Why Black Women Are Much More Likely to Die of Endometrial Cancer

Victoria Stern, MA


October 13, 2021

Why are Black women dying of endometrial cancer at a much higher rate than White women?

Although this survival gap exists across basically every cancer type — breast, prostate, colorectal, non–small cell lung cancer — the numbers for endometrial cancer are particularly alarming. Research shows that Black women have a 90% higher mortality rate than White women.

Kemi Doll, MD, MSCR

Kemi Doll, MD, MSCR, associate professor of obstetrics & gynecology at University of Washington Medical Center in Seattle, has been looking for answers.

In 2017, Doll launched a national randomized trial — the Endometrial Cancer Action Network for African-Americans (ECANA) — to build a community and research hub centered around Black women with endometrial cancer. In just a few years, she has identified rather glaring gaps in care, leading to delayed diagnoses and exacerbating racial disparities.

Medscape Medical News spoke to Doll about her groundbreaking work on endometrial cancer disparities and her goals for the future.

The following transcript has been edited for length and clarity.

When did you begin seeing some of the racial disparities that you led to your research?

What is really interesting is the word "see," because I was seeing disparities from the time I started medical school. You learn in class that Black people have worse hypertension, worse cancer outcomes. It is just fact that Black people die more, in the same way that you are learning facts about the metabolic cycle or pharmacology. I saw disparities in that I was inhaling this information as it was delivered. I felt frustrated and sad, but at the time I did not have the alert of well, wait a minute, why is it this way? How is it possible that you can have a whole group of people that are somehow designed to have worse health?

Basically, it was in my residency year at Northwestern Hospital and Cook County Hospital in Chicago (now John H. Stroger Jr. Hospital of Cook County) when I began to see the differences. As residents, we were going back and forth between the two hospitals, and across just a couple of miles, I was looking at the difference in the type of care patients were receiving based on what they looked like, even within the nicer hospital.

And that was when I realized, this game is rigged.

I can articulate that well now, but at the time, I remember thinking that I want to understand how we can study quality of care and figure out how to provide everyone with the best care.

How did your observations during your training ultimately shape your research?

When I went into my fellowship training for gynecologic oncology, I specifically chose a program where I could get research training in health policy and management. I got a master's degree in clinical research and did a postdoc in cancer care quality. In that time, my work was mostly agnostic to racial disparities and racism. I was learning about patient-reported outcomes and how to analyze those outcomes.

But during those years (2012-2013), Trayvon Martin was murdered and the Black Lives Matter movement started. So, there was a growing awareness of the systematic structures set up against Black people. I started doing more reading on my own and attended a graduate class on health disparity frameworks. That is when I realized that everything I had done up to this point, all of this medical and research training, could be used to study Black women and endometrial cancer. I did not know what I was going to find, but I knew that is where I wanted to go.

When you realized you wanted to be researching Black women and endometrial cancer, where did you even start?

This is where I really credit learning about health disparities frameworks, because it helped me get past that part. There are three things that I was exposed to. The first was the life course perspective — understanding that people are not their cancer diagnosis, they are the accumulation of everything that has happened to them. The second was public health critical race practice, which is an adaptation of critical race theory that helps you systematically go through how racism operates at all sorts of different levels, so you can identify different questions. And third is what's called the fundamental cause theory, which highlights how we see the largest disparities based on our social position in society. In other words, the biggest disparities are also the most modifiable.

With that background, I knew my first job was to find the modifiable factors. I started thinking about the factors that we know affect survival in endometrial cancer: the stage at which a patient receives a diagnosis; receiving appropriate surgical treatment; and starting and finishing chemotherapy. I wanted to know how those factors differed between Black and White women.

In one of the first studies I did, I demonstrated that 40% of the mortality gap between Black and White women is attributable to modifiable factors — specifically, inequitable surgery rates and stage at diagnosis. That alone was novel at the time because the narrative had always been that the mortality gap is a biological issue.

What was your takeaway from these rather stunning findings?

The results led me to think about why delays in diagnoses happen for Black women. I saw that our guidelines are shaped around minimizing harm from inappropriate biopsies, as opposed to catching early, aggressive cancers and curing them. In the United States, often our guidelines are built around the majority of the population, not around the people who are most at risk and doing the worst. This study also made me want to find other modifiable factors and look at what providers are doing and what patients are experiencing.

That brings into focus your 2020 JAMA study, where you spoke to Black women with endometrial cancer about their experiences before being diagnosed. What were you hoping to understand and what did you discover?

When talking to Black women with endometrial cancer, I wanted to understand what their experience leading up to their diagnosis — their perception of menopause, how they first discovered their bleeding, what it was like, what they thought, and what happened when they first disclosed the symptoms to a physician.

When I started doing background research, I found I had no prior evidence to build on because we had never asked these questions before, so I had no idea what I was going to find.

One of the things we heard from the study participants was essentially that "all of the women in my family had hysterectomies, so I did not know what to expect with menopause." That correlates to what we know — which is that Black women have a much higher rate of premenopausal hysterectomies than White women. In essence, for many Black women, this familial knowledge of the natural menopause transition is gone.

What we also heard was silencing and stigma around the symptom of bleeding. When we asked, "What was it like when you first noticed that you were bleeding?" most people normalized their abnormal symptoms. I heard responses like, "Why would I go to the doctor because of a few drops of blood at age 72? I can manage this." And it makes sense that women who managed heavy periods their whole life would try to manage this as well.

And sadly, when women finally disclosed their bleeding symptoms to a physician, they were often met with vague reassurance: "Maybe you should get this checked out" or just flat out "That can happen sometimes, that could be normal." I can understand providers not wanting to scare people, but everybody deserves to know if they have a symptom that might be related to a cancer, especially one linked to poor outcomes in their demographic. Providers also need to know that patients may have waited a year to even share this information.

How did this research lead to your 2021 analysis in JAMA Oncology, which found that transvaginal ultrasound, the screening tool often used to determine who gets a diagnostic biopsy for endometrial cancer, was actually missing cancers in Black women?

The first JAMA article spurred the second one because another thing we heard from these women was that they ultimately did get transvaginal ultrasounds, and some were told they were okay.

That made me realize we have not even asked whether our guidelines on using transvaginal ultrasounds to diagnose endometrial cancer work for Black women. When I researched that question, I was floored. I initially thought, this can't be real.

We found that the use of 4-mm transvaginal ultrasonography endometrial thickness measurements to indicate who needs a biopsy had a sensitivity of less than 50% among Black women compared with almost 90% among White women. In other words, this screening missed over four times more cases of endometrial cancer among Black women compared with White women, in large part because of the greater prevalence of fibroids and nonendometrioid histologic type in Black women. This means that Black women are more likely to receive a false-negative result — a reassurance that they do not need a biopsy when, in fact, they do. This was a simulation study, which means we had to pull together data from different sources and do our best to estimate what happens for this group.

Your research is unearthing these glaring disparities based on race. Did you find it disheartening?

Well, the findings are depressing on one side, but also very hopeful. Up until now, there has never been a research study specifically designed to improve outcomes of Black women with endometrial cancer. Ever. But I also get excited because now we are navigating this previously unchartered territory and finding these modifiable factors that can help people affected by this cancer.

What is next on the research front? Tell me a bit about the national Endometrial Cancer Action Network for African-Americans (ECANA) group you launched.

If you are going to do equity research, you need to partner with the community. When I started the 2020 interview study, one of the most consistent things I heard was that these women are alone. Before their diagnosis, they didn't really know what endometrial cancer was, and after being diagnosed, no community existed for Black women with endometrial cancer. So, we had to start one. And that is how ECANA came about. ECANA, which focuses on community, education, and research, is mostly led by our patient survivors and also includes doctors, current patients, researchers, and community advocates.

When we had our first meeting, I kept hearing about the lack of information and confusion surrounding why patients had to continue and finish their chemotherapy. That inspired the SISTER study — Social Interventions for Support in Endometrial Cancer and Recurrence — where we will be randomizing Black women with endometrial cancer currently receiving treatment to three different modes of social support. Our primary outcome is treatment completion because we know finishing treatment saves lives, and patients with cancer who are isolated do not do as well. Again, we are identifying modifiable factors to improve survival.

Now that you're uncovering these modifiable factors, can these findings be easily translated to clinical practice?

Yes and no. As a gynecologic oncologist, I can easily implement a system in which any menopausal patient who tells me they're bleeding will get a biopsy, but I can't easily make sure a patient tells me about their bleeding right away. Ideally, this conversation can start with a primary care doctor saying, "Listen, you are menopausal now. If you ever bleed again, you should let me know."

We are making progress. There are now national stories on endometrial cancer. But we also need more awareness. People are still floored when I tell them that endometrial cancer is four times more common in the United States than cervical cancer, which should be common knowledge.

Final question: In your dream world, what would you want to see public health–wise and public policy–wise?

In my dream world, Black people with female reproductive organs do not suffer because they have them. They have equal access to a wonderful, healthy life, and they experience the full range of what they want with their lives, without having to have their female reproductive organs be a burden. And I want health policy and medicine that support that.

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