The lethal disparity in endometrial cancer for Black women, with Dr Kemi Doll

[00:00:02] Hey listeners, before we get started with this episode, I wanted to let you know that we're having our very first listener event in person in New York City. There's a really great community forming around Overlooked and the topics we talk about, and I hear from you guys in messages all the time. Now, I'd love to meet you, and for you to meet each other too.

[00:00:22] So, on May 31st, I will be at one of my favorite cafes in Manhattan. And if you're in New York City and you want to nerd out on all things women's health, please come along and say hi. It's free to attend, but you do have to register because space is limited. Check out the show notes for more details, and I hope I'll see you there. Now, here's the episode.

[00:00:47] I did my OBGYN residency training in Chicago. This is Dr. Kemi Doll. She's a gynecologic oncologist and health equity researcher at the Grace Center at the University of Washington. And the story she's about to tell happened years ago, but it made a deep impression on her. And my training was split between Northwestern Memorial Hospital or the Prentiss Women's Hospital, which is literally on the Magnificent Mile near Oprah's house.

[00:01:15] Like, it is like the—it is in the nicest part of the city, and it is the nicest hospital you will ever walk in. It was split between that hospital and John H. Stroger Cook County Hospital. Cook County Hospital was made famous in the, like, 1990s movie, The Fugitive with Harrison Ford. It's a public hospital, so it's owned by the city of Chicago.

[00:01:45] I was so proud to be able to train in both of those spaces and feel like I'm seeing the women I want to see. I'm taking care of my people, etc. And I remember being at Cook County one of the first times, and I was doing a routine kind of like women's checkup exam on a woman. And she was young. She was in her early 30s. I was asking her about her periods and things. And how she was answering my questions made me very concerned that she was bleeding too much.

[00:02:12] I thought, you know, this is—you're going through multiple pads a day. You're using a liner on your mattress. Like, this is a lot. We should check your blood count level. Dr. Dahl's patient was there for something pretty routine. She wanted to get her birth control. I remember she was kind of like, let me in, let me out, let's go. And I was like, please, let's just get this lab. So we got the lab. And her hemoglobin or her blood level came back at 4. Normal is 12.

[00:02:39] 4 is so low that it would be a critical lab alert for an admitted patient to a hospital. You would get a phone call from the lab if that lab came up to say, you have somebody who might be dying. Like, this requires a blood transfusion immediately. Very dangerous. So I was alarmed. So I called her, you know, and I said, your blood count has come back. It's way too low. You need to get to the emergency room immediately. We need to do a blood transfusion. And also we got to figure out what's going on with these super heavy periods you're having. And she laughed at me.

[00:03:08] She was like, we always have strong periods in my family. This is nothing new. Also, I do not have time to take off work. She stocked groceries at a grocery store. And she was just like, I will be fine. Maybe we can arrange this, like, next week or next month. So profoundly for a few reasons. The first is that my first reaction was actually to be in awe of her.

[00:03:36] I thought, if you're doing manual labor with a hemoglobin of four, what could you do with a normal level? Like, you could be an Olympian. Like, you're running around with, like, barely livable oxygen. So I was just, I was thinking of her almost in this, like, superhuman way. Like, wow, this is amazing. And then immediately I was driving home and I thought, but what if she gets into a car accident? She's going to bleed out in five seconds. And it's going to be because of the car accident. It won't be because she has untreated fibroids that nobody has dealt with.

[00:04:07] What about the fact that the next period could have her faint at work fall into a concussion? Like, I realize she is actually living such a hyper-vulnerable, but completely, it's an invisible vulnerability. And my training had done nothing to prepare me for that. I was taught that somebody with that anemic looks like this, is in the throes of pain, is lightheaded, is all this stuff.

[00:04:32] And I started to realize that my norm of how I thought about women's health and the body was through the lens of white women and the privileges of white women. That was a huge vulnerability. That was a huge weakness to my ability to be a great clinician. My story is that because I think of black women as having this terrible strength. You cannot dismiss that woman's strength.

[00:04:59] But on the other hand, it's terrible because she's so strong. She's not seen as needing help. She's not seen as somebody that we should organize our care system around. And so it was that perspective that led me to start asking the question, OK, if I saw this woman and she's running around with a hemoglobin of four, why am I seeing all of these 65-year-old black women at Cook County with stage 4 womb cancers

[00:05:26] and I only see stage 1 cancers at Prentiss Women's Hospital? What's happening there? This is Overlooked and I'm Golda Arthur. Those questions that Dr. Kemi Dahl started to ask back then became the guiding light for her work in oncology and on endometrial cancer in black women specifically. According to the American Cancer Society, endometrial cancer is one of the few cancers with increasing mortality,

[00:05:55] meaning the death rate is rising. And black women with endometrial cancer are nearly twice as likely to die from the disease than white women. So what is happening here? On this episode, Dr. Kemi Dahl talks about the complex factors that are causing this deep-seated and systemic inequality in endometrial cancer. How we got here and what could make a difference. That's coming up after the break.

[00:06:28] Hi, if you're new to Overlooked, welcome. Overlooked was created to fill a gap in storytelling around women's health and give voice to stories that often go unheard. We've done episodes about ovarian cancer, ADHD, cervical screening, and endometriosis. So check out our back catalog. And if you'd like to suggest stories or topics that we can do, get on our mailing list by signing up at overlookedpod.com.

[00:07:00] Now, back to the show. I want to start with a ridiculously basic question, but I want to make sure that everybody's on the same page about this. Tell me, what is endometrial cancer? Endometrial cancer is a cancer that occurs in the heart of the womb or the uterus. So it's a cancer of the inner lining or the wall of that organ.

[00:07:22] What I think people may not realize is that we have around 66,000 to 67,000 new cases a year now. The number of cases of endometrial cancer is increasing each year, which is actually pretty unusual right now. Most of our cancers are declining, not endometrial cancer. It's not just something that may have been overlooked in the past. It is an urgent issue in the world of cancer care for all of us, and certainly in the world of women's health care.

[00:07:53] What are the symptoms? So endometrial cancer has a few symptoms. One thing is important to note is that most endometrial cancer, not all, because you're always going to have exceptions, but most endometrial cancer hits people between the ages of 50 to 70. So the primary symptom of endometrial cancer is actually having new vaginal bleeding that starts after theoretically somebody has already been through the menopause transition.

[00:08:20] So we call that postmenopausal bleeding. That's the number one sign of endometrial cancer. Other signs are things like pelvic pressure, pelvic pain, increased urinary retention or frequency, as well as bowel symptoms. And then as you go along, fatigue, and you can even have pulmonary symptoms, or lung symptoms, I should say. And within this picture that you painted of the rising incidence and the number of people who get it every year,

[00:08:46] there is a huge, huge disparity in that endometrial cancer in Black women is a different situation all round, actually, on a number of different levels. And I know we're going to dig down into some of those details. But to start us off, give us an overview of what we're looking at here about the disparity in Black women in particular. I have to take a deep breath before I say this every time,

[00:09:14] but Black women have an over 98% higher mortality from endometrial cancer than white women do in most other groups of women in this country, which is profound. That means that about two times the number of Black women die compared to white women of endometrial cancer every year. It means that for Black women, there's really no such thing as low-risk endometrial cancer, which is very different than when we talk about other women.

[00:09:48] Though endometrial cancer currently is on the rise and increasingly in the, at least discussed in cancer circles and in health circles, that statistic I shared with you has been true since the 1970s. So endometrial cancer is also one of the most egregiously overlooked health disparities when we talk about racial differences in health in this country.

[00:10:19] Okay, let's get into the factors that are causing this, right? So I'm assuming that a number of factors come into play and that's the interplay of these different elements that have got us to where we are at with these dismal numbers. Outline those factors for me. Yeah, so there are a few things going on. One of the things is the different types of endometrial cancer that somebody can get. And so what we know, this is not new information,

[00:10:46] we know that Black women have been getting and are more likely to get a more aggressive certain molecular type of endometrial cancer than other groups of people for, again, for decades. The question of why, we can keep talking about. So when you get a more aggressive cancer, it's harder to treat, harder to cure. The other problem is delays in diagnosis where Black women are much more systematically, much more likely to be diagnosed when endometrial cancer is already spread beyond the uterus.

[00:11:14] And so it's much more difficult to cure as well. You also have the issue of access to quality care. So endometrial cancer is treated by specialists, gynecologic oncologists, radiation oncologists. These are very specialized practices that are not always available to everybody. In addition, on the other side, you also have the fact that Black women are severely underrepresented in endometrial cancer research and in endometrial cancer trials. So even in the world of drug development,

[00:11:43] when we're optimizing how do we treat endometrial cancer better, we're leaving out the women who are doing the worst. So they're not benefiting from the things that we're finding out. So you can see how it's like across the whole spectrum, from getting diagnosed to getting treated to being cured. Hopefully Black women are a start at a disadvantage. You know, the idea of diversity in clinical trials is endlessly fascinating for me. I know that this is a relatively optimistic time in oncology, right?

[00:12:13] Because we have immunotherapies coming on board. But within that, right, within that sort of relative optimism is the idea that not everybody gets a fair shot, right? Not everybody gets fair access to these brand new, shiny, life-saving therapies. And I'm assuming that that is the case in endometrial cancer as well? 100% the case. It's unfortunately, it's what we see when we develop new, shiny, wonderful things is that we actually see worsening of disparities initially

[00:12:42] because, you know, we have a tendency not to think of everybody. You know, we don't initially. So in endometrial cancer, we absolutely see that. One of the most amazing things that happened in 2023 was that for the first time, we had two large landmark clinical trials that demonstrated an improvement in survival in endometrial cancer. This was like the first time this had happened in 20 years. It was shocking and exciting to the whole field. Unfortunately, what we know just a few years later

[00:13:10] is that Black women are not getting those advanced treatments. So these are different types of immunotherapy that are improving survival for people that we assumed would absolutely not make it, would have a few months, maybe a couple years, who are living four, five, six years on immunotherapies, amazing results. And we know systematically that Black women are much less likely to be given these immunotherapies. So it's absolutely correct. And it goes back to speak to the underlying issue, right,

[00:13:40] which is that when we're talking about what I think of as like gynecologic health over the whole life. So endometrial cancer kind of happens at the end of somebody's gynecologic life journey. You know, maybe you say the beginning of it starts with their very first period. But what we know is that Black women are always almost second class citizens when it comes to health outcomes across fibroids, endometriosis, like anything we come up with in the reproductive health spectrum, you name it, Black women are at a disadvantage.

[00:14:07] And I'm interested in how that culminates in endometrial cancer at the end of life. But it can be very disheartening to see it play out in real time as we get new therapies on board and as you recognize that this is not reaching the people who it most needs to reach, which is why I do the work I do. I want to come back to that question, Dr. Dahl, and get you to tell me a little bit more about the why. But I don't want to let go of this line of thought here where we're talking about access.

[00:14:33] What else keeps Black women from getting access to the kind of medicine, to the kind of health care in general, that they need to get a handle on endometrial cancer? I want to highlight two forces that are working together. There's more than this, but two forces are working together. One of those forces is that we know that Black women suffer from what we call benign, basically non-cancerous,

[00:15:01] womb conditions at higher rates through their younger lives, in their teenage years, 20s, 30s, 40s. A lot of these conditions cause abnormal bleeding and pelvic pain and things like that. And we know that Black women are undertreated, and actually their symptoms are dismissed and denied, and they tend to have very negative interactions, specifically in the world of reproductive health care. So when that happens, Black women have learned to have to take care of themselves. They have to take care of their own wombs.

[00:15:30] There's not an expectation of help on the other side. So when you take a group of people that have normalized abnormal bleeding, abnormal symptoms over years, in their lives, in their communities, and you have a couple of drops of blood at 62, you're not running to the doctor. This is something you've dealt with your whole life. This is nothing new, right? So we have this normalization that is born of health care neglect,

[00:15:56] and then that is intersecting with the health care system and the biomedical kind of public health system that until very recently didn't view endometrial cancer as a priority because white women were mostly surviving. So we didn't have public education campaigns about endometrial cancer. Nobody knows what the symptoms are. We don't have any awareness of it. So you have a group of people normalizing abnormal symptoms

[00:16:25] their whole lives because they have to. Now they're running into a cancer symptom. They don't know that it's a cancer symptom because why would they? And then you have a biomedical industry and you have a health care system that isn't thinking about their risk. They're not even viewing them as really high risk, right? It's organized around actually low-risk endometrial cancer. So the two forces are coming together. I kind of think of it as like normalization plus neglect that is coming together that produces these very delayed diagnoses.

[00:16:54] I think that's important for people to imagine because it helps explain all these statistics that just seem impossible that they've lasted for so long. I understand it now. That lens that you use and that phrase that you use, normalization and neglect is really powerful because these things rarely get so bad with a single factor, right? So these two things coming together. So let's talk about the doctor's office, right? Let's say that somebody finds herself in the doctor's office

[00:17:21] talking about abnormal bleeding postmenopausal. What goes wrong in the diagnostic process here? We have to do a little bit of a history lesson. So what happened in the 90s is that somebody said, you know, we should really minimize pain among our patients and maybe we don't need to do a biopsy on everybody because if you look at white women, 90% of white women with postmenopausal bleeding don't have endometrial cancer. And even if they have endometrial cancer,

[00:17:49] they have a low-risk endometrial cancer that's cured with hysterectomy. So it would be great if we had a different process so we could decrease biopsies. So they came up with this transvaginal ultrasound screening method where instead of doing a biopsy when somebody comes in with this symptom of cancer, you do an ultrasound and then you measure the endometrial thickness and that tells you whether or not you need to do a biopsy at all. That's really important. So you use the measurement to say, do we need to continue to look for cancer

[00:18:19] or is this definitely not cancer? So these studies unfortunately did not include black women. So this rolls out and everybody's very excited about it and nobody pauses to think, does this work for women with high-risk endometrial cancer? Does this work for black women who have a higher rate of fibroids? What are the vulnerabilities here? So what my research has demonstrated to answer your question is that unfortunately few things can happen

[00:18:47] in the office with black women with endometrial cancer. And this is from talking to patients. This is from experiencing patients in my own clinic. This is from the research we do looking at healthcare patterns across the country. Black women come in, they say that they're having abnormal bleeding. They're 67 years old, it's recorded as a heavy period. Exactly. Because in the imagination, there isn't that risk factor awareness of black women being at risk for this condition. Number two, black women come in, 67 years old,

[00:19:16] report abnormal bleeding, and they're told, okay, we should maybe get an ultrasound to check that out. They're not told that they might have cancer. They're told, let's get an ultrasound to check that out. In their head, they're thinking, I've had ultrasounds before. This probably is not important. Never gets followed up on. Third scenario, they get the ultrasound. The ultrasound says, oh, well, based on this measurement, this person is okay.

[00:19:46] The doctor says, okay, great. We do not need to do a biopsy. That ultrasound measurement is incorrect. That determination is incorrect because it is based on populations of non-black women who do not have fibroids, who have low-risk endometrial cancer. It's the low-risk endometrial cancer that's most accurately triaged by ultrasound. Half of black women have high-risk endometrial cancer. So what we were able to show in my research

[00:20:15] is that this guideline, this clinical guideline we're using, actually has racial biases baked into it. It is designed to not work as well for the black women who are most at risk of dying of endometrial cancer. So these are the things that can happen. And I think of it as overlapping vulnerabilities, which is the result of a system that is not designed for those most vulnerable or most at risk. It's instead designed

[00:20:44] for the majority, right? But we live in a country where what we're trying to do is have equal opportunity for all. We don't want it to be the fact that who you are dictates if you survive this condition. So here's my question, right? We are understanding the nature of the problem, both medically and in the healthcare system and sociologically as well.

[00:21:13] What's to be done about it? Where do we get to talk about solutions or ways forward or ways to move the needle, whether it's like something small that happens regularly? Like, how do we get there? First of all, we normalize talking to any women over 40 and explaining to them in annual visits and routinely what endometrial cancer is and what the signs of it are. Number two, we normalize asking women who are towards the end of their menopause experience every time, just like we ask them about other symptoms,

[00:21:44] about if they're having any bleeding, spotting, etc. because of that. Number three, we normalize the idea that just like every other symptom of cancer, we should rule out the worst thing, cancer, before we send women on a goose chase, especially if they're at risk for high-risk endometrial cancer. So in that sense, I think we do need to revise our national clinical guidelines, which I do a lot of work to be pushing for and I think we will be making progress on that, but we have to remove the systemic inequity

[00:22:13] in our guidelines so people can be diagnosed. Number three, we need to recognize that if we don't shift our clinical trial infrastructure so we start on purpose enrolling Black women and people with high-risk endometrial cancer as a norm, we have basically set ourselves up to be losing this fight because endometrial cancer is increasing and we are not increasing our tools to fight it. On a larger level, I think we have to really understand,

[00:22:42] and I truly think this, I think we need to expand the narrative of women's health to be very explicitly include older women, menopausal, perimenopausal women, and the reproductive cancers inherent within, and I think we need to think about reproductive cancers as part of the reproductive life course. So it's not something that people are shocked about, it's something that we're thinking about early on, talking about all the time so we start to learn where these emerge from and how we can prevent them.

[00:23:12] That's like a few things. Yeah, I'm glad you said that actually because since I had my surgery to remove my ovaries, I've been looking at what we value women for medically, what we study, where we're putting the money, right? Where we're putting the attention. And we're interested in puberty and we're interested in women having babies, not having babies, having the right to have babies, having the right to not have babies. It's all around the baby. And then what? Yes. Right? And then what? Once we're done having babies,

[00:23:40] once we don't have the uterus and the fallopian tubes and the ovaries, what is our value to medicine, to society, to the economy, to whatever? You know, then we're just like people with attitude like I am now at some point. So it's really interesting to me like the bits that we're paying attention to and the bits that we're not. And I'm really glad you said that because the bit that's being left out as well is this post-menopausal stage, right? We also understand

[00:24:10] so little about menopause itself because we're too busy hawking the estrogen creams or whatever. But I think that's a really valuable insight. Less than 10% of the entire NIH buzz that goes to women's health questions. That was before this current administration. Less than 4% went to gynecologic cancers. 1% went to all other gynecologic issues. Think about that. 50% of the population have these organs. And if you take away pregnancy,

[00:24:40] 5% of the NIH budget goes to studying all of the conditions. You start to understand why we are where we are. Alzheimer's as a single disease is like three times more funded. And we're talking about all the diseases that could affect the female reproductive course. So I just think, you know, we do have a societal disinvestment in women's health with the uterus and all of those things. We have that. And I think what you're pointing out is it's actually very clear

[00:25:09] to see how our society values women by looking at what we study and what we consider important. And I mean, unfortunately, right now, we're dealing with an administration that's making it quite explicit what they want women to be for, which is going to impact gynecologic health access across the board. Dr. Doll, you and I had a conversation on the phone before we did this interview where you said something to me that was so stunning and it has stayed with me ever since. You said,

[00:25:39] when it comes to endometrial cancer in the context of endometrial cancer and possibly elsewhere as well, Black women are the canary in the coal mine. What did you mean by that? I mean that when we pay attention to Black women, we learn lessons that inform and help everybody and often we learn them sooner. In endometrial cancer, Black women have had to contend with high-risk endometrial types, aggressive disease, endometrial cancer

[00:26:08] that people did not understand for decades. If we had paid attention to that, we would not now be caught flat-footed, shocked, and highly concerned that high-risk endometrial cancer is increasing across the board, across the country, every year, year on year, and nobody knows why. Black women are the canary in the coal mine of women's health care. They show you all the different ways

[00:26:38] that vulnerabilities can exist and that disease can be neglected. And if you pay attention to that, you will then see what is potentially the future of all women in this country. The other thing I also say is we're not just the canary in the coal mine. we're also the secret keepers of survival because despite all of this, Black women are still here.

[00:27:07] Despite all of this, Black women still thrive. I always think to myself, there is so much knowledge and rich understanding biologically, physiologically, and sociologically in that fact. It's why my work is unapologetically focused on Black women and it's why it's so self-defeating for us to run trials, to do research, to do all this work and leave Black women behind.

[00:27:45] I want to draw us to a close by asking you this question. In a sea of things that are overlooked, what do you think is the most overlooked aspect of endometrial cancer and where is that inequality felt most deeply? The most overlooked aspect, I think, of endometrial cancer is that it's such an intimate disease. It's a cancer that grows in the heart of the womb. Its symptoms

[00:28:15] are similar to the kinds of things that have happened to women, often in terrible times in their lives, often in times of stress. It can bring up so many powerful, often negative memories from women who experience endometrial cancer and thus the way that our caretaking, including our diagnosis, begins with endometrial cancer dictates a woman's experience of her entire cancer journey.

[00:28:45] And I think what is overlooked is the care and the humanity with those early interactions. It is so vulnerable to say I am bleeding and I don't know why. It is so vulnerable to go through an endometrial biopsy when maybe for years you haven't even thought about what's going on down there. It is so vulnerable to be diagnosed with something that you can barely pronounce and that you've never heard anybody talk about. It's so vulnerable to lose your hair and have everybody ask you, is it breast? And then you fumble for words because you don't

[00:29:15] know what to say. I want us to recognize and really respect and take care of women who go through such a vulnerable journey. Well, this has been a really moving, extraordinary conversation. And I thank you so much for being willing to have it with me. Absolutely. As I told you, I love to talk about this topic. I'm writing a book about this topic. As heavy as you mentioned as some of the things we talked about are I see so much potential

[00:29:44] in change and I'm such a believer in the power of community and in the power of women coming together to rewrite things that we no longer are willing to tolerate. Overlooked is here for information and empowerment but not medical advice. Every person's body is unique so if you have questions it's best to speak to your doctor or healthcare provider. We're building a community around women's

[00:30:14] health so that no one is overlooked. If you'd like to be part of it, hit the follow button on this podcast wherever you're listening to this. Or you can show us some love by writing us a review and sharing this episode with someone. Overlooked is written and created by me, Golda Arthur. Jessica Martinez-Dejos is the show's producer. You can stay up to date with the show by signing up for the newsletter and following us on Instagram and LinkedIn. We read every review and email

[00:30:43] so write to us hello at overlookedpod.com Thanks for listening.