Many Women Get Endometrial Cancer, But Black Women Are Twice as Likely to Die—Here's Why

When Adrienne Moore saw her gynecologist for vaginal bleeding, pain, and heavy breathing in spring 2015, she was told she was in perimenopause—the stage before menopause when hormone production begins tapering off—and sent on her way.

Moore's pain and bleeding persisted. But because she didn't have health insurance, she didn't see another gynecologist until she started a job that provided medical coverage more than a year later. At that point, Moore says her symptoms were much worse. "I was in pain and bleeding constantly," she tells Health. It wasn't until March 2016 that Moore received the correct diagnosis: stage 3 endometrial cancer.

She subsequently had a hysterectomy and underwent six rounds of chemotherapy. She also received 25 rounds of radiation treatment, which caused severe nerve damage in her left leg as well as a bowel obstruction. But a year after her diagnosis, in 2017, doctors gave Moore the all clear: She was in remission, and she remains cancer-free.

Endometrial cancer, which is the most common type of uterine cancer, forms in the endometrium, the layer of cells that lines the uterus. It usually affects postmenopausal women, and the average age of diagnosis is 60 years old, according to the American Cancer Society (ACS).

As a Black woman, Moore, now 48, was more likely to die from endometrial cancer, despite the disease being slightly more common in white women. According to the ACS, the uterine cancer death rate for non-Hispanic Black women was 8.9 per 100,000 women from 2014 to 2018, compared to 4.5 for non-Hispanic white women. That's despite an incidence rate of 27.6 diagnoses of endometrial cancer per 100,000 for white women, while the incidence rate in Black women was 27.4.

Doctors have identified many factors that contribute to this health disparity—some controllable, others not—but there is still much research that needs to be done to find out why Black women in the US face higher uterine cancer mortality rates. Here, we dig into these factors and ask doctors who study and treat endometrial cancer what measures should be taken so more Black women survive.

Black women are less likely to have health insurance and access to quality care

In 2017, 13.9% of Black women in the US ages 18 to 64 were without health insurance, according to a 2019 report from the National Partnership for Women & Families (NPWF), a nonprofit that focuses on improving public policies. American Indian and Alaska Native (AIAN) women and Latina women were the only two groups with higher uninsured rates (21.1% and 19.9%, respectively). Only 9% of Asian women and 8% of white women were uninsured.

This lack of insurance means Black women are more likely to put off seeking medical attention and having regular preventive screenings, Ahmedin Jemal, DVM, PhD, senior vice president of surveillance and health services research at the American Cancer Society, tells Health. Other barriers keeping women from good health care they need include the inaccessibility of services, costs, and "lack of culturally competent care"—or the ability of systems and providers to care for and cater to patients with diverse values, beliefs, and behaviors—according to the US Department of Health and Human Services.

For Black women with endometrial cancer, a lack of health insurance and access to care may contribute to later diagnoses and surgical interventions—two things that can widen the mortality gap between Black women and others. "With endometrial cancer, it's something that typically should be found at an early stage," Eloise Chapman-Davis, MD, a gynecologic oncologist at Weill Cornell Medicine in New York City, tells Health. "[But] there's much more risk that a Black woman's going to present with an advanced stage cancer than a white woman."

A 2017 research letter published in the American Journal of Obstetrics & Gynecology focuses on that mortality gap, revealing that Black women with endometrial cancer have a 55% higher mortality rate than white women with the same disease. Part of that discrepancy is due to modifiable factors, like fewer surgeries and more late-stage diagnoses. Based on a simulation model by the letter's co-authors, "40% of the black-white mortality gap in endometrial cancer is due to inequitable surgery rates and stage distribution." Due to this significant racial disparity, the article's authors say improved surgery rates and earlier diagnoses are actionable ways that may reduce endometrial cancer's mortality rates among Black women.

Black women are more likely to have health issues misdiagnosed

It's not just late-stage diagnoses of endometrial cancer—Black women in particular also face higher odds of being misdiagnosed even when they do seek medical care, Ebony Hoskins, MD, a gynecologic oncologist at MedStar Health in Washington, DC, tells Health.

Dr. Hoskins has witnessed this disparity firsthand. "I've seen women who have the symptom of heavy bleeding or irregular bleeding, and the workup hasn't been thorough like it should have been," she says. She explains that a routine workup when any woman of any age presents with endometrial cancer symptoms—pelvic pain, heavy vaginal bleeding, weight loss—should include an ultrasound. Sometimes, it necessitates a hysteroscopy, a diagnostic procedure that allows a doctor to inspect a woman's uterine cavity.

These misdiagnoses or late-stage diagnoses may be fueled by the implicit bias—underlying stereotypes that affect decision-making in an unconscious way—that plagues the health care system. A 2015 systematic review in the American Journal of Public Health found that "Most health care providers appear to have implicit bias in terms of positive attitudes toward whites and negative attitudes toward people of color." This obviously has an effect on Black women who seek medical care for endometrial cancer symptoms, Dr. Hoskins explains. "[The doctors will say,] 'Oh, well you're fine. You're young. Nothing has to be done,'" she says. "Come to find out, a year later, she has a cancer, and we're not sure if it was a cancer before."

Biological or genetic factors may be at play

While health insurance and access to care are significant factors in endometrial cancer's disproportionate impact on Black women, there may also be a biological component that leads to worse outcomes, Nicolas Wentzensen, MD, PhD, deputy branch chief and senior investigator at the National Cancer Institute's Division of Cancer Epidemiology & Genetics, tells Health.

Researchers don't fully understand the biological components that contribute to the disparities in endometrial cancer death rates, but there are some theories: A 2009 review article in Cancer Control explains that there are certain "genetic differences in tumors" between those found in Black women and those found in white women. Those include mutations in what are known as tumor suppressor genes—or genes that slow cell division, repair DNA mistakes, and tell cells when to die—that can lead to out-of-control cell growth and cancer.

Additionally, overexpression in the HER2 oncogene, also associated with poorer survival rates, has been observed more often in Black patients than white patients. But while the data suggest a biological reason that Black women with endometrial cancer suffer worse outcomes, the lack of controlled studies means doctors don't know anything for sure—including whether the genetic differences are merely correlated with worse outcomes in endometrial cancers or if they're somehow causing those outcomes.

Across the board, endometrial cancer is generally worse for Black women, according to a paper published in Cancer Epidemiology, Biomarkers & Prevention in 2015. "For nearly every stage and subtype, the 5-year relative survival for [non-Hispanic Black] women is significantly less than [non-Hispanic white] women, whereas Hispanic and Asian women have the same or better survival," the paper says. After pointing out that the endometrial cancer incidence rate is rising "for all women," the paper clarifies that poorer survival and higher incidence rates of the more aggressive cancers are limited to Black women.

The previously mentioned research letter in the American Journal of Obstetrics & Gynecology also points out this disparity: "There are biological, nonmodifiable differences by race." The letter goes on to say that on a cellular level, Black women are twice as likely to carry "near double" the mortality risk compared to white women. Kemi Doll, MD, an assistant professor of gynecologic oncology at the University of Washington School of Medicine and project lead at Endometrial Cancer Action Network for African-Americans (ECANA), writes that Black women might also have the disadvantage of "harboring more molecular markers of aggressive disease."

Obesity appears to be linked to higher rates of some types of endometrial cancer—but not all

The American Cancer Society says that obesity is a strong risk factor for endometrial cancer—primarily because having more fat tissue can increase a woman's estrogen levels, which can increase her endometrial cancer risk. For all endometrial cancer cases, women considered overweight (a BMI of 25-29.9) are twice as likely to be diagnosed with endometrial cancer than those with what's deemed a "normal" BMI. Women who fall into the obese category (a BMI of over 30) are three times as likely to develop the disease.

But while obesity is a known risk factor for endometrial cancer in general, it isn't strongly associated with the more severe types of endometrial cancer—or what's known as "high-grade tumors"—that affect Black women at higher rates than white women. "These high-grade tumors have not been very strongly [associated] with obesity," Michelle Cote, PhD, MPH, a professor in the department of oncology at Wayne State University School of Medicine who specializes in molecular epidemiology and health disparities, tells Health.

Stephanie Ricci, MD, a gynecologic oncologist at Cleveland Clinic agrees, telling Health that while we know that obesity contributes to "less-aggressive endometrial cancers," that's not the case for the more aggressive types.

We're still not talking about sexual and reproductive health enough

It's difficult for many women—because of stigmas or cultural reasons—to talk about their reproductive health. Not having open, honest conversations with their doctors or other female family members about reproductive symptoms ultimately affects their health and well-being.

"There's still some kind of embarrassment talking about gynecologic cancers," Dr. Cote says. Endometrial cancer runs in the family for some of Dr. Cote's patients, for example, but they don't always come to her knowing that. "[Patients] will know their mom died," but they won't know it was from endometrial cancer because gynecologic cancers are still associated with a stigma, Dr. Cote explains.

A 2018 report published in Health Equity states that African American women's sexual and reproductive health has been compromised by discriminatory health care practices from slavery through the post-Civil Rights era. To destigmatize sexual and reproductive health within the African American community, the report says, experts must develop strategies "informed by an understanding of the historical enduring legacy of racism in the United States."

Dr. Chapman-Davis explains that some of her Black patients don't trust the first opinion they get if it came from a white physician. "It's somewhat of a trust situation, [and] this is based on a historical perspective," she says.

There's a lack of research and awareness, which influences endometrial cancer rates

Cancer is the second leading cause of death in the US, outdone only by heart disease, according to the CDC—but cancer is significantly less deadly today than it was 20 years ago. From 1999 to 2016, the cancer death rates for men, women, and children in the US all declined, per the ACS. For women, death rates for the three most common cancers (breast, lung, and colorectal) decreased from 2012 to 2016. During that same time period, only five cancers that affect women saw increasing death rates, with liver and endometrial cancers seeing the steepest rise.

But while many cancers are becoming less common in the US, endometrial cancer is actually becoming more common—and it's rising at a faster rate for Black women, George Maxwell, MD, who works in gynecologic oncology at Inova Fairfax Hospital in Falls Church, Virginia, tells Health. According to the National Cancer Institute, there were 24.4 new observed cases of uterine cancers and 4.2 deaths among every 100,000 people in the US in 1992. By 2017, those numbers had risen to 28.1 new observed cases and five deaths per 100,000 people. The American Cancer Society predicts that about 12,940 women will die from cancers of the uterine body, the main part of the uterus, in 2021.

Dr. Hoskins says the lack of funding for research dedicated to endometrial cancer definitely doesn't help the increasing death rate. "I think funding is the bigger issue. That's certainly a factor," Dr. Hoskins says. "We all know that this exists, [but] what exactly are we doing to study it?" Dr. Cote highlights the need for more funding with an alarming truth: "We have made really zero progress in terms of five-year survival from the 1970s to now."

National Institutes of Health (NIH) research funding amounts spell out just how relatively little money goes toward further understanding endometrial cancer. In the 2018 fiscal year, breast cancer research received $574.9 million in NIH research money, and $120.8 million went to ovarian cancer research. That's compared to $17.5 million devoted to endometrial cancer research.

One reason: The usually treatable cancer is also fairly uncommon compared to the deadliest cancers in the US. "Breast, colon, and lung get a ton of funding," Pamela Soliman, MD, a gynecologic oncologist at MD Anderson Cancer Center, tells Health. "Understandably: There's 250,000 cases of breast cancer a year." (The ACS forecasts there will be 66,570 new uterine cancer cases diagnosed in 2021.)

Another reason endometrial cancer gets less attention is that it's usually treatable. Patients don't necessarily need chemotherapy or radiation, says Dr. Cote. This suggests that endometrial cancer is much less worrisome than other cancers. "For the majority of people who get endometrial cancer, it's just a bump in the road." As a result, "There's not much attention on the morbidity associated with it."

Ultimately, the less common a type of cancer is, the less attention it gets. "Everybody has a friend or relative that's been affected by breast cancer. It makes it a little bit more personal," Dr. Soliman says. "There's a lot of breast cancer survivors. So there's a lot of attention to it because women [survive it] and advocate for themselves or their family members." That patient advocacy presence isn't nearly as vocal within the endometrial cancer community. "The general population risk of endometrial cancer is 3%. So most women don't know someone who had it," adds Dr. Soliman.

African American women have also been underrepresented in clinical trials focused on gynecologic oncology, according to a June 2019 paper published in Gynecologic Oncology. The authors of the paper state that, among 357 publications that involved 9,492 patients, a racial breakdown was provided for just 83 studies. Five percent of the patients in those 83 studies were African American, the paper says. This research highlights the fact that even when research on endometrial cancer is conducted, it doesn't necessarily mean all women are equally represented within that research. The paper concludes: "A significant racial disparity in phase 1 gynecologic oncology clinical trials has existed for nearly three decades. Based on this study, significant attention should be directed toward strategies to enhance equity of African American patient enrollment onto phase 1 gynecologic oncology clinical trials."

Where do we go from here?

That's the question Dr. Doll is focused on answering. She started ECANA to educate Black women and help them become more aware of what endometrial cancer symptoms they need to watch out for. "We should have awareness of endometrial cancer. I want women, especially Black women, to have that awareness we have with breast cancer," Dr. Doll says.

Her strategy has been successful: Moore started looking for women with stories similar to hers after she was treated for endometrial cancer, thanks to Dr. Doll's efforts. "I started to search out resources for support. I didn't have an idea about how many people who looked like me were out there with endometrial cancer," she says. Getting to know people at ECANA helped Moore realize how much more common endometrial cancer deaths are for African American women. Moore was also disappointed by the lack of awareness about this problem, and she says this contributes to the problem itself. "Racial, economic bias—when it comes to health care—all these things lead to our increased mortality rates."

The bottom line: While medical researchers continue to examine the genetic components of endometrial cancer's disproportionate effects on Black women, the higher mortality rates of the disease in those women highlights health disparities for Black women (and even the larger Black population as a whole). These disparities are fueled by controllable factors that health care providers and policymakers can change: Addressing barriers to health insurance access, providing funding for increased research, and promoting awareness of Black women's susceptibility to more severe forms of endometrial cancer are all a start. "The cure's in the care," Moore says. "If people start to think, 'I heard about this. Let me go see a doctor.' That's what's going to increase our survival rate."

This is where education can come into play. "Being aware: That's what we can do," says Dr. Hoskins. "Perhaps we can diagnose a bad disease earlier. And that can impact survival."