[00:00:00] Adam Walker: This program is supported by Amgen. Amgen strives to serve patients by transforming the promise of science and biotechnology into therapies for patients with serious illnesses. Learn more at Amgen.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.
Every person’s experience with mastectomies is different. Some people might experience extreme body dysmorphia following their surgeries and others might find the healing process easier. Concerns about body image and sexuality are common and can be especially hard for young breast cancer survivors, who find that regaining body confidence after a mastectomy can be difficult. Today’s guest was diagnosed at age 36 with stage IIIC triple-negative breast cancer and because of ongoing treatments, has not yet been able to have a breast reconstruction or even have expanders put in. Here today to talk about how that has affected her physically, emotionally and mentally is LaToya Bolds-Johnson. LaToya, welcome to the show!
[00:01:12] LaToya Bolds-Johnson: Thank you so much for having me. I really appreciate it, Adam. Glad to be here.
[00:01:16] Adam Walker: I’m really glad to talk to you. This is such an important topic and it’s something that we don’t really dive into enough. So thank you just in advance for sharing your story with us. And let’s start there.
What is your story? Walk us through how you knew something was wrong and then what your diagnosis.
[00:01:34] LaToya Bolds-Johnson: Yeah, absolutely. Well I found a lump last summer, early last summer. Didn’t think much of it. I had just stopped breastfeeding my baby just about five months prior to me finding the lump.
So I really thought that it was just a, you know, like a milk C you know, just an enlarged milk gland from breastfeeding. And I, you know, continued to feel it a couple weeks longer. My, I had my husband to check it out and, you know, I was like, all right, well, let me just, you know, just get it checked out, get a son or whatnot.
So fast forward you know, had a virtual visit and my physician ordered a mammogram and a sonogram and went to my appointment. And when I showed up the radi. You know, they kind of just stopped me in my tracks. They didn’t wanna do the mammogram because they were like, oh, you’re 36. You don’t need this.
You know you know, you just stopped, you know, started asking me questions and I told him about the breastfeeding history and, you know, he really didn’t wanna do the mammogram. He was like, no, we don’t need to do that. We’ll just do the Sono. And I just pushed for it. I was like, no, I, you know, my physician ordered it.
So let’s just go ahead and do what I’m here. And so. Had the procedures done. And I noticed on the images because I am a physician assistant by trade. I work in emergency medicine. So I know how to read some imaging and interpret some images. The reading actually was interpreted as a Gail, which is a benign SIS, as I was thinking, as you know, all along.
Yeah. I’m 36 young, otherwise healthy don’t have any other, you know, chronic conditions or whatnot. And so a couple days later I get another call from a different radiologist who did an overread, who performed an overread. And he said, Hey, you know these images look suspicious in the margins, so let’s get a biopsy.
And when he called me my heart kind of sink, because I’m like, I know what that means, you know, as a medical professional too, I’m like you know, this could be something else, you know? So still, you know, still I’m nervous about it, but I’m still like remaining hopeful and positive. I’m like, you know, I’m still thinking that it’s still a SIS, I’ll go in ahead.
A biopsy done. They’ll be able to aspirate fluid and I’ll be done. Well, you know, went to the biopsy and the radi, the physician was not able to aspirate any fluid. And I knew at that point that we were dealing with something that wasn’t just benign. I was terrified at that point and you know, fast forward a few days later on July 26th, 2021, when I became diagnosed, I received a portal alert on my.
For my health, like my medical chart and just clicked on it. I was actually at work. I was working in, ER, I was working a long shift that day, a 12 hour shift. And I was actually in the middle of draining a breast access. Can you believe that? And got the Porter alert notification on my phone and I just read, I clicked on it and read my results because I was told that I was gonna get a phone call.
Right. So. When I clicked on a portal alert notification, I wasn’t thinking that this would be something that’s gonna change my life forever. I’m really thinking that this is gonna be, you know, a follow up benign report and maybe it is just assist and, you know, and not something malignant. And I found that at work I found out at work the, about my cancer diagnosis, a triple negative breast cancer diagnosis through my phone.
No one called me. You know, no one called me, like they said they would, I found out through an alert notification on my phone. It was the most horrible day of my life. I couldn’t believe it. I just could not believe that I was. I thought it was an error initially. Yeah. So I panicked, but I really thought it was an error.
I’m like, this has to be wrong, you know? And so I had my attending physician who was working with me that day. I had him to look at it too and pulled it up on the laptop. And affirmed, they said the same. So now I’m panicking. I’m trying to reach someone at the physician office and it was towards the end of the business day.
So I wasn’t able to reach anyone except a nurse on call. And she was like, yes, that’s what the pathology report shows. And I’m like, no, someone is supposed to call me. And, you know, I left work because now I couldn’t think straight. Yeah. I pull up in the driveway. My husband comes out and he just fall, he collapses on the ground because he knew at that if we knew something was wrong.
I’m never home early. I’m always, you know, I work 12 hour shifts, so I’m never home early, so right. He knew something was wrong and fast forward. You know, I wasn’t able to reach a physician that day. I got a phone call, 8:00 AM the next morning to say. You know, very, in a very dull and in sensitive manner, a physician called and was like, you know, yes, you have triple negative breast cancer.
So like, this is correct. And he’s like, yes, you will receive a follow up call from the breast center. And that was it. Very insensitive. And I just could not believe that, you know, patients can find out their lifechanging results in this matter, like who wants to receive an email, you know, or an alert notification for something like this.
This should be something that a physician should be counseling you on. You either come in person or virtual or even a phone call to be. Sensitive to let people to let patients know about a cancer diagnosis.
[00:06:45] Adam Walker: Yeah, absolutely. Wow. That’s shocking.
[00:06:47] LaToya Bolds-Johnson: So that’s how I found out.
[00:06:49] Adam Walker: And so, so I that’s a really terrible way to find out. And I’m sorry. I’m so sorry to hear that. So yeah, let’s talk about treatment which I hope hopefully is gone a little smoother. Tell us about how your treatment’s been so far and what treatment you still have.
[00:07:03] LaToya Bolds-Johnson: So I finished 16 weeks of, you know, chemo. You did that. I did that 16 rounds of chemo, the theri mic and the red devil, the Cy, the cytoxin and all that.
I responded well to chemo. My tumor, I was originally diagnosed three C and so that means that it has spread to all of multiple lymph nodes. And so. At the end of chemo my tumor had decreased in size from five and a half centimeters down to one centimeter. And so, and then March of this year, I had a bilateral mastectomy with 26 lymph nodes removed.
That’s a lot, that’s a lot. And so it, it has me at risk for lymphedema and I have to wear compression sleeve and, you know, do therapy with that or. And I also just finished 25 rounds of radiation as well in June. And now I am in the clinical trial here in Washington DC area. And it, the trial is to basically it’s kind of like prophylactic chemo with prophylactic treatment because I still had residual disease at the time of surgery.
So the standard of care for someone in my position is still to receive you know, a oral chemotherapy. For like six to eight cycles plus immunotherapy. So I’m in a trial and it’s using CT DNA to also detect that my DNA was negative. And what that means is that my circulating tumor cancer cells were not detected in my bloodstream at this time, which is a really big thing.
It’s kind of like a liquid biopsy that shows like, Hey, you have no cancer cells need your bloodstream. So that’s a really big win. And I’m, you know, just remaining hopeful about the future and hope that once this is done, these six months are done with the chemo pills and immunotherapy that I’ll be done forever.
And then I can move on to. Getting my body back.
[00:08:53] Adam Walker: Yeah, no that’s great. That’s it sounds like you’ve got a good attitude about it too. So yeah that’s really fantastic. Makes all the difference. So, so I’m curious you’re in the medical field, as you mentioned, I know you’re the mother of three young children.
How hard has it been to be a patient when you’re accustomed to be the one. Taking care of other people.
[00:09:12] LaToya Bolds-Johnson: That has been the most difficult part of it all. And I’ll be very honest with you. It makes me feel very vulnerable. I’m not a good patient. I mean, as most, you know, medical professionals, we’re not good patients, you know we minimize everything.
I just never thought I’d see myself on the other end of the spectrum as being the person being cared for. I was always the caretaker so it’s been very difficult for me. It’s a little bit better now, but still like it’s just, it doesn’t seem natural. It doesn’t seem real.
It really hit me like a ton of bricks that I was actually a patient when I had to get my port placed and I didn’t even wanna stop working. I’ve worked up until the day before chemo, even with my port placed. Wow. In the ER. You know, at this point, you know, I’m immunocompromised with cancer and I’m still walking into COVID rooms with PPE and still seeing patients.
But, you know, that made me feel somewhat normal, you know, take still taking care of patients. So its been very difficult with me being a patient. It’s a whole new world.
[00:10:21] Adam Walker: Yeah I I can just only imagine. But I admire that you were working so hard up until the last possible minute.
That’s kind of amazing. Yeah, so, so I also understand that because of your treatments, you’ve not been able to get a breast reconstruction or expanders. Can you tell me a little bit more about that?
[00:10:37] LaToya Bolds-Johnson: Yeah. So you know, I met with like three surgeons, you know, and basically they all advised that because I needed radiation because I was three C and it had spread to multiple lymph nodes that I that in their opinion, getting expanders in.
At the time of the mastectomy, people tend to have more complications with radiation and can cause you know, it, it can cause contractures. Of the expanders, because the expanders are like basically temporary breast implants. And so the radiation you’re being zapped and sort of in, you know, in so many words, you’re being zapped every single day with all of these radiation beams in the targeted areas, and it can make the implants get hard and in, or other more you’re more disposed to infection.
With a radiation, your skin becomes more fibrotic or thickened. And so they had concerns with that. And so it was a, it was advised that, you know, based on their history, based on what they’ve seen, what complications with other patients like you, you probably shouldn’t just get the expanders and people do better without the expanders, as they’re going through radiation.
As a result. I never envisioned what that would look like until after surgery. And I saw, I couldn’t, I didn’t wanna look in the mirror initially for a while for a few days. And when I saw myself, I just I can’t explain how it just it weighed on me emotionally. It was a very it was just very difficult.
[00:12:11] Adam Walker: Yeah. So, I mean, talk, please talk more about that. The body dysmorphia and how. Has impacted you and continues to impact you?
[00:12:19] LaToya Bolds-Johnson: Yeah. I mean, it’s like the way I can describe it. I mean, you know, for someone in general terms, whether you’re male or female, it’s like, imagine someone chopping off both your legs, you know, And you have to now function and dress and, you know, still move on as you would normally every day.
But now you’re missing two vital parts of your body. And for me having your breast completely removed from your body it signified for me that, okay, this was kind of like something where it was being taken away from my family identity and my womanhood. You know, my breast nourished my children.
I, I breastfed all three of my girls. You know, my babies are two, five and seven, so I have young children and I breastfed all each and every one of them for, you know, about a year each. So I took pride in that, you know, I was able to pass on life and immunity to my babies with my breasts, which is the natural thing to do.
So it was taken away from. It affects my bonding with my children now, too, because they, you know, typically would like lie on my BOM or lie on my chest or whatnot. They’re breastfed babies. So there’s, you know, that’s a maternal bonding that we have. And now when I was at home initially recovering from the mastectomy.
Just a short few months ago. Of course they couldn’t lay on me. And then once I got better and the bandages were gone and, you know, whatnot, they were still scared to hug me. Still to this day, sometimes they, you know, they don’t want to, oh mommy, you have a boo. You know, you know, that’s what they say, mommy, you have a boo or my five year old, she says your brownies are gone.
She calls my breast brownies, you know? So. You know, she’s like your brownies are gone, you know? And so it, it affects that and it really hurt my feelings. I’m like, oh my God, my children don’t wanna bond with me anymore, you know? Yeah. And so that’s, you know, that’s another factor in it and, you know, I’ll try to like, just put a pillow on my chest, you know, to try to help soothe me.
And so them, and that works a little bit. I still have residual tenderness that will probably be permanent in chronic. You know, even if my husband hugs me today, like he can’t hug me too tight, you know, because of the, you know, the area and just the residual tenderness. So it affects emotional bond with your family too.
I’ve had to wear prosthetics now, like if I’m going out, but those things are so heavy. Those bra the prosthetic bras, they, I mean, those things weigh like a hundred pounds. It feels like it’s not as comfortable. You can’t wear certain, you know, dresses or tops that you’re used to wearing because you now, you don’t have a natural cleavage line, you know?
Right. So I’ve had to like, You know, just have to modify and revise. Everything have to be mindful of everything, certain things I can’t wear. And even now with it being summertime and us trying to go on vacations with, you know, family and I, you know, certain bathing suits I can’t wear, I don’t look the same.
I didn’t wanna, I had a complete meltdown. When my husband and I went on to a trip to Cancun a few weeks ago, because of the way I looked in my bath suit. Like I just, it’s a lot. It, no one prepared me for that. I didn’t know, like no surgeon said to me, you know, Hey, we might need to put you in some mental therapy.
Ahead of your mastectomy, because this may affect you, your body image, you know, with them, with you not having those expanders in. And yeah, so it’s, , it’s been a lot.
[00:16:01] Adam Walker: That sounds like a just tremendous amount. And I, you know, and I appreciate what you shared about you. Just even that image of your children not being able to sort of lay on top of you right.
Like that it never occurred to me. And that’s such a, that’s such a normal thing, you know, that you’re missing. I really appreciate you sharing that. I’m curious if you’re able to share are, are you willing to talk a little bit about how it affected your marriage and how that’s.
[00:16:26] LaToya Bolds-Johnson: Yeah. I mean it really disturbs my self-confidence, you know, my husband is, has been my rock and he’s very supportive and I would not be going, you know, would not be thriving and surviving without him. But he, you know, he told me he, he was like, he didn’t even want me to get the reconstruction because he’s like, he just doesn’t want me to go through another, you know, surgery after everything I’m still going through.
But. You know, he’s saying that he doesn’t care, but, and I appreciate that and I love him for that, but for me, I still have to look at myself in the mirror and I don’t like looking at myself in the mirror. And so it, it really disturbs my confidence and like, it makes me sometimes I don’t want him to touch me or I don’t want him to see me, you know, You know, without clothes on.
Cause like it really disturbs my own. Self-confidence, it’s not,
it’s not even about him. You know how he feels about me. I know he loves me, but it, you know, if you don’t feel good about yourself, you’re not gonna be you know, you’re not gonna be confident. And so it. I feel like it interferes with our intimacy, you know, because of my confidence, not because of him.
Yeah. And so that’s, you know,
that’s why I said like, you know, if I just wish I had some type of warning or some type of mental preparation, psychological or emotional preparation you know, ahead of this mastectomy. And I really think that should be mandated if you’re not gonna be putting expanders in, you know, for a woman to have to go through that and, you know, and have to experience the after effects because you’re not prepared for it.
You don’t know what to expect. You don’t, you know, it is just, you’re going through the emotions and it’s very difficult. And I would tell people cancer is not a physical diagnosis. It affects every aspect of your. It is a big psychological and the emotional diagnosis as well. It affects everything, your family, your finances, your work life, everything.
[00:18:38] Adam Walker: Yeah. That’s so true. That’s so true. Yeah. So, so, wow. I mean, it’s just so heavy. I and I really, I can’t thank you enough for just being vulnerable with me and talking to this. I know it’s I know it’s difficult. So two more questions. What are some things that you’re doing to try to cope with everything you mentioned, you know, prosthetics, is there anything else that you’re doing that’s sort of helping you work through these things?
[00:19:04] LaToya Bolds-Johnson: Well, I did get, I did you know, find a therapist. So I really, you know, do believe that, you know, anyone with a cancer diagnosis should have therapy. But I think that. I guess, you know the, one of the things as a woman, you can do, you know, or that made me feel better. Like, you know, Just still trying to, okay.
Let’s just strap on the prosthetic bra and put on the dress that you can wear and, you know, still go out and have, you know, lunch or, you know, brunch with girlfriends or whatever. Like it took my mind. It took my mind off the fact that, you know, I’m the person here with so many physical ailments at this time.
Like it just took my mind off it or, you know, finding your happy place if I could. Near a beach every day and listen to the waves. That’s what I would do. So we just came back from the beach and I just need to hear the waves, you know, like that is my happy place going to the beach or, you know, I try to you know, I try to push through my resilience with, through my children, you know, and just trying to do things with them that I continue to do.
Like, you know, whether it’s bacon or with them or going out. So we have a garden, you know, With tomatoes and, you know, all kind of fresh vegetables and fruit and just trying to find those things to escape,
[00:20:27] Adam Walker: you know, that’s good. That’s good. Yeah. Sounds like you’ve got some great things you’re doing and some great people around you. That’s so important. So last question then do you have any final advice for our listeners? Possibly someone who’s been newly diagnosed.
[00:20:43] LaToya Bolds-Johnson: Ooh, I would say the first thing is be kind to yourself. that would be the first. You know, the first thing and just know it’s not your fault. It’s not anything that you did.
You’re not being punished. You know, I know you’re gonna go through those emotions of like, why me, but now I look at it as you know, this is what. You know, God wanted me to go experience in my journey and to be a testimony to other people. And now I look at it as, you know, not only has this made me a, I feel like it’s making me a better person and more sympathetic and more understanding, but I feel like my story is you know, I’ve been able to reach other women too and have other women, you know, under the age of 40, who looks like me, you know, to say, you know, you need to check your TIS, you need to check your breasts, you know?
You may have a lump there that’s cancerous. It doesn’t matter if you don’t have any known family history or it doesn’t matter if you’re 55, because this is. This is not a typical breast cancer. What people need to know is that breast cancer is not a typical old lady’s disease. It’s. Affecting more and more younger women every day.
And younger women are dying, you know, at alignment rates as well, especially in African American population. So so that, to that woman who is newly diagnosed just have some grace be kind to. Know that you’re going to get through it, you know, be your own self advocate and also join the support group.
You know that’s gonna help you. Being amongst other breasty is not so much that what we have to say for another woman who’s in my journey or in her survivorship, because we understand each other because we’re going through the same similar things, you know, So I definitely say that would help as well.
[00:22:34] Adam Walker: Yeah. Wow. Yeah. That’s good. That’s good advice. Well, L Latoya I just wanna thank you for being vulnerable about something that’s so difficult and so personal. I know it’s, I know it’s not easy, but I hope that you know, that you’re an inspiration and that you are impacting so many people through sharing your story.
And I, I just, I cannot thank you enough for taking the time to do that with us.
[00:22:57] LaToya Bolds-Johnson: Yeah, I appreciate it. I appreciate the opportunity and I hope that, you know, I was able to resonate through at least one person a day, then that’s all worth it. So I really appreciate the opportunity.
[00:23:11] Adam Walker: This program is supported by Amgen. Amgen strives to serve patients by transforming the promise of science and biotechnology into therapies for patients with serious illnesses, learn more at Amgen.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.