Season 3, Episode 8: Disparities in diagnosing and treating breast cancer
Breast cancer accounts for about one in three diagnoses of cancer for women each year in the United States, yet vast disparities exist: Black women have a higher likelihood of developing breast cancer before 40—and at every age, Black women are more likely to die from breast cancer than other groups.
In this episode, we break down how screenings and vigilance can save lives among women of color, as host Ellen Beckjord talks with LaJuana Fuller, director of Women’s Imaging at UPMC Magee-Womens Hospital, and Dr. Margaret Rosenzweig, researcher and professor of nursing at the University of Pittsburgh.
The American Cancer Society recommends that all women should have a choice to be screened starting at age 40, and that women 45 and older should have annual mammograms. Providers may recommend that some women, due to family history, should have MRIs along with mammograms. As always, women should work with their providers on this decision.
All about early detection: Get to know how you can be vigilant to try to catch the disease early with these tips from the American Cancer Society.
Act quickly: Women should be familiar with how their breasts normally look and feel and should report any changes to a health care provider immediately.
Family history: A Pennsylvania law adopted earlier this year makes genetic testing for women with a history of breast and ovarian cancers more widely available and affordable. It requires insurers to cover the cost of certain screenings.
Find support: The African American Breast Cancer Alliance is a community that provides support and awareness to Black women and men affected by breast cancer. Reona Berry, a breast cancer survivor, is the founder of this nonprofit.
What do patients need? Check out this story from PittMed.
If you are a UPMC member, find out how to get a mammogram by calling 1-800-649-4077, or filling out this form.
If you live in Pennsylvania, you may qualify for an early detection screening for breast or cervical cancer through the state Department of Health. Call 1-800-215-7494.
Read more about cancer disparities and resources to help you or your family.
Dr. Ellen Beckjord: In this episode, we explore health disparities in breast cancer screening, diagnosis, and treatment and how those factors affect women’s health. I’m joined by two guests. First, I’d like to introduce Dr. Margaret, or Peggy Rosenzweig, a professor of nursing at the University of Pittsburgh and a researcher studying the effects of race and income on equity in cancer treatment. Dr. Rosenzweig, welcome.
Dr. Margaret Rosenzweig: Thank you for having me.
Dr. Ellen Beckjord: And next, I’d like to welcome LaJuana Fuller, director of Women’s Imaging and chair of Diversity and Inclusion at UPMC Magee-Womens Hospital. LaJuana, thank you for joining us on Good Health, Better World.
LaJuana Fuller: It’s absolutely my pleasure. Thank you.
Dr. Ellen Beckjord: Earlier this season, we had an episode about preventive care in which we talked about cancer prevention — and specifically for breast cancer, the importance of mammography as a screening measure. But today I’d like to talk with both of you specifically about disparities that exist in breast cancer all the way from screening to treatment, and what’s being done locally and nationally to address those disparities. And LaJuana, if I could please start with you. Could you tell us about some of the disparities that exist when it comes to screening and receiving a diagnosis of breast cancer?
LaJuana Fuller: Sure. Thank you. Well, we know that screening is important. Hence, this discussion. And we know that while disparities can supersede any race, ethnic group, meaning that anyone can be subject to a disparity to some degree. Right? But to a greater degree, we know that those disparities exist primarily in the Black and brown and marginalized communities. And some of the disparities, in no particular order, would be — access, awareness, education, insurance coverage for the imaging, transportation, variety of social determinants. But what I tend to see, that one of the most consistent and common efforts to deal with disparities is education, awareness. The work that I’ve done here at Magee has just been a great work. And, interestingly enough, for the amount of years working in the community to eradicate disparities, almost every time the same questions come up — the same myths, the same concerns. And for me, that indicates that education and awareness is the most critical component of it all. And if we can really ensure that those in our communities are aware of the truth of breast cancer screening, the importance of breast cancer screening, what it means to you individually, collectively, as a member of your community and your family. There are many, many, many myths. Some of the same questions come up over and over again. That’s, I think, probably one of the most critical disparities that we see is that education, lack of education and awareness.
Dr. Ellen Beckjord: Could you give an example of some of the common myths just for listeners who might be curious?
LaJuana Fuller: And this is a myth that does supersede race or ethnicity. That, if I don’t have a family history of breast cancer, I can’t be diagnosed with breast cancer. And that is so untrue. Actually, more breast cancer diagnoses come from women that do not have a family history. Or, I’m too young. Or, I’m too old.
Dr. Ellen Beckjord: And you gave great examples of, obviously, screening for breast cancer is not something we can do via telehealth. It’s not something we can digitally solve for. You still have to come. It’s an in-person event. And, so all of the things you’d mentioned about transportation and having time, having resources, having insurance coverage are all very important. Do we also observe disparities post-screening in ability to receive recommended follow-up, whether biopsy or treatment, if a diagnosis is made upon screening? Is that another place where disparities exist for Black and brown women?
LaJuana Fuller: That’s an absolutely fabulous question because the answer is yes. And my partner, Peg, would know that moreso, because we’ve just completed in June of this year, we were in a three-year cohort with the American Cancer Society. It’s a community of practice. And through this cohort, our focus was obviously breast health equity. And when you start something like this, you have assumptions, “Oh yeah, this is what we’re going to work on.” “Oh yeah, this is going to be it.”
We assumed that it was going to be screening, getting the women in for their screening, but it turned out it was actually getting them to come back for their recommended imaging. And so that’s where we spent a lot of time educating, calling, making sure there was transportation available, and getting the women in. And for those [who] participated in that particular work within that cohort, we were able to get all those back in that needed additional imaging. So we were successful. But that was just a small corner of our city here. But the point taken from your question, do we see that there is disparity there? Absolutely there is disparity there.
Dr. Ellen Beckjord: Peggy, did you want to add anything to that?
Dr. Margaret Rosenzweig: Right. So that’s the idea of the continuum that we can say, “Oh, let’s go out and get mammography,” and that’s great. But then we have to do the follow-up. And I’ve always been particularly impressed with the tenacity by which Magee will follow patients for follow-up. There’s a real infrastructure there that I think is very, very impressive and to be congratulated.
LaJuana Fuller: Thank you, Peg. Absolutely. And I want to backtrack just a little bit, although we were focusing on the follow-up imaging. When we’re talking about screening, which we know that there is not necessarily a huge disparity with screening, but when we do this work in the community, we’ve been fortunate to have great partners in the community: philanthropists that will donate funds to pay for imaging. So when I talked about one of the disparities in having the imaging performed, if you don’t have insurance, you are reluctant to try to find ways to get in and get the imaging done.
So one of the programs that we started with several years back, was to pay for transportation to get the women in for their mammograms. But I thought we need to do more, right? And so we added education to that, and we’d have radiologists speak to imaging — how the imaging looks and what they’re looking for. And prior to coming for your imaging, what are those things about your breast health that you should be aware of? There’s a nutritionist that speaks to healthy eating. There’s a surgical oncologist that talks about life post-diagnosis. And then, of course, I’m there just to be that administrator. I have a clinical background as well. So I kind of am that conduit between all of those. But what we recently added during the pandemic that just was extremely exciting to me was one of our radiologists speaking about research, the importance of research.
And Peg knows that better than anybody, because when you don’t know what to do, you need those that are being affected to help you determine what those things are that would help you in your healing. And so one of our radiologists speaks about the importance of enrolling in trials.
Dr. Margaret Rosenzweig: So that if you’re in treatment, if you’re in the hospital for any reason and somebody says, “Would you be interested in talking to us about research?” You’ve already heard that. Oh, that’s part of what I should expect in terms of my care. I think we have to change the message of research to say, “You should expect to be asked to be in a research study. That’s part of why you’re at this academic medical center. That’s part of what we can offer.”
LaJuana Fuller: Absolutely.
Dr. Ellen Beckjord: Yes, and to understand the huge importance and service that it really is to dedicate your time to being part of research.
Dr. Rosenzweig, your research has primarily focused on Black women with breast cancer, women with metastatic breast cancer, and community engagement to address racial and economic breast cancer survival disparities.
Would you please tell us about what challenges, and, in particular, what disparities women may face after they’ve been diagnosed with breast cancer or metastatic breast cancer?
Dr. Margaret Rosenzweig: Yes. We can’t let the attention to equity kind of dissolve once someone is diagnosed with breast cancer.
LaJuana Fuller and the people at Magee do such a wonderful job of ensuring that there is follow-up for any abnormal mammograms. And that the equity in mammography screening, and then the follow-through, happens. But once someone is diagnosed with cancer, and specifically breast cancer, we want to ensure that these disparities do not creep in. And what we found in research over many years is that Black women are coming to breast cancer treatment, they are being offered appropriate, as per their tumor, treatment. And then as they embark on treatment, they are not receiving [the] full-dose intensity of the treatment that white women receive.
And we believe that is because of the symptoms that are experienced during the breast cancer treatment. And we’ve specifically studied breast cancer chemotherapy, necessitating dose reductions, interruptions in treatment, and actual early cessation of the therapy. We have looked at this and have talked to Black women specifically about sort of how they manage their symptoms and what challenges they see. And often they feel that it just isn’t kind of worth it to let the clinicians know early about symptoms or they feel that they’re really not being listened to or that, in their words, “I’ll just be handed another pill that may or may not really work.”
So we have a lot of work to do here in terms of learning to listen, to communicate about symptoms, and to really understand the experience of a Black woman as she’s going through chemotherapy.
Dr. Ellen Beckjord: And so then, just to make sure I completely understand, it’s that these symptoms escalate to a point that necessitates lowering dose or going off dose schedule, and the lack of earlier intervention to potentially ameliorate those symptoms, which it sounds like your research has really pointed to needing to improve communication and trust among the patients in communicating to their providers about these symptoms and confidence that they’ll get intervention that would help, that might be an important leverage point in changing that.
Dr. Margaret Rosenzweig: Exactly. I think it’s the confidence in the relationship in saying, ”Yes, I will speak and someone will listen and respond and understand me,” in the context of the symptom management strategies that we’re working on. And that’s, I think, where we really have the work to do — both in empowering patients in sort of saying, “You can speak this language, we can help you communicate these symptoms in an effective and in a manner that where you are self-advocating.” And we have to work with the clinicians to really hear what people are saying and to understand that there’s different patterns of communication according to the individual person.
Dr. Ellen Beckjord: Are you observing this in both women undergoing chemotherapy for nonmetastatic breast cancer and among women who are undergoing chemotherapy who have metastatic breast cancer?
Dr. Margaret Rosenzweig: Well, for women who have metastatic breast cancer, it is a whole other journey. Nowadays, with advanced stage cancer, patients are receiving treatment, but it’s not an immediate death sentence. And so in the olden days, if it was palliative care, it was, you know, we really are not working on extending life, we’re working on quality of life.
But with the amazing discoveries and improvements in care, you can now extend life even with metastatic breast cancer. But you are asking people to go on a journey, a very expensive and sometimes toxic journey that is then in accumulation with the other stressors of their life. And this could go on for one or two or three years. And so the — if, for instance, in Pittsburgh, a woman, a Black woman from a poor neighborhood who then is asked to go on this metastatic breast cancer journey, will have multiple issues around financial issues, access to care in terms of transportation, a lot of family stressors that we perhaps don’t realize in the context of the journey that she’s on.
Dr. Ellen Beckjord: Peggy, is it accurate that Black women disproportionately get diagnosed with metastatic breast cancer as compared to white women? Is there a higher incidence of metastatic breast cancer in Black women than white women?
Dr. Margaret Rosenzweig: No. The overall incidence in breast cancer among all Black versus white women is lower in Black women. If you take younger Black women versus younger white women, it is a bit higher in Black women at a younger age. Black women will have a shorter overall survival and so they will develop — that’s essentially what you die from in breast cancer would be metastatic breast cancer. So they will progress more quickly than white women, overall. But it’s not that there are more numbers. It’s the pattern of the disease.
Dr. Ellen Beckjord: OK. And I don’t want to overstate the findings of the research you talked about earlier— but just for listeners, many of whom may know this, there were two things that stood out to me about what you talked about earlier.
One is that if Black women are underreporting symptoms, then they’re not getting the care that they should be during their journey to manage those symptoms. But to have dose reduction or have to go off schedule from recommended protocol, that can really have a tangible and significant effect on the trajectory of the disease, and can definitely put people in a position of having a much higher probability of disease advancing or poor outcome.
Dr. Margaret Rosenzweig: Absolutely. And so it is our obligation as clinicians if we say, “Your tumor is of a type that requires chemotherapy,” it is then our obligation to also say, “And we’re going to walk this journey to ensure that you get the doses that are recommended,” because to get half a dose of chemotherapy is really … you could say you’re getting toxicity without much benefit.
Dr. Ellen Beckjord: We had the really good fortune to have Dr. Sharee Livingston as a guest earlier this season where we talked about reproductive health care. And in that conversation, she shared a really staggering statistic that for the past 40 years, the number of Black doctors has hovered around 5 percent of the entire provider population. In addition to a lack of representation and care providers, we recognize challenges like implicit bias that impact the health care experience and the health outcomes of women and people of color.
LaJuana, I’m wondering if you could share with us your perspective from your experience in the field of women’s imaging, your perspective regarding representation and care providers, the importance or the role of racial concordance between patient and provider, or anything else you care to comment on regarding that topic?
LaJuana Fuller: Sure. Thank you. The role of racial concordance is critical. There was a study, a Penn State study — and there’s others that speak to this, it’s not the only one — but individuals feel more comfortable, they’re less anxious, when they’re able to receive their care from someone that looks like them. There’s a lot that feeds into that, that, “You understand what I’m saying.” and, ”I don’t sound stupid,” or “I don’t sound, you know, like I’m not making sense.”
And when you have someone who can relate but then still give you that information to help you with whatever said health issue it may be, it definitely makes a difference. Speaking specifically about women’s imaging or imaging as a whole, as I shared, I have a clinical background. I am an imager. Even my first undergraduate degree, I probably was one of less than five in the radiology program at the college where I was, in Michigan. My first role in a major hospital in suburban Detroit, I was the only Black, female radiologic technologist in the department for a while. And that was 37 years ago. And you think about what’s happening today, it is not different today. And that’s the unfortunate thing. We can think about it on all levels. So, yes, physicians, clinical on the floor, administrators like where I am right now. Representation matters. And we know that because we are hearing it and seeing it, that it’s important to represent the communities that you serve.
I think what’s making the position more powerful now is that the community is saying that. There was a time that the community didn’t say that, because there was a different way that you approached health care. You just walked in and whatever that person told you, it was just, “Yes and amen,” and, “I’m going to do it.” My grandmother did that. You know, her doctor had her, like, on a gazillion pills. And it was probably in the ’80s. And my mother said, “This is not right.” She took her to another physician and cleaned that up.
So my point in sharing that piece of it, that we were just trusting what was told to us and now we have a more educated community of people, patients, those that are coming to us when they’re vulnerable in their health care, and they’re making demands like, “This is what’s important to me.” And even for follow up or for better outcomes, when someone is talking with you that you feel that you can relate to whatever it is that you’re dealing with, it makes a difference.
And I think another reason why it’s critical to have someone that you can relate to, particularly for Black people, is because of the distrust. We have an ingrained distrust with the medical community, and it’s validated. We can talk about that.
We hear about Henrietta Lacks, we hear about the Tuskegee syphilis study, we hear about things like that, and we hear about maternal fetal health. And so Black folk aren’t really very trusting. And, you know, there’s a reason why. So how do we get them to start trusting? You know, we have people that look like me hopefully that can convince you that it is important to be a part of research, that it is important to follow what the recommendations are. We hear you. We understand. And to break down those barriers, those walls of I don’t care what you tell me, you don’t look like me. I’m not going to trust you.
So it is real. That’s why I do consider it a blessing that I am here in Pittsburgh to speak to the women. And, you know, like I was saying earlier, Peg and I have worked together for a while, and there is nothing that brings me greater joy when someone nods and says, yes. I had a patient when we first — this was just before the pandemic — it was one of our outreach events. And those are typically for screening patients, because, and that’s another thing I think I’ll admit it, saying that: You can get all the education that you can, but I want you to get your mammogram while you’re getting that education, because, you know, pamphlets and fliers, they’ll end up in the garbage or on the bench somewhere. But if I can’t get your mammogram that day, I don’t feel accomplished. So everything we do in this pathway, I look to make sure — when you talk about telemedicine and all that — I look to make sure that that mammogram is done.
So my story is: When we have our events, they are typically for screening, mammography, which is your standard 10-minute exam. Come in, get your imaging, and you’re done. When there’s a diagnostic procedure, there’s more involved. You may have to have more mammographic imaging; you may have to have an ultrasound. And then there’s a physician on site who can read while you’re there and give you the results. Well, I had a patient to call on one of those Saturdays, and I’m talking with her. And I’m just going to say it this way:
She was the typical woman in a sense, but the typical Black woman. I’m taking care of everybody else in my household, my grandchildren, my husband, I’m working and all this. So when I’m speaking with her, I ask several questions to make sure that they fit the criteria for screening. And she didn’t, she didn’t. And I thought, “Oh, Lord, I don’t want her to get away.” I don’t. So I went to my physician, who was going to be working and I said, “I’m talking with a patient. She’s not a screening [candidate], but I need to get her in.” And she says, ‘“OK, we’ll do it. We’ll do everything.”
Breast cancer. She had this lump in her breast for over a year and she knew that it was in her breast for over a year. But she was so wrapped up in being her best for everyone else, she neglected coming in for her imaging. And I’m telling you, I just thank God because, and she does, too, but you know that number one, my physician said, “Yes, absolutely, get her in.” Number two, that she saw our information and decided to make the call and sign up.
And she’s alive today. Her husband has his wife. Her children have their mother. Her grandchildren have their grandmother. Right? So that’s the purpose of all of this.
Dr. Ellen Beckjord: Absolutely. Really, truly saving lives. Peggy, can you tell us about the work you’re doing? So sticking with the pipeline idea and diversifying the workforce, we’d love to hear about work you’re doing providing education for community health workers as part of a way to diversify the research workforce.
Dr. Margaret Rosenzweig: Well, as I began doing research, I have always involved community members, particularly as a white woman doing research around equity. I really didn’t want to say, ”I think we should do this” and ”I think we should do that.” And so I’ve learned very early on to involve community members and to say, ”Help me. This is the problem that I’m seeing. But I don’t know how best to go about this.” And LaJuana has been part of that.
In our first study that we did, we had patients, everybody, regardless of where they were randomized, would come and start their chemotherapy, where those had not been the numbers before. And I believe it was because our recruiters were Black. And so regardless of whether you were put into the intervention group or the control group, you met a very kind, a very professional Black woman when you walked into Magee, and she said, “Hello, can I talk to you?” You know, everybody came back for chemotherapy because I think they felt like there’s somebody here, speaking to what LaJuana said, that knows me, that understands me.
And so, being a professor, I developed a curriculum around the training that the community workers or people who were hired to our research staff felt as we kind of did this together, what was really important and how they developed in their research careers.
Dr. Ellen Beckjord: So it sounds like you really co-designed that curriculum with the research staff, right?
Dr. Margaret Rosenzweig: And I do appreciate, you know, the IRB [Institutional Review Board] and CTSI [Clinical and Translational Science Institute] being kind of flexible about, “Well, here are the research modules and you cannot make these a tiresome four-day event of kind of filling out modules, but you can tailor these to your study.”
I think a lot of efforts are being made to diversify the teams, but you do have to do the work of finding people, and appropriately training them, and supporting them.
Dr. Ellen Beckjord: Right. I’d love to pose a last question for both of you. Specifically, I’d like to know what you’re most hopeful about when it comes to either the future of breast cancer prevention, the care and treatment for people who experience breast cancer, and eliminating health disparities in breast cancer. LaJuana, if I could please start with you.
LaJuana Fuller: Sure. I’m most hopeful about the education and awareness that’s taking place right now. That has to continue. And what has to be added to that?
We didn’t touch on it, but more Black women are being diagnosed with breast cancer at a younger age. And just recently with a revisitation of screening, it is being recommended that Black women start their breast cancer screening even earlier. So I am most hopeful about, number one, continued awareness and education. What goes along with that hand-in-hand? Dispelling myths. After that is appropriate screening. So touching back to what I just said, the appropriate screening because it does vary based on your ethnicity and your race and just dealing with other social determinants to keep, well, to prevent anyone from not getting in for their screening.
Dr. Ellen Beckjord: Let me ask you a quick question about the myths, though, again, because Peggy had talked earlier about outcomes in breast cancer, even for metastatic breast cancer, have changed pretty significantly.
Is there still some education to be done around breast cancer as a serious illness, but in most cases treatable and even curable? Is that a myth that we have to keep pushing back against? Do people understand that this isn’t a death sentence and that there’s a lot that can be done?
LaJuana Fuller: That is something that we still need to make sure is understood. Because if you tie that in with, “Well, I’m only 32, I — there’s no way that my breast being red and my nipple being inverted, I don’t have cancer.”
And just another side story, because of the things that I do in the community. I received a call a couple of months ago. It wasn’t local, but because they know what I do, there’s a 28-year-old with breast cancer. We diagnosed a 23-year-old — you know, so it’s younger and younger. If we can detect it early enough, you have a better chance of survival, because we can start treating for everything that Peg shared. So we have to dispel that myth that necessarily, age is the determinant of breast cancer, right?
Dr. Ellen Beckjord: Very well said. Peggy, how about you? What are you most hopeful about?
Dr. Margaret Rosenzweig: I’m hopeful because I do have exposure to a lot of students and I am seeing this…. I don’t know if it’s post-pandemic or just a new generation, but an awareness and a — this is not going to continue this way around diversity. And even among, you know, we have largely white classes at the [University of Pittsburgh] School of Nursing. I’m just seeing a willingness to be open to discussion, to thinking about different points of view. And I’m just finding it to be so, you know, kind of warms your heart. Because I haven’t always felt that.
And I think the younger generation is truly, truly a blessing to us all. I think there will be change. I also am always encouraged by the collaborative work in Pittsburgh, the group that we have been working with, before that, the Allegheny County Breast Collaborative, where you ask people to come together to address this racial survival disparity in breast cancer and boy, they come out and it doesn’t matter what health system or what organization, people are very committed to making our corner of the world a place where we could potentially eradicate this disparity.
Dr. Ellen Beckjord: I agree, that’s very hopeful. Thank you. Well, Dr. Rosenzweig, I want to thank you so much for taking time.
Dr. Margaret Rosenzweig: Thank you for having me. I love to talk about this.
Dr. Ellen Beckjord: And LaJuana, thank you so much for making time and for the work that both of you do on this incredibly important topic.
LaJuana Fuller: I’m honored. I’m honored to have this time.
Dr. Ellen Beckjord: Learn more about the breast cancer resources we discussed today by visiting the show notes for this episode at Postindustrial.com/GoodHealth.
Dr. Ellen Beckjord, MPH, is host of the Good Health, Better World podcast.
Ellen is a behavioral scientist, epidemiologist, and licensed clinical psychologist working at the intersection of population and digital health. A long-time member of the Society of Behavioral Medicine, Ellen currently serves on the board of directors as president-elect.
Her work focuses on promoting health, wellness, and health behavior change. She is vice president of population health and clinical optimization for UPMC Health Plan based in Pittsburgh.
Ellen trained at the University of Vermont, where she worked with cancer survivors and their families, at Vanderbilt University, and at the Johns Hopkins Bloomberg School of Public Health.
She completed post-doctoral research at the National Cancer Institute in the Health Communication and Informatics Research Branch within the Division of Cancer Control and Population Sciences. She spent nearly five years in academic medicine at the University of Pittsburgh and Hillman Cancer Center.
Ellen also is the co-author of “Porchtraits” in which she interviewed people in Pittsburgh during the early months of the COVID-19 pandemic about what they were learning, missing, enjoying, what surprised them, and what they felt hopeful about.
Ellen’s guiding principle: “Lead with love.”
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