Knowledge is Power

[00:00:00] Adam Walker: Join us as we celebrate Black History Month where we’ll honor Komen researchers dedicated to helping us reduce health disparities in Black women, encourage Black women to know their family history and risk factors, and empower Black women to share their personal stories. Together, we Stand for H.E.R. – a Health Equity Revolution.

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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.

Fast-growing breast cancers can seem to come out of nowhere. That’s what it was like for today’s guest, Selena Smith-Albinowhen she felt a lump in her left breast six months after getting a clean bill of health following a mammogram. The diagnosis of stage 3 invasive ductal carcinoma led to her decision to undergo genetic testing. Her test results would have repercussions for her entire family. Selena joins us today to share what she’s learned through her experiences that can help other women. Selena, thank you for being our guest!

[00:01:24] Selena Smith-Albino: today, Adam, thanks so much for having me. It’s my pleasure.

[00:01:28] Adam Walker: Well, I love, I love hearing stories and I want to get to your story. I know you’re a busy mom. I know we talked about, you got a great job in sales with a large food and beverage company. Um, and then you find out you’ve got breast cancer. So, so walk us through, like what led to your diagnosis and what were you told about the breast cancer that you were diagnosed?

[00:01:51] Selena Smith-Albino: Yeah, thank you. Um, I mean, just to say that I was shocked is an understatement, um, because I’m a person that takes care of themselves in terms of working out a few times a week. Um, I’m a vegetarian, so I like to think that I have a healthy lifestyle. Um, and I was just having trouble sleeping on, on one side and finally one night, um, Decided to kind of poke around.

And that’s when I found this kind of perfect circular shaped, um, not if you will, um, on my left breast and it, uh, took me for a loop, um, that that’s certain in the course of a few weeks, I had my diagnosis. Um, And before long, I was sitting in front of an oncologist, um, learning exactly what this was and undergoing additional scans to see if it had spread and you know, what that meant, um, for treatment and diagnosis options as well.

So I’m pretty shocked to say the least.

[00:02:53] Adam Walker: So, yes, I want to, I’d love to focus in on two things about your story really quick. So one. I understand that you found this not long after a mammogram, which tells me that it’s so important to continue to be persistent in doing those self examinations and really knowing your body.

And the second thing that I heard in there is that there was just something unusual with your body, right? You were having trouble sleeping on one side. It’s something that needed something, something odd, and that triggered you to, or clued you in, I should say, really to, to do more examination.

[00:03:25] Selena Smith-Albino: Yeah, that’s exactly right, Adam.

So I, this is only the second time that I’d had a mammogram. And so I knew for my first year experience that, um, I had done dense breasts. And so the densities are rated a through D and, um, as luck would have it, I’m a level D density, which just means that, um, Hey. Things like tumors and in cancerous, or really hard to see on a mammogram.

And so, um, you get an ultrasound afterwards so that it does show up that way, if there is anything to be concerned about. And so I made my appointments, um, on time, you know, and Ben almost a year to the day that I went back for my second, uh, ever mammogram and ultrasound, um, and got a clean bill of health.

And so, um, that was in February of 20, 20, uh, fast forward and, you know, having, um, you know, my, my regular exam, I didn’t really feel anything. And then all of a sudden I was just like, wow, this is uncomfortable. And so I recognize that, um, oh, maybe at first I kind of dismissed it as, um, maybe I pulled a muscle, um, just sort of.

Or maybe, you know, you kind of your head lets you think of all the things that it could be so that you avoid the thing that it can’t be. Um, but it was a real eye-opener to say like, oh my gosh, there’s something here. Um, luckily, um, I happen to be on vacation with my family at the time and I have. Cool, um, is a doctor and so on the beach the next day, I’m like, Hey Nick, I need you to feel this.

Um, and let me know, like what, what your thoughts are, what do I, what do I do? Um, not everyone has a Nikki in their family, uh, to be able to go to right away. But, um, you know, she gave me some sound advice around this could be nothing, so don’t panic. Um, but if it’s still during the week, you know, call your doctor and follow up and that’s exactly what happened.

[00:05:25] Adam Walker: Hmm. Well, that’s such good advice, right? You make sure to follow up, make sure to be persistent if something is persistent with your body. Right. So, so let’s talk about what happened next. What testing and treatment decisions did you need to make early?

[00:05:39] Selena Smith-Albino: Yeah, I’m with my type of, um, diagnosis and, you know, I’ll never forget getting that call.

I think that everyone who’s ever heard, um, or gotten the call from their doctor, that, you know, the test results are positive for cancer knows exactly where they were, um, in that moment. And so no different for me, but, um, my OB GYN said while the doctors in our area, or, um, I needed something, um, in terms of specialty care, because, um, given my family history, given the fact that I had a clean bill of health six months prior that there’s probably more to this and we needed to get to the root of it.

And, um, so based on her recommendation, I got with, um, the doctors at Memorial Sloan Kettering and, um, had my first appointments to understand, um, what exactly is the full scope of what I’m dealing with for my. Um, I have an amazing oncologist who I love dearly and field does truly indebted to. Um, and, uh, you know, she, she really helped me understand how much disease I had.

Uh, and so it was shocking. Um, but I felt. Uh, kind of at ease in that same breath because of the treatments. Um, and the fact that she had already partnered with the breast surgeon and, um, the radiation doctor to, to have a team, um, to be able to really use. My specific situation and the course of treatment.

So I knew I had this panel of experts that had reviewed my case specifically. Um, and it gave me faith in being able to say, okay, I support the treatment, which was, uh, five months of chemotherapy. With immunotherapy every three weeks, um, followed by surgery. Um, so my surgeon and I aligned that I would have a double mastectomy given the progression of my disease and how quickly it came on.

Um, and then, uh, 27 or so, um, radiation treatments following and, um, I felt like, okay. Once I had a game plan, um, I’m the, what do we need to do? And let’s go do it kind of person. Um, I, I felt like I was in great hands going into that process.

[00:08:04] Adam Walker: That’s fantastic. So, so I want to think back just, uh, just a little bit prior to your diagnosis, I’m curious, were you aware of any other family members that may have been diagnosed with breast cancer or had any other issues?

[00:08:17] Selena Smith-Albino: Yeah, that’s a great question because I was always told that the examples of cancer and my family were too far removed for me to be worried about and didn’t require additional screening because of that. Um, and so my mom’s side of the family has a history of, of. Um, her first cousin actually close to my age at the time had a double mastectomy because she had cancer at the age of 40.

Um, her daughter had cancer. Um, another one of my mom’s cousin had cancer. Her brothers had prostate cancer. So here, I thought my goodness, you know, we’ve got some odds on that side of the family that we’ve got to pay close attention to. But it was always a little bit too removed, um, to qualify for additional screening, quite frankly.

Um, and so w you know, fast forwarding a little bit and recognizing that, um, the type of cancer that I have is, uh, unique. Um, we went underwent genetic testing and found out that I had the BRCA one mutation on, on that gene. And then we had to figure out, okay, so where did it come from? Um, my mom actually tested negative for that mutation.

And so that means it didn’t come from mom’s side of the family and it’s actually from my dad’s side. And so that prompted additional testing throughout my family.

[00:09:39] Adam Walker: Hm. Okay. And, you know, I’m curious, like how did the rest of your family respond to that revelation and kind of, what does that look like and how has it sort of shaped some of the medical decisions in your.

[00:09:52] Selena Smith-Albino: Yeah, my, my dad’s an only child and has never had cancer and his mom and dad never had cancer. And so it really didn’t think that there was anything to be concerned about other than a history of diabetes and high blood pressure. Um, on that side of the family, um, as it turns out, um, he was a carrier of the mutation and, um, so my sisters and brothers, um, we, we all got to.

Um, I’ve got two sisters with little kids at home. And so it was really important for them to know exactly, um, what, what they were potentially up against so that they could make the best decisions for themselves. And so of my siblings too desperate, positive, or community. Um, one has already on undergone a surgery, um, double mastectomy, um, reconstruction, and she has plans to also, um, have her ovaries and tubes removed.

Um, because that BRCA one mutation carries a higher risk of ovarian cancer. Uh, her kids, um, will get tested once they’re 18, um, because she’s a carrier, she will pass that potentially onto her child. Um, my other sister is currently in that process. She’d recently gotten her results. Um, but she’s got a daughter who has children as well.

And so, um, now everyone is faced with understanding exactly what this means for them, um, ahead of a diagnosis. So, um, in that sense, being armed with that really helps everyone make eyes wide open decisions, um, for the best outcome possible for them.

[00:11:33] Adam Walker: Yeah. I mean, just the more information, right. That you can have, the better decisions you can make and hopefully make early.

Right. Um, it’s so important. Um, so I’m curious about, you know, after your diagnosis and you’ve gone through treatment, um, what did your self care look like? Uh, both, you know, during your diagnosis, during treatment and afterwards, and what is your support network?

[00:11:59] Selena Smith-Albino: You know, I, I consider myself Adam to be the, a helper in life.

You know, I I’m supportive to others around me. Um, that is kind of who I am, right. Of always giving back to my community, volunteered my time. And I found myself in an uncomfortable position of, uh, really questioning what do I need for my. Um, and it’s, it’s always been like, no, no, I don’t need anything. Um, but in this case I kind of took some, took some time to think through what would be, um, Mo most beneficial.

Um, for me mentally, I understand that the physical piece that I’m going to take on and I don’t know who can help with that. Um, so how do I keep my head on while I’m going through all. And so I, I shared my news and diagnosis with my family and friends through social media and said, um, here’s what I need from you.

Here’s if you’re, if you’re looking for, Hey, what can I do? Um, I’ll tell you if, if I come across your mind, um, or if in the course of a day, you think of me, right? It can be on a postcard. It can be put it in the mail. Um, let’s, let’s take it old school and, um, you know, used to look forward to kind of going to the mailbox and seeing your name on something.

That’s not a bill. Um, give me that feeling again and, um, My tribe showed up. It was really special. Um, hundreds of letters, um, courting, um, through the course of, at least six months, I have a bag of them still here. Um, that sometimes I’ll just look back to know, uh, how much love and support was coming my way, because there are still days where you find yourself thinking like, How did you end up here, um, that you have to just remind yourself that, um, there are so many people that love and support you, um, and it gives you the energy, um, to fight on days when you don’t think you have anything more to give.

I also have an incredible husband, um, who made sure that, uh, he was taking me back and forth. Um, and he couldn’t go in because of COVID protocols. And so I was in the rooms getting my infusions for hours alone. Um, and that can feel really isolating. Um, so I had sister-in-laws that would, um, no, it was my treatment day and like send me messages, FaceTime me while I.

Getting treatment. My brother-in-law would come down and spend time with my husband while I was in that room. Um, just to look out for him as well. So this was not just my journey, um, but it was everyone that I’ve ever loved, um, and been friends with. And we were all in this together.

[00:14:51] Adam Walker: Yeah. There’s two things you said that I just love, you know, one is, I never thought about, you know, from a support perspective to saying.

Send cards send letter like you have, I would imagine having that physical evidence, right. That someone cares enough because it takes time to write and we’re not used to writing our handwriting’s terrible, you know, and, and to, to go in and put it in the mail, like, like the physical evidence of that I think would just be overwhelming and really amazing.

And, and I think the other thing you mentioned is that it’s a journey that you took with your community. Uh, and I think that’s really a beautiful.

[00:15:24] Selena Smith-Albino: I don’t ever, ever understand, like how much that meant to me. You know, there were days where I would get them and I couldn’t open them. Um, because I was just feeling a bit fragile and knew that I wouldn’t be able to read a card without just crying.

Um, but, but they were there and, and just, just really incredible. So, uh, you know, ask for what you need because people will show up and, and really surprise you.

[00:15:47] Adam Walker: Yeah. I love that. Ask for what you need, cause people will show up and surprise you that. Amazing advice. So I want to talk a little bit more about some of your medical decisions.

I understand that you decided to enroll into clinical trials. Um, tell us what drove you to that.

[00:16:05] Selena Smith-Albino: Sure. So understanding that I was already getting, um, some, some advanced treatment, thankfully, um, for people that have gone through trials, um, before me. And so getting that, um, chemotherapy with immunotherapy, um, was already groundbreaking, um, especially for my cancer.

So it’s like the commercials that you see for some of these things, you’re like, oh, that’s what I’m going to be taking. And hopefully it has a really positive impact on. Mike type of cancer. Um, but the other is just understanding that, um, my lymph nodes were involved in this and that they would need to remove some research with the help of my doctors on the, the impact, um, of lymphedema and what it means.

Um, How other people manage it through their lives. Um, and knowing that I was going to have 20 lymph nodes removed, made me a very like high probability that at some point I would end up with one 50. I’m a person who travels who’s active. Um, and so thinking through like, Ugh, do I really want that to be another lingering thing in my life when all of this will be said and done, and I want to put it behind me and go forward, it’ll have this reminder.

And so it was really easy for me to say yes, sign me up for the lymphomas, bypass a study. I want to be a part of anything that, um, helps reduce those. And, um, so I, I think I was like the 50th or so person, um, to, to join that trial. Um, and like, I haven’t had lymphoma. Um, I actually go back at another month to make sure that everything is flowing properly through testing.

Um, but everything has been, um, really great. So it was something that I’m glad I said yes to it added a nominal amount of time to surgery, about 30 minutes, um, to actually have it done. And it was like a, like a stint, um, for my lymph nodes to kind of recreate that part of the highway that was now missing.

Um, and I figure, Hey, I’m a unique. And if the doctors can learn anything from the way that they’re treating me, um, I, I feel this sense that I it’s my duty to sort of pay it back so that when other people are in this unfortunate position, they’ll have gotten the benefit, um, from my experience.

[00:18:30] Adam Walker: Yeah. I mean, that’s the beautiful thing about clinical trials, right?

You, you often get benefit from it, but then you do, you are actively paving the way. For people to come behind you and have better outcomes for them as well. So, um, it’s such a, such a gracious thing for you to be able to do so, uh, last question, uh, and this is great. I really appreciate you just sharing your life with us.

Final question here, given all you’ve learned, what would you want to tell black women who are newly diagnosed? So

[00:19:00] Selena Smith-Albino: out of it’s an integrate point because we already have, um, odds stacked against us, um, as black women, um, in the healthcare industry in general. Um, so mortality rates are higher, no matter what statistic you’re looking at for black women in particular, um, Coleman actually had a blog recently that talked about the disparity and said, Hey, all things being equal, even wealthier, black women, um, same kind of status socially, um, will face higher mortality rates, um, given the same diagnosis as their, um, other white women that is, uh, eye-opening, um, scary and alarming.

And so if my being able to speak out and encourage other women to advocate for themselves, Um, to know exactly their family history, uh, and to encourage those around them, uh, in their family to, to speak on the things that, um, maybe they don’t talk about. But that is powerful. So that is that part of knowledge that you absolutely have to go in with this with, if you don’t then, um, the outcome is not great.

As black women. We have a tendency to put everybody ahead of her. Um, we carry the weight of so many things, um, that is statistically. You can look at anything, um, and have that reiterated again and again. And so inherently there are these pressures that we think, okay, I’ll take care of my family. I’ll take care of the things in my community around me and I’ll get to, um, taking care of myself, but that’s gotta, we have to think about this different.

None of those other things can happen if you are not healthy and in a great mental wellbeing state to be able to take care of yourself. Um, and so that is like part of what I think about, um, you know, encouraging black women to be able to do. Honest and Frank conversations with their doctors, um, change your doctor if you are uncomfortable, um, with someone or the, the interactions that you’re having get a new doctor.

Um, so, so know your patient rights and advocate for yourself, um, because only, you know, your body, um, as well as you do, others can make assumptions. Um, That we’ve got to like leave and, and really take the reins ourselves. Um, if we want to be here for our kids and, uh, our families and our communities, um, there is no person that we should be putting ahead of ourselves when it comes to our health.

[00:21:37] Adam Walker: That’s right. I mean, I think you said it, um, and maybe I’m paraphrasing, but I think what I’m hearing you say. That self care is really the first step in family care. And if you don’t care for yourself, you can’t care for your family. You can’t care for your community. You can’t care for your loved ones.

[00:21:53] Selena Smith-Albino: That’s exactly it. I I’m grateful that I was the person that exercise and that made that time, um, because it armed me for the battle that I faced with five months of chemo, surgery and radiation, um, coming out of that, I have osteopenia. So the step before osteoporosis. I would have had full-blown osteoporosis, had I not been in fighting shape, so to speak, going into this.

Um, so, so my body was like, okay, you’re, you’re ready for this. Um, so even without a diagnosis, right. Make that time, um, because you don’t know what’s around the.

[00:22:34] Adam Walker: That’s right. You don’t know what’s around the corner and time for yourself is so, so important. So, uh, Selena, your story is amazing. I appreciate what you’ve done for your family.

I appreciate that you’ve done this whole process and lived through this whole process with your community and with your family. And, you know, thank you for making us a part of that today and joining us on this.

[00:22:54] Selena Smith-Albino: Thank you, Adam. It was my pleasure to be here with each day.

[00:22:58] Adam Walker: Thanks to Ford Warriors in Pink for supporting the Real Pink Podcast. To learn more about their transportation grant program and other efforts to help breast cancer patients, visit ford cares dot 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