Endometrial cancer is the most common gynecological cancer in the United States. Most women, about 75 percent, will be diagnosed in the early stages of the disease, when it is most treatable. It also has the highest survival rate, at 80 percent. But these numbers don’t hold true when it comes to black women. Black Health Matters sat down with Kemi Doll, M.D., assistant professor in the University of Washington Department of Obstetrics and Gynecology and founder of the Endometrial Cancer Action Network for African Americans (ECANA), an organization that unites cancer survivors, researchers, clinicians and health-care advocates to collaborate on treating this disease, about this health disparity and what she’s doing to change it.
Black Health Matters: We’re surprised to find that endometrial cancer is the most common. We don’t hear much about it. Why?
Kemi Doll: There’s a few reasons. One, the most common gynecological cancer used to be cervical cancer. The Pap smear was such a revolution in terms of advancement, so it became the primary preventive tool for below-the-belt cancer. Two, there’s a lot of silence surrounding endometrial cancer. Finally, there’s not a really strong visible community of survivors, though many women who are diagnosed survive. Frankly, it’s been a little bit of neglect on the part of our public health and clinical community.
Maybe there’d be less silence if we knew the symptoms of this disease. What are they?
The median age at diagnosis is women in their fifties to sixties. So the primary symptom is vaginal bleeding after menopause. It doesn’t have to be heavy bleeding. It doesn’t have to be accompanied by any type of pain. If you don’t know a few drops of blood could be an indication of cancer, you don’t go to your doctor.
Seven percent of endometrial cancers are diagnosed in women younger than 45. A second sign [of the disease] is severely irregular and abnormal periods, especially ones that get heavier and heavier. That’s why it’s important for women to be in regular gynecologic care.
You mention abnormal periods, but what constitutes abnormal?
This is the thing: What is normal, irregular and heavy varies by women. Somebody could be changing pads every two hours for two days; somebody else can’t leave the house because they have to change pads every 45 minutes. Someone else could be bleeding through their mattress.
I’ve seen women who have to manage their periods with blood transfusions. That’s what I mean when I say irregular, abnormal. A long history of heavy, irregular periods is an indication of endometrial cancer.
What about for African American women? What’s our story with endometrial cancer?
What has been mapped by the high survival rate of endometrial cancer is that it has one of the worst disparity stories of all of cancers. We see a larger difference than in breast and colon cancers. Black women are more likely to be diagnosed when their cancer has spread further. Black women present later after having waited longer to seek care when they have symptoms. Black women don’t receive the same care. They don’t get diagnosed quickly. Black women are more likely to have the more aggressive kind of endometrial cancer.
If anybody should be super on top of periods and very much in the doctor’s office with the first sign of blood or these symptoms, it should be black women. It’s critical to be diagnosed early.
Where most women’s five-year survival rate is in the 80 percent to 85 percent range, for black women it’s more like 60 percent. And, of course, for metastatic endometrial cancer, the cure rate is much lower.
The problem is the normalization of irregular menstrual health of black women. They keep moving as long as their Pap is fine and their STD (sexually transmitted disease) screening is clear. This has to change.
Is anybody trying to make this change?
The CDC last year had an endometrial cancer awareness campaign. Since Gwen Ifill died, we’re seeing more stories. It’s changing in terms of conversation. Still, most women I see say it’s the first time they’ve ever heard of it.
This is why you started ECANA …
I started ECANA because of the question: How could we not have a visible community of black women out here advocating?
There was no visible community of black women survivors. We had no support system for women diagnosed. We had no mechanism to spread awareness. We had almost no representation with research partners to ensure that the research being done included black women.
I started ECANA so women know if they get this diagnosis, they are not alone and that women survive and thrive after having this.
I started ECANA to spread awareness, community education, peer awareness. So I don’t keep hearing black women after diagnosis say, “I didn’t know anything about this disease. I didn’t know my period could be tied to cancer.”
We want to empower women to recognize the symptoms, and when they get in the doctors office and get this diagnosis, know the kind of tests and biopsies required.
We also want to have a seat at the research table. There’s a huge movement in cancer research now to have patient partners so studies are designed well, so they ask questions that are important for patients to have answers to. We are placing women as research partners.
It sounds like you also want to give women hope.
The main thing is, yes, the statistics are dismal. Yes, it’s the same old story. But we’re at a moment where we care about black women’s health—about black women’s reproductive health, with all the stories about maternal health disparities and maternal mortality. I want people to realize when we talk about the mistreatment of black women, I want us to think about all the ways we can improve quality of care.
The fact is that we’ve barely tried. We have so much that can and will be done to improve these numbers so this won’t be the story in 10, 20 years.