Making Metastatic Breast Cancer Clinical Trials More Inclusive, with Stephanie Walker, RN

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At the 2022 ASCO Annual Meeting, registered nurse, breast cancer survivor, and patient advocate Stephanie Walker presented the results of the BECOME Research Project, which looked at Black patient participation in metastatic breast cancer clinical trials. In this podcast, Ms. Walker shares her story with Dr. Manali Patel, a medical oncologist and Assistant Professor of Medicine at Stanford University, as well as the Cancer.Net Associate Editor for Health Equity. They discuss Ms. Walker’s experience with metastatic breast cancer, how she became involved with patient advocacy and research, and the work being done within the oncology community to make cancer clinical trials more equitable and inclusive. View disclosures for Ms. Walker and Dr. Patel at Cancer.Net. Dr. Manali Patel: Hello, I'm Manali Patel. I'm a thoracic lung cancer doctor at Stanford University and the VA in Palo Alto. And I'm a researcher that's focused on trying to improve and overcome health disparities and really trying to achieve health equity. I'm also the Cancer.Net Associate Editor for Health Equity. And today it's my great pleasure to talk with Ms. Stephanie Walker. Stephanie is a registered nurse, a survivor of metastatic breast cancer, and a leading patient advocate. She's the lead author of the BECOME Research Project on increasing Black patient participation in metastatic breast cancer clinical trials, which she presented beautifully at the 2022 ASCO Annual Meeting. Stephanie, we can't thank you enough for talking with us today. I'm going to first start off by saying that I am from North Carolina. And Stephanie, I read so much about you over the past few years and noticed that you are living in Tarboro, North Carolina. Is that correct? Stephanie Walker: That is correct. I currently live there. We moved here originally in 2012, but this is my, I think, third or even fourth time living in North Carolina, moving back and forth between Thomasville and Durham and now permanently in Tarboro. Dr. Manali Patel: Well, I love that we share our Tar Heel roots. I am a Tar Heel born, Tar Heel bred. When I die, I'm a Tar Heel dead. So I can't thank you enough for sharing those roots and then also for sharing your story with us today. You were first diagnosed with metastatic breast cancer in 2015. Can you tell us a little bit about your experience with that diagnosis and what it was like to be diagnosed? Stephanie Walker: Well, actually the diagnosis in 2015 was my first diagnosis. I was not an early stager that had a recurrence, so I guess I could say breast cancer was never on my radar regarding family history. I thought maybe kidney disease or hypertension or those kind of things, but never breast cancer. So to say my life derailed at that time, it had. And I don't know if I ever grieved when I was told that I had metastatic breast cancer, I took it and just ran with it. I did not really fall off until many years later when I had to stop working. At the time I was diagnosed, I was working as an on-call nurse for a hospice company. So I was working 7 days on, 7 days off. So on my 7 days on is when I received a call and during my nap time. But yeah, it was very hard. But like I said, I didn't think bad of it. When I did finally look it up and see that the life expectancy was like 36 months, that kind of kicks your butt into gear to do things. But I didn't do anything. I just continued to work. [laughter] I didn't stop working. So yeah, it went through the basic standard of care treatment of Adriamycin, Cytoxan, and Taxol. But I didn't get through my whole series of Taxol due to neuropathy and increased falls. So I stopped at 9 out of 12. Dr. Manali Patel: Still 9 out of 12, it's difficult. And that's a difficult therapy and difficult regimen. You talked about how it derailed your life. And I know I've had the pleasure of reading your story online. I think what's also really interesting is that you had a role as a hospice nurse and over 40 years as a hospice nurse. Stephanie Walker: No, most of my years of nursing was critical care. The last 14 years were hospice care, palliative life care. But, yeah, I just rolled with that. Even taking care of patients that had the same diagnosis kind of brought-- seeing death and dying every day. But then to see somebody with metastatic breast cancer dying was really hard. Dr. Manali Patel: Yeah. And I'm sure that your experience at nursing on the other side and the flip side, and then when you became a patient, is quite different and maybe challenging in and of its own. Stephanie Walker: A lot of people expected or said that. I think I got left out of a lot of things that could have helped my journey in the beginning, like a patient navigation and that kind of thing was kind of not given to me. And I guess it was because being a nurse. But I had no experience other than pediatric oncology. I knew what those children went through. And actually, it actually did help going through my treatment because I would remember this one little girl that was going through chemo, and she got up one morning and her pigtails started falling out, and then she wanted to get on the IV pole and go to the playroom. And I'm thinking to myself, if she can do it-- and I called her by name, if she can do it, what the hell am I complaining about? So it's like, just get up and go to the playroom. [laughter] So I kept going back to that, you know what I mean? These kids that are innocent and have not even started to live their life going through this, and they never complained. So being an old lady at 56, being diagnosed, hell, who was I to complain about it? So just pick your hair up and keep going. [laughter] Dr. Manali Patel: That's right. Get your IV pole and go to the playroom. Stephanie Walker: That's right. Dr. Manali Patel: It's interesting that you mentioned that being from the nursing field and from the medical field kind of excluded you from a lot of what we hope other people receive, which is good education about their diagnosis. And like you mentioned, a patient navigator. Do you think that being a Black woman in any way, shape, or form shaped your experience with cancer, and if so, how? Stephanie Walker: It didn't in the beginning. Like I said, from 2015 up until 2018 when I found myself suddenly without a job or insurance, I had no idea. I didn't know anybody else with metastatic breast cancer. I didn't know what was out there. I guess I didn't have a need that was not met. I had insurance that was paying the bills. I had a husband that helped care for me, 2 adult children that looked in on me, a job that I didn't consider a job, it was a calling, and I had no needs at that time that weren't met. So I didn't have the desire or the need to look outside my little tiny world, I guess, until I found myself in 2018. In 2017, we moved late in the year back to North Carolina from Louisiana and started a new job as a hospice nurse, same kind of a schedule and was out shopping with my husband one day, and I kept saying, "I'm really short of breath." And I said, "All this weight I've gained since treatment, it's horrible. I'm just fat and can't breathe." And he just kind of laughed at me and said, “No, you're fine, you’re fine." Well, then I started experiencing chest pain and I said, "I think I need to go to the ER." And for me to say I need to go to the ER, then my husband kicked it into gear and thinking, "Oh gosh, maybe so." Went to the ER, thought I was having an MI [myocardial infarction, a heart attack], ruled that out, and sat back in the lobby for a couple of hours and then they came and got me again and, in a hurry, said that they'd seen that I had a blood clot in my left lung. So it's like, great, here I am now with the PE [pumonary embolism] and having to be on blood thinners. And then I had a TIA [transient ischemic attack, sometimes called a ministroke] on an oral blood thinner. So obviously that failed me. So that's when I had to stop work. And then that's when I went into a deep depression. And people say it's like just because you have to stop work, you get depressed and it's like, yeah, I mean, I had always told myself in the very beginning of my diagnosis, I'm going to work up until the very end. And then not to have that-- and I felt like if I don't do anything, I'm going to die quicker. So I did not know what I didn't know until I found myself trying to figure out how I was going to live, pay bills, eat, pay for treatment. You know, when you don't have that comfort, then I started looking for ways to help provide until I could figure out a plan. And that's when I found the world of metastatic breast cancer and advocacy that I went to my first metastatic breast cancer conference: Living Beyond Breast Cancer, actually in April of 2018. And I don't remember the weekend because I was just in awe that all these women around me had metastatic breast cancer and were thriving. And more than that is I've seen a whole lot of Black people that were like me. So I wanted to know more, learn more, do more. So that's when my whole-- I tell people that was my coming out party of metastatic breast cancer. So I did research trying to find funding and I spent 8 hours a day, 5 days a week looking for that since I didn't have a job, I didn’t know what else to do. And luckily, I found enough resources to stop the bridge until I got my first disability check. Nobody told me there was a 5-month waiting period, right? And I found the insurance, thank you to my cancer center, provided ways for me to continue treatment because I made an appointment to tell them I'm going to stop treatment. I can't afford to pay you. But they came through, and I'm thankful for that. So that's when the world of advocacy opened up. It was in 2018, about 3 years after my diagnosis. Dr. Manali Patel: I love that you think and were part of the calling and your identity of being a nurse, and then of course as a hospice nurse, especially, but losing that identity, but then channeling and refocusing and helping other people and really advocating has given me a lot of inspiration as a daughter of a mother that also faced similar challenges. Stephanie Walker: I'm so sorry. Dr. Manali Patel: I really want to thank you for all that you've done on behalf of all women with breast cancer, and especially for Black and Brown community members who have breast cancer. We've read your story and know about you and so are really just thankful for you and the research that you've been doing, especially the research that you presented this past summer at our ASCO Annual Meeting 2022, where you presented the results of the BECOME Research Project. I was hoping that you could give us some background on the study and why you wanted to do research in this particular area? Stephanie Walker: First and foremost, I'm not a researcher. I don't like research, [laughter] and I didn't plan on doing research. So with that being out of the way, I am a nurse. I am a critical care nurse. I am a hospice nurse. I am an advocate. Researcher, not. So actually, it was done because there was another metastatic breast cancer huge advocate, Marina Kaplan, who is no longer with us. I met her at the San Antonio Breast Cancer Symposium in 2019, and she had done a poster presentation regarding patient-centered outcomes as well. And she noticed that the Black respondents to her survey was less than optimal. She only had like 8% return. And she said, "Stephanie, I don't understand, why so low?" And it was like, "Marina, I don't know. I did your survey, so I can't tell you." So she said, "There's got to be a reason." And she said, "Let's delve into trying to find out why." And she said, "How about this? You do the survey. You gear it to the Black population, men and women with metastatic breast cancer, and I'll help you." And I said, "You're definitely going to have to help me. I'm not a researcher. I don't do statistics either. I found that I didn't need that when calculating medication doses." Anyway, so with that being said, she said, "I'll do it. I'll do that part for you." And I thought, me being simplistic, how hard can it be to do a survey, right? You have questions, you put them on a piece of paper, you print them off, you make 100 million copies, and you send them out to people or you ask people in one of your Facebook groups or something, and you just write down the answers. That is not how it's done in the research world. So, unfortunately, before we could get it off the ground, she passed away. And actually, she was very sick at the conference. So she passed away actually the following January-- February. So I kind of put it on the shelf in the back of my mind because I just assumed that was just between me and her. Nobody else knew. She had told somebody else, and they came back to me. It was actually someone at Living Beyond Breast Cancer, Janine. She came back to me. She said, "Hey, do you remember when Marina talked to you about X, Y, Z?" And it's like, "Here it comes." And I said, "Yeah, sure." And I told her I would get it done. I told her I would do it. I told her I would do it. And people said, "She's gone. You don't have to do it." And it's like, "My word is my word." So she introduced me to a group at the Metastatic Breast Cancer Alliance, the information task force, and they looked at it and thought it was a great idea and picked it up as one of their projects. And there I was starting my research problem with being the project lead of people that I didn't know, with an idea that I didn't know how it was going to be done. So I am thankful for a bunch of people, man, I am telling you. So it got done. It was partnered with a marketing and strategic group, CB White, and they actually got it off the ground to which way it needed to go. I didn't realize it cost a lot of money either. [laughter] It started off, we did literature search. We found some ASCO literature that would support our survey. Then we did interviews with the patients, the clinicians, researchers, payers, and they asked the questions -- we formulated questions because we had a subcommittee and someone else did the interviews. And after those were all done, that's how the survey was formed. And the survey went out-- it basically went out via social media. And the subcommittee, it was a bunch of patients and industry people and from the Alliance that pushed us out and was supportive of it and really believed in it. And my goal was to get 500 respondents. I wanted 250 Black and 250 of everybody else. I didn't care who, but I say I didn't reach my mark, and it was a little disappointing. I only had like 420-some people that responded. But everybody said that was really good because I didn't offer them anything. I didn't offer you money. I didn't offer you a gift card. I didn't offer you a cup of coffee. But it was done, and I'm proud of the responses. It was all done -- this whole project was done during the pandemic. And you have to realize that a lot of people in the subcommittee that I had that actually worked really hard, I had never met. So this is a group of people that you only know a face like on Zoom or something. So the results were some of them were -- I kind of expected that. But the biggest shocker for me was -- the number one thing that we're focusing on is a general ask, right? No one asked us, as Black men and women with metastatic breast cancer, talked to us about clinical trials. Dr. Manali Patel: I think that that finding, can you briefly tell us the numbers for the readers? I've read through and also saw the presentation kind of what you found in terms of that being the biggest and then some of the other outcomes that you looked at. Stephanie Walker: Well, some of the other outcomes were like, other than the 4 that we're focusing on, is to better inform, you know what I mean? We need Black patients to know about and to get the information to make informed decisions about clinical trials. That's first. Then the second one was to inspire trust. We all know about all the stuff in the past and the distrust of the Black community with health care providers. So we need to build that, and it has to start in a community in which the person lives. And we also found that more Black than non-Black, when questioned, would try a clinical trial only if they were asked to, but they weren't. So to ensure access -- there were barriers, obviously, to people wanting to participate in a clinical trial. And some of those were the travel time, the difficulty in finding the trials, worrying about the financial burden. And a lot were like, if I go to another facility, is my insurance going to cover it? So that's a big thing. And the final was to address the concerns, legitimate concerns. We need the health care provider to communicate in a clear language that we understand, and also understand the reasons that motivate us to participate in a clinical trial. So with those 4 things, we came up with some actions to do. But those were the 4 big ones that I found out that needed to be addressed. Because when doing this, I didn't do it just to be doing it. I wanted to do it to find out what the barriers were and then to come up with actionable steps. And as a physician or anybody, there's all those surveys people want you to do, and then they stop there. They don't go on. And I'm one of these people, like, don't waste my time. Let's do something that's actionable that we can act upon or help other people to act upon. Dr. Manali Patel: I think those of us in the health equity space, right, are not surprised that a lot of what you found does really play in terms of what the health care provider and what the health system can do. The health system can do things to engender trust rather than putting the blame on the patient, saying that patients don't enroll in clinical trials. Well, maybe we aren't asking patients equitably if they're enrolling. And we need to take a hard look at our own selves and our own practices and think about what we can do similar to a checklist, right? When a patient comes in, how can we make this part of standard of care to make sure that everybody gets asked, and we've got all these fancy decision support tools and our electronic health record that turn up poppers of, "Did you ask the patient about this?" But making this part of the rubric of what we do, I think was really nicely highlighted in your study and your findings. Stephanie Walker: Yeah. And I truly agree. Rubric metric, however you want to say it, people are like, "Well, how are you going to get them to change it?" Like, first of all, with education, and second of all, man, if I could figure out a way to attach a dollar sign to that rubric or that metric, it would be great.  Dr. Manali Patel: I think for our readers, you and I know and really want to get the messaging out for equitable and accessible clinical trials. Can you explain from your perspective why it's so important to be inclusive and to have clinical trials that are accessible and equitable for all patients with cancer? Stephanie Walker: Well, the statistics speak for themselves. Only like 6% of participants in a clinical trial for a metastatic breast cancer are, like 6%. But it's important that the clinical trials are inclusive for everybody, all people, because you want the medications to work for quote-unquote "all people.” And we find that, speaking from just my experience and what I know and have heard, that there are treatments out there that don't actually work on Black people. And one of the big general ones is one of the blood pressure meds we have found recently that does not work or do not work very well with people of color. So we have to include everybody in these clinical trials to be able to have effective treatments to work for everybody, no matter where they are, where they live, who their doctor is, what hospital they go to. All people need to be included. And we find that 80% of the patients are treated in community cancer centers, and those are the patients that are usually left out just due to the fact they're not associated with a teaching medical institution/NCI facility. Dr. Manali Patel: I think this is so important and really appreciate you highlighting that important fact is that making sure that our treatments are effective and feasibly can be provided to all patients in our quest for achieving health equity. What work is currently being done to make clinical trials more inclusive? Stephanie Walker: Everybody is working on that. Even Stephanie is working on that. With a new subcommittee, a little branch out from BECOME, we found that -- we had just spoken of education. And so we came up with an idea of an actionable step. How do we do that, and how do we educate the health care providers regarding all of these facts that we found? And we are going to have a symposium. We came up with a symposium, a 1-day event. And we are going to attach it to the San Antonio Breast Cancer Symposium. We're actually going to have it the day before the symposium starts and hopefully, that will attract health care providers who we're targeting this to come and just listen to see what the patient has to say. We have it broken into 3 sections. The first section is about the health care provider, how to communicate with your patients. What does it look like on the other side? And then the other is broken down into the pharmacy or pharma industry section. What are they doing to help include all people in clinical trials? And a lot of them have jumped on that bandwagon to be inclusive. But really, what are you working on? I want to know. So that's the second session. And the third session is about the patient and the caregiver. From the patient's point of view, how they did with clinical trials, and also a clinical navigator, what their role is to help patients find out about the trials and be that support person and as well the caregiver. A lot of people forget the caregiver goes through this as well. And to get the view of what the caregiver had, what they had, what they needed, what they didn't receive, to find out that so we can provide those things for them, hopefully. But yeah, that's what we're doing now. We're still in the planning phase. Dr. Manali Patel: That's amazing. I love the action-orientedness of really moving to the next step, taking the findings that you found, moving towards really action, and bringing all of the partners together. I know that all the industry partners and really holding people accountable for what they are planning on doing. I love that. What actually are you doing and coming up with a plan for moving forward? Stephanie Walker: Yeah, you have to start holding people accountable, get rid of the biases. And I've been blessed that I had not experienced any kind of biases in my care until the pandemic. And that was when I wanted to get my cancer treatment at a community center closer to home because it was a simple treatment of fulvestrant injection, and I wanted to get it closer to home. And we all agreed. We found a physician that would accept me closer to home. And it was going great until I started having complications, and he totally blew me off, actually. He told me that I needed psychiatric help, but he didn't know I was already getting it. But anyway, after contacting several patients that see this physician, they experienced the same thing. So that's the first time I had experienced anything based on my race and who I am. And that happens when a physician walks into a patient's room, sometimes that's what they see. They don't see Stephanie, they see a Black woman, and they start thinking in their head ticking off things like, "Oh, she's Black. She doesn't understand. She doesn't even know what a clinical trial is. She's going to be non-compliant. She's going to quit. And then she's going to become this angry Black woman that I'm going to have to deal with." So all of that before it is, "Hi, my name is." So, yeah. That experience made me want to do a little bit more to try to get rid of the biases that patients experience. Dr. Manali Patel: Yeah, I think what you're doing to advocating, not only us clinicians, I'm so sorry that you have to experience that. Unfortunately, we've heard and know that it's sometimes the norm of what people experience or the systemic biases that then play into the role with implicit biases and then, unfortunately, lead to delays in care and also mistreatment or even lack of evidence-based treatment for people just based off of their skin color or from what community they may be from, or even how much income they may have or education level. I think what you said about what the work that you're doing and educating us clinicians, number one, first and foremost, what we can do with the health care system and looking at our own practices and our own policies and trying to reduce and remove some of the biases that are baked into the system. But then also what you're doing on the ground with other patients and advocating for patients. I want to close with 1 last question, and you've highlighted some of it, but if you were to give advice to people with cancer who are faced with needing to advocate for themselves, be it for care like you described, or for clinical trials, what advice would you give them? Stephanie Walker: It's almost like having to put burden on the patient to learn. But you do. You have to become Ph.D.-certified with your own illness. You got to go out there and know what you got and know what you need, what the standard of care is, and that is the truth. When you get that diagnosis, I believe you should, first of all, take somebody with you with a notepad to be able to write down things. When you hear the word “cancer,” you don't hear nothing after that. And you're only going to probably absorb a fourth of what you're told at the office. So have somebody to write down what the doctor says, suggestions, and research your plan of care. Find out what the standard of care is. I tell people, don't go to Dr. Google, but you're going to have to Google some things. But try to find vetted sites, reputable sites to do that. And there's lots of organizations out there that you can get the information from. And I don't want to say use Facebook, but believe it or not, there are great groups on Facebook that offer support, information, suggestions, "Hey, I'm getting ready to start this treatment. What happened to you? Or what do you think?" So always arm yourself with questions when you go in. Ask the questions. Don't be afraid to ask. If that doesn't work, of course, with the pandemic, I would have people that want to go with me, and I couldn't go, but I could sit out in the lobby on my cell phone and listen in and encourage them to ask this question or ask the doctor a question. Of course, that has to be given with permission from the physician as well. But arm yourself with as much information as you can. And if you are finding that you're not getting that feeling of, “This doctor has my best interest,” seek a second opinion, third opinion, a fourth opinion. Don't let a doctor railroad you into doing something that you don't understand. If you don't understand, speak up. I tell people all the time, they may know about cancer, but you know about yourself, so hold firm to that. I've told several doctors. I've fired several. So, I mean, they're out there. And I tell people all the time, don't be scared. Be comfortable and always know there's somebody out there. You're not alone to talk to. And being depressed or down sometimes, it's normal. You go there, but don't live there. If you find yourself living there, reach out for help. Because I'm one that thought that nurses don't reach out for help, but I finally did. So don't be afraid to ask for help and know that there's somebody out there with you. Call me. I'm available. Dr. Manali Patel: Ms. Walker, I can't thank you enough for sharing your story with us and telling us more about your experiences and the work that you've been doing-- the important work you've been doing in this area. It was really wonderful to have you, and I hope that we get to meet in person at some point. Stephanie Walker: I really thank you for the opportunity to share and hopefully the information that we both have provided, people will get it and understand it, and it will help somebody, because the work you done while you were at ASCO was amazing, too. So read that. [laughter] So I really do, and I really appreciate the opportunity. Dr. Manali Patel: We are very grateful. And thank you for Cancer.Net, for hopefully being that source of trust and source of information for all of our patients. ASCO: Thank you, Ms. Walker and Dr. Patel. You can find more stories from people with cancer at the Cancer.Net Blog, at www.cancer.net/blog. 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