[00:00:00] Adam Walker: 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.
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.
Patient navigators empower and guide patients to overcome barriers during cancer treatment, helping to ensure a seamless, high-quality breast care journey. In this episode, we are going to learn more about Komen’s Patient Navigation Program, which connects patients to resources and support every step of the way. I am excited to be joined by Tamarah Davis and her patient navigator Roselyn White to learn more about how Komen’s Patient Navigation program is improving outcomes for Black patients. Welcome to the show, Tamarah and Roselyn!
I’m really excited about this. Cause we we’ve talked about Patient Navigators on the show before, but I don’t think we’ve ever had a conversation with both the patient and the Patient Navigator at the same time. So this is going to be kind of amazing. So I’m just going to bounce back and forth with questions for each of you. So let’s start Tamarah, with you. Can you tell us about how you were diagnosed with breast cancer?
[00:02:21] Tamarah Davis: Hm. Yes. That’s a bit of a journey itself. I remember perfectly January 15th I found the lump. January 15th, 2021. I found the lump and I recognized that it was hard and kind of rigid, and breast cancer is not a stranger to my family. I had an aunt that just died the year before from it one that had beat it. And another one that has still been dealing with it and battling against it for 10 years. And I kind of knew, but I wanted to kind, I wanted to be in denial. I decided to be in denial.
So I ignored it and on January 30th, I felt a lump putting on my deodorant that I just knew was my lymph node. And I freaked out and like many women on the younger side, I walked into an emergency room not knowing what to do and I was out in the emergency room. Actually got them to give me an ultrasound, even though they told me they were like, we don’t normally do this.
They did. They did an ultrasound for me. And a nerve was looking, doctor walked in a little while later with papers that said Bre category five and he was stuttering and said something about him not coming into work to tell 31 year olds that they have cancer. He seemed pretty sure. And I remember my brain just shutting down and I kept saying, so it’s not AYT so it’s not assist.
So it’s not a cyst and then mental storm Ury hit before I could get a mammogram. So if you can imagine I was extremely stressed. Actually suffered from a different condition called trigeminal neuralgia. I don’t know if you’ve ever heard of it, but it’s also nicknamed the suicide disease. It’s one of the worst pain conditions known in mankind.
Well, I have it on the left side of my face and it’s triggered by stress. So when the winter storm hit, I lost electricity and power and I, I couldn’t I couldn’t get anywhere to get that mammogram taken care of to verify whether I had it or not. I ended up accidentally taking too much of my carbamazepine which is an anti-seizure medication that works for trigeminal neuralgia and I didn’t even realize you could get toxic levels.
And I ended up passing out and waking up in a hospital they had, did a complete CAT scan and in that CAT scan they had seen destructive lesions and my bones. They put me on the oncology floor when they admitted me and I walked into a shared room and I saw this black woman sitting there. She was struggling to breathe and She sounded so much in pain and it was very clear.
She was at end of life and they put me in the next bed next to her. I felt like I was looking at my future. I remember that fear. Doctors came in and told me it was in my bones before a mammogram even really, truly confirmed it. They only agreed to release me if I went straight to their women’s clinic and got that mammogram.
And I found out a few days later that it, I was diagnosed with estrogen positive invasive ductal carcinoma with some of usually abnormally large or abnormally fast rate of growth. My Ki-67 proliferation rate, which is what they said was extremely strange. Not that I was just, I’m 31 at the time, and I’m diagnosed with stage four cancer, but that Ki-67 proliferation rate was at 70%.
20% is considered very fast. Wow. That 74%. And so I’ve been in, I’ve been in active treatment since then. And I’m in my second round of chemo and I’ve already been informed by my oncologist. I’ll have two more years of immunotherapy. Verio to look forward to that, basically we have to keep our foot on the cancer’s neck or.
They said that they could offer me in-home hospice. So I’m in the treatment. I’m fighting for my life and for my daughters and to remain here and I just have faith and that hope, but yeah, that finding out was just, it was a journey in itself, a process In itself.
[00:06:05] Adam Walker: Wow. That journey, I mean, just sounds like it must have been truly shocking. I’m looking certainly looking forward to hearing more about your story as we, as we continue talking. Roselyn, I, I also understand that you’re a breast cancer survivor. I’d love for you to tell a little bit about your own diagnosis and how that experience shapes your role as a Patient Navigator.
[00:06:24] Roselyn White: I was diagnosed with ductal carcinoma in-situ two in 2015. Now I’m pretty much a health basically by nature. And so I’ve always gotten my mammograms and. before I got my mammogram that year, I was going to a family reunion and I noticed that my urine didn’t smell quite right, because I’m into my body. And I told my aunt, I was like some things not right about this, but I’m going to go on a trip.
I took my mammogram and while I was on my trip, they were like, okay, when you get back, you need to come back and get, we need to look a little deeper because we saw something.
And so in my case there was no. And that’s what women need to know. It’s not always, when you examine yourself, you may not always find a lump. Mine came in the form of snowflakes. I had like, he saw this dot and then when they got a little deeper into it, they saw like four and they, to me, they looked like snowflakes. It was four like snowflake looking dots. And so when they did the biopsy, they found that it was malign. and so I ended up, I have, I discovered that I have cancer on my paternal side, not my maternal side.
So there was cervical cancer and breast cancer. My aunt, my dad’s sister, she had breast cancer and because she had breast cancer and then 15 years later it came back in her kidneys. And that’s what she’s going through now. They have pellets in her kidneys trying to keep down the cancer in her kidneys at this point. She’s just holding it down, keeping a foot, as Tamarah said on her cancer.
[00:08:13] Adam Walker: I like that description. You’re the first person I’ve heard. Describe it that way, Tamarah, but it’s a, it’s a very, it’s a very vivid way to look at. I, I love that. So, yeah, but I like how empowering that, that vision is right. Keeping your foot on it, you know, I, it’s a very empowering sort of vision.
So so, so then back Tamarah, back to you. What led you to contacting Komen? How did you find out about the patient navigation program?
[00:08:37] Tamarah Davis: I actually was given that information by a Pink sister. We were both going to chemo at the exact same time. And she was an older black woman and she was kind of giving me that, you know, big sister type of advice.
And she told me that she had met this wonderful woman named Roselyn and that she really felt like she could relate to her. She could talk to her and that she was a Patient Navigator at the time, the Patient Navigator that. Had when I was diagnosed, it just moved away and they never replaced me. They never replaced her and gave me another Patient Navigator.
So I actually got a name and number on like a scrap of paper. And I was, I remember sitting there, you know, about to drift off from like the Benadryl they gave you at chemo, knowing like, I need to remind myself because chemo brain is a , it’s a hard one. Chemo brain has hands and your memories are just jacked.
And I didn’t actually really realize it was Susan G. Komen at first. All I knew was she said that she was a woman who also went through it and that she helped and was a Patient Navigator. I. Know that she wasn’t involved at first, but I was so pleasantly surprised because of course, Suji Komen’s one of the foremost breast foundation so much that has been done in breast cancer research and advancement can be attributed and, and, and traced back to Susan G.
Komen. So I was pleasantly surprised, but that’s how I got Roselyn’s number. And I felt like it was completely God or gained. I really was in a place where I needed help, but I, I didn’t want to. I didn’t want to say that I, I’m not type of person I’m, I’m known as that strong person. I’m a very strong personality.
I’m the one everybody leans on.
[00:10:10] Adam Walker: So. I, I can see that about you. I can see you, you exude that confidence. I like that. That’s good. Thank you. But I’m, but I’m glad, I’m glad that you have gotten this opportunity to lean on someone else right. In that. And that’s, that’s so important. So then, so Rosaly, let’s talk about that, that kind of matching.
System and how that works. You know, I understand you, you were paired with, with Tamarah as your navigator. Can you explain the process, how navigators are paired with patients and specifically how you and Tamarah got connected or, or elaborate on that a bit more?
[00:10:39] Roselyn White: Okay. So I. There’s three ways that I get paired. Now this is not necessarily with all navigators, but with me, I do outreach, which we all do outreach, but I do outreach with when I’m out in public, I’m bold. So I connect with all my bowling. Colleagues, you know, everybody, I talk to them. I’m like, if you know anyone, I pass out my cards, I do it that way.
And then I outreach to oncology facilities via email, who I talk to. And then through. The helpline people come in that way. So Tamarah may have talked to someone who talked to someone who told her about me and that’s how she got my number. So I stem out in all kinds of ways. So I don’t know how she got the number, but that’s how we connected.
So it could have been in a, a plethora of ways because I’m always talking about it. I’m always reaching out to people to let them know what I do in case they know someone who needs the help.
[00:11:46] Adam Walker: That’s fantastic. And, and Tamarah, you know, you mentioned that you’re typically the person that people rely on. And again, I can totally see that. Right. But so I’m curious then, what was your experience like when you connected with Roselyn? What was that first conversation like for.
[00:12:02] Tamarah Davis: It was, it was kind of like an answered prayer. I, my faith is extremely strong. I’m a licensed minister myself. So. I, I hold on to that and that spirituality and that, that, that strong belief in God.
And that he’s good, no matter what. And I had been asking him for some type of guidance, I had very specific issues as well, that I was dealing with separation from my husband and not being able to function on a, on a good level when me and Roselyn connected, speaking to somebody who didn’t see me as just another patient, you know, much love to our, our doctors and our oncologists who went to school and they truly care.
But there’s, there’s a difference when the person that you’re talking to has gone through which you’ve been through. They, they understand why the loss of my breast, I, you know, deals with my, and makes me insecure when it comes to my femininity or my be being a woman. While my doctor called van.
Just lose the breath, you know, that’s just vanity. She was able to understand that that deepness and that sometimes doctors, they just get used to repeating themselves and they have so many different people. They have to care for that. You, you, you see being an individual we’re all created equal, but we’re not equal in how we were created.
We have differences and genetic differences in our DNA that. It to the point where, you know, black women are more likely to do this or black women are more susceptible to this thing. So being able to talk to her and we were able to talk about being black women. We were able to connect on that level of faith and we were able to speak, she was able to gimme advice that I took and that I’m, I’m so glad I did specifically about my children.
I was. My E eco score. I don’t know if you know about the E eco, but it’s the Eastern cooperative oncology group. It’s kind of like the Carno scale. But they gave me, I was marked down to an E eco three. I spent 50% of my day in bed or over 50%, most of my day, not to be honest. I spend in bed really weak, lost a lot of weight and strength.
And I was worried about my children. There, I would, my body would just shut down every couple of days and I would just sleep and there was nothing that anybody could do to wake me up. And I would wake up to my little girl’s faces, just tears streaming down their face. Cause they thought I was dead.
Well, I thought because I’m young you know, the average breast cancer patient is 63 years old. I’m 30. I was 31, 32 now. Glory to God. I made it to another birthday. And have a birthday coming up. In fact I have young kids. And usually when a woman has breast cancer, their kids are usually older.
Again, the average age is 63 and only there’s less than 2% of us that get diagnosed under, at the age of 35. So even like when cancer care services and patient services, they’re, they’re kind of under equipped and unprepared to deal with somebody that also needs like childcare and I need help. And I’m also going through a separation and I need to find out a way to take care of my children.
So I can kind. Move forward and power through it. And having to deal with that and the young children It’s a lot. It’s a lot. And Roselyn was able to connect with me and give me extremely good advice. She said she had been on both sides of it. She seen where women knew that they were less than capable at the moment to deal with their children and ended up losing them due to like negligence and that she didn’t want that to happen for me.
I mean, we, I felt like we talked for hours and hours. I felt like I knew her. I was able to completely open. And vent to her. It didn’t feel like she had anywhere to go. It didn’t feel like at that moment, nothing mounted more than just kind of seeing me and people forget to tech up on me. Oh, I, I just figured you’re you’re all right.
Like you’re just, you’re Tamarah, you know, you’re, you’re fine. You’ll be fine. You got this. And she was able to, I see you. And I guess sometimes, you know, where that, that kind of Barbara beautician syndrome, where it’s easier to talk to a stranger, that’s doing your hair and you’re easier to open up to them than the people that are around you.
I’m very isolated, kind of a loner by nature. And I don’t have any family in the area. It’s literally just me and my children dealing with this and trying to fight stage four cancer and raise them as well. And she. Really just gave me, I felt like life saving advice and I was able to make moves that allowed me to keep my children in the home and make sure that they were also cared for and that they weren’t missing out on anything.
They don’t deserve any less because of what I’m going through. And so to make sure that they can still have a hundred percent guardianship, that they have the supervision and the attention that they need. While I’m able to also rest and recover and heal. I didn’t want to admit that I needed that help.
Roslyn really convinced me that it wasn’t I was looking at strength wrong and that it wasn’t weakness reaching out for the help. It was actually that, that that’s the strength to reach out and say that I know that I need this. And that. My children. I value them enough that even if I don’t do it for myself I can do it for them.
She really is a, a wonderful woman. I could immediately pick it up. And I was just really, really grateful that I was paired with her.
[00:17:01] Adam Walker: Wow. That’s that’s just fantastic. And so, so amazing. And Roselyn, I’m curious, you know, you got, you got paired up. What are some of the resources that you were able to connect? Tamarah. And what are other resources that are available that, that we might need to know about?
[00:17:19] Roselyn White: Well, there are a plethora of resources. That’s a big question. Well, at the time Tamarah needed, if you don’t mind, Tamarah, me telling. She needed, you know, rent, help, utilities, help food, a caregiver that we talked about, you know, because at that time, was in need of those major things.
So we talked about that at linked. I was able to get her funding from Komen. To help with the rent at that time Cole financial assistance. I looked, I, what I do is I look locally to try to get as much help as I can for her. And so we were able to get her rent utilities, food help, and then I looked into state resources and national resources to get her help with the caregiver because she’s got children.
So she, and because she spent so much time in. In bed, you know, a caregiver was going to be vital, you know? And so that was what I was looking at for her situation. because when I talk to patients, I’m looking at their whole scope what’s going on in the home and I can be nosy, but. So I’m trying to be nosy because I want to know what’s going on in the background so that I can better help, but I’m a social worker.
So that’s what I do. I’m extremely nosy, but it’s to help. So there’s a lot of resources out there that I can. Can not possibly name everything, but national resources and, and local resources is what I use to help her. For lack of not naming everything.
[00:19:00] Adam Walker: No, that’s great. That’s great. That’s perfect. So, so then Tamarah, you you’ve been connected, you’ve gotten access to resource. How have you been doing overall since you connected with Roselyn and, and how has working with Roselyn sort of helped you?
[00:19:14] Tamarah Davis: I have been amazing ever since then, and that’s not to say that I’ve been getting better. I haven’t really had progress talking to and strengthen the emotional and the, the mental and people don’t realize how much of the battle is mental,
it, cancer and cancer treatment. It, it, it bothers you, you have to kind of face your own mortality. And do I want to live or do I want to just be surviving? Just making it, do I want to continue kneeling in front of my toilet every single morning is that life is that living is waking up and, and excruciating pain.
Is that, is that a quality of life that I want to continue to. I made the decision that while my children were minors, at least that they’re more important than absolutely anything. And I will deal with whatever comes my way. And I was able to kind of ground my footing and that because Roselyn helped me get the resources I needed.
Like I said, that first, she said that moment I really did need financial help. And I really did need somebody to kind of kick me in my butt and say, you need a caregiver. You’re being hardhead. You need a caregiver? She said she was nosy, but she was nosy because she genuinely cared and there is an absolute difference.
If she wasn’t trying to satisfy some macOS curiosity, she was genuinely my big sister at the moment and telling me that I needed to get myself together. Well, if you want to keep your kids, then you’re going to need a caregiver. You, they don’t deserve. You not being awake for days, they were going to school and coming back home and my eyes still hadn’t been opened.
So it, it was, it was really bad and not only that, but I was also dealing with like depression. And I’ve been able to go to therapy since then. I started, I, when I was talking to her I’ve been slated for psychotherapy and I, I was kind of going, but I, I was known not to show up. Again, with that belief that I got.
I’m strong. I’m the strongest person. I know. I got this, I got it, but I really did need that therapy. I did need help. And because of that conversation with her and just the first conversation, not even her calling back to check up or, and everything like that, just that very first conversation, it really only takes one or two sentences to change somebody’s perspective or to change somebody’s life or change the trajectory of their prognosis.
It really does. And it comes all down to our wheel, our wheel to live. It’s, there’s a reason why some people find out they’re sick and they seem perfectly healthy and then they die a week later. They. It was our human will, are, it’s so strong. We still can’t medically understand, you know, the mind body problem and how an immaterial mind, you know, actually influences our, our physical bodies like that.
But we, our human will, can just, I know if I want to lay down and die, I can do just that, that it wouldn’t be long to just give up and for my body to shut down. And I got a kick in my. I was not admitting to myself that I was very depressed moodiness. They had put me in, they put me in medical menopause.
As I didn’t want to give up my wo I still wanted to have a son. I have two little. And I still wanted to have a son one day. And so I, I refused to have the ectomy they wanted me to have. And so they stuck me in like in a hormonal injection. I have to take once every 28 days that keeps my body and menopausal, I’m having hot flashes.
I’m having mood swings. My body’s 32 years old. It’s like, what’s going on at the same time I’m taking oral chemo. It was a. There was so much. And I, I, I wanted to act like I, like I was Atlas and I, I had the entire world on my back and talking to Roselyn that really did all I needed was that one conversation.
And she so affected my life that I made sure that I, I, I got what I had to do and I did what I needed to do to take care of my kids. And for them to be completely taken care of, my girls are thriving, all A’s and getting. Qualified for gifted and talented in more multiple subjects. They’ve kept all as they’ve been perfectly behaved.
I’m so proud. I’m so proud of them. And I know that for, it was best for me to put my pride aside and get that caretaker and have somebody move in with me. And I’m so glad that I heard that and that I did again, I can’t really say that I’ll have great news medically but I feel victorious mentally and I think most the battle.
[00:23:30] Adam Walker: That’s that’s fantastic. I love that perspective. You, you feel victorious mentally. That’s profound. So, so Roselyn last question to you. I understand that Komen’s patient navigation program supports people at all steps of the journey. So how can listeners connect with a Patient Navigator if they need support?
[00:23:50] Roselyn White: They can go to 1-877-GOKOMEN. They can email Helpline@Komen.org, and they can call 877-465-6636..
[00:24:10] Adam Walker: That’s perfect. Listen, you’re both so inspiring in your own unique ways. And I can honestly say that I have learned and been inspired from both of you today. And I think I speak for our listeners and say that they are as well. And I just, I can’t thank you enough for joining me on the show today.
[00:24:27] Roselyn White: Thank you so much for having us and thank you Tamarah for participating. I appreciate you so much. You are so wonderful.
[00:24:35] Tamarah Davis: Pleasure really is all mine, Miss Roselyn. I thank God for you. All glory and honor to my Creator and that faith that keeps us here and that faith that keeps us going and what brought us together and gave me that smack in the face that I need.
At that moment. I thank you so much for it. You can’t possibly know how you’ve affected people’s lives, but I want to say on behalf of all of your patients, thank you so much for genuinely caring for dedicating your life to this. I’m sure there are far more lucrative professions that you are more than qualified to handle, and it really speaks to who you are that you’ve dedicated yourself to this and that you’re advocating in, especially for black women.
To that we get earlier mammograms and that we pay more attention to our bodies and figure out what’s going on because it really, it it’s, it needs to come to an end. We got to find some way to, we got to end this some kind of way. It has to come to an end. Especially the epidemic amongst black women.
I wouldn’t wish this on anyone. And I would wish though you want anyone if that makes sense.
[00:25:40] Roselyn White: It is my pleasure. This is what I do it for. This job was a godsend. And I said it was my job when I saw the description and trust I’m working for all of us.
[00:25:52] Adam Walker: That’s great. Well, thank, thank you both.
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. In advancing breast help equity at Susan G. Komen, please visit Komen.org/Stand for H.E.R. That’s Komen.org/Stand for H.E.R..
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.
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.