For years, Kemi Doll, MD, a gynecologic oncologist at UW Medicine in Seattle, has been treating Black women with endometrial cancer. During that time, she has noticed some stark differences in how Black and white women experience the disease.
One such distinction is that Black women are often diagnosed at a later stage, which means that the condition is likely less treatable. Black women are also much more likely to have aggressive or high-risk forms of endometrial cancer compared with women of other races. These cancers can grow and spread very quickly.
Dr. Doll found that many Black women had ignored their symptoms because of cultural stigmas surrounding healthcare. Others hadn’t been appropriately screened due to inadequate medical care.
Doll also saw that Black women didn’t have much community support after their diagnosis.
Today, ECANA acts as a supportive community for Black women diagnosed with endometrial cancer. The organization focuses on education, community building, and advocating for Black women’s inclusion in endometrial cancer clinical trials.
Goals of ECANA
ECANA’s goal is to give Black women a place where they can ask all their questions, describe their symptoms without fear of judgment, and feel connected with a group of women who understand what they’re facing.
“Our efforts are to build community around and for Black women with endometrial cancer — those already diagnosed and those at risk,” says Adrienne Moore, the president of ECANA and an ovarian and endometrial cancer survivor. “So often in Black communities, we don’t talk about the things that are the most important to us when it comes to our reproductive health,” she says. “There’s silence around that.”
Services ECANA Provides
ECANA provides in-person and virtual educational sessions and community support for women diagnosed with endometrial cancer and those at risk. Its programs include the following:
Survivors Sanctuary
Twice a month, ECANA hosts Survivors Sanctuary, an online program combining chair yoga with conversations where women can connect and share their experiences in a safe, empathetic environment. This time is unscripted, and women who are shy about sharing often feel empowered to speak up after getting to know the other women, Moore says.
At least once a month, the program includes a Purpose Living Bible Study session, where women can find strength, hope, and healing through shared faith. “We understand that for Black women faith is really foundational,” Moore explains.
If you’d like to participate, you can register through its website.
Project IMPACT
Project IMPACT is ECANA’s grassroots outreach initiative, designed to make endometrial cancer education accessible. The program was born from the lived experiences of Black women whose symptoms were often unaddressed or misdiagnosed.
“When those symptoms are missed and not addressed in a timely manner, we’re diagnosed at advanced stages of endometrial cancer,” Moore says. “We have to have the most aggressive types of treatment, and sometimes we lose our lives,” she adds.
Moore says Project IMPACT addresses this problem by training survivors and community supporters to meet people where they are and talk openly about the condition.
The program helps women understand the symptoms and risk factors of endometrial cancer. It also empowers women to recognize when their symptoms might be more serious, advocate for themselves, and communicate their concerns clearly with their healthcare providers. Teaching early symptoms and risk factors can save lives, especially when using culturally relevant materials, says Moore.
Clinical Trial Involvement
ECANA also encourages Black women to get involved in clinical trials. “[Doll] wanted to study why Black women were dying of endometrial cancer more than any other race,” Moore says. This led Doll to publish studies about endometrial cancer disparities and the underrepresentation of Black women in cancer research.
Her review of studies, published in 2018 in the American Journal of Obstetrics and Gynecology, looked at 20 years of endometrial cancer research. She and her colleagues noted that most studies focused on race as a biological factor but failed to look at issues like access to care and bias in medical treatment. They also found that little research had been done to understand the experiences of Black women diagnosed with endometrial cancer.
To make research better integrate the direct experiences of Black women, ECANA has built a team of survivors who partner with academic researchers. The organization shares clinical trial information on its website so women don’t have to search through databases on their own. When new trials become available, ECANA invites researchers into its community spaces to explain the goals, criteria, and details, says Moore. Sometimes, treatment costs can be partially covered if they are part of a trial, she says.
Those interested can contact ECANA to ask about specific research opportunities.
Education
Education is key, and ECANA has several resources, as well as a quarterly newsletter, to help you learn more about endometrial cancer. “You may pick up a brochure, but if it doesn’t look like you, you may think it doesn’t pertain to you,” Moore says. You can find these educational tools, along with personal patient stories, on its website.
“We want to make sure everyone knows all the resources available to them,” Moore says. “And that they’re not left out just because they don’t live in the right ZIP code.”
Events
Strides 2 Survive is ECANA’s annual 5K virtual walk-run honoring strength, solidarity, and awareness. Each September, which is Gynecologic Cancer Awareness Month, participants complete 3.1 miles however they choose: walking, running, or moving at their own pace, wherever they feel most comfortable. The event welcomes survivors, caregivers, supporters, and anyone who wants to help the cause.
In addition to the 5K, ECANA occasionally hosts special events through its Survivors Sanctuary program. Details are shared with the community throughout the year.
If you’d like to stay up to date with all of ECANA’s upcoming events, you can follow the organization on Instagram @ecanawomen.
Core Belief
“ECANA’s overall mission is to build a visible and viable community for Black women with endometrial cancer to be empowered to share their story,” Moore says.
“To show how strong they are in living — and sometimes in dying — but also to know that they matter. Your story matters. Your life matters. Your representation matters. And we just need to talk about that.”
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Resources
Illah O et al. Racioethnic Disparities in Endometrial Cancer Outcomes. Diagnostics. February 14, 2024.
Smotkin D et al. Histopathologic Differences Account for Racial Disparity in Uterine Cancer Survival. Gynecologic Oncology. December 2012.
Tawee Tanvetyanon, MD, MPH, is a professor of oncologic sciences and senior member at H. Lee Moffitt Cancer Center and Morsani College of Medicine at the University of South Florida in Tampa. He is a practicing medical oncologist specializing in lung cancer, thymic malignancy, and mesothelioma.
A physician manager of lung cancer screening program, he also serves as a faculty panelist for NCCN (National Comprehensive Cancer Network) guidelines in non-small cell lung cancer, mesothelioma, thymoma, and smoking cessation. To date, he has authored or coauthored over 100 biomedical publications indexed by Pubmed.
Abby McCoy is an experienced registered nurse who has worked with adults and pediatric patients encompassing trauma, orthopedics, home care, transplant, and case management. She is a married mother of four and loves the circus — that is her home! She has family all over the world, and loves to travel as much as possible.
McCoy has written for publications like Remedy Health Media, Sleepopolis, and Expectful. She is passionate about health education and loves using her experience and knowledge in her writing.
