Untangling Race-based Disparities in Endometrial Cancer

Tiffany White was 27 years old when she was diagnosed with endometrial cancer.

White, a Chicago resident who works as a mental health counselor and an accounting director for a national nonprofit organization, presented to her gynecologist with tiredness, pain, and bleeding between periods. An ultrasound revealed the presence of polyps. After a hysteroscopy to remove the polyps, cancer cells were found, and White was referred to an oncologist.

Studies have found that Black women, and younger Black women especially, are more likely to present with aggressive and/or advanced cancers. White’s oncologist placed her on hormonal treatment with progestins — a conservative approach that can help delay hysterectomy but should be considered only for people with early stage, low-grade endometrial cancers, according to the American Cancer Society (ACS), National Comprehensive Cancer Network (NCCN), and clinical guidelines.

White said she was not advised of the risks of conservative treatment, though NCCN guidelines state that patients must be counseled that this is not the standard of care (SOC). Surgery, instead, is the SOC, for a patient with uterine cancer cells.

White continued to experience symptoms. A physician friend urged her to seek a second opinion, which she did. In September 2022, 6 months after seeing her first oncologist, White received more extensive imaging and learned that her cancer had spread to the uterine muscles and the cervix. This led to her having a series of surgeries that included the harvesting of her eggs, followed by radiation therapy and, finally, after efforts to spare her uterus failed, a hysterectomy.

“Now I’m 31 and in menopause,” said White, who is conducting outreach for the new VOICES of Black Women study by the American Cancer Society.

Gynecologic oncologist Kemi Doll, MD, of the University of Washington in Seattle, who did not treat White, said that it was unclear whether White’s clinician had carried out all the recommended imaging to assure that White’s cancer had not spread before assigning conservative treatment.

“Or she may have had a more aggressive type of cancer than should be treated with progesterone, or her ongoing symptoms should have triggered an earlier assessment. I can’t say for sure what happened, but it’s not an ideal scenario,” she said.

White has been sharing her story in the hopes that it will help other Black women facing a uterine cancer diagnosis and possibly save lives.

It has been known for decades that uterine cancer outcomes are worse among Black women, and the gap has only gotten wider with time. The ACS’s latest annual Cancer Statistics report, published in January, found that only 63% of Black women are alive 5 years after a diagnosis of uterine corpus (or endometrial) cancer compared with 84% of White women, reflecting the largest race-based mortality disparity of all the cancer types captured in the study.

Black women do get more of the rarer, more aggressive uterine cancer types — but this is only part of the story — researchers say. Recently published findings are beginning to reveal some provocative reasons why Black women see worse outcomes even after controlling for disease stage, cancer subtype, socioeconomic factors, or treatment completion. The same research is also pointing to ways that these trends might start to be reversed.

A Diagnostic Pitfall

In 2024, Doll and her colleagues reported a remarkable finding: That transvaginal ultrasound measurements of endometrial thickness — a diagnostic tool used to decide whether to biopsy in a case of suspected uterine cancer — are unreliable in Black women.

Clinical guidelines from the American College of Obstetricians and Gynecologists recommend that postmenopausal women who experience vaginal bleeding be evaluated with transvaginal ultrasound as a first step. Women without evidence of endometrial thickening do not need an endometrial biopsy to rule out cancer, according to the guidelines.

At first, Doll thought the problem might be that fewer Black women were being worked up in accordance with the guidelines. But Black women who did receive ultrasound also had worse outcomes, Doll saw.

Doll followed up with a qualitative pilot study that asked patients about their diagnostic experiences. “A number of participants would say, ‘I had an ultrasound and they told me, it’s fine,’ Doll said in an interview. Often their bleeding was dismissed as related to uterine fibroids, which are more common among Black women.

The studies used to create guidelines on ultrasound and endometrial thickness had enrolled few or no Black women, Doll found. Published accuracy figures for transvaginal ultrasound in Black women did not exist.

Doll and her colleagues’ ultrasound findings, which have been widely disseminated, may already be changing clinical practice, said Doll, who is a co-author on forthcoming practice guidelines from the Society of Gynecologic Oncology that will incorporate her research.

But things can also go wrong after diagnosis.

Doll and her colleagues are aiming to unveil other pitfalls affecting Black women’s care, and, in turn, debunk some assumptions. One concerns treatment refusal, which some clinicians perceive to be a reason Black women with uterine cancer do worse. Doll collaborated on research showing that while treatment refusal is slightly higher among Black women, it accounts for only a small fraction of the difference in endometrial cancer survival.

“Another thing you often hear about endometrial cancer disparities is that even on clinical trials, where everything is supposed to be the same, Black women have lower survival,” Doll said. “But then when I looked into these trials, it wasn’t that Black women got the same amount of treatment and did worse. They were falling off the trials earlier.” Again Doll turned to qualitative approaches to try and understand why people dropped out.

“Our survivors were saying, ‘it’s hard, and its rough, and we have no support,’” she said. “They were falling off from toxicity and not wanting to complete treatment. Patient refusal is not the neat explanation that we think it is. And now we know that empirically. What could be called refusal might also be looked at as failure [by the clinician] to communicate.”

To try to see if increasing social support will improve treatment completion rates among Black women with high-risk endometrial cancers, Doll is leading a randomized trial comparing the effects of two supportive social interventions — group-based and individual — with usual care.

Examining Genetic and Environmental Factors

In February, the ACS announced the launch of VOICES, a prospective, population-based cohort-study looking at cancer risk — and cancer treatment — in Black women. The study, which is already recruiting and aims to enroll 100,000 women, uses detailed questionnaires to collect information about lifestyle, environments, and behaviors, while also acquiring a subset of blood samples for genetic analyses. Women who go on to develop cancer during the course of the study will have the option to have their tissue and medical records analyzed in addition to receiving extensive follow-up about their treatment experience.

“The idea is to better understand women’s risk of cancer development and specifically why Black women develop these more aggressive cancer types, including the aggressive endometrial cancers,” said Lauren McCullough, PhD, of the ACS and Emory University in Atlanta.

Radiation oncologist Onyinye Balogun, MD, of Weill Cornell Medicine in New York City, is conducting research seeking answers to some of the same questions that VOICES is trying to answer. She is using genomic data to try and learn why Black women tend to get more aggressive uterine cancer types than White women. She was partly inspired, she said, by a study demonstrating that Black women with lower-grade, less aggressive cancers see higher rates of recurrence after treatment.

Cancer genomics databases (like tissue banks and other cancer research resources) tend to contain too few samples from Black women. One exception is the New York–based Polyethnic 1000 platform, a multi-center initiative that includes Weill Cornell Medicine.

“We’re analyzing results now,” Balogun said. “We hope they will shed new light on some mutations in Black women that haven’t yet been characterized or described — and their implications for how patients respond to surgery, chemotherapy, and radiation.”

Balogun is also collecting genomic and clinical data from uterine cancer cohorts in West Africa.

“We think that there may be mutations more frequently seen in women of African descent that might predispose them to developing the more aggressive endometrial subtypes,” such as those seen among Black women in the United States.

But mutations, while important to uncover, don’t explain everything about why a tumor develops or how it behaves, Balogun stressed. “It could be an interplay — you have a certain genomic makeup, and then, you are exposed. You may be more likely to develop a cancer when you’re exposed to, say, fatty diets, or pollution,” she said.

Balogun said that her collaborators in Nigeria, Ghana, Ethiopia, and Zambia are reporting rising rates of uterine serous and carcinosarcoma subtypes in their cohorts. This, too, suggests an interplay between genomic factors and changing exposures.

“So there may be some parallels that we can draw that might also help the African-American population here,” she said.

More Candid Conversations

“We know already from breast cancer, and there’s early evidence in endometrial cancer as well, that these big disparities persist even among Black women with higher socioeconomic status,” said McCullough. “They have access to care, yet are still not seeing the same outcomes as their White counterparts.”

White said that she had top-quality health insurance all her life. Her experience with her first oncologist, in which she felt that her symptoms were not being taken seriously enough, was the first time she “felt Black in healthcare.” 

White credits her team at the Robert H. Lurie Comprehensive Care Center of Northwestern University, Chicago, for the lifesaving care she received and has since come to serve on the institution’s community advisory board. But she deeply regrets not having sought a second opinion sooner “and not trusting myself for knowing when something’s not right with your body,” she said.

Not only do Black women need to advocate for themselves to their physicians, “we need to learn how to have more candid conversations” with each other about gynecological health, White said.

Jennie Smith is a freelance medical writer.