Racial disparities in endometrial cancer: Improving diagnosis and treatment

(Editor's note Aug. 27, 2024: Kemi Doll, MD, MCSR, is a professor in the University of Washington Department of Obstetrics and Gynecology. She does not see patients at Fred Hutch.)

Fred Hutchinson Cancer Center gynecologic oncologist, Kemi Doll, MD, MCSR, is a leading figure in the pursuit of racial equity in endometrial cancer care. Her soon-to-be-released recommendations update the diagnostic guidelines for endometrial cancer, which underperform in Black women. Doll is also investigating whether social support can improve treatment outcomes in Black women with endometrial cancer. This clinical trial is open for enrollment through the end of 2024.

Closing the Black-white mortality gap in endometrial cancer is the lifework of Doll. Through research and advocacy, Doll is shifting the narrative around what should be a highly treatable disease.

Her current projects seek to change the way physicians diagnose and treat Black women with endometrial cancer. Specifically, they provide:

• Recommended changes to the current guidelines for diagnosing endometrial cancer.
• A unique opportunity for Black women to participate in a clinical trial assessing the impacts of social support on endometrial cancer outcomes.

“Racial inequity has been present since we’ve started measuring endometrial cancer rates,” says Doll. “The focus for me is redressing too many years of neglect."

Diagnostic disparities in endometrial cancer

Black women are diagnosed at later stages with more advanced endometrial cancer than white women. In part, this difference is because Black women often develop more aggressive, high-risk cancers. But even within those aggressive cancer types, Black women still experience diagnostic delays.

When Doll explored this problem, she found the diagnostic interval (the time between someone’s first visit for a problem and diagnosis) was 30% longer for Black women. She ruled out health insurance and access to care to explain this difference and ended up looking at the diagnostic algorithm.

Biopsy is the gold standard for diagnosing endometrial cancer. The algorithm for determining who needs a biopsy is based on endometrium thickness, measured with a transvaginal ultrasound. Doll found the algorithm underperforms in Black women for two reasons:

• Fibroids, which are more common in Black women, can distort the quality of ultrasound images.
• Black women more often have high-risk cancer types that may cause less thickening of the endometrium than low-risk types. In contrast, for white women, low-risk types comprise nearly 90% of endometrial cancers.

In a separate study, Doll’s team surveyed providers across the country. They found an alarming lack of knowledge around endometrial cancer diagnosis. When provided with sample cases, providers leaned toward ultrasound over biopsy.

“Taken together, the data begins to line up,” says Doll. “It starts to be less confusing why Black women are diagnosed at later stages.”

Rethinking the diagnostic algorithm

These findings led to Doll’s current project — Guidelines for Transvaginal Ultrasound in the Detection of Early Endometrial Cancer (GUIDE-EC). This study includes a large cohort of Black women with and without endometrial cancer who received ultrasounds and biopsies.

The goal of GUIDE-EC is to redefine the appropriate measurement thresholds to capture endometrial cancer better in Black women. The specifics are not yet publicly available, but they will change the diagnostic approach, says Doll.

Implementing new guidelines: Next steps

The next phase of GUIDE-EC focuses on how to implement these new diagnostic guidelines in the medical community and among patients. Doll’s team will conduct interviews with providers to find out how to overcome the challenges of changing physician behavior.

They also plan focus groups with Black women to understand how to tailor messaging about:

• Abnormal bleeding, and the misconception among many Black women and providers that postmenopausal bleeding is “normal”
• Biopsy, and the need for widespread awareness about the importance of a biopsy in making an accurate endometrial cancer diagnosis

Inequities in endometrial cancer treatment

Even after diagnosis, Black women with endometrial cancer face an uphill climb to obtain equal medical care. They are less likely to receive surgery at every stage of the disease. Their chance of seeing a Black gynecologic oncologist is nearly 0% given that only 1-3% of gynecologic oncologist in the entire country are Black. Many Black women are hesitant to seek care or continue treatment due to prior mistreatment when receiving reproductive health care and historic abuses of the health care system against Black women.

In preliminary studies, Doll interviewed Black survivors of endometrial cancer to better understand their experiences. They talked about the isolation and shame they felt, and indicated that discontinuing treatment early provided emotional relief.

Poor drug toxicity management and patient-provider communication may also have contributed to their ending treatment prematurely. Research shows that Black individuals who have cancer don’t get the same amount of pain and antinausea medications, or education about what to expect, as white individuals, among other disparities in cancer care.

One bright spot in endometrial cancer treatment is recent research into new treatment modalities. Two clinical trials published in March 2023 show immunotherapy medications (pembrolizumab and dostarlimab) improve outcomes in patients with advanced endometrial cancers — the types most common in Black women.

“We still need to make sure all patients have access to these very expensive drugs,” Doll says. “But in general, the medical community is becoming more aware of the racial inequities in endometrial cancer.”

Improving outcomes with social support

In looking for ways to support Black women with endometrial cancer, Doll developed Social Interventions for Support During Treatment for Endometrial Cancer and Recurrence (SISTER); ClinicalTrials.gov Identifier: NCT04930159.

SISTER compares treatment completion rates between:

• Enhanced standard care (patients receive a packet of information and helpful products)
• Support group that offers weekly information sessions 
• Peer-to-peer support before or after every treatment

“We hope it’s a positive trial that shows social connections and support can have a medical impact,” says Doll.

How to enroll in SISTER

SISTER currently has nine sites open across the U.S. and is enrolling patients through the end of 2024. Patients do not need to switch physicians or treatment to participate. The only enrollment requirement is to meet once virtually with a Fred Hutch gynecologic oncologist.

All interventions (peer-to-peer support and support groups) are virtual. If needed, patients can receive a hotspot or smartphone so they can participate fully.

“We encourage physicians to refer patients,” says Doll. “We’ve taken several steps to overcome resistance to participating in clinical trials. Survivors have helped create our enrollment materials, including multimedia consent forms and online videos. We’re also tracking what works to help other researchers improve their minority enrollment rates.”

Learn more about SISTER

Other support for Black women with endometrial cancer

In 2017, Doll founded the Endometrial Cancer Action Network for African Americans (ECANA), a nonprofit organization dedicated to providing community, education and support and reducing disparities in endometrial cancer care. Prior to ECANA, no resources existed specifically for Black women with endometrial cancer, says Doll.

ECANA works at multiple levels for:

• Patients: ECANA’s Survivor’s Sanctuary meets weekly to provide support and encouragement to endometrial cancer survivors. 
• Research: ECANA members consult with researchers across the U.S. to ensure their projects include a Black woman's voice. For the SISTER project, ECANA provided input into the proposed interventions and study design. 
• Policy: ECANA representatives participate in patient advisory panels and clinical trial groups related to endometrial cancer. 

Find out more about ECANA.