Breast Cancer and Race: Disparities and Mental Health Effects
Breast cancer is a crisis in its own right. Then came the COVID-19 pandemic, which caused many doctors’ offices and treatment facilities to close, so breast cancer screenings and treatments have been delayed for months. When some areas were just starting to schedule appointments again, many people experienced additional trauma due to the killing of George Floyd and potentially even more limited access to medical facilities. All of this fear, anxiety, and uncertainty can lead to sky high stress and despair levels, especially for people of color who have been diagnosed with breast cancer.
In this podcast, Dr. Lola Fayanju talks about some of the disparities we see in breast cancer, as well as some ways to ease stress and despair.
Listen to the podcast to hear her explain:
some of the disparities in breast cancer care and some of the reasons behind the disparities
the idea of choice and how that affects the diversity of enrollment in clinical trials
the resources she recommends to her patients who are feeling stress and anxiety
Dr. Fayanju is the Helen O. Dickens Presidential Associate Professor and chief of breast surgery at Penn Medicine, the University of Pennsylvania Health System in Philadelphia, PA
— Last updated on February 11, 2022, 9:43 PM
Jamie DePolo: Hello. As always, thanks for listening. Our guest today is Dr. Lola Fayanju, assistant professor of surgery and population health sciences at the Duke University School of Medicine. In addition to treating people with breast cancer surgery, Dr. Fayanju’s research interests include using big data and sophisticated analyses to reduce disparities and outcomes after breast cancer diagnoses and to improve the value of breast cancer care.
When she was a general surgery resident at Washington University in St. Louis, her research found that women treated by safety net primary care doctors in the Greater St. Louis area were more likely to be diagnosed with more advanced-stage breast cancer than women who had private insurance. She also looked at the reasons behind this disparity, and her work led to an overhaul of the referral process for underserved women in the Greater St. Louis area.
Breast cancer is a crisis in its own right, then came the COVID-19 pandemic, which caused many doctor’s offices and treatment facilities to close, so breast cancer screenings and treatments have been delayed for months. When some areas were just starting to schedule appointments again, nationwide protests sparked by the killing of George Floyd caused some medical facilities to shut down again. All of this fear, anxiety, and uncertainty can lead to sky-high stress and despair levels, especially for people of color who have been diagnosed with breast cancer.
Dr. Fayanju joins us today to talk about some of the disparities we see in breast cancer, as well as some ways to ease stress and despair. Dr. Fayanju, welcome to the podcast. Thank you so much for helping us talk about these important topics.
Dr. Lola Fayanju: Thank you for having me.
Jamie DePolo: So, there’s been a lot of media attention on disparities in breast cancer outcomes, and we know that Black women are 40% more likely to die from breast cancer than white women. But as your research at Washington University found, there are also disparities in care before women are even diagnosed. So this is a large topic, I know, but can you help us understand what these disparities in care are and some of the reasons for the disparities?
Dr. Lola Fayanju: In the United States, white women are actually the most likely to be diagnosed with breast cancer of any racial or ethnic group, but there are significant disparities in terms of who is most likely to die from breast cancer, which is, for the most part, a highly curable disease. For early-stage breast cancer, rates of survival are often greater than 90%, but amongst women of color, particularly African American women, we see much worse mortality rates, and that’s in part related to the fact that we have people presenting with later-stage disease.
There are a lot of reasons for why there are disparities in breast cancer by race/ethnicity. Some of them are related to access, some of them are related to the prevalence of certain more aggressive phenotypes of breast cancer amongst Black women, but the truth of the matter is there was a recent study done about 4 years ago that showed that most of the disparity was in outcomes following the most treatable, curable forms of breast cancer, that is, the types of breast cancer that are fed by hormones. So yes, triple-negative breast cancer is more common amongst Black women and is a more aggressive type of cancer with a higher rate of death, but amongst people with triple-negative breast cancer, there is no racial disparity. The disparity is in the type of cancer for which we have some of the best treatments, so that really has to point you away from thinking, “Oh, it’s about the prevalence of a particular type of disease” or what have you. It is at some level systematically related, also, to the kind of care women are getting, how they’re receiving it, how it’s manifesting in them, and whether or not it’s actually contributing to cure when it otherwise might have.
Jamie DePolo: Okay, and for the study you mentioned that was looking at hormone-receptor-positive disease, were the disparities then in the kind of treatments that different groups of women were getting, like ongoing adjuvant treatment, like long-term hormonal therapy, or was it just in all treatments immediately after diagnosis?
Dr. Lola Fayanju: That’s a great question. That particular study was focusing more on just looking at outcomes, that is in whom were we seeing higher rates of death and how that relates to the particular tumor subtype. But other studies have demonstrated more variable adherence to endocrine therapy, which is a form of oral medication that is typically taken after people have completed their local-regional, that is their surgery and radiation treatment, and that women typically take for 5 to 10 years.
Now, the truth of the matter is adherence to endocrine therapy is a challenge across the board, across all groups, because although it is not chemotherapy, it does not involve a port or an IV, it does nonetheless have some side effects that women find difficult and challenging, and then there’s also just the challenge of taking a pill every single day for a very long period of time. So, there is some concern about adherence among women of color, but it’s not felt to completely justify or explain the difference in the outcome that we also observe.
Jamie DePolo: Okay, so it sounds like then it was perhaps the type of care, the timeliness of care?
Dr. Lola Fayanju: You know, I think that what the situation with outcomes among Black women and breast cancer demonstrates is that it’s often structural contributors. It’s not just adherence to care among Black women or access to care in terms of insurance, because even when you control for things like insurance and education and income, you still see worse outcomes.
I mean, at the heart of it are a number of things that, frankly, are only getting more type of airtime during the protests that we’re seeing around the country: that is, structural racism. There is evidence about bias because of how providers advise their patients, the extent to which they think that someone will actually adhere and therefore recommends it at all, the extent to which they push them or encourage them to try and stick with things even if they’re having side effects and provide them with medications to mitigate those side effects, the extent to which patients see their providers as being truly invested in their care and not seeing them as a guinea pig.
So, a lot of factors that contribute to suboptimal treatment amongst Black women that may contribute to their then having worse outcomes, and some of those factors are patient-based, some of them are provider-based, and many of them are structural, and that’s something that we’re only starting to really try and tackle in a very honest way.
Jamie DePolo: Okay. Thank you. I’ve also seen studies showing that Black women are much less likely to participate in a clinical trial, and given the history of African American people in clinical trials, it’s completely understandable. Have you studied that at all or looked at that, and do you feel like that is changing at all today?
Dr. Lola Fayanju: Well, we published a paper actually just this year looking specifically at participation in breast surgical oncology trials, and we did see a persistent disparity amongst Black and Hispanic women over the time period that we studied, which ended in 2012. And what we found, though, is that it’s very important not to ascribe a form of monolithism to the groups of people that you’re talking about, because we actually saw that amongst Black women, women who were of lower socioeconomic status were more likely to participate than women of higher socioeconomic status.
And so people often want to cite Tuskegee or cite other evidence of misbehavior and immoral actions on the part of the scientific community that have led to diminution of the trust of African Americans in clinical trials. And while that is an important thing to keep in mind, people also need to take seriously that the way in which you invite people to trials also needs to be more nuanced than just saying, “Okay, how do we get Black people to participate in trials?”
You need to take serious that many people, for them choice is a huge issue, and if you are someone who has the ability to come and make a decision, you don’t necessarily want the choice to feel like it’s being taken away from you by virtue of being randomized to a particular arm of a trial.
So, taking seriously the feelings people are bringing to those situations, that it’s not necessarily ignorance, it’s not necessarily not understanding trials, it’s precisely understanding that by choosing to be in a trial, some things will no longer be under your control. And for people for whom control has not always been granted or has in some cases been taken away, that is a very, very important part of the shared decision making, and physicians need to be aware of that when they present clinical trials to patients.
Jamie DePolo: Okay. Okay. Thank you. I’m also wondering, has anyone studied whether Black women diagnosed with breast cancer have higher stress levels than white women or women of other ethnic groups?
Dr. Lola Fayanju: That’s a great question and one that we are increasingly studying. So, we published a paper last year in Cancer looking at distress, which is a multifactorial psychological feeling that is actually documented by the National Comprehensive Cancer Network tool called the Distress Thermometer. We actually administer, at our institution, the NCCN Distress Thermometer to all women presenting with a breast condition, except for when they’re coming for radiation or systemic therapy treatments. And what we found is that actually, distress levels are pretty high for all women when they first start off, and higher for women getting certain types of treatment, but that ultimately most women kind of settle down to a similar level.
What we actually found was that when you looked at the distress score that women assign themselves, and it’s a score that ranges from 0 to 10, Black women had a lower score in median than white women did, and it was also a score that was lower than the threshold we usually use to trigger a referral to cancer support services. And what this tells us is that women may be saying, “You know what, this is just one more thing I have to deal with, my overall distress level is okay, I have coping mechanisms, I have a support system, I have resilience,” but it doesn’t mean necessarily that they aren’t also having problems. And so what we found was yes, Black women were reporting lower summative levels of distress, but they were reporting the same number of stressors as white women.
So, I think we’re still trying to figure out what stress looks like, both from the perspective of the patient and also biologically. With regards to the biological stress, there have been a couple of papers indicating that socioeconomic deprivation as well as or in addition to being a person of color can be associated with certain biological changes that contribute to breast cancer. In particular, groups as disparate as women in the south side of Chicago as well as individuals in Northern Scotland from lower socioeconomic status have shown higher rates of p53 mutations, which is a protein that can be altered in breast cancer and mutated. And it’s very interesting that in groups as disparate as that in terms of racial background, context, morality, but nonetheless there is the same signal that there is some evidence of weathering or perhaps allostatic load that is contributing to the development of breast cancer of individuals.
So the jury is still out, but there’s a lot of interest and work looking at whether or not stress — the stress of being poor, the stress of being a minority who is discriminated against in your particular context — whether all of those things can actually contribute to increased risk of breast cancer development as well as worse outcome after diagnosis.
Jamie DePolo: And I wanted to ask you, too, talking about your study looking at stress and how it appears that Black women may report lower stress levels, could part of that in any way…I have read studies showing that it’s considered more of a stigma in the Black community to have any sort of mental health issue. Does that play a role in there at all where it’s more like, “I can cope, I am stressed but I can cope, I don’t need help?”
Dr. Lola Fayanju: Well, there is a phenomenon that’s been described as the superwoman phenomenon, the idea that women of color and Black women in particular may feel that they have to be all things to all people, and they occupy roles of caregiver across generations and across different contexts.
That being said, one of the benefits of the Distress Thermometer is that distress is not a diagnosis, right? It’s supposed to be temporary, and so even individuals who might otherwise feel a little apprehensive about ascribing depression to themselves nonetheless might be willing to endorse distress in a given circumstance.
The other thing to realize or to think about is that stress, which is obviously a little bit different from distress but contributes to distress, is not always a bad thing. You know, stress also motivates us sometimes to act, and so it may be that in some women you want a little bit more stress than you have because it actually motivates you to get the treatment that you need in a timely fashion. So finding that balance between distress that is not crippling but stress that is motivating is something that potentially can be modified, and the question is how can we tap into that balance and help women get the care they need in a timely fashion without being overwhelmed by a situation they find themselves in.
Jamie DePolo: Okay. Okay. Thank you. Now, moving on, kind of the current situation going on in this country, many people in our audience were telling us that their treatments were just starting to be rescheduled, then with the political and social justice protests that happened in the last 10 days, some treatment centers had to shut down again. And we’re hearing, at least from our audience, that their stress levels are just skyrocketing. I’m curious, what are you seeing in your practice in the Raleigh-Durham area, and how are you talking to your patients about this?
Dr. Lola Fayanju: That’s a great question. You know, back in late March, several professional organizations indicated that screening should be stopped, as well as there should be a change in how we should approach treatment. So, one of the recommendations from American Society of Breast Surgery was that anyone with a small kind of localized tumor should probably go on endocrine therapy if it’s hormone-receptor-positive in order to avoid surgery and potentially straining resources that would otherwise be occupied by COVID-19-related disease. And what we’re now trying to do is extract people from that strained state of affairs where something other than the standard of care was being advocated because of logistical concerns.
What I have personally observed is that there is some guilt amongst women in terms of, “Gosh, for me to have breast cancer in the midst of all that’s going on.” Some of them, the guilt is related to their families, that they feel like it’s another burden, some women feel almost upset about complaining given that there are other big things going on. So there is definitely a collision course right now between cancer and COVID-19 where somehow what you’re going through is not feeling as important even though to you it’s still cancer, and it’s still the thing that keeps you up at night.
And so what I’ve emphasized to my patients — some of whom were actually reluctant to come in if they were having a problem for a routine follow-up because we were encouraged to do telehealth visits unless someone absolutely needed to be seen — is, I’ve emphasized there is no hierarchy of suffering, and that it is perfectly fine for you to still hate cancer, and it’s fine for you to still feel like the potential recurrence or the potential end of your life from cancer is much more of a priority to you which COVID-19, which in this area feels relatively remote for some communities. And so just validating women’s feelings and saying, “Look, this is not to mitigate the real dangers that COVID-19 holds for our society, but we will prioritize your cancer, I am here to help, and no one is going to make you feel less than for having this situation occur in the context in which we’re living.”
Jamie DePolo: Okay. Thank you. Are there resources that you recommend to your patients who may be feeling overwhelmed or really stressed by their diagnosis, maybe other things in their life, other things in the world? I’m especially thinking of people, say maybe they can’t afford to visit a counselor or make a psychologist appointment, or people who may feel some sort of stigma around asking for mental health services. So, I guess I’m wondering, are there places that you refer your patients to, and are there things that people can do on their own, and I apologize, that’s a really big, long question.
Dr. Lola Fayanju: So, I think what the COVID-19 pandemic is going to cause is a disruption in the socioeconomic state for many individuals who have never had that type of disruption before, and I think what we need to do collectively as physicians, as providers, is to make patients aware of publicly funded resources as well as not-for-profits that can assist people who don’t necessarily have the means to get medical care, including mental health support.
So, I would advise any woman who has a breast symptom or concern, or on the other side, if they have anxiety or depression whether or not it’s related to their breast condition, that they seek out the local department of public health wherever they are and find out what resources are available, if you have a breast symptom, for screening and for workup, and if you have mental health concerns, what the options are for getting plugged in with mental health support services. You can get counseling from a lot of different types of sources. There are free options, there are also many social workers who also provide therapy, and so you have to go to places where you may never have been.
And it’s our job to become increasingly aware of the resources available for patients in this very strange time in our world where people for whom social determinants of health was before just a catch phrase, but for whom now there has been such a profound change that their lives don’t look the way they used to, and they all of a sudden need to take advantage of resources that they previous thought were only for other kinds of people. And so helping people realize that this is not for “other types of people,” it’s for anyone who needs the assistance, and to be willing to speak with their physicians, their nurses, their social workers, the financial care counselors at their institution, but also to seek out the department of public health in their local resources, I would really encourage women to do that and see if there are ways which they can get help.
Jamie DePolo: Okay. Thank you. I just have one last question, I’ve read some things — and this is really anecdotal, it’s not a study — but people were saying that with COVID and with the more telehealth there’s now a lot more online counseling, and that seems more appealing to some people because they don’t have to go out, they don’t have to have somebody see them going in to a counselor’s office. Have you seen that where you are in your practice?
Dr. Lola Fayanju: I have not personally had someone say to me, “I prefer a telehealth appointment because it means no one knows that I’m going to see my psychiatrist,” but I can imagine that that would be something that is a benefit of telehealth.
You know, I want to offer a word of caution about telehealth. I think telehealth is here to stay, and I think the COVID-19 pandemic frankly accelerated a revolution that needed to happen within medicine in terms of making telehealth available for individuals who don’t need an in-person consultation. But one, telehealth is not perfect, there are things that do need in-person evaluation that we may not be able to correctly or completely assess without seeing someone in the same room; and two, we need to recognize that telehealth is going to be an incompletely and unequally deployed new technology. We’re going to find that some groups of people are systematically left behind in this telehealth revolution. They’re not going to get seen or they’re going to get seen imperfectly, or they’re going to put things off because they can’t get in. And so telehealth offers some real promise, and I’m really excited about telehealth, I think it’s a really good option, but I also have to say, I have concerns about how we will make sure it reaches everyone, and we’ll need to support local community organizations in order to develop the infrastructure to allow everyone to benefit from this potential boon.
Jamie DePolo: All right. Dr. Fayanju, thank you so much for your insights. I really appreciate your time.
Dr. Lola Fayanju: Thank you for having me. It’s been a pleasure.