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Shellie: Welcome to See We Do Have A Voice. I'm your host, Shelly Turner. Being diagnosed with breast cancer is where the discussion starts. Breast cancer doesn't care where you live. It doesn't care who you know, how healthy you are, how many initials you have behind your name, or what color your skin is. This podcast is a platform that will create discussion in order to help you find your story, your decisions, your information, and your understanding. Now let's get into it. Hi, this is Shelly and welcome back to the show. And today we have a very special guest who is also a friend. And I know you guys are saying, oh, you got so many friends, but I do. We're going to be talking to Frederick from Stand Up To Cancer. Tell us what you do and who you are to Stand Up To Cancer. Frederick: Shelley, thank you so much. My name is Frederick Johnson, and I am not only one of the many friends of Shelley, I am the Advocacy and Strategic Collaborations Manager at Stand Up To Cancer. So what that means is I foster, create, sustain, and build relationships with patient advocates and advocacy organizations around the country to help further Stand Up To Cancer's mission, to share about our resources, our campaigns. And I've been there for a little over 14 years. And it was one of the highlights of that 14 years was I got to meet you. Shellie: Yes, it was. It's a highlight of my life because Frederick, you are such an asset to my life, an asset. You are so knowledgeable about what you do. And even in my personal life, I've called you to get advice for people that I, you know, women that are going through breast cancer with newly diagnosis for your direction. And you have been nothing but stellar in your advice, in direction and instruction, guiding and leading. So I am really excited that you're here today to tell us a little bit more about what Stand Up To Cancer is doing now, to continue the research, the support, the information, everything you got, Frederick. Frederick: Shelly, thank you so much. Well, one thing I wanted to mention is we do have a campaign that is launching the first week of December. It's an annual campaign. It's always the first week in December. It's called Cancer Screen So just to tell you guys a little bit about what that is, Cancer Screen Week is a national effort to increase awareness of cancer screening and the potentially life-saving benefits of cancer prevention and early detection. So again, Cancer Screen Week is this year, December 4th through 8th, and it's a perfect time for anyone who needs to schedule a screening find out how they can get screened and there's a website which is cancerscreenweek.org. There people can see what the current recommended screening guidelines are, they can find out where can I get screened, you know, what if I don't have insurance, you know, various different resources. So I wanted to definitely, you know, touch on that and as I know you're a breast cancer survivor of course like mammograms, breast cancer screening is a big component of that and people can find out more details about that on the website as well. Shellie: And you make a very serious point when you talk about insurance. Yes. Because insurance is a lot of reasons that women don't go to the doctor. Right. They may have felt a lump. SPEAKER_00: Yes. Shellie: They may be going through it and maybe those that want to keep it a secret. But insurance is a big deal of why a lot of women don't go and get screened, don't go get the mammogram. So the information that you're just giving us is very important because you're using the word free. And that's got to be important to a lot of women to know that It's not a secret. When you go or when you feel a lump or there's something that's just not in your normal examination of yourself, even if you do do it or if you don't do it, like for me, all three of the times, I felt the lump. You know your body and you know that lump wasn't there before, that lump doesn't belong here, so let's go to the doctor. And you go to the doctor if you have insurance. Well, I don't have insurance. And that stops a lot of women from going. And that's where a lot of lives are lost. Frederick: It's a major factor of why people don't get screened. And then also, even when you break that down in terms of demographics, I know that you also too want to educate around a lot as well to like disproportionately how things affect black women that need to get screened or have a breast cancer diagnosis. So one of those factors definitely is lack of insurance along with just limited access to care and economic inequality, you know. So these are things that really are disproportionately impacting particular communities. On the website cancerscreenweek.org, you can find out about different types of coverage. You can find out about getting a free or low-cost breast screening if you have coverage to the Affordable Care Act or what we call Obamacare. There's also information about how you can get a free screening that way. And if you need more information about Medicare coverage, they have information on that as well, because you're so right. A lot of times people will think, well, I don't have insurance, or I don't have a certain type of insurance, or I live where I live. We know like a zip code even could say so much about somebody's care, somebody's access to care. Shellie: It usually does. I wanted to do this podcast for information. Yeah. Because information is either life or death. SPEAKER_00: Yes. Shellie: Either you have the information that will give you life or you don't go get the information and it'll cause you to, you know, you will, you'll die. And I hate to always talk about, you know, death, breast cancer, but it's what it is. And information is key to the healing. Information is key to your next move. Women, in my opinion, are created to do great things. Some do great things and some get cancer. So for the ones of us who have gotten cancer that are thriving, it is up to us to continue to give the information to those who haven't yet learned to thrive. but you're born to thrive. Cancer, and that's why the podcast is called See, We Do Have a Voice because cancer can no longer be the loudest voice in the room. So we have to take back the voice and we have to start speaking louder than cancer and tell cancer, shut up. You shut up because you're not going to ruin my life. You're not my life. I might have gotten a diagnosis that would love to take my life, but it doesn't belong to you. So the information that you are giving from Stand Up To Cancer and the work that Stand Up To Cancer has done in the community prior, it's key. And it's so important that women know that these organizations exist for us. And you may not have heard, oh, well, they're doing a rectal cancer. Well, I don't have rectal cancer. I have breast cancer. Don't not call. Frederick: Don't not call. Don't not call. And it's so important. I'm so glad that you're using this platform and having this forum because I feel like this is how the conversation has shifted. I would say this generation and maybe the last generation. Now we're having like survivorship conversations that we didn't used to have because when cancer was that you have six months to live. Remember it was just like that. People are living now. and surviving, and so now it's really a survivorship conversation of how do I go from survivor to thriver? Shellie: I mean, if you woke up this morning, then you're thriving. And if you can wake up in the same bed that you lied down the night before, you're thriving. So don't discount yourself or who you are or what's really inside of you where you're not even giving yourself a fair opportunity because the information is out there. Yes, you've been diagnosed with breast cancer. And like I always say, it's like you've gotten an invitation to a party that you don't have to RSVP for because you're the guest, you're the host. The door is open and somebody's telling you right this way, let's get a mammogram. Let's get a biopsy. Well, your cancer is staged this. Well, let's talk about the BRCA. a lot of people still don't know what that is. And that floors me, because if you're in treatment and your doctor hasn't once said to you about the BRCA, well, the BRCA is to see if you have the cancer gene. It's to see if you have that gene in your DNA. And it's really for your family. If you're a mother and you have daughters, then how can you not know? But I've talked to some survivors and some people in treatment that don't know. Frederick: And sadly, and we hear this time and time again, people don't know things merely because their primary care physician never mentioned it. And so for a variety of different reasons, right, we can get into that. And insurance is one of them. Insurance is one of them because the bracket is not cheap. Exactly. And sometimes there's what they call, you know, implicit biases. You know, people think like, oh, you know, we know we have all those different types of factors. Yes. But I think that's why it's so important, like having a forum where you're sharing about resources where people can know, like, call that organization, they exist. And there are even things like there are organizations, it could be breast cancer nonprofits that already have questions you can take to your doctor if you get a diagnosis, questions, what you need to know about screening. They have all these things already laid out because people don't know what to say when they go, or you remember after you're pulling out of the parking lot that you just paid $20 to be able to park there to go to your appointment. And you can't go back and you're like, God, I forgot to ask this. And you can't call because it's a call center. I mean, it's just so much. And you're the patient, and you're the person not feeling well. So you're going through all of that stuff when you're just trying to get help. Shellie: And hopefully the information your doctor just gave you is helpful. It is helpful. But if you didn't hear it, and you don't remember it, and he's telling you something that really pertains to what he told you five minutes ago, but five minutes ago you didn't hear him. So what is he talking about? Because I didn't even hear what he said. So it's really important, like we talk about on the show, take somebody with you. Include somebody with you and let it be a loved one, hopefully, and they're gonna listen and they're gonna hear because you're gonna be sitting there still like a deer in headlights, like, why am I here? Frederick: Bring someone, I found if you can bring someone because that can be the type of person that'll ask questions on your behalf or take notes on your behalf because you might be emotional, you might be in shock. You're still in devastation. You're devastated. Yeah, you're devastated. Exactly, or they're throwing around so many terms and vernacular and all kinds of stuff. You need that other person. Sometimes you just get tired. Somebody else that can intervene and be in that space. You mentioned mammograms Can I talk a little bit about the screening guidelines around mammograms? Absolutely. Information is key, Frederick. So just for anybody listening, so everyone can find this again at cancerscreenweek.org, but specifically with breast cancer. So when they go on the site, there's all kinds of guidelines for different cancers, for lung cancer, for colorectal cancer, which is the cancer that impacted me. We can talk about that screening too if you want to talk about that story. But there's different cancers, so people will learn about the different screening guidelines. In terms of breast cancer, say invasive female breast cancer incidence rates have been increasing by about 0.5% per year, this is according to the American Cancer Society, since the mid-2000s. So they're saying that regular screening is the most reliable way to find out when it's smaller and might be easier to treat, right? They're saying from the five-year survival rate is 99% when breast cancer is diagnosed at the local stage. So what they recommend is if you are 30 years or older, they recommend a once per year is recommended by your doctor MRI and mammogram if you're considered high risk. If you're 40 to 44 years old, they consider that average risk and that's a recommendation of a once per year mammogram. If you're 45 to 54 and they consider that also average risk, that's also a recommended once per year mammogram. And then if you're 55 or older, they recommend a once every two year continual annual screening. And again, though, if you are at high risk, which means you have a personal history or a strong family history of breast cancer, a genetic mutation, like you mentioned, known to increase the risk, sometimes even like I know people that might have ovarian cancer in their family, you know, any of those things might increase the risk, right? and those that have had high dose radiation therapy to the chest before age 30. So those are people that even if you're a younger age, they're recommending work with your doctor to get a screening. So that's just like a highlight of some of the guidelines, but people can get more information about that. But even just that kind of information, people know like, am I too young? Am I too old? When should I start? What should I ask my doctor? These are the type of resources people need so they can go to the doctor at least feeling empowered. Shellie: And what you just said is key. When you go to the doctor, because a lot of people don't go to the doctor. And you're speaking about specifically younger women. They don't think it affects them. Right. So, you know, they don't go to the doctor that much anyway. And, you know, what you just said is something that should be handed out on a flyer. It should be on a billboard because a lot of women just don't think, oh, it's not me. I don't have breast cancer. It's not me. It doesn't affect them. And the craziest thing to think is that it doesn't affect you. because I'll bet all the money you know somebody because that is what breast cancer is doing to the communities right now. There is breast cancer and women are knowing more and more. A friend of mine just called me yesterday and said, you know, I'm with so-and-so and I'm getting my hair done and she knows you. SPEAKER_02: I'm like, Shellie: Who is she? And she gave me her name. I was like, oh yeah, I know her. And then it dawned on me, she had breast cancer. So it's like, you kind of forget, but my first diagnosis was 98. The second one was 2010. And the third one was 2020. But along that period, I've lost three sisters. And you know, I have my younger sister, she's also a survivor. So it's like, I never knew until my doctor found out, you know, my family history, that there was such thing called a cancer gene. Never heard of that. And he's like, well, you need to take the test. I was so irritated. And I'll be honest, I was very irritated because when I went to take the test, she was so nonchalant about it. So I take the test and I have a doctor's appointment. He says, well, did you get the results? I said, I'm not going back down there. He said, well, will you give me permission to get them? I said, yeah, she can give them to you. So he called her, got on the phone. I was like, yeah, he has the permission to get up. And then he says to me, says, well, it's positive. Okay, well, that didn't take a rock of science because I've lost three sisters. My great grandmother had a mastectomy. My great grandmother died of cancer. My mother's mother, my grandmother died of cancer. My grandmother died of cancer. So what's the mystery here? But for women are saying, well, cancer doesn't run in my family. SPEAKER_00: Yeah. Shellie: I'm not getting it. And then you find out, oh, wow, you've got this new diagnosis of breast cancer, but where'd it come from? Nobody in my family has it. Frederick: Or, and I think this is so important you brought this up, it's the importance of why we need to know our family history. And that's, again, going to the doctor. And that's where you started this conversation saying. And I think when you're younger, you don't care about that when you're younger. Yes, exactly. You don't need to, I don't need to go to the doctor. When you get a little older and you're like, oh yeah, Uncle Sam's so ditching me. pass away from that. But that's an old people disease. Young people don't get cancer. But when you get older and you start maybe having certain health things come up, then all of a sudden you're just kind of like, does high cholesterol run in our family? Shellie: High blood pressure, diabetes is like all these things. High blood pressure is certainly in your family. Frederick: That's what I'm saying. So it's so important to know the family history and just like personally for me, like I didn't even know when my father passed away from colorectal cancer, I think I was I think I was 38, something like that. And I never once thought, I didn't know anything about family history. I didn't know anything. I mean, I just thought, okay, that's what he died of. I had no idea. I didn't know about anybody else's health stuff in my family. Even though you know, when you go get an annual physical, there's always, do you have a history of this? What did one parent pass away from? What did the other parent? I didn't know how to answer any of those questions. until my father passed away. That was the only one I could confidently answer because that happened while I was alive. So when I turned 40 and I went to that annual physical and had even that to put on the form, my doctor said, oh, you have a family history. Like you have to get a screening, you have to have a colonoscopy. And I still in my mind thought, well, that's what happened to him. Shellie: Like, what does that have to do with me? But then you make the point that mothers, your mother had it, your grandmother had it, or they didn't have it. But women as a whole, when do we really want to go to the doctor? Okay, we have an OBGYN, we get a pap smear every now and then, and I'm 66, I'm not going to get a pap smear unless she called me, because I don't like it. Still today, that's not something I'd like to do. But then you have the younger generation, And women are getting cancer younger and younger. Because even on social media, sometimes I see these young girls that are in chemo, that just got diagnosed with stage three breast cancer. And it's like, how did you get to stage three? Not paying attention. I mean, it's so important that we as women, especially African-American women, that we pay attention to any change in our body. We do all the makeup, we do all the hair, we do this, we do that, but what about inside? Frederick: there needs to be amongst, I wanna say younger, and I'll just say maybe everybody under 40 or 35, let's say, like there really needs to be a shift in consciousness around that, about wellness in that way, because these same young people, they're at the gym, they're doing all sorts of things regularly and consistently, right? And this might just be, all you gotta do is just go once a year. or twice a year, just get that checkup. Do those things to be preventative, right? But I think it's kind of changing in the mindset again that it's kind of like, oh, that only happens to people that are older. Yeah, that's old. That's an old people thing. Shellie: But even with three mammograms never showed my cancer. So yeah, all three mammograms never show the cancer. And that's what the devastating thing was to my oncologist. Cause he was like, we just, it was like a July in 2010. It's like, we just did a mammogram. So where did this come from? I was like, I guess we're pulling rabbits out the hat because here it is. So, but it's not just about the mammogram. It's about if there are any changes in your body, in your breast, be conscious. Frederick: Be conscious. Talk to somebody. Say something to somebody. I learned through my own experience when I had my first real major health challenge. We've talked about that before. That was the thing that really taught me I can't minimize anything. I can't minimize anything, so anything, don't feel weird, don't feel bad, don't think you're being dramatic, don't think, you know, if you just find out you're fine and it's all good, that's good to know. It's good, but yeah, it's kind of having to train. I had to kind of teach myself that this is important. You know what I mean? Like to really kind of, if there's anything strange, if there's a weird pain, if there's a weird lump, if there's a strange anything. It doesn't belong there. It doesn't belong there. Like you're saying, it's like, be conscious, pay attention to your body, pay attention to your health, don't be afraid. And the other part of it I want to say too is, And I don't want to get down a rabbit hole about the health care system because that's like a whole other podcast series, right? But what I want to say is I think there is something and I can only just speak for the country we live in and how health care is here. Healthcare is supposed to be patient-centered. That's what it's supposed to be. It's supposed to be patient-centered, patient-focused. But I found, even we live in LA, we've got good healthcare, we've got great hospital systems around us, right? I still find there's a sense of feeling like I'm helping them run their business. Or something like if you know I'm almost incidental. Yeah, so the whole thing that's going on like I'm in like I'm basically They just got to get their administrative stuff done, and then there's me that's coming for an appointment women are scared of that That's what I was gonna say, and I think there's another thing that makes people neither not want to go to the doctor or Also, when you go in there, what's gonna happen? Right, when you go, there's a feeling of almost like, oh, I've got to accommodate them. And so I think the other thing that we have to teach ourselves and kind of remind ourselves maybe is that we're the most important person in the world. When we're there, we're the most important person in the room. And I know myself, when I felt like I wasn't getting the customer service from the doctor's office, I should be. I'm going to call it customer service. But you know what I'm saying? When I wasn't getting the kind of doctor-patient communication, and it could be from the nurse that's calling on the doctor's behalf, it could be from somebody calling about something, and they're acting like, you know, they squeezed you in. Yeah, they're doing you a favor. Right, right. And it's kind of like I've had to really just kind of come from a place of, you know, this is really actually about my life. Like this is about my life and this is about my health. So in that sense, I just think like that personal advocacy has to really, really be up front because I think that's another reason why. Because sometimes it can be really self-defeating because you're just like, you know what? I just don't want to go through all that. I don't want to have to be on hold for God knows how long. I don't want to have to go down there and then And the other thing, too, is I would say, if you have to change doctors, if you have to go someplace else because... I was just getting ready to say it. Yeah, because... You have to get a referral. If you have to get a referral... Then you're done. Because if you're even with a doctor that you feel like, this is what they chose for me, what I'm relegated to. Well, they know best because they're a doctor so and so. And you're sitting there and you don't feel 100% comfortable. You're not going to ask the questions you need to ask. No, because you're intimidated out of the whole point. You're intimidated. The whole point is over. You're not going to share everything you need to share. And I've even had to change doctors because I felt like I was being bum rushed. or I felt like I had to hurry up. I felt like they whizzed in and whizzed out. I felt almost like I had to tiptoe around, can I ask a question kind of thing. So it's just this mindset of you gotta center yourself in your care. Shellie: Yeah, but being diagnosed with breast cancer for women, you just said it, they get intimidated in the initial visit. And the doctor's asking you all these questions and you're like, Why are you asking me all those questions? Because I've been there. My first diagnosis, I got rid of two oncologists. Because the first one, after the chemo was done, she says, well, I'm just going to order another eight rounds more. I looked at her, I said, why would you do that to me? And I was through with her, because it's like, You're in the business for data. I'm not data material. SPEAKER_00: This is my life. Shellie: I have children. I have a life. And I just want to be with somebody that's going to care for me. And that's why I said my oncologist now is a rock star. He's wonderful. And doing this podcast, I've heard from other women that have irreplaceable relationships with their oncologist and it's so important because just like you said as a woman to go into a doctor's office and after you've been diagnosed with breast cancer and this is your first visit It just can't be laxadasia. It cannot be just a routine, like you pick a number and walk in next. Frederick: I can't be next. It cannot be. It can't be because it's gonna be to the patient's detriment because they're not disadvantaged. Disadvantaged because they're not gonna come back. Just like you said, no questions will be asked. Exactly, no questions will be asked. And then that could lead to people not taking their care seriously. And not coming back. not coming back, if they get a treatment plan, are they going to adhere to it? Do they feel self-defeated? So I just think who you choose to get your care from... It's almost like you have to do an interview. That's what I'm saying. And that's what I'm saying about, that's what I'm getting at is flipping around the mentality around that. It's almost like if we talk about a job interview, like a friend of mine, he's looking for a new job. He had the same job for like 18 years and recently got laid off. And so he's in this mindset of, I gotta get a job. I gotta get a job. I gotta get, you know, he has, they gave him a little severance package, but he's in this mindset. And I told him, I said, don't forget, you're also interviewing Exactly. Like this isn't about you just being at their feet to make them what the money they're trying to make. I said this is also too about your life. So you need to make sure that they're valuable to you as well. And I think as patients, we have to have that consciousness shift because I know many a time in the past, I would go to the doctor and just kind of feel like mute. I would feel intimidated. Shut you up. Exactly. And maybe I didn't have to feel that way. Maybe in those moments, I just kind of didn't realize, I didn't have the thinking that, wait a minute, These people, all of these people from the person at the front desk to the nurse practitioner, to the person that's putting you on the scale, to the person to the doctor, all of those people are there for you. Shellie: Yeah, but also, you know, they're there for you. But like I said, the focus is somewhat on women. African-American women and what they go through, and the racial oncologists, oncology deciding you're not the right color or you're not from the right background. Frederick: The biases. I've heard from a black breast cancer survivor, one of the many I've spoken to, and she talked about how She went to somebody in Atlanta that was a doctor that was referred to her. And he basically was just like, you're fine. You're okay. You're good. And she knew something was going on. She was just like, but something's going on. Something's not right. I'm not feeling something. I'm feeling something. And he just was not, like she had to go someplace else and then really get diagnosed. Shellie: What do you think that reason is? Well, they're still doing that to us. Frederick: Yeah, and so this this I think there's definitely these Implicit biases that happen and it's a lot of times too. They're even around like pain They're even around like they think like for some reason like oh like oh we can we withstand pain Better than other people or something or or they don't take our pain as seriously. Shellie: Yeah, we're complaining and We're complaining and we're just in here for, you know, we have an ulterior motive for coming in here. But breast cancer for young black women, older black women, it's still real. And like I said, sometimes even on my oncology visits, I feel a little guilty sometime because I still have to walk by the double doors, the chemo room and it's packed. In the waiting room, women are still sitting there with the scarves on and women that are in treatment have that look. It's an undeniable look. And I'm like, I'm in there all, you know, bubbly, glad to see my doctor. And it's just, it's a very sad that we celebrate breast cancer awareness month, October. But I still don't know what that's about because women are being diagnosed every single day. So other than that, all year round, those other 11 months, Women are not talking about breast cancer, unless it's them. There are organizations that are not talking about what's offering, what organization can you go to, still promoting the mammograms. One year you're fine, and the next year you have cancer. Your whole life has changed. You are never going to be that same person. So now, where do you go to get the help? Because in these 11 months, nobody's talking about breast cancer awareness, because that's October. And that's so weird to me, because it's like, what do you advise women? Are there places to go those 11 months that they can still get that October help, that October information? Frederick: know that breast cancer organizations, they're doing work year-round. It's just on the calendar that's a very busy calendar where, you know, March is all about colorectal cancer and, you know, September's all about childhood cancer awareness month and October's breast cancer, you know, so in a very busy calendar. of sometimes multiple cancers share the same month, you know? So there are wonderful, dedicated breast cancer organizations like Sisters Network, for instance, founded by Catherine Jackson. Shellie: And she was a guest on our show. She's amazing. Frederick: Yes. Shellie: She's amazing because she has hit the ground running. Frederick: So then she, I think, in my estimation, I think Sisters Network really was the first national breast cancer advocacy organization with a focus on black women. And she's kind of the original. Shellie: Oh yes, we had her on the show and she is, like I told her, she's a firecracker. And she's very, very serious about this movement. Frederick: She is. What I suggest is that when people get a diagnosis to just know that that as far as for advocacy, yes, there are organizations that exist that have materials that exist already that they can contact a lot of these organizations. I'll even say to cancer care is a great one. Cancer care is not cancer-specific, but cancer care is free, it's free services to a patient. They will even assign you a case manager, like a counselor, that will help you get resources, that will help you find- That's good information, that's good information. They will help you find, like, where's the support group in my community? And all of these organizations, by and large, already have materials. that somebody newly diagnosed can, even breastcancer.org, you can go on there. That organization, you have things you can download that it's like, what do I do after a diagnosis? Now that I'm being diagnosed, now what? What are my next steps? So I would say there's that. Also too, wherever they're getting diagnosed, like let's say if it's at a major cancer center, Most times the major cancer center, they will have someone on the staff there. It might be an oncology social worker. It might be someone that can really help them get to resources to help them to navigate. It might be a patient navigator that can help them navigate. Oftentimes the hospital or cancer center, they have support groups there themselves. What I found is that even when you're in the same institution, the right hand oftentimes isn't talking to the left hand. So you could be going to the same institution and nobody bothered to say, oh yeah, on Tuesdays and Thursdays we have a support group on the fifth floor at 7 p.m. because somebody else in a whole other department deals with that. And you know today people are very laser focused on what are we doing in our department and that's all they know. So my advice would be that And organizations too, and I would say it's important to not, there's organizations too for the financial aspect. This is another huge, huge, huge piece of it. And there are organizations like Family Reach is an amazing organization that provides financial help to cancer patients and their families. So that's what they do. That's what they do. Shellie: It's like all this stuff that you're talking about, It would be an amazing, amazing thing if all that information, we could have it in every oncologist's office. If you could go outside and the pamphlet holders on the wall, you could just fill up your bag. A lot of places that you go, they have what they call a breast cancer coordinator. And once you've been diagnosed with breast cancer, she's waiting out there and, oh, you poor thing, da, da, da, da, da. And she hands you a bag. And in the bag are all these pamphlets and little items, a little bar of soap and a little pen. It's like, give me a break. I don't wanna see all that. But then all that stuff is in the pamphlets where you can get a turban, where you can get a wig, where you can get the prosthetic breast bra. But the things that you're talking about are the meat of it. You're not talking about just a pamphlet, you're talking about this is the information on your mark, get set and go. And it's up to you to go. Because every decision you made, it's like you make the choice for the experience you wanna have. So like all the things we're talking about today, it's like how in the heck could you just get all this stuff in a doctor's office and say, here's the bag, Frederick: And unfortunately, I long for the day where someone is going to get that diagnosis and then they're going to get comprehensive resources that are going to address like support services, financial services, all types of services the newly diagnosed person needs. Clinical trial information. So I long for that day. Some institutions have that in place. Some are better than others about doing that. Some immediately, you know, you might, like I said, you might get assigned to an oncology social worker who's gonna pull all that together for you or a patient navigator. Some places aren't there yet, but the organizations, you know, are there. There's one more I wanna mention that reminded me when you talked about the wig, it's called look good, feel better. LookGoodFeelBetter, which I think is lookgoodfeelbetter.org. LookGoodFeelBetter is about beauty tips and makeup and different things for the cancer patient. That's what they specialize in. So they kind of marry that with the support services as well. So there's many different places, and I will just to give our plug, you can always go to standuptocancer.org, click on patient resources, and then you have a list and it links out. Shellie: Even in the office, what I think Stand Up To Cancer information They should be in every office. Frederick: I mean, to start there. To always start there. So because we don't directly provide those types of services because we're research funders. But you link the information. But we link the information. So people can come on. We have it in different sections on our website. So it'll say, and we try to do it in a continuum. So we have a section called diagnosis, and then you click on that and that links out to different things about what to know if you get a diagnosis. And then the next section is like treatment. And then there's a section on finances. There's a section on support services, which links out to organizations like cancer care and cancer support community. And then we have a section called survivorship. And so there are many things too, as you know, like after the person has, you know, lived with their cancer, they're thriving in the aftermath, you know, of their treatment. And so what does that look like then? You know, in survivorship, aftercare. Exactly, exactly. Shellie: You're not gonna live in darkness anymore because you've had cancer. You can't live in darkness after you've gone through cancer and the treatment and now you're surviving. Your life changes. I mean, that's just the bottom line. Yes, once you hear that see you've got cancer. It's like okay Nothing is the same because your laser focused and you should be yeah on the information to determine Yes, the journey you're gonna be on are you gonna be on that journey in the dark? Are you gonna be on that journey in the light? Yeah, I would suggest the light We know that cancer crosses the color lines. There's no exception. But the treatment isn't the same for everybody. So just talk about that. And what is your opinion on why you think that really is? Wow. Frederick: Okay. So I'm not a public health person, but I'll just tell you just from my experience working in the space. So we have factors that are referred to, this is the public health speak of it, what they call social determinants of health. So this is where they say where you live, where you play, where you eat, where you play. So there are so many different social determinants. In fact, COVID, if you guys remember, really brought that to light. Oh yeah. When they saw, wow. Geographically. Geographically. And they saw, wow, black communities in these areas weren't getting the same kind of treatment or access, et cetera. So a lot of that is, it is everything from the economic inequality It's everything from the access to care, and I mean like literally if you could be living on the other side of town from where the major hospital or the cancer center is or where the clinical trial is taking place, and it could seem like a world away. And it will be. It can seem like a world away just because what if it's a transportation cost barrier? You know, if there's an economic inequality barrier, there's environmental factors. Sometimes people and particularly poor communities are living environments where they don't necessarily have readily available healthy foods. And there you go. Right. Or they're living by someplace environmentally that's maybe not great. for their physical selves. And all that is very unfortunate. All of these different social determinants of health. Shellie: Because cancer comes to everybody's door. Frederick: Cancer comes to everybody's door. It doesn't care where you live, what your zip code is. Exactly. It doesn't care. And so the thing about it is when you have these health inequities, that can just disproportionately affect certain You know what I mean certain communities kind of depending upon where you are. I think that's why it's important for people to just also to Make themselves known have their voice Go to the doctor and also, you know participate to in research because to be counted, you know to be counted as well because that's another thing that happens is that maybe they're doing some breast cancer research study, and they need to have black women as a part of that cancer research study, let's say, but that's happening somewhere else. And as they design that study, they didn't think, well, maybe we don't have the population of who we would like to participate where we're doing it. Or how do we engage those people to participate? How do we recruit them? How do we find them? How do we incentivize them to participate? Shellie: Recruit is the magic word. Frederick: Right, or incentivize even, because a lot of times they want, people want people to do stuff, but they don't really give them an incentive to do it. Why should I come across town to do that? Shellie: But then they say they reach out and they don't really reach out. But you know, the bottom line here is, I'm very appreciative of you taking the time out, come here with that vast barrel of information that you come with and that you always have. Frederick: We actually changed all of what we call the procurement language in our research because of this very issue. So any research grants that we give out, this happened several years ago, but it became a part of the application. So you're not going to get any funding unless you already have a plan to engage communities, you know, various communities to participate in that project, or you're not even gonna get the funding. And what it does is that it's forced them to include people in the research project that traditionally wouldn't be there. So now you have a cancer research project that includes a community advocate, include somebody maybe from Faithful Central. Include somebody that's a part of the research project, so it's not just the doctor, it's not just the PhD, it's not just the MD, it's not just the research lab assistant. It's somebody there that's a part, that their voice is at the table, and they have a plan that they can prove how they're gonna do it, to engage people, to participate, so they're not leaving people's voices and participation out of it. Shellie: That is the best information. That's our Bitcoin for the day. That's our Bitcoin for the day. So thank you so much. Oh my God, Frederick, you're such an asset to this whole conversation and you taking the time out and stand up to cancer showing up. Frederick: Thank you so much. Is the best. I appreciate it. I'll just remind everyone again, go get screened. Visit cancer screen.org to learn more about how you can get screened, where you can get screened. Look at the guidelines. There's information, there's resources. So Shelly, again, thank you. Pay attention. Yes. Thank you. Be mindful. SPEAKER_00: Thank you. Thank you. Thank you. You're the best. Frederick: Love you much. Thanks for having me. Thank you. Shellie: Thanks, everyone, for listening. Make sure to follow and rate the show wherever you get your podcast. This podcast is produced by Rainbow Creative with executive producer Matthew Jones, producers Steven Selnick and editors and mixers Rob Johnson and Stefano Montelli. See you on the next one. keywords: stand up to cancer, cancer, breast cancer, cancer research, health, womens health, woman health, black women health, black women wellness