Uterine cancer rates rising, Black women especially at risk

Linda Rider

By Rachel Crumpler

Light spotting. Constipation. Feeling tired. Skin losing its glow.

Martha Jean Williams, 57 at the time, dismissed all of it as routine aging. 

Months later, in October 2012, she went in for a regular checkup with her doctor. 

It turned out that she should have been more worried about the spotting. She had gone through menopause at age 50. In the seven years since she experienced no bleeding at all — until March. 

“I remember asking three different women about it because I’d already been through menopause,” Williams said. “They said, ‘Oh, no big deal. I bleed all the time.’ It wasn’t heavy or anything and it wasn’t every day, so I just ignored it.”

When she mentioned the light spotting to her doctor, he had a different reaction — one of concern. He told her to get a biopsy. 

The result came back: she had endometrial cancer, also known as uterine cancer.

Martha Jean Williams is an endometrial cancer survivor. She is part of the Endometrial Cancer Action Network for African-Americans where she serves as a board member and member of the group’s research partnerships committee.  Credit: Courtesy of Martha Jean Williams

The news was a shock. It was only the third time in her life that she’d been sick beyond a cold. This type of cancer was unfamiliar to her, even though endometrial cancer is the only major cancer type that is increasing in both frequency and mortality.

“I had no information whatsoever, had never had a conversation about uterine cancer,” Williams said. “I don’t know that I had even heard of it before I had it. I had heard of breast cancer and ovarian cancer, but this, no.” 

‘Greatest cancer disparity’

Williams, who lives in New Orleans, did not find out about the stark racial disparity in endometrial cancer outcomes — one of the largest disparities for any cancer type — until years later when she joined the Endometrial Cancer Action Network for African-Americans in 2018. ECANA is a national group of patients, doctors, survivors, community advocates and professional leaders committed to the single purpose of improving the lives of Black women affected by endometrial cancer.

Black women die of uterine cancer at twice the rate of white women, and the reasons for the disparity remain unclear. 

That’s an unacceptable fact for a group of researchers and clinicians at UNC Lineberger Comprehensive Cancer Center. That’s why they have research underway to investigate many factors such as tumor biology, access to care, and lifestyle and behavior that may play a role in survivorship.

The goal is to acquire vital knowledge that can be used to improve endometrial cancer outcomes and close the racial disparity gap.

“I think that endometrial cancer is probably the greatest cancer disparity in North Carolina, so it’s kind of about time that we paid attention to it now,” said Victoria Bae-Jump, director of UNC Lineberger’s Endometrial Cancer Center of Excellence and a gynecologic oncologist. “It’s on the rise both in frequency and mortality.” 

Increasing cases, increasing deaths

In North Carolina, based on preliminary 2020 data, there were 1,706 cases of uterine cancer — an incidence rate of 23.1 per 100,000. The same year, there were 408 deaths with a significant disparity in mortality, with a death rate for white women at 4.0 per 100,000 compared to a rate of 9.7 per 100,000 for all minorities.

Hazel Nichols, an associate professor in the epidemiology department at UNC-Chapel Hill’s Gillings School of Global Public Health who researches cancer, says it’s common for people to be diagnosed and say they have never heard of endometrial cancer, also known as uterine cancer, prior to the diagnosis. Nichols said this cancer type hasn’t gotten the national and local attention it deserves.

After all, it’s a cancer everyone with a uterus should know about. 

Currently, endometrial cancer is the fourth most common cancer among women in the United States. But with cases on the rise, cancer of the uterus is expected to pass colorectal cancer by 2040 as the third most common cancer among women.

Facts About Endometrial (Uterine) Cancer

  • In 2022, an estimated 65,950 new cases of uterine cancer will be diagnosed in the U.S. and 12,550 women are expected to die from it, according to the American Cancer Society.
  • Among all women, uterine cancer mortality rates have increased by 1.8 percent per year from 2010 to 2017.
  • Endometrial cancer mainly affects post-menopausal women. It’s uncommon in women under the age of 45.
  • Obesity is a strong risk factor for endometrial cancer. The cancer is twice as common in overweight women and more than three times as common in obese women.
  • Abnormal vaginal bleeding — either after menopause or between periods — is the most frequent symptom of endometrial cancer, along with pelvic pain.

For many other cancers, researchers have been successful in seeing overall declines in incidence and mortality rates as well as in reducing the gap between Black and white patient outcomes, said Nichols. Yet she said these improvements have not occurred with endometrial cancer primarily because it’s been underfunded and understudied.

Uterine cancer has consistently ranked at the bottom of research funding by cancer type. The National Cancer Institute reported spending an estimated $13.6 million on uterine cancer research in 2020, a drop from $18 million in 2019. The only cancer type with less NCI funding in 2020 was stomach cancer, which received $10.6 million. In comparison, breast cancer received more than half a billion dollars in research funding.

Last November, UNC Lineberger Comprehensive Cancer Center launched the Endometrial Cancer Center of Excellence to increase its focus on advancing scientific understanding of the causes, prevention and treatment of endometrial cancer. 

“Every year we have more deaths, we have more women diagnosed, and we don’t really completely understand why,” said Bae-Jump, the center’s director who was elected co-chair of the National Cancer Institute Gynecologic Cancers Steering Committee’s Uterine Task Force in May.

Looking for answers

One ambitious statewide, population-based study, the Carolina Endometrial Cancer Study, seeks to find answers, and it’s casting a wide net to do so.

Researchers are seeking to enroll about 1,800 adults ages 20-80 living in any of North Carolina’s counties at the time of their recent first diagnosis of endometrial cancer to learn why people have different outcomes and experiences. Women of all races will be enrolled, but the study has a particular target of enrolling at least 500 Black women.

Bae-Jump, a study investigator, said this study is the largest on endometrial cancer in the South, one of the first studies to include significant numbers of Black women and the first to look at different subtypes of endometrial cancer.

“The overarching goal is to address why are endometrial cancer outcomes worsening? And then why is that worsening particularly striking for Black women?” Bae-Jump said.

Past studies have identified potential drivers of the racial disparity, including that Black women are more likely to be diagnosed with advanced-stage cancer, have a greater prevalence of health conditions and are less likely to undergo surgery to treat their cancer.

Bae-Jump suspects the answer will be multi-pronged. That’s why the study is examining both biological factors and social determinants of health in its search for answers. 

“We’re trying to bring to bear all the different disciplines of public health and medicine so that we get this fuller view of the contributors to an endometrial cancer diagnosis and survivorship,” Nichols, one of the study’s principal investigators, said.

The first endometrial cancer patient was enrolled in the study in February 2021, Bae-Jump said, and she expects it to take four to five years to enroll the target number of study participants. Investigators identify potential study participants from the North Carolina Central Cancer Registry.

Participants are first asked to complete a thorough survey that includes questions about family history, medical history, lifestyle, treatment and access to care. 

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