[00:00:00] Adam Walker: From Susan G. Komen, this is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
[00:00:17] How do you navigate breast cancer when you know the healthcare system is stacked against you? And how, as a healthcare provider, can you best support marginalized people going through the experience of breast cancer? Let’s find out! In this episode, Jasmine Samuel, a TNBC survivor and black nurse, shares how her experience of suboptimal care in Jackson, Mississippi, encouraged her to actively seek out a better care experience from MD Anderson in Houston, Texas.
[00:00:46] We’ll also hear from Komen Scholar, Dr. Mariana Chavez McGregor, a breast medical oncologist and professor at the Breast Medical Oncology Department. of MD Anderson Cancer Center, who will discuss how she provides compassionate care and focuses research on improving outcomes for underserved patients.
[00:01:07] It’s great to have you both here, Jasmine and Dr. Chavez McGregor. Welcome to the show.
[00:01:12] Jasmine Samuel: Thank you very much for having
[00:01:14] Adam Walker: me. Thank you. Well, I’m excited about this conversation. Before we dive in fully, Dr. Chavez McGregor, if you wouldn’t mind, can you please give us some insight into what underserved populations can be affected by breast health disparities and what those disparities might look like?
[00:01:31] Dr. Chavez MacGregor: Absolutely. We know that breast cancer is the most common cancer in women. We know that with treatment, patients can do very well. And actually, throughout the last decades, we have improved significantly survival for patients with breast cancer. What has been demonstrated very clearly is that this survival benefit, it’s not distributed equally in the population.
[00:01:57] And it’s being well described that particularly Black women with breast cancer Less longer, or to say a better way, have lower survival rates from breast cancer. I mean, they’re benefiting less from these therapeutic advances. So there’s a lot of work trying to understand why certain groups are not receiving the full benefit, and of course, access to care.
[00:02:21] can be a big issue. And we know that’s not only necessarily groups of black patients, but in general, marginalized populations that are not receiving timely treatment, that are not being diagnosed on time, that are being diagnosed with more advanced stages. So there are a number of things that can help us understand this potential disparity.
[00:02:44] Of course we have also look into the biology. I mean, are the tumors of different groups of patients differently different? So, so we see it, we recognize it, and now I think we need to find ways to mitigate that disparity.
[00:03:03] Adam Walker: Yeah, absolutely. And that’s why we’re having this conversation, right? To bring light to these things.
[00:03:07] So, so Jasmine I alluded to this in the intro, that you did not receive the care you were looking for in Jackson, Mississippi, you went to MD Anderson. So I wonder, you know, can you share that story with us about your care and treatment while you were in Jackson, Mississippi, and then how that compared with your treatment at MD Anderson?
[00:03:25] Jasmine Samuel: Absolutely. So my care experience at home of course, breast cancer is not something that any of us want, but from the beginning, I tried to be optimistic about the treatment plan the doctors, everything that was going to be associated with it. With the whole plan, it was not until I received the diagnosis and then my thought process from the nursing standpoint, with me being a nurse, I understand the core, the basis of how planning should go for a patient after diagnosis.
[00:03:59] Then, you know, you see your providers, there’s treatment plan developed and so on and so forth. It was not until after the diagnosis came and there was such a gap that I became suspicious. There was no follow up. I was having to communicate with the doctor more than I should have, especially being someone with a new diagnosis.
[00:04:21] Two weeks passed we were headed into week three, and I had not received anything further. Nothing but the diagnosis itself. No follow up scheduling. No imaging. And I contacted the doctor and the doctor was
completely oblivious to the fact that no further appointments have been scheduled. That made me fearful because if I can’t trust you with the basic things like scheduling appointments and making sure that there is a continuity of care.
[00:04:55] Then I’m apprehensive for anything else going forward. So once that happened, I went ahead and made the call right then and there just to get on the books with MD Anderson. And it was a very fluid process from the beginning. Within hours, I put in the request for contact and I mean, maybe two hours passed and someone was already on the line scheduling, you know, taking into account.
[00:05:21] All things associated not just the treatment plan, but they were where I felt like they were worried about me. So that’s what spawned everything. And no, I tried to give the care teams here at home an opportunity. It was just one thing after another, but it was that initial gap in what should have been a very fluid process.
[00:05:45] It just made me so apprehensive as a patient and as a nurse because I did not, the trust was lost from the beginning. Once the trust is gone, it’s very hard to pull that back from the patient standpoint and from the nurse’s standpoint. So that’s where I started. And I just went from there, but I had a wonderful experience at MD Anderson, but that’s what began it all for me.
[00:06:08] Adam Walker: And Jasmine, I’m curious, like making that jump from one sort of system to, I mean, it’s a little bit scary, right? I would assume. So like, like what, I mean what gave you the strength to do that? Right. I mean, it was just, was it just the angst or was it just, was it your background as a nurse or what was it?
[00:06:26] Jasmine Samuel: The anxiousness and knowing especially once I got the diagnosis, of course, that it was cancer. Once I found out that it was triple negative and, you know, the worst thing that you can really do, I tell my patients day to day, Google can be your worst enemy when you are dealing with cancer. Something medical and a diagnosis because you can really go down a rabbit hole of sorts, but just in general, I realized that triple negative was very aggressive and that the most important step in taking care of it was time.
[00:06:57] And so I knew that I did not have a lot of time to waste again. I have small Children. So that also encouraged me and my father’s experience at MD Anderson. So I had a lot of factors that encouraged me. Yes, I was absolutely
afraid. My mind went to, I think, to every dark place that it could go. From the start, but M.
[00:07:17] D. Anderson kind of helped if you could put it in a picturesque type of format that someone holding on to a rope that is like slipping, that is what I felt at the beginning, but M. D. Anderson kind of worked to pull me back the other way and restore the hope and the trust that every patient should have, because if you can’t trust your medical team, It makes for a terrible experience.
[00:07:41] Adam Walker: That’s right. That’s right. Well, Dr. Chavez McGregor so to you, you know, people going through breast cancer, they have a lot to deal with. How can providers improve that care experience, particularly for underserved and marginalized populations?
[00:07:54] Dr. Chavez MacGregor: Yeah, well, first of all, Jasmine, I think it’s wonderful. I feel so pleased that you had that courage and that agency to advocate for yourself and so glad that you had, you know, good experience with us here at Anderson.
[00:08:07] Thanks, Ben. I think the reality is that there’s extraordinary teams and doctors, you know, everywhere. And for audiences, we’re talking about, you know, this specific institution that happens to be the one that I work at. Doesn’t mean that it’s the only place, right? There’s extraordinary teams everywhere in the country.
[00:08:27] But I think the key is what are the things that matter, you know for us and how we can improve them. I think communication is key. The diagnosis and the treatment planning of breast cancer takes time. It’s complicated. And it’s okay to invest some time in that, but I think for us as providers, communication is key.
[00:08:53] Give those updates to give that reassurance to the patient. So you as patient don’t feel that like somebody dropped the ball, but that there is work being done. I often tell my patients that are very anxious to start treatment. that we have one chance of doing this right and that I need to have all the tools, all the information to make the right choice.
[00:09:15] But I think the communication there really matters. To your question, Adam, I think there are some things that patients and doctors, we have to work together and there’s a lot of responsibility in the medical side. Trust is very important. There’s a lot of misinformation and I think the system sometimes does not facilitate, you know, trust and communication.
[00:09:41] And there’s a lot of reasons why patients and marginalized populations don’t trust the healthcare system. It’s complicated. It’s difficult to navigate in general. It can be, you know, barrier language issues, financial issues that that, that are big barriers. And I think a big thing that we can do to recognize that, right?
[00:10:05] Big centers and some community centers, of course, we have you know, resources to provide additional information to provide financial resources, social workers to facilitate travel accommodations for patients to make them feel welcome to tell them, you know, that they’re not alone. So there are a number of navigation programs that can help our patients not fall through, you know, the cracks.
[00:10:35] Because imagine another patient going through the same thing that Jasmine went through, that didn’t have this knowledge, that didn’t, you know, see this red flag. Then suddenly it can be weeks, and weeks can turn into months before a treatment plan gets developed. And while in most instances, Breast cancer, it’s not an emergency in order to treatment timely treatment.
[00:11:01] It is important. It’s been clearly documented part of my research that has been founded by Susan G Komen has demonstrated how delays in the initiation of chemotherapy are associated with adverse outcomes. So, so we have time to get the information, but we don’t have time. All the time, right? We still need to be efficient to integrate the multidisciplinary teams to create unique, personalized treatment plans.
[00:11:31] Because the risk is you rush into doing something and you don’t do the best thing, right? You also don’t want to do that. And that’s very challenging for patients because they don’t know, right? How do you know for sure that what a physician is recommending you? Yes, I can take you to surgery tomorrow. Is that always the right thing?
[00:11:55] Or do you should understand your options better? So, so I think communication, education are key and we healthcare providers need to facilitate the understanding of the process to our patients. I think it’s also a lot of recognition about the implicit biases that we as providers can have. And we recognizing that possibility, I think it’s very important and receiving formal training, and it’s very common now in my institution, we have mandatory to undergo implicit bias training.
[00:12:34] We need to put our biases aside to provide all the patients the best care and understand their needs circumstances. And I think this is something
that it’s more and more commonly being taught because before that, nobody taught us that.
[00:12:52] Adam Walker: Yeah. No, that’s great. That’s a great point. And Jasmine, I mean, I’m curious for you to talk more like what was done differently?
[00:12:59] Or can you give us some sort of some specific things that were different MD Anderson versus your other location?
[00:13:06] Jasmine Samuel: Absolutely. Just to condense it all, I think. It was the whole patient experience that I received at MD Anderson versus. Here at home the piece that Dr. McGregor pointed out is the understanding and accepting what a patient is verbalizing to you.
[00:13:27] The piece that’s missing here in Mississippi is the navigation piece. When I initiated my contact to MD Anderson, it was from the beginning about all of me, not just my cancer diagnosis. And that made a big difference. The navigator from the beginning, she asked, did I have children? He recognized the fact that I was from out of state.
[00:13:51] She questioned about finances and travel options. Lodging made a world of difference from the beginning. The first thing that was laid out there was how can I, how can that navigator at MD Anderson reduced some of my costs coming to Texas. It’s expensive to rent cars. It’s expensive to travel.
[00:14:13] So. MD Anderson highlighted all of those factors to make my experience easier because dealing with the diagnosis itself was difficult enough. Here at home, it felt more like if I could compare it to anything, it was like going to a factory. The end goal is to produce a product. So it was like a one size fits all type of approach the mindset that I received from both the medical oncologist and the surgical oncologist were, we didn’t really discuss any options.
[00:14:47] It was, here is the plan, this is what we do for this, and it’s just that. Even when I returned after completing all the surgical things, there was a difference in opinion of whether or not I should have gone through radiation. I trusted the What I was given from MD Anderson, that based on the fact that I achieved pathological complete response before I ever had surgery the margins were clear after the surgery.
[00:15:14] No radiation was recommended based on my personal circumstance. So the difference is that there was a whole patient experience given at MD Anderson versus here at home. It’s a one size fits all. The mindsets are very closed. And the moment I, especially as a black female and as someone who is clinically trained, the moment that I have a difference of opinion, or I let you know that I don’t agree with what has been laid out in that one size fits all landscape.
[00:15:45] I am then, I feel that I’m labeled, it’s like the angry black woman, the know it all, and it was absolutely not that. But as the patient, you have to take into account what is significant for this particular patient. And I can hear everything around me, so when I go to MD Anderson, You know, I did one of my treatments at MD Anderson because it was close to a surgery.
[00:16:07] There were things as simple as a door that closes that provided that secluded type of experience versus here at home, you know, it’s just like a curtain pulled between myself and another patient. So not only can I see the differences, I can also hear the differences. So if I explain that I’m experiencing some pain as a side effect of one of the medications that I’m receiving, it’s received differently.
[00:16:34] So I felt like my feelings as a patient were not unique. The doctors here did not care as much as they should. And their mindset is very close to your opinion as the patient. It’s either you agree with this and we go along with it, or you just go do your own thing and let the other people guide you.
[00:16:56] We have to do better in helping patients navigate things. So you have to take into account. The low literacy levels in the state in general, before I became a nurse, I was a special education teacher. So I have a unique skillset and reading people and meeting them where they are. All of that is not taken into account.
[00:17:16] And for that reason, that’s the piece that I saw that was missing that I feel like can make a world of difference. So I’m in the baby stages of trying to develop a community based, Navigation source or that costs patients nothing, but they’re looking for someone to help guide the experience. My oncology center did not have a navigator.
[00:17:40] There was not a social worker there. The nurses are having to carry it all and wear all of those hats. And that’s a lot. I’ve worked with patients before, and that’s just a lot to carry. So time is something that we don’t have. And when
you couple all of the. Different factors. We have the highest mortality rate for breast cancer in the nation.
[00:17:58] Yet, there’s not a lot of emphasis being placed on how we can fix it. We recognize that it’s an issue, but what are we doing about it?
[00:18:05] Adam Walker: Yeah. And Dr. Chavez McGregor, you know, from your perspective, what does MD Anderson and providers like yourself, like, what do you do differently?
[00:18:14] Dr. Chavez MacGregor: So I think the big comprehensive cancer centers, I’m talking about my center, but as I said, many other across the nation, there’s a lot of work that we have, you know, the fortune that we have specialized care, meaning I am a medical oncologist, but I do only one thing for the last 15 years, all my career.
[00:18:38] The only thing that I’ve done is to treat patients with breast cancer. So, so that gives me a very narrow window. What I do, it’s very deep. So I have a lot of experience, me and my colleagues, right, that work at these big centers in seeing all the nuances of the disease, of having had experiences with a lot of the new medication, just because it’s the one thing I have to know.
[00:19:03] So we have a lot of depth in what we do. We try to focus our culture in the needs of the patients, and we have the fortune to have more resources, right? Pharmacists, nurse practitioners an education center, translation services for patients that don’t speak English. So, so we have bigger teams that maybe other.
[00:19:30] centers cannot have. I think one of the challenges of the healthcare system in general doesn’t matter where we are. It’s we as providers have every time less and less time to see patients like my days in clinic. or every day by having more and more patients. And there’s so many hours in the day, right?
[00:19:51] So that means that I either have to spend less time with my patient, or have everybody wait for me, or, for example, I make the choice. That’s me. I don’t like to type on the computer while I’m in front of a patient. I don’t like it. Yeah, that means that my documentation, my order entry, all of that has to be done after hours in other days because I don’t want to lose that contact.
[00:20:15] So there are problems with the healthcare system that are pulling us apart from that. That, you know, we try to maintain. So, so there are other things
that Comprehensive Cancer centers have, and it’s the possibility for us to engage more than other centers in research. So that brings the unquote option.
[00:20:40] discussion that jasmine was bringing it up, right? It’s important to have options. It’s important to educate our patients about yes, chemotherapy, syndicated and there’s different types of chemo. I think this is the best one because of that, right? Investing in that education, so patients understand the why, I think it’s key, but also giving them the option to enroll in research studies.
[00:21:07] Those are always voluntary, not all the patients are eligible, but it’s a choice. And it’s a choice that can give patients access to new therapy. And. to give them access to contribute to the progress in the field, that it’s a very altruistic thing, that it’s very important for some patients. So, so there’s of course a lot of research that gets done in the community, but in general, comprehensive cancer centers may have bigger teams and a more diverse clinical trial portfolio that, that gives more resources to our patients.
[00:21:46] Adam Walker: And Dr. Chavez Migueri, and you mentioned research can you talk about any research you’re exploring that will help improve outcomes for some of these populations during a breast cancer treatment?
[00:21:56] Dr. Chavez MacGregor: Yeah, of course. So, so there’s groups of extraordinary research throughout the country doing research focused on access and on disparities at the biological level, at the cancer care delivery level.
[00:22:09] Some of the research that I have been involved in focuses on exploring the impact of breast cancer. The Affordable Care Act in the outcomes of patients with breast cancer. So there were some states that elected to expand Medicaid, meaning more patients had access to some medical coverage. So what me and my team have done through a number of studies is to determine what was the impact in the states that, you know, decided to expand Medicaid.
[00:22:45] In terms of the breast cancer outcomes compared to states where no Medicaid expansion was done and even in those states that expanded Medicaid, what happened before and after and what we have found that patients with metastatic breast cancer are living longer. in the states that they expanded Medicaid compared before and after, that the time to initial surgery, it’s decreased and that the time to chemotherapy, it’s decreased.
[00:23:11] But not only that gap that I talked at the beginning in terms of the disparity between whites and blacks, in the states that expanded Medicaid, the gap, it’s getting smaller.
[00:23:23] Adam Walker: So
[00:23:24] Dr. Chavez MacGregor: that tells you how important it is. Access to care. There was a big cancer conference, just, you know, last week, the asco annual meeting, and I was discussing with some of my colleagues some very interesting results that we’re presenting.
[00:23:41] One that I found very interesting was there’s some states now we’re talking about policy, right? Things that can happen at the state level. There are some states that have mandate. For medical leave, meaning some states that allow citizens to take time off work to take care of their medical problems without losing their job.
[00:24:04] People don’t have time to go to the doctor, right? They don’t have time to go get that mammogram or to get that lung check. So they compare the proportion, stage one cancers and stage four, right? The super early or the advanced in the states. that had this policy allowing individuals to seek medical care compared to those that didn’t.
[00:24:30] And the results are not going to surprise you, but those states that allow for medical leave more after the implementation of the policy, have more early stage diagnosis and less advanced risk counseling. Again, there are things that we can do at the community level, at the institutional level, but there are things that we can do at a policy level, the state level to give access.
[00:24:55] Of care to people to give them time to take care of their of their healthcare needs, maybe things that we need to think about lowering the high deductibles because you may have insurance that makes you privileged. You may have time to go, but you may not have money to pay for your high deductible.
[00:25:17] So we’re talking about the reality here. As you can see, I’m very passionate about this because then there are patients out there that cannot get the great treatments that we have. Now, do we have to improve treatments? Yes, we have. But what about we start. giving the treatments that we have today in a timely manner to everyb
[00:25:38] Adam Walker: Yeah. I love that. Love that. And so Jasmine what advice would you give to anyone that’s not happy with their current standard of care and treatment for their breast cancer diagnosis?
[00:25:51] Jasmine Samuel: If I could say it in short, I would say the same thing that Dr. Chavez McGregor pointed out. You have to be courageous.
[00:26:01] You have to, your care team won’t know anything unless you tell them. So communication is key. You have to communicate with your care providers. Being secretly dissatisfied or having questions and being afraid to ask. You have to not allow your fear. Being labeled or even, you know, we have a mindset sometime of, well, that may be a silly question.
[00:26:31] I won’t ask it. Or maybe they will get to that at some point. You have to communicate from the very start. And if you ever have a question be courageous enough to get that second opinion, speak other options. And when you don’t know. Look for the resources around you. My community is unique in that we don’t have a whole lot of resources for a lot of things.
[00:26:57] So, if someone is dissatisfied with their care, seek other options. Don’t let fear be your driver. Fear is going to drive you in the wrong direction. And if you have a question, look for whatever resource. If that means a call to MD Anderson, you may not have the money to travel to MD Anderson. But MD Anderson is a perfect source.
[00:27:20] There are a lot, tons of foundations that I found out about at the Advocacy Summit. That can help drive if nothing else, your knowledge can be a driver in helping you advocate for your own care, be your own advocate. That is so very important. And if you know someone who is having a subpar experience, help them advocate, help them get in touch with someone who can.
[00:27:48] Give them that empowerment to advocate for themselves because that’s what it takes. It takes for you to be your own advocate or else you will kind of find yourself folded into the one size fits all type of care approach and that doesn’t work for anything. It doesn’t work in education. It definitely doesn’t work in health care.
[00:28:04] Every person is unique and you have to be the driver for making your care experience unique. And one that’s as pleasant as it can possibly be for what the situation is.
[00:28:16] Adam Walker: That’s right. And Dr. Chavez McGregor same question to you.
[00:28:20] Dr. Chavez MacGregor: Yeah, I guess the one thing that I was gonna add to what Jasmine said, I mean, I cannot agree more, right?
[00:28:26] Like, like communication and being open and being frank, it’s key. I will say that to the patients, to our audience, to also sometimes take a second chance on us. I really see this as a team effort. Of course there’s a lot that we drive. But if you don’t hear from me, if you didn’t get that prescription, Hey, call me right back and said, Jesus, you forgot.
[00:28:53] And I can say, I’m sorry. So I think like trusting in each other, creating that sense of team. I am inspired every day by the woman that I treat and the men, because I also take care of them. some gentlemen with breast cancer, and I feel very honored about that and I learned from them and I love the most satisfying part of my job.
[00:29:15] It’s this team that we’re able to be. Our goal is the same. And I think the moment that our goals align and that patients know And believe to their core that everybody here wants the same thing for them. We all, like, navigate things better and asking for help. I don’t know if my patient doesn’t have money to pay for the parking, you know, here.
[00:29:42] I need to know that. So we only know what we know. So communication, like removing stigma, it’s super important. Financial toxicity, it’s real, but we don’t talk about it. I tell my patients that their hair is going to fall and that they may have nausea. I’m not telling them that their bank account might end up being, you know, like cleaned after a cancer diagnosis.
[00:30:05] Those things need to be discussed because maybe they’re options. Our social workers are aware of so many, you know, resources that can really help. And then maybe we as providers can also, you know, like make modifications on things. I have a lot of patients that cannot come get treatment here and then.
[00:30:26] Treatment it’s given at home and I coordinate from here and then they just come every three months. But communication it’s key, of course, always in the setting of positive feedback and creating a team environment but patients are their best advocates and I applaud that, that effort.
[00:30:48] And I love how the networks of patients are built, the support that patient to patient give to each other in support groups. It’s also amazing because also the needs of patients are very different.
[00:31:07] Adam Walker: Well we want to wrap up there Dr. Chavez McGregor. Thank you for the research for the work that you’re doing with patients and jasmine Thank you for sharing your story I know that’s not easy and we really appreciate you letting us be a part of your world for This brief moment in time.
[00:31:22] Jasmine Samuel: Absolutely I hope my experience can encourage someone to be strong for themselves if not for yourself or someone else we can’t always You Position ourselves and make our situation the best, but for me, if I can make someone else’s care experience better going forward by making these things, bringing, having the uncomfortable conversations.
[00:31:43] That is my ultimate goal. I wholeheartedly agree. We have to make it a team experience. And once. the team is together. We can all drive in that same car in the same direction towards the same goal.
[00:31:54] Adam Walker: That’s it. That’s it. That’s the goal. And listeners, if you need breast health resources and culturally responsive support, please call the Komen Breast Care Helpline at 1 877 465 6636 4 1 8, 7 7 Go Komen or email helpline@komen.org.
[00:32:21] Thanks for listening to Real Pink, a weekly podcast by Susan g Komen. For more episodes, visit real pink.Komen.org. And for more on breast cancer, visit Komen.org. Make sure to check out at Susan g Komen on social media. I’m your host, Adam. You can find me on Twitter at AJ Walker or on my blog adam j walker.com.