Studying Endometrial Cancer in Black Women

It took 10 years for Shakeya Allen to get to the root of her abnormal periods.

Starting at 17 years old, Allen visited several gynecologists for excess bleeding, but it took a visit to the emergency room after she passed out on her father’s porch in Michigan at the age of 27 for the truth to finally come out.

She had endometrial cancer.

That diagnosis only happened because she pushed to get a biopsy while in the hospital, Allen said. Her doctors had found evidence of cancer cells in a miscarriage she’d had a year prior, but that information never reached Allen since she had moved to a different state in the meantime. Back in Michigan, the doctors initially didn’t want to perform a biopsy, telling her that women under 40 don’t get endometrial cancer.

This cancer most commonly occurs after menopause, but Allen turned out to be an exception.

“I had no idea what endometrial cancer was at the time,” she said. “No doctor mentioned it to me. I had never seen any type of information about it in all the doctor’s offices I visited. If I had, I would have been able to advocate for myself sooner.”

The Most Common Form of Gynecologic Cancer

That’s despite the fact that endometrial cancer, also referred to as uterine cancer, is the most common form of gynecologic cancer in the U.S. To fight against this lack of awareness and work to ensure that other women don’t go through the frustrating delays she did, Allen started a nonprofit in 2019, the Uterine Cancer Awareness Network, to raise awareness of the disease.

Now, 15 years after her diagnosis, Allen, who is Black, has teamed up with researchers at Sylvester Comprehensive Cancer Center, part of the University of Miami Miller School of Medicine, to further research in this cancer in Black women.

Two three-year, $1 million grants funded by the U.S. Department of Defense support research into the genetics and awareness of this cancer in different populations of Black women. The genetics project is led by Sylvester molecular geneticist Sophia George, Ph.D., associate professor of gynecological oncology, and Matthew Schlumbrecht, M.D., M.P.H., a Sylvester researcher and associate professor of gynecological oncology who studies gynecologic cancer disparities. Allen will serve as a patient advocate on this research project. Dr. Schlumbrecht is also leading the endometrial cancer awareness project.

“Endometrial cancer has been understudied for a very long time,” Dr. Schlumbrecht said. “There are also clear disparities in experience and outcome with this cancer.”

Investigating Hereditary Endometrial Cancer

Black women are more likely to get more aggressive forms of endometrial cancer and they are more likely to have poorer outcomes from this cancer than women of other races.

Drs. George and Schlumbrecht aim to use their new funding to study and eventually identify women at high risk for this disease. To truly understand the experience of Black women with endometrial cancer, the researchers can’t treat this population as a monolith, they said. Rather, they need to understand women’s biology and lived experiences in different populations and parts of the world.

In the genetics study, the researchers want to understand the prevalence of hereditary endometrial cancer in different Black populations. They’ll examine both tumor mutations and mutations in non-cancerous cells in Black women with endometrial cancer who were born in the U.S., in the Caribbean and in West Africa. Overall, 5 to 10% of endometrial cancers are thought to be linked to inherited mutations. Dr. Schlumbrecht points out that the majority of heredity studies of this cancer have been conducted on primarily white populations. The numbers may be different in other racial groups.

In previous research, the collaborating scientists found that country of origin mattered for endometrial cancer survival among Black women, with Haitian women having lower rates of survival than Black women born in the U.S. or Jamaica. Now, they want to uncover the genetics behind those differences, working with their community partners in Nigeria, the Bahamas and South Florida. Understanding the genetics of endometrial cancer in different populations of Black women will help improve prevention strategies for those at high risk as well as point to potential drug targets to inform new clinical trials.

“This hasn’t really been done before, to survey people who are dying of this aggressive disease at disproportionate rates compared to others in the population,” Dr. George said. “There’s a real benefit to understanding what’s happening to women in our community, as well as globally.”

Raising Awareness of Endrometrial Cancer

In the other newly funded project, Sylvester researchers aim to understand awareness of endometrial cancer and its symptoms among Black women, as well as barriers to seeking care. Unfortunately, no screening methods exist for endometrial cancer and women are generally diagnosed when they develop symptoms, which typically present as post-menopausal bleeding or bleeding between periods in pre-menopausal women. The researchers will survey Black women born in the U.S., the Caribbean and Haiti to ask what they would do if they or someone in their family had post-menopausal bleeding.

They are also working with University of Miami communications researcher Kallia Wright, Ph.D., to develop a communication tool in partnership with Black women in the South Florida community to raise awareness of endometrial cancer symptoms.

Dr. Schlumbrecht hopes to use the data from this project to help raise physician awareness and comprehension. Although there are clear guidelines for how doctors should test and care for women with postmenopausal bleeding, many physicians may not realize how the symptom is perceived in different communities. Some women may not see it as a problem or may be embarrassed to seek care, Dr. Schlumbrecht said.

“We need to be able to say to them, this is what the patients are telling us that they understand, this is why they’re not going to the doctor,” he said. “When they actually make the choice to go to the clinic, we have to be aware of their lived experiences.”