arizona in 2022. While white Arizonans had the highest cancer rates between 2017 and 2021 - 431.6 cases per 100,000 people, compared to 284.3 cases for Hispanics - the latter group has higher chances of dying from cancer than acquiring it compared to their white counterparts.
Topete's journey to pinpoint the cause of her painful bloating and bleeding took a year and a half, five different providers and one misdiagnosis. It wasn't until she went into the emergency room and insisted on a CT scan that finally revealed the tumor. Yet no concrete answers followed.
"The test results kept coming back, inconclusive, abnormal but inconclusive ... I decided to try the Mayo Clinic and even their test results came out inconclusive," Topete said.
Several appointments later, Topete agreed it would be best to remove the tumor.
Hispanics are less likely to develop the widespread types of cancer, such as breast, prostate and lung, but they are twice as likely to acquire mostly preventable cancers linked to infections. One of the most common cancers in the population is colorectal cancer and it often results in death, according to the American Cancer Society. Colorectal cancer can be a sensitive topic among Hispanics and the stigma adds to low preventative care and high death rates among cancer patients.
Topete's uncle, who passed from cancer last year, hid the disease from his family. It wasn't until the malignant tumor, which had grown in his spine, spread and hindered his ability to walk that the family found something was wrong.
"I've been working at a community level for almost 30 years. ... We've seen the shift where all the prevention funding kind of disappeared," said Floribella Redondo-Martinez, CEO of the Arizona Community Health Workers Association (AzCHOW).
AzCHOW, which serves primarily border communities and is located in Douglas, received over $500,000 from the Office of Minority Health this year to boost preventative efforts among underserved communities. The funding will go toward screening more adults for colorectal cancer and providing food vouchers.
"Factors also affecting colorectal cancer among adults, especially in rural areas, have to do with the intake of healthy foods available. ... We see a very low consumption of fruits and vegetables. We know that fiber, it's one of the key components that will help you prevent colorectal problems," said Ana Celia Martinez, AzCHOW deputy director.
A number of other reasons contribute to Hispanics' low engagement rates with medical professionals and how patients follow their care plans, like the cost of health care and language differences. The absence of personal connection at the providers' offices is also why people don't actively seek care, according to Adriana Maldonado, assistant professor and behavioral researcher at the University of Arizona.
"(They) tend to feel the lack of personalismo (personalized care). Those five minutes before getting into the nitty gritty about your medical visit: 'How are you doing? How's your family? How is your day going?' And that's what they miss," Maldonado said.
Hispanics report lack of trust in the U.S. health-care system and less satisfaction with the care they receive. "(Although) I'm Mexican, I'm fluent in Spanish ... they see me as an outsider. They see me as someone that is associated with the University of Arizona, someone that works for the government," Maldonado said.
Community health workers are a bridge between medical providers, researchers like Maldonado and residents. They share the same language and culture, promoting preventive care and warning about possible symptoms to watch for.
"Every single border community that we have, there's a lot of needs in our Hispanic communities. ... For us it's really important that when we serve statewide, we try to make sure that we have services that always come back to Douglas," Redondo-Martinez said.
Topete is insured through her employer and was fortunate to get diagnosed early, unlike many in her community. In 2022, nearly one-fifth of Latinos in Arizona - more than 2.2 million people - were uninsured, according to the Department of Health and Human Services.
"Uninsured patients have less access to cancer screenings that are covered under the Affordable Care Act. We know that cancer overall, even if you do have insurance, there's a huge cost associated with that," said Cassandra Webb, a program manager for the Comprehensive Cancer Control Program at the Arizona Department of Health Services.
Each year more Americans seek health care in Mexico - one of the most popular destinations for medical tourism globally. Traveling across the southern border to see a doctor is especially prevalent among Latinos.
"We conducted a study looking at pre- and post-migration health-care practices, and we saw that about 50% of our sample actually went back to Mexico to get services like your general annual physical exam or seeing the eye doctor or the dentist because of affordability and also because they're familiar with the how they're treated there," said Maldonado.
Topete remembers being a teenager and seeing her father struggling to pay for her sister's cancer care. "My dad's health insurance only paid up to $10,000 and then after that, they had to pay for it. And I remember looking at the bill back in 1984 and it was $60,000. I remember hearing my (step)-mom and dad worried about losing the house, and I think we owned some apartments. We lost those apartments," Topete said.
Transportation or taking time off work to see a provider adds up to the health-care treatment cost, and even free screenings don't seem beneficial if it leads to costly medical bills.
"People don't want to know they're sick because they can't afford to be sick. So if you have a family member who is the sole income earner, they literally have said, 'I didn't go to the doctor because I just couldn't afford to be sick," said Cancer Support Community Arizona CEO Julie Dunnigan.
Topete says she is glad she pushed through and insisted on the early diagnosis that might have saved her life: "I feel very fortunate because I feel like I am one of the lucky ones that was able to catch it early on. And I really, really do believe that it's because I have really good health care, and I have friends and the support of people around me."