The Making of an Advocate: Adrienne Moore
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After surviving ovarian cancer in 2003, Adrienne Moore didn’t know that her history of the disease had put her at higher risk for other gynecological cancers.
Over 10 years later, Moore started experiencing heavy bleeding. Unable to afford health insurance at the time, Moore saw providers at urgent care clinics and doctors whom she could pay out of pocket. Assuming it was perimenopause or uterine fibroids, Moore’s providers told her to “see how it goes,” she remembers.
“There was always an explanation,” Moore says. “Always a reason for me to feel comfortable [despite] all of this chaos that was happening in my reproductive system. Because surely, if there was a reason for concern, they would have told me.”
In 2015, Moore was on her way to an orientation for her new job when she started bleeding more heavily than ever, and it didn’t stop for two weeks. Now armed with insurance, she made a gynecologist appointment where, for the first time, she was told she needed an endometrial biopsy.
Moore was ultimately diagnosed with stage 3 endometrial cancer, and was treated throughout 2017. She survived her late diagnosis, but after feeling dismissed by so many healthcare providers, Moore wondered, “What if I had been told what these symptoms [could] mean?” If she had, Moore says she feels she could have advocated for herself and gotten diagnosed at a much earlier stage.
Following her treatment, Moore responded to a survey sent to cancer survivors by Kemi Doll, MD, who founded the Endometrial Cancer Action Network for African-Americans (ECANA) in 2017. Dr. Doll created the survey to get a better understanding of the differences that existed between Black women and white women when trying to access and navigate endometrial cancer care.
It was through the survey that Moore and Doll were able to connect, and in 2018, Moore decided to join their team in supporting Black women at risk for endometrial cancer. “[Helping other women is] why I’m here,” Moore, now the organization’s president, says. “I knew that I needed to share my experiences to help other women.”
Initial Goal
Once she started working with ECANA, Moore says she got to step outside her own experience and think about others in a similar situation to her own. Though ECANA was founded the year before Moore joined, she’s considered by the organization as a founding member and, with Doll, wanted to create a safe space for women of color with endometrial cancer to have genuine conversations about their experiences.
“[When I started with ECANA], there was no visible community of Black endometrial cancer survivors. Nothing,” Moore says. “We were just this little blip inside [these reports] stating that we were the demographic of persons that had the poorest of outcomes, and it was just because we were Black.”
How It Has Evolved
Moore has held the organization’s presidential role since 2022. As president, Moore says she plans to take up the mantle of patient support and advocacy. Through ECANA, Moore continues to fundraise and advocate for more equitable cancer research. She has also created a “Learn the Lingo” section on ECANA’s website to help people understand common but confusing medical terms.
Moore began acting on the advisory panel of the International Gynecologic Cancer Advocacy Network (IGCAN) in 2022. Moore’s work with IGCAN involves connecting with other organizations and raising money for uterine cancer research focused on women of color with the disease.
Inner Mantra
Moore says remembering that her advocacy work isn’t about her, but rather, helping other women at risk of endometrial cancers, is what keeps her going.
After her last chemotherapy treatment, in 2018, Moore spent the winter holidays on her own. Lying on her couch, she asked God for guidance in using her experience to help others. “I asked him to use me to make it better for other women … in my situation,” she says. “It wasn’t about me, it was about something else.”
Role Model
Moore gives special acknowledgement to Mary Dicey Scroggins, who she says made a tremendous impact in her life and advocacy work. A fellow ovarian cancer survivor and member of IGCAN, Scroggins was the one who recruited Moore to share her endometrial cancer story with the organization.
At first, Moore was hesitant to join, but Scroggins persisted. “She told me why my story was so important,” Moore says. Scroggins told Moore that her experience with a delayed cancer diagnosis is exactly why she needed to share it: so that others could learn from it.
Scroggins passed away in 2022, but her legacy as a patient advocate in gynecological cancers continues to inspire Moore.
Advice for Other Patients and Potential Advocates
“Find your people,” says Moore, who believes that what people with cancer need most is support. “While you are healing and moving toward wholeness and wellness, the people who have actually walked that path already will be there to reach out and pull you one step forward at a time.”
Moore likens her work in this advocacy space to a painting by Gilbert Young. The piece, He Ain’t Heavy, depicts a Black man leaning over a ledge and reaching down to help another Black man up. “That’s what we’re supposed to do — help each other,” Moore says.
Support for Women With Endometrial Cancer
Endometrial Cancer Action Network for African-Americans (ECANA)
ECANA offers support of all kinds tailored to Black and African American women diagnosed with endometrial cancer, including educational content, online and in-person support groups, access to clinical trials, and a quarterly newsletter.
Foundation for Women’s Cancer
This organization works to increase public awareness of gynecological cancers in women. They offer an up-to-date, comprehensive library of information about these cancers, free webinars, and information on clinical trials.
SpotHer
SpotHer highlights stories from other survivors of endometrial cancer and offers easy-to-understand overviews about diagnosis and treatment, which you can download for easy access.
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