[00:00:00] Adam Walker: This episode of The Real Pink Podcast was brought to you by AstraZeneca. AstraZeneca is leading a revolution in oncology with the ambition to provide cures for cancer in every form following the science to understand cancer in all its complexities, to discover, develop, and deliver life changing medicines to patients. Learn more at astrazeneca-us.com.
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.
We need to talk about Black breast health. Black women are about 40% more likely to die of breast cancer than white women, diagnosed at younger ages, at later stages and with more aggressive breast cancers leading to poorer outcomes. This monthly podcast series, Stand for H.E.R. – Uniting to Create a Health Equity Revolution, opens a national dialogue that engages community members and organizations, health care providers, research scientists, and opinion and policy leaders to discuss recommendations and actionable strategies to advance breast health equity in the Black community.
Black women are less likely to participate in clinical trials than white women. We are going to discuss why that is and why it’s so important for Black women to participate in clinical trials with Sheila Marie Johnson. We have welcomed her as a guest on the podcast before and are excited to have her back. Sheila, Welcome to the show!
[00:01:39] Sheila Marie Johnson: Thank you. Thank you for inviting me and I’m glad to be here.
[00:01:42] Adam Walker: Well, I appreciate you taking the time to be with us. Let’s start with your diagnosis. For our listeners that might not be familiar with your story, can you tell us about your diagnosis and the emotional impact of receiving that news?
[00:01:55] Sheila Marie Johnson: Well, first, like I said, thank you for inviting me to speak about black breast cancer and clinical trials. My story first started, I would say, 2001. That’s when my mom was diagnosed with breast cancer and three years later she passed away from metastatic breast cancer. In August of 2004, five years later, I was diagnosed with metastatic breast cancer.
In 2009, I was at the DU military, so I want to say it’s Veterans Day tomorrow. So happy Veterans Day to all my fellow military service members. I love you all. And I was diagnosed while I was active duty military. I was, you know, minding my business like everybody else. I was 43 years old. And I felt a sneeze.
I was sitting at my desk and I’m like, man that’s really weird. And I it burned. So I’m like, man, is that my breast? And I had been getting mammograms since my mom had died. I think I was like 37 or 38 when I started getting mammograms and. I was doing my self birth exams, so I thought I was doing them the right way.
And I felt the sneeze. I sneeze and I called my doctor. I was like, something weird is going on because when I sneeze, it burned. And I said, I think it’s my breast. So I went in and she ordered a mammogram and. You know, it was breast cancer. The radiologist, I can he was lieutenant colonel and he pulled me in and after the mammogram he looked, showed me my x-ray and he said, you see all this white stuff?
He said, that’s breast cancer. And after all the CT scans, biopsies and everything, I found out that, Weird feeling the burning I was feeling. It has spread to my liver and ribs and every time I sneezed it pressed on my ribs to cancer. So that’s when my. Story started and you know, the first thing, the most impact, the first thing I thought about was, oh my God, my mom died from this disease.
You know? Yeah. And, you know, I walked in, I was, you know, they sent me down to this cancer center. I didn’t know what a port was. I didn’t know what her two positive, negative. Inflammatory breast can, I didn’t know what, I didn’t even know there were different types of breast cancer. And she said mines were her two positive, ER positive, which mean that it fed off my estrogen.
So it was just a series of events getting my ovaries removed. They told me I, it was like the, and a purpose to get a mammogram. I, not a mammogram, but a Mastectomy because once you’re stage four it’s already in your bloodstream. So it’s kinda, but I did end up through the years, get a mastectomy, got re reconstruction, and December 2nd it’ll be 13 years. I’m still here.
[00:04:57] Adam Walker: And so, just, just so our listeners are clear, so I understand, so you’re saying you are stage four MBC, right? Ok. All right.
[00:05:04] Sheila Marie Johnson: And I’ve never been early stage, they call it de Nobo, so I’ve never had the… it just hit me, stage four. I didn’t know stage four meant metastatic. I didn’t even know black women could get breast cancer. The only person I knew was my mom, so I knew she got it. But you look at the commercials, back then, there were no black women on commercials that said, Okay, I got breast cancer or metastatic breast cancer. I didn’t even know the two words coincided together. What meant the same thing?
[00:05:33] Adam Walker: You know, we’ve talked about the racial inequities a lot on this show. That’s why we’re doing this stand for. But the marketing piece of it honestly never occurred to me until you just said that because you said, like you said, I didn’t even know black women could get breast cancer. Cause they’re not in the TV commercials. And as soon as you said that, like this light bulb went up like you’re com you’re right.
Like that’s terrible. I mean, I hopefully it’s gotten better now. I don’t, I haven’t seen a lot of TV commercials lately, but, you know, like, that’s tragic. Okay. Well thank, yeah, thank you for pointing that out. That’s really helpful to, to understand. So you enrolled in a clinical trial as a part of your treatment plan. Can you tell us about the clinical trial and how you first found out about it?
[00:06:15] Sheila Marie Johnson: Well, I had always my doctor has really presented me with clinical trials. I think one time before the clinical trial that I entered in 2018. Before that, she had introduced me to a trial, but I didn’t qualify for it because the lesions or they were unmeasurable.
So it was, you know, If it wouldn’t have did me any good because, which is a good thing because they were unmeasurable, so they was like, no, know, you can’t enroll in this trial. You don’t qualify. So in July of 2018, I had progression. On my fourth rib and my doctor was like, I want to introduce you to this clinical trial.
I think it’s good for you. And we just talked about it and I looked at, I was like, well, , am I going to be a Guinea pig? Cause I want to know and she said no. And she sat there and she explained it to me. She explained all the different things and she said, no, Sheila, that is not, no, that can’t. So I entered the trial in July of 2018, and for three years, five months actually then it was called DS 8201 A, but now it’s in HER-2, which is a FDA approved drug that is saving many lives, and that is keeping women like myself alive longer.
And it’s actually being used on other cancers besides breast cancer. So in November of 2021, I had to get off of it cause I got covid pneumonia and one of the side effects of the trial was lung disease. So the COVID affected my lungs and my doctor was like, You got to come off because we can’t have two things trying to attack your lungs.
Cause the side effects. So I got off of it. And what she did was she put me on medicines just to make sure that my lungs cleared. And three months ago I got back on in her too. So I always say basically I saved my own life. Wow. Cause I’m back on the same drug that was on the clinical trial.
[00:08:35] Adam Walker: Wow. That’s, you’re definitely the first person I’ve ever talked to that’s gone from clinical trial to like final FDA approved drug. It’s the same drug. That’s pretty fantastic. So then I assume, The results of the clinical trial were, they were working pretty well. And, and I I assume it had a positive impact on your treatment. Is that… is that safe to say?
[00:08:57] Sheila Marie Johnson: I Stayed stable for what, three and a half years and stable in the metastatic breast cancer world is outstanding. Cause that’s what we want to do. And that’s the thing with stable. You know, in the metastatic world, that’s what we want to hear. And for three years, five months, that’s where I was. So now I get a scan next month to make sure that the medicine is working. So I went through all the side effects, all, everything. And yeah, it worked.
[00:09:31] Adam Walker: Wow, that’s really profoundly encouraging and I like that you saved your own life by being a part of the clinical trial. That’s kinda amazing.
So, alright, so we know that black women are less likely to enroll in clinical trials than white women. Can you share what you think some of the contributed reasons might be? And let’s talk about that for a minute.
[00:09:52] Sheila Marie Johnson: I think that we need to get over that black women are less likely to enroll in clinical trials. Why? Why? Because we’re not asked. You know, that’s the bottom line. We need to get over that. Okay. Black women don’t want to participate because of the diff like Henrietta Lacks medical mistress and stuff. I know that has a contributing factor, but now black women are saying that, Hey, research is really saving lives.
But all we want to do is be asked that. Now, let me decide on whether I’m going to go through, okay, I don’t trust you, or maybe there’s a word or, but give me the opportunity just to say yes or no. And what I keep hearing, the onus is always on the patient. Why is the patient. Why do I have to come to my doctor to say, Hey, I heard about this clinical trial.
Why can’t the doctor come to me and say, Hey, I got this clinical trial. I’m going to let you decide online whether you want to participate in this clinical trial. So I think we need to continue to have these open conversations with our doctors to say, Hey, I heard about this trial. I want to get on it. I heard about clinical trials.
And I always say that we should have videos. When I was diagnosed, I sat in this room for like four or five hours just watching videos, and you get this blue bag from the hospital and it gives you all this information about cancer and support groups and different things like that. Why not show a video on clinical trials?
So it’s in the back of my mind that, hey, Five years ago. Oh, I remember about a clinical trial. Let me ask my doctor about that. Yeah. And tell people about the myths of, no, it wasn’t a last resort for me. And you can always get off a trial. You don’t like it. Get off of it if you don’t like it. So these are the things that we need to keep talking about with patients and with oncologists and with doctors to say, Hey, just ask me.
Yeah. And quit putting the onus on the patient all the time.
[00:12:02] Adam Walker: So you said two things there that I thought that are really interesting. The first is, it never occurred to me that if you, if the trial’s not going well, you just go, just don’t do it anymore like that. I’ve never, I’ve had tons of these conversations that never even occurred to me.
That makes perfect. It’s so logical, but somehow we don’t think about it. The other thing you said, I think what’s really thoughtful, which is that we know that, that black women participate less in clinical trials, but to your. The assumption is that they’re choosing not to, that might not actually be the correct assumption. It may be that they’re asked a lot less and that’s, that’s so important. So I’m really glad that you shared that. I appreciate that.
[00:12:37] Sheila Marie Johnson: Yes. There. I don’t know if you read about the Become Project. It was done by the I think the Breast Cancer Alliance and with Stephanie Walker, and they, if there were 424 participants, And there were 102 black women that participated, and one of the things were about clinical trials, why you don’t enroll in clinical trials.
92% of the 102 black women that took the survey stated they were interested in trials. 86% said they were never asked. So why? You know, so we need to talk about that and further that conversation. Cause this, this study was presented at ASCO this year. And we need to continue those type of conversations as to why, and maybe we can get the statistics up of why black women don’t participate in clinical trials.
[00:13:34] Adam Walker: Yeah, that’s great. That’s are great questions to ask. So, So I’m curious, related to clinical trials they certainly do make some people hesitant. Some people are hesitant to enroll in them. What would you say to someone that’s hesitant to enroll in a clinical trial?
[00:13:51] Sheila Marie Johnson: I would say to talk with your doctor. And the reason why I enrolled, because I trusted my doctor. I’m like, she is not going to lead me in the wrong path. And if this is not for me, she is not going to recommend it. And that’s the way 13 years we’ve been doing. And that’s the way I feel, and I feel that if you do not have that relationship with your doctor, where you can go in and ask your doctor anything, I could email my doctor right now, at least an hour and a half, should I get an answer back on a phone call?
[00:14:23] Adam Walker: Man, that’s a good doctor right there.
[00:14:25] Sheila Marie Johnson: Or her nurse is calling because they know that if I’m emailing you or calling you, something’s wrong. And I only call them, you know, and even if I’m calling you every 15, you know, that’s kind of, stretching it. But, you know, you still should be able to answer my questions, but we just have to continue.
If you are hesitant, you know, I want women, black women to say, Hey, well, Sheila tried it. I seen on Komen’s podcast that… yeah, she tried it. You know, and as I said before, if you don’t like the trial, you can always get off of it. If you have questions to it… ask for, Hey, I need a patient advocate that’s been through a trial that can help me along the way that can hold my hand.
Ask for it. Ask your hospital for or say, you know, my clinical trial coordinator was the best. I had like three or four, and I could call him with any question, Hey, I got a question about this or that, but you also need to consider transportation. You need to consider whether it is small children involved, you need to consider whether the person has to work.
You know, all those things. I tell doctors, oncologists nurses all the time. You have to know your patient too. So I’m allow you in this clinical trial, but are you going to be able to get back and forth through treatment? That’s right. Cause when I was on the trial, I was there between nine to maybe 12, 13 hours every three weeks.
And I did that for three and a half years. Wow. That’s a lot. And as, yes, I was getting six week scans. I had to get my eyes checked every two months. I had to wait after the trial to get my heart checked. Couldn’t leave because I had to know the results before I left. Hm. So they literally would give me a bed in the research center. Yeah. And I would watch TV until my results came back. So it’s a lot to it, but it’s so, so, so worth it.
[00:16:23] Adam Walker: Yeah. And so important. So I know one of your answers to this question, but I’m going to ask it anyway and then I’m curious what else you’ll say. So we know the importance of doctors related to clinical trials. What could doctors do differently to include more black women in their clinical trials? Other than just asking them.
[00:16:40] Sheila Marie Johnson: Make sure that patients are more educated about clinical trials. Make sure that, like you said just ask okay, well what are your hesitations about clinical trials? I think clinical trials should be bought up in the first initial your first initial diagnosis, because it’s a standard of care, even if it’s not for metastatic.
Breast cancer, or even if it’s for okay, I need to see whether help as far as like. Something to do with your physical or are you e something with eating or something like that. It doesn’t always have to be like a medical or like a treatment. Clinical trials. There are many different clinical trials.
So just make sure that, you know, doctors understand that it’s not that black women don’t want to participate. Is because we need people like you to introduce us to clinical trials. Even if it’s a two minute conversation.
[00:17:40] Adam Walker: Introduce and answer questions about that.
[00:17:42] Sheila Marie Johnson: And answer questions about it, you know, and you know, and cut that mistrust off. If you cut that mistrust off at the beginning, that’s it. , your patient is going to trust you for the rest of their treatment when they’re off of it, or. They’re going to trust you because you’ve cut that line of distrust right there. And when my doctor, and when my doctor told me, she said, Sheila, anytime you feel my bed set, my manner is bad.
You tell me. She told me that her first couple of visits. That’s great. That’s a doctor. Yeah. I be telling like, okay, now I ain’t understand that , but you know, we have to continue to keep the lines of communication because we doctors, we don’t know nothing. We only know what we know. Yep, that’s right. That’s it.
We don’t know nothing else. So we’re depending on you to give us the best, whether we’re black, white, Latina, whatever, to give you us the best information that you can with the best of your ability. That’s right. Because all we have is you. That’s right. All we have is you to trust.
[00:18:51] Adam Walker: That’s good. That’s good advice. Well, Sheila, last question. Where can our listeners go to find out more about clinical trials?
[00:19:00] Sheila Marie Johnson: You can call the helpline at one eight seven seven GO-KOMEN., Go Komen! Or visit https clinical trials.komen.org. I love you, Komen family.
[00:19:15] Adam Walker: Sheila, you are the best. Thank you for again, sharing your story with us and for challenging preconceived notions and just for encouraging us today.
[00:19:26] Sheila Marie Johnson: Thank you Adam, and I truly appreciate it. And to the listeners, please, please, please ask your doctors about clinical trials. They’re important, even if you don’t want to get on it, you don’t have to, but just know their information about them. That’s it. That’s right. That’s all I’m asking you today is just inquiry about them.
[00:19:43] Adam Walker: That’s right. They’re a valid option and it’s worth looking into. That’s right.
[00:19:46] Sheila Marie Johnson: And research saves lives.
[00:19:48] Adam Walker: It does. It does. Like the research that you did. That’s right.
[00:19:51] Sheila Marie Johnson: Yes.
[00:19:53] Adam Walker: And join us as we Stand for H.E.R. to drive a Health Equity Revolution where we’ll create a world without inequities where Black people have the same chances of surviving breast cancer as anyone else. To learn more about Stand for H.E.R. and advancing breast health equity at Susan G. Komen, please visit https://komen.org/StandForHER.
This episode of The Real Pink Podcast was brought to you by AstraZeneca. AstraZeneca is leading a revolution in oncology with the ambition to provide cures for cancer in every form following the science to understand cancer in all its complexities, to discover, develop, and deliver life-changing medicines to patients. Learn firstname.lastname@example.org.
Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit RealPink.com. 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 @AJWalker or on my blog, AdamJWalker.com.