[00:00:00] Adam Walker: The Real Pink Podcast is supported by Wacoal. Wacoal supports Komen through Fit for the Cure and other initiatives, which have raised over $6 million to date. Wacoal will donate $5 to Susan G. Komen for every person who receives a complimentary bra fitting and purchases a regular price Wacoal or b.tempt’d bra at a Fit for the Cure event. Wacoal will also donate $5 to Komen for every person who completes the steps to digitally size themselves with mybraFit. Are you wearing the right size bra? Find out! Visit fitforthecure.com to learn more.
[00:00:50] 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.
[00:01:03] 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.
[00:01:38] As part of this series, we talk about how the breast cancer experience impacts the Black community. In this episode, we are taking a deep dive into Kay Shaw’s experience as a breast cancer survivor and the challenges women – and especially Black women – may continue to face post treatment. Welcome to the show, Kay!
[00:01:57] Kay Shaw: Thank you, Adam.
[00:01:59] Adam Walker: Well, I’m really excited to talk to you. Appreciate you taking the time to join us this morning. Let’s start with your story. Can you tell us about your diagnosis and your treatment plan?
[00:02:10] Kay Shaw: Well, I was in Washington DC working on a long-term project in 2019. I felt something in my left breast, and apparently the left breast is the most common area where tumors occur. But I didn’t want to have treatment in Washington because my doctors were all New York. So when I got back to New York and got settled, I contacted my primary care physician, went in for a complete checkup and she felt something too. And she connected me with an oncologist in the Mount Sinai system. And of course I went through the, mammogram and they said, we think we’re going to need a biopsy.
[00:03:01] And I had the biopsy and it was definitely… before I even left the room, the doctor said, we can tell by the shape of the the area that we biopsied that is probably cancerous. And then I got the official diagnosis the day after Christmas in 2019. And yeah. And so I… so they scheduled me. So I, of course I had to have a lot of additional tests and sonograms and the like, and I was scheduled for surgery. I told my surgeon that I didn’t want a lumpectomy. Because it didn’t look like it was that small, and I’ve had friends who’ve had lumpectomies and the cancer recurred later, 10 years, 15 years, or whatever. And so I said, well, let’s remove the breast. I’m not a young woman. It’s not like, it’s like a whole aesthetic thing.
[00:04:05] And so I had a full mastectomy. And 2000… 2020 was when they, the whole… omicron, COVID things started emerging and becoming more serious. I was able to have my surgery literally two days before the hospital shut down to only accept COVID patients. So I was extremely lucky in terms of my timing. And I was only there overnight because, I don’t know if you know what you know about New York, but organizationS set up a whole tent outside in Central Park, which Mount Sinai borders on, for COVID patients, because that’s how many work, people were coming in with serious symptoms. And myhospital window looked out onto that that encampment. And I was like I think I better leave a little early if I can. So they discharged me and then after the surgery I had I went through chemotherapy.
[00:05:22] Adam Walker: Well, I mean that, that sounds like one surreal moment after another. The treatment and the surgery and then looking out onto that yard, onto the central. That’s wild.
[00:05:32] Kay Shaw: In some ways I was fortunate because the whole country pretty much shut down, but particularly in New York City. So I was able to focus on my healing and my recovery without any distractions. So that was the only positive. I mean, considering.
[00:05:53] Adam Walker: Right, yeah, of course. Of course. So have you had any complications during the course of your treatment? And if so, can you share a bit about how you were able to navigate those complications?
[00:06:04] Kay Shaw: Well, I lost my hair. And that’s a big deal for a woman who had dreadlocks all the way down her back. And so, I had to adjust to that. But I was very fortunate because I was in a breast cancer treatment program at Mount Sinai. It’s called Dubin Breast Center. And all of my services were right there. I had little private room for my infusions. I had my, my doctors were all based there. Sonograms, mammograms, everything right there. All the services were right there. So, I was very fortunate that I didn’t have to travel from place to place, which, I want to address that for people living in rural communities. The challenges of keeping up with your treatment and your service. And so, and then also they gave me a cocktail before the the chemo medications.
[00:07:17] They gave me a cocktail of things to mitigate side effects of the chemo. So I was very fortunate I didn’t have nausea. They gave me Benadryl so I would relax and pretty much sleep the whole time I was receiving the infusion. Because the whole process for that day… because they take a blood test to make sure that your blood levels are okay and it’s safe for you to have an infusion that day. And they get… and because you are in the hospital, they get the results right away. And and then they gave me the medications to again, as an infusion, to mitigate any possible side effects of the chemo. And and so it’s like a whole four to six hour process.
[00:08:06] Adam Walker: Wow.
[00:08:08] Kay Shaw: For each treatment. Yeah. It’s a big chunk of time.
[00:08:12] Adam Walker: Yeah. That, that’s quite the commitment.
[00:08:16] Kay Shaw: Yes, and that’s the issue. It is a commitment. And sometimes women, people don’t have that time to give. And I always scheduled it in the morning and I was out by the afternoon. But it’s a commitment and if you don’t follow through with the treatments on the schedule that is set up for them, you could run into problems.
[00:08:43] Adam Walker: Yeah. I mean, I kind of appreciate you talking about the commitment that it is. I’ve never really thought about the vast amount of time that the treatment takes and how that must impact people that maybe have to care for young children and don’t have any other options or all kinds of other complications. I mean, that,seems like it could be a profound hurdle to overcome. So thank you for sharing that.
[00:09:10] Kay Shaw: And then also I’m fortunate that I live in a major metropolitan area. So I could literally take the bus for my treatments.
[00:09:21] Adam Walker: Yeah.
[00:09:21] Kay Shaw: And if you live in a rural area or where you have to travel a longer distance, you have to make a transportation arrangements and have someone go with you. And then and then during COVID, no one was allowed to accompany me. Yeah. I always recommend, if you can have someone accompany you, at least initially. Because there are a lot of things that they tell you and and you’re like a deer with the headlights, right? And you have all these questions you want to ask, but they fly out of your head. So you need to have, if you can have someone with you. And so during COVID. I was doing all of this alone.
[00:10:08] Adam Walker: That’s so tough. That’s so tough. But you’re right. I mean, having someone in the room with you to take those notes is so important and so critical just to fully understand everything that’s going on. Cause your brain just can’t absorb all that information in that moment. Emotionally, you can’t absorb all that. Right? So, so we know that closely following a treatment plan can increase the chances of survival from breast cancer. I mean, tell us a little bit about your post-treatment follow-up plan.
[00:10:37] Kay Shaw: So, my doctors are pretty diligent. So I had bone density tests. I had blood tests every time I went for treatment. And so I go back… I go to the breast center twice a year. One, I get an infusion for my bones to to protect them. And it is not because I’m getting a treatment at that time, but over time, for the next five years, I’ll get an infusion twice a year for my bones and a blood test every year. And once a year I have the mammogram and sonogram. So my doctors are pretty diligent and I have a primary care physician that the test results are all shared with her. And so she noticed anything kind of different or if my glucose is high, or… they really pay attention to your your organs, certain your kidneys and your liver. And recently after ablood test, I get them, again, twice a year, my primary care physician thought my numbers were a little odd in terms of my liver. And so she wanted to have a PET scan and turns out my liver was fine, even though the enzymes were higher, but the liver did not look inflamed.
[00:12:21] But she noticed, my oncologist noticed something, and one of my lymphnodes on the left side, so I had to go back through that process again of having a mammogram and a sonogram. And then they wanted a biopsy to take a closer look. Well, thank goodness there was nothing. Nothing that they needed to be concerned about. But if you don’t have physicians that are really paying attention to you and following up and getting these tests right away, little things happen because of your diet, because of your environment, because of stress or whatever. They need to be able to follow up and say, Is this a recurrence? Is this, is this something new? Is this something we need to treat?
[00:13:14] And fortunately, I did not have to do that. But I had to do like three different appointments. For them to get to that decision. That’s again, you have the same level of commitment that you have to make in your post-treatment. In your follow up as you have in your in your treatment. The chemotherapy and radiation… and also I was blessed that I didn’t have to have both chemotherapy and radiation. It doesn’t end with that. You don’t come back a year later, for the mammogram, and then five years later you’re cured. You really, your doctors have to really pay attention to everything that’s happening in your body.
[00:14:00] And you have to be able to make a commitment to follow up with them, whether it’s every six months or every year, and that’s a major commitment. Now, I’m a single woman and I live in a metropolitan, a large metropolitan area. So I, and I work remotely. So I’m not taking a lot of sick leave. I’m not having to ask people for rides from people or go through the expense of cabs or if I, I don’t, if I shared a ride with with a spouse, coordinate that kind of time, I don’t have to do any of that. But a lot of women, particularly women with children, do.
[00:14:46] Adam Walker: That’s right. Yeah. I mean, like we talked about before it’s certainly much more difficult for some, and I’m thankful that you have such great care and such easy access where you’re at. So what challenges have you continued to have as a survivor?
[00:15:02] Kay Shaw: It was just the suddenly being afraid that, then the cancer might have they might have missed a microscopic spec of the cancer and and that I might have to have surgery again. But other than that, I haven’t had any major problems. I do take a.. I do have hormone therapy. I take a pill and folic acid every day. Which means that they are basically decreasing my estrogen. And during the post-treatment phase, I did have a lot, I did have fatigue. And with the estrogen levels lower, it affects women in other kinds of ways too. In terms of their female hearts. And so,that was discouraging. But I haven’t had any other major issues.
[00:16:19] Adam Walker: Okay. Well, and so what are some other common challenges you’ve seen other survivors face, particularly Black women?
[00:16:28] Kay Shaw: Financial, because your insurance does not cover everything. So you know, the copay, the hospital bills if you do have a physician with a very aggressive follow up treatment plan, you are paying for part of that. Your insurance is not covering everything, so you might be like, oh, I’m doing well. After a year or two, you might say, Oh, I’m doing well. Do I really need to go in for this test? It’s been coming back negative and I’m just paying off the expense sfrom before. So you know, it might be something you think you can postpone, or delay, or put on the back burner until later. And again, I happen to be fortunate. But for your life and your life is important to your family and to your community, you really do need to make that commitment. You need to make that a financial priority if you can.
[00:17:32] Adam Walker: Yeah, that’s very well said. So how do you think Komen can continue advancing breast health equity for the black community?
[00:17:43] Kay Shaw: I really think that focusing on the South, where a lot of majority of black people actually live. And where the numbers, well, you know the statistics about mortality rate of cancer deaths for black women. But when you are in… I just come back from Mississippi. Well, it’s, it, I think it’s 40% nationwide, in terms of black women and compared to white women mortality deaths. In Mississippi, it’s 60%.
[00:18:17] Adam Walker: Wow.
[00:18:18] Kay Shaw: It’s very high. And the cancer rates our highest in along the areas of the Mississippi River and the coastal Virginia and Carolinas. And I was like, I was shocked. I was attending a program where these young people were talking about human rights defenders. And it was at the Piney Woods, it’s a private it’s like the last remaining private Black boarding school in the country. And it’s located just outside of Jackson. And Jackson is very economically depressed. And of course it had a spotlight because of the water crisis there. And so more people aware of just how challenging it is for people, the local residents. One of the human rights defenders that they did a monologue on, these kids did the research and they presented a monologue on her was Fannie Lou Hamer.
[00:19:24] Now, she was a civil rights and voting rights activist. She led a delegation to challenge the Mississippi delegation and try to keep them from being seated at the Democratic convent. And because her profile, and because of her persistence, it gained national attention, and eventually that particular delegation had to be disbanded later on. But she died of breast cancer. She died of breast cancer in 1941. Now you could say, Oh, things weren’t, we didn’t have the medical advances that we have now. But when you look at the fact that 60% of the women… the mortality rate is 60% in Mississippi and it’s much higher than white women, then it’s probably not that different today. And so how many Fannie Lou Hamers are we losing to breast cancer?
[00:20:39] Adam Walker: That’s, that’s a profound question.
[00:20:44] Kay Shaw: So, I was really struck by that and heartened by that. And, just the whole medical experience in Mississippi we drove around a lot and as I said, except for like the downtown areas or the high income areas, it’s very economically depressed. You go on the other side of the railroad tracks to the adjacent community, and they have this huge hospital complex for children, for adults. I mean, the services there look really, pretty good. Look like it could match what’s in Washington DC. But that community, you would have to have the insurance, and you would have to have the means to commute there to get take advantage of the services that they offer.
[00:21:35] Adam Walker: Yeah. That’s tough.
[00:21:39] Kay Shaw: So it made me even more aware. I mean they’re the major metropolitan areas and yes, you can do awareness campaign campaigns and promotion, and they had their own challenges with finances and travel and all that. But the challenges are compounded in rural areas in the south for black women and probably for white women as well.
[00:22:09] Adam Walker: Yeah, you’re right. And I don’t think we talk about that particular angle enough. I mean, even like, even in this conversation, like you’ve helped me realize things. I’ve had this conversation many times and you helped me realize things that, angles that I had not even realized that were, that are complications for people that are dealing with this. I really appreciate that perspective. So, so, okay, last question. What would you say to listeners, particularly members of the black community, along with other historically marginalized populations to encourage and support them during survivorship?
[00:22:45] Kay Shaw: I would say the first thing is in the secrecy. When I went for my test and had my conversations with my physicians, I says, nobody in my family has ever been diagnosed with breast cancer. I had not heard about it from anybody. Diabetes? Hypertension? Yes. But not breast cancer and other cancers. Like my father died of lung cancer. But among the women, nothing. I just found out recently, because she had a biopsy and because we’re now more in touch with her, that one of cousins is a breast cancer survivor. And that she had a lumpectomy two years ago. I could, we, I could have helped her with the process and I could have shared my experience with her.
[00:23:43] But I did not know. And because, and for women particularly we keep a lot of things to ourselves. And you might share with your girlfriend, but you need to share it with your family because that medical history is so important for doctors. And the other thing I would say is because there’s a higher rate of breast cancer among younger African-American women. A lot of the traditional treatments are not as effective with young black women because of the type of aggressive can cancer that we can sometimes get. So one more research, two more in inclusion, in the clinical trials to test the effectiveness of research and let’s end the silence.
[00:24:37] Adam Walker: That’s great advice. Great advice. So important. So, so important. Hey, I mean, you’ve really given us a lot to think about. You’ve shared your story. Thank you so much for joining us on the show today.
[00:24:50] Kay Shaw: You’re welcome. It was a pleasure.
[00:24:53] Adam Walker: 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.
[00:25:20] Thanks to Wacoal for supporting this podcast. Join the more than 1,000,000 people who have been fit at a Fit for the Cure event. Visit fitforthecure.com to learn more and book an appointment today.
[00:25:45] 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.