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ECANA: Endometrial Cancer Action Network for African-Americans: An interview with Jacqueline Mbayo, Adrienne Moore, and Margie Wilson about the work of the ECANA community

November 2022 Part 2 of 2 – Endometrial Cancer Special Issue Series

Jacqueline Mbayo is the director of research partnerships at ECANA. After her diagnosis in 2017, Jacqueline has devoted her life to educating, empowering, and building community with Black women diagnosed with endometrial cancer.

Adrienne Moore serves as the director of peer support for the SISTER Study at the University of Washington as well as the director of programs for ECANA. She learned about ECANA after doing research about endometrial cancer in Black women after her diagnosis of endometrial cancer in 2016.

Margie Wilson is a 5-year endometrial cancer survivor and a patient partner, advocate, advisor, and director of fundraising for ECANA. Margie has 5 grandchildren who are the joy of her life!

The Endometrial Cancer Action Network for African-Americans, or ECANA, is an organization of women who come together to create support, community, and empowerment for any African-American woman affected by endometrial cancer. Many patient advocacy groups are founded by patients, but ECANA was founded by Kemi Doll, MD, of the University of Washington. Dr. Doll’s vision was to bring together patients, doctors, survivors, community advocates, and professional leaders who share a common goal—improving the lives of Black women with this disease.

For newly diagnosed Black women, the ECANA website ( is a place to find educational resources about this disease, as well as a community of women who understand what they are going through. Women who are ready to give back can join ECANA in their national efforts to set a new standard of research.

I had the opportunity to speak with 3 women from ECANA—Jacqueline Mbayo, Adrienne Moore, and Margie Wilson—about the mission of ECANA, the popular Survivors’ Sanctuary program, and the important work of connecting survivors and researchers. What follows is our thoughtful exchange.

Can you please tell us how and why ECANA was founded?

Margie: Yes, my pleasure. ECANA was founded by Dr. Kemi Doll, a gynecologic oncologist and researcher at the University of Washington. During her studies, Dr. Doll became aware of the huge gap in survival rates of Black women who were diagnosed with endometrial cancer. In fact, Black women were dying at higher rates than any other ethnic group. Dr. Doll decided to build a community of Black endometrial cancer survivors that would also include healthcare providers and advocates who would support, encourage, and be a resource for Black women dealing with endometrial cancer. In doing so, Dr. Doll hopes to improve the survival rates of Black women.

Can you tell us about the mission and goals of ECANA?

Adrienne: I’d be happy to. We are a group of women who have come together to create support, community, and empowerment for any African American affected by endometrial cancer.

We are doctors, patients, survivors, community advocates, and professional leaders all committed to 1 purpose—improving the lives of Black people affected by this disease. We know that healthcare for Black people is not as it should be, and we are here to bridge the gap. We are realistic and optimistic. We are here to motivate survivors and listen to survivors. On the ECANA site, we hope Black women with endometrial cancer find the community and knowledge they are looking for. And when that woman is ready to give back, we hope she will join us in our national efforts to set a new standard of research on this condition. Research that respects us, that is focused on what matters to us, and that is designed to improve our health and well-being.

Our mission is built on bridging the gaps among community, education, and research for Black endometrial cancer survivors.

The ECANA website provides survivors with several educational resources. Can you describe the practical tools a survivor will find on the site and how this information can empower her?

Adrienne: Education is a primary focus within our ECANA community. We want to equip Black endometrial cancer survivors with the tools and terms grounded in a conversational approach to the science of this disease. We don’t want people to shy away from learning about this cancer because they feel intimidated by it. Instead, we want them to lean in, gain a sense of familiarity, and feel empowered by their new knowledge.

For example, our Learn the Lingo tile board is a relatable and interactive resource for our community. This is a practical tool women can use to learn many of the new terms they will need to know—whether it’s about anatomy, procedures, or treatments.

ECANA has created a unique community where African American survivors can connect and share their stories. Can you speak about the importance of joining a community of survivors?

Adrienne: For many of the survivors in our community, the first time they heard about endometrial cancer was the day they were diagnosed. That speaks volumes not only about the need for more awareness programs in African American communities, but also about the need to connect with other Black women as part of their support network once they are diagnosed. What we have all learned as survivors is that when we are able to see ourselves and our journeys reflected in others, it helps our community thrive and brings hope to us all. Being cancer survivors comes with the innate ability to encourage and enlighten one another through our own survivorship stories, and that is part of what makes us unique.

ECANA recently celebrated the 2-year anniversary of its Survivors’ Sanctuary. We’d love to learn more about this program and its impact on survivors.

Margie: Survivors’ Sanctuary meets every other Friday via Zoom. Each meeting features chair yoga and conversation. Basically, we enjoy about 30 minutes of gentle, guided movement followed by conversation and connection.

Our gentle chair yoga has proved to help many of our women get moving again and to help them realize that they are able to engage in physical activity again.

After yoga, we talk. We give participants the opportunity to share anything related to their life or their cancer journey. The women learn from each other as they share stories and their personal experiences. We encourage connection, conversation, and relatability. I can tell you, one phrase that is repeated often in the Survivors’ Sanctuary is “me too!” Those words can be very reassuring to hear.

Through movement, conversation, and relatability, the Survivors’ Sanctuary is a place where Black women can come and connect with other endometrial cancer survivors who share their experiences.

ECANA promotes partnerships between academic researchers and Black women who have had endometrial cancer. We’d love to hear more about these partnerships and how they are advancing care.

Jacqueline: Yes, ECANA promotes partnerships between Black survivors and academic researchers to ensure that the issues that are important to survivors are heard and understood by researchers. This program gives Black endometrial cancer survivors the opportunity to share their perspectives and care experiences to inform the planning and implementation of academic research. This is especially important because Black women with endometrial cancer are underrepresented in academic research. These partnerships are advancing care because Black women with endometrial cancer are able to address aspects of the research in a way that researchers may not have considered, and it provides researchers with new insights to view problems.

The research collaboration helps to ensure that the research outcomes are focused on the things that patients value, such as quality of life and improving treatment options, because survival is not the only desired outcome. Black endometrial cancer survivors are viewed as equal stakeholders in the research partnership, and their contributions are greatly valued by academic researchers.

What advice would you give to a woman who is newly diagnosed with endometrial cancer?

Jacqueline: I’ve got this one.

  1. Breathe.
  2. Focus on getting well, and not on the cancer diagnosis.
  3. Don’t be hard on yourself.
  4. Do everything you can to get educated about your endometrial cancer diagnosis and treatment, and do your best to complete your treatment.
  5. Ask for help.
  6. Celebrate every single win, like taking a walk, or making a meal for yourself.
  7. Know that you can have a great life after an endometrial cancer diagnosis.

Can you share an ECANA success story?

Adrienne: One of ECANA’s earliest success stories is the incredible opportunity we were given in 2019 to bring 12 Black endometrial cancer survivors together in Hawaii for the Society of Gynecologic Oncology annual meeting. We recognize this event as the first meeting of our community-building initiative of empowering women to go out in their communities to talk about endometrial cancer. The program is an evidence-based peer education program that aims to increase knowledge about endometrial cancer to empower and improve health outcomes for Black women with this disease.

These 12 women were from all over the country and knew very little about us and even less than that about each other. Despite that, they were all willing to take a chance on us and believed that we could do more to affect Black endometrial cancer survival together than we could alone.

After that meeting, each of these women went home to their communities with training, a knowledge base, communication tools, and a survivorship plan that included a commitment to endometrial cancer advocacy.

What’s in the future for ECANA?

Margie: ECANA’s future is bright! We are working toward developing biyearly conferences and nationwide fundraisers to promote awareness and visibility for Black women who are journeying through endometrial cancer.

Our goal is to be nationally known as the organization to come to for support and connection for Black women who are diagnosed with endometrial cancer.

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