Real Talk: Nipple Loss From Breast Cancer

[00:00:00] Adam Walker: 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.

This is Real Talk, a podcast conversation where we’re digging deep into breast cancer and the realities patients and survivors face every day. We’re talking openly and honestly about just how difficult breast cancer can be, from being diagnosed to selecting the right treatment plan, to living day to day with metastatic breast cancer, and living a life after treatment ends.

In today’s episode, we’ll hear the personal stories of two women who had to make the decisions about their nipples because they both needed surgery to treat their breast cancer. Syreeta Coleman opted for a surgical technique that spared her nipples in the surgical process. Corina Klein also chose nipple sparing surgery, but experienced complications and ultimately lost her nipples to surgery. She now has tattoos in place of where her nipples would be and has started a nonprofit organization that provides tattoos for breast cancer survivors who lose their nipples. Ladies, thank you for being here today to share your experiences and help listeners understand the choices you’ve had to make and how you’ve coped along the way.

Syreeta, let’s start with your story and then Corina, we’d like to hear your story as well. And then I’ll let you have a discussion from there. 

[00:01:20] Syreeta Coleman: Sounds good. Well, hi, I’m Syreeta. I was diagnosed at 40. I had just turned 40. Like I was diagnosed a month after turning 40. I was like, welcome to 40. Can I get it? So it was my mammogram that I went in for that actually caught it, but that was my third mammogram, year after year. So I wasn’t expecting anything. I’m like, okay, this is nothing. But when you get the call the next morning, it’s something. So I was like, “what’s going on?” It was cancer. I was diagnosed with invasive ductal carcinoma. I had two tumors. So one was stage one and one was stage two. So my doctor, when we had the discussion about my surgery, I was like, “I’m okay doing a double mastectomy because if I’m gonna have scars, I’d rather the scars to look alike. Not one looking, like it was and then the other one like that.”

But he thought I would be against it until we did the biopsy and the scans and things like that. And he was like, “Miss Coleman, I think you’re right.” Because I said, if we do that, I didn’t have big breasts. So I will pretty much have no breasts. So let’s just go ahead and remove them both. So that’s what I chose the nipple sparing. Now for me and my situation, my doctors did offer that like from jump. They were like, don’t worry. This is an option that we can do not saying that it will take its place, but that’s the goal. That’s what we’re going to try to do. Well, it was successful. So I had the double mastectomy with expanders then found that I did have to do chemo.

So I did four rounds of chemo TC and then I had twenty six rounds of radiation. When you have radiation, you have to wait at least six months or plus before you can have reconstruction, but I pressed it in there because deductibles and stuff ended the year and I was like, “no, whatever you have it. I need it.” So I actually had surgery right before Thanksgiving in November of 2020 and I had the plat. So did that and it was a success. And yeah, that’s pretty much my story. 

[00:03:26] Corina Klein: Oh, my goodness. So, I was also in my 40s. I was diagnosed at 43. Same as IDC invasive ductoral carcinoma. Stage two, grade three was mine as triple positive. So, I had to do chemo, and then I did as well for a double mastectomy. And my first, at first I did choose nipple sparing because, probably like you or I don’t know, we’ll find out, I wanted to feel as normal as possible. So pretty much think of it as a shell. Like, all the insides are gone, but the outside is there. So that’s why I chose what I did, went through my surgery after chemo, I ended up getting skin narcosis. My skin was dying. So they had to go in and they had, like, my nipples were dying. So the skin below it had to be removed along with my nipples. So I always, I joke and I say, I went from a D to a Brazilian B. That’s what happened. My whole, whole life I was congested and then I’ve got these. I’m like, what is this? but yeah, and then the expanders, which that was a process by itself. 

[00:04:35] Syreeta Coleman: Yeah, the expanders were not nice. I was ready to get them out. 

[00:04:40] Corina Klein: Exactly. And then the, needle that they used to fill was like this huge thing. I’m like, “is that for me?”

[00:04:44] Syreeta Coleman: You know what? I woke up and mine were filled. I did not have to go back for any fillings. 

[00:04:50] Corina Klein: So yeah, my first one I woke up, they were full of air or whatever they were. But then when they had to most of my skin and put new expanders in, they were like, it’s like a balloon empty.

Like they were all like crinkly. It was like the weirdest. It was so weird to look. And then, they had to slowly start expanding them just because the skin was like so little. So it was just like little fill at a time over a couple months just to get them ready for what they could put in for implants.

And then I had my reconstruction. I did do implants and had that done and then I had my tattoos done. And because my skin didn’t stretch enough or it had to take, it took a long time for it to stretch properly. My shoulder, my shoulders had froze. I ended up going for my final reconstruction of May of this year, or last year, 2023. So I had the temporary implants removed and new ones placed. So, and now I feel great. I feel pretty normal-ish now compared like, 2020 to 2023. Three years, who’s counting? 

[00:06:00] Syreeta Coleman: Yeah, and with my surgery, with my reconstruction, I’m still adjusting. Like, I went to do, I’ve done Pilates recently, and yoga, but I’m still not as comfortable as I was in my previous body, because with the flap, it’s taking the fat and making the breast.

I love the breast and stuff, but I’m trying to get used to the abdomen part. Because it feels different because it’s still numb. 

[00:06:28] Corina Klein: Oh, and when was, when did you have your surgery? 

[00:06:30] Syreeta Coleman: I did it in 2021. 

[00:06:31] Corina Klein: Wow. Okay. Yeah. So it’s still, and your breasts, do you feel, do you have sensation now or you still have no feeling?

[00:06:39] Syreeta Coleman: Good question. And people ask me this all the time. I said, if somebody else was touching them, maybe I would know the difference and I haven’t had anybody else touching but my doctor, but, no. 

[00:06:50] Corina Klein: Okay. Yeah, I have no, I had no feeling at all except for the recently I got like the top part I can, if I like tap it, I’m like, “Oh, I can feel that.”

[00:06:59] Syreeta Coleman: Yeah, like I think more up under my arm than I think I do in my actual breast. So like, yes, I have my nipples, but if you’re talking to me and one just starts to pop up, that means, I have no feeling, like now my nipples, they just get hard, just randomly, just by themselves. Yeah, and you have no control over that.

[00:07:19] Corina Klein: Yeah. All right. Yeah I was gonna ask about what it’s like having your nipple, is obviously I didn’t get to keep mine. So I don’t know that difference because I only know like I’m flat, the one thing before I got my tattoos is I didn’t need to wear a bra with anything because you didn’t see anything through. And then now when I, now that I have tattoos, if I wear a white shirt, I do put something on.

[00:07:43] Syreeta Coleman: But see, that’s what I’m saying. So before, I didn’t pay attention. It wasn’t like that, but like now it does it on its own and just randomly. So like now I try to be more cognitive in what I’m wearing and stuff like that. Because I don’t want people to think that I’m, you know, so it’s- (laughter) 

[00:08:06] Corina Klein: I know that’s the one thing I don’t miss. I’m just like, it could be cold outside and you would not know. 

[00:08:10] Syreeta Coleman: Exactly! 

[00:08:11] Corina Klein: I don’t know with, because you did the flap surgery, do your breasts, are they cold all the time? Because mine are like ice cold.

And I think it might be the implants. So that’s probably why. “Oh, it’s like, Oh, pressure.” But then you’re like, “Oh my God, that’s freezing.”

[00:08:26] Syreeta Coleman: So when I first went to see my plastic surgeon and I made that note, I said, I do not want any, I just. I just did it. He was like, you don’t have to. And he was like, but the procedure that we can do is going to be more intense, the recovery time and stuff.

So I just mentally prepared myself for that because that was my only other option besides implants. No, they feel normal now, they are heavier for me because he took all my fat and made them and I didn’t have much before. So, I’m like still trying to adjust and people who know me, they don’t want to offend me, but they like, Syreeta, you got a little bit more going on than you did before.

Thank goodness for that. But, the expanders, that’s what I can imagine the implants will be. Because, like, when I was called, the expanders were like rock hard. That’s why I was ready to get them out. 

[00:09:17] Corina Klein: It’s the weirdest feeling, because it’d be like The dead of summer. And if you’re you just brush your arm, you’re like, “Oh, well, I’m cold, but I guess it’s built in air conditioning.”

Where you are trying to try and make the best of it, right? 

[00:09:30] Syreeta Coleman: Yes, that’s all we can do. 

[00:09:31] Corina Klein: That’s right. But your doctors, they gave you the, they went through the options like with nipple screen, did they go through the risks? Like, there’s a possibility. 

[00:09:39] Syreeta Coleman: Yeah.

[00:09:40] Corina Klein: Same with me and I still chose. And I think looking back, I would probably still choose. 

[00:09:44] Syreeta Coleman: Absolutely. Why not? 

[00:09:46] Corina Klein: Yeah, it’s the, the one thing that-

[00:09:49] Syreeta Coleman: Well, I did get nervous. Because I work in health care. So they were like, “Syreeta, now, if they preserve your nipples, it’s not to say that they’re going to actually be on your chest after your mastectomy, they might reattach them somewhere.”

“And I’m like, reattach them where?” It’s like they can reattach them here to preserve them. But I don’t know how that would have been for me mentally to know that my nipple is on my side. I don’t know how I would have handled that. But thankfully, I didn’t have to worry about that. 

[00:10:16] Corina Klein: Yeah, no, I’ve never heard that. That’s the first I’ve heard that. Oh my goodness. I don’t think I would. 

[00:10:21] Syreeta Coleman: I learned a lot. I learned a lot. 

[00:10:23] Corina Klein: That’s, yeah, it’s, crazy. And now, like, probably you said you’re at the gym and it feels differently.

It’s like this whole, it’s like learning all over again is my biggest thing, and every day is like, something new. I’m like, “what is this? 

[00:10:38] Syreeta Coleman: Are you a meds? 

[00:10:39] Corina Klein: I’m, on Letrozole. 

[00:10:40] Syreeta Coleman: Oh, me too. 

[00:10:40] Corina Klein: Yeah. How do you like it? 

[00:10:42] Syreeta Coleman: So first I was on anastrozole. 

[00:10:44] Corina Klein: Okay. 

[00:10:44] Syreeta Coleman: And I, just couldn’t, anastrozole would like literally have my joints and my muscles, like I felt so heavy. And I, had to have a talk with her and I was like, “this is just not working.” So she said, let’s try Letrozole. And so I’m fine with the Letrozole. 

[00:11:00] Corina Klein: Yeah. I’ve been on Letrozole almost three years now, so I have two years left. I think that’s the same, well, between Anastrozole and Letrozole, it’s been three.

[00:11:08] Syreeta Coleman: Yeah. Three years. Do you get Zometa? A lot of women don’t know about that. 

[00:11:13] Corina Klein: What is it? 

[00:11:13] Syreeta Coleman: So I get Zometa, I go every six months because I’m on Letrozole. And it’s to help preserve your bones and your muscles. It’s an infusion. 

[00:11:23] Corina Klein: I’ll have to ask about that. I see my oncologist next month. 

[00:11:25] Syreeta Coleman: Yes.

[00:11:26] Corina Klein: They send, I go for a bone scan every two years and my bones 

[00:11:29] Syreeta Coleman: Right. 

[00:11:30] Corina Klein: So my bones, my first scan were like osteopenia, and then my second one, I don’t know what I did, but they looked great. They said I’m all right. So yeah, I’m like, “oh, it’s like weird things.” You’re just like, ” ummmmmmm” and then every time, my oncologist, every time I see her, I’m just like, “so, have they come up with anything new for us?” Like, to practice? Later on, right? Because that’s the one thing breast cancer when you’re done. You’re done. There’s no follow up. It’s like, “here you go, take your pills and you’re on your merry way.”

[00:11:56] Syreeta Coleman: Right, and that’s the same thing I said like I mean we I don’t get mammograms. You don’t get mammograms No, so what is the maintenance plan? Afterwards like yeah, Do you see what I’m saying? That’s, the question I have yet to get an answer. 

[00:12:11] Corina Klein: Same. I don’t think, no, I don’t think anybody has the answer for it. I think things change constantly and I am thankful that I went through it in 2020 versus like 1980 because like medicine has come so far but there’s just so much that, more that can be done. Like, look at your surgeries, the surgery you did is like new, I know one girl that had it done and it was very successful. It was, yeah, it’s just, I think as we go, hopefully more things come along for us because- 

[00:12:42] Syreeta Coleman: Wait, let’s rewind right quick. How, did you find your cancer? 

[00:12:45] Corina Klein: So , mine was actually missed in my mammogram. I found it three months later in the shower, not knowing it was cancer. The doctor, we didn’t even think it was cancer. And then they biopsied and it turned out to be cancer. So I was a huge proponent before. Anything before cancer, like of self awareness, knowing your body just because you’re the only one. Your doctor doesn’t even know your body like you. So I’ve always been a very like, this is, this doesn’t feel right. This is, a huge, advocate for myself because I’m like, nobody’s going to do it for you. So that’s how they found mine. 

[00:13:21] Syreeta Coleman: Okay. Because with me being diagnosed in the midst of COVID 2020. They kept trying to say I had COVID and I’m like, I do not have COVID. I took multiple tests and everything like it was, excuse me, it was negative and they kept saying this. So I just said, I was okay, so I could go back to work. Well, then my mammogram came and my surgeon said he believes that was the beginning of the tumor starting to grow.

Because I just felt like a blockage because I’m an asthmatic, but I kept feeling like it was some pressure. That’s what I kept feeling because every feeling physically wise was okay. But internally, it was like a blockage or something and it was the beginning of the tumor. 

[00:14:01] Corina Klein: Wow! 

[00:14:02] Syreeta Coleman: Yeah. So if I didn’t keep saying this is not COVID, who knows how long it would have went. So that’s the importance of knowing your body. 

[00:14:09] Corina Klein: Exactly. That’s the big thing. Even though I’m a breast cancer or breast cancer survivor, I’m always pushing even my girlfriends. I’m just like, “you know what? Did you do your self exam this month? Did you do this? Have you gone for your mammogram? Have you like, right?” They’re like, “you sound like a broken record.” I’m like, yeah, “well, one in eight.” 

[00:14:29] Syreeta Coleman: And don’t forget. 

[00:14:29] Corina Klein: That’s right. Exactly. So it’s, Nobody wants cancer, but some of us have to. 

[00:14:37] Syreeta Coleman: Absolutely. We have to have it to spread awareness, unfortunately. 

[00:14:40] Corina Klein: Absolutely. And, there’s medicine for a reason. 

[00:14:44] Syreeta Coleman: Correct. 

[00:14:44] Corina Klein: That’s my biggest thing. I’m like, thank goodness for it. I guess the last thing would be like, what, have you learned about yourself and your relationship with your body through your breast cancer experience?

[00:15:00] Syreeta Coleman: To pay more attention, that’s a good one for me to pay more attention because. I, of course, I empathize and have compassion for women who don’t have their nipples, but, and even with the chemo, losing the hair and stuff, that all didn’t really bother me. It sounds funny. What bothered me was losing my nails.

I was not prepared for that. I lost my nails, my fingernails and my toenails, but everything else I was like, man, okay. But for me to pay more attention to my body, because I used to just shower, get dressed, lotion. I really didn’t, but now I have to, but I also have things going on that makes me have to pay attention. It just doesn’t feel the same. 

[00:15:40] Corina Klein: Exactly. Like there is, it’s the new normal that we have to adapt. 

[00:15:44] Syreeta Coleman: Correct. 

[00:15:44] Corina Klein: And that’s the thing, like you can’t go back. And I think that was the biggest thing, that I Learned or taught myself was like, I kept saying, Oh, I’m going to get back in to like a pair of jeans, or I’m going to get back into, and I’m like, you know what?

Throw those away and just focus on the new you and fall in love with that. Like because I had, it’s like saying goodbye to yourself. It’s like having a funeral. I don’t know. That’s the only way it’s saying goodbye. And leaving it like that and then embracing the new you and what comes with it. Like, so much has changed in my three years and I’m sure with you. So it’s just how you go about doing that. And that’s absolutely, that’s the takeaway and live life to the absolute fullest and do not take anything for granted. 

[00:16:35] Syreeta Coleman: Don’t sweat the small stuff. 

[00:16:36] Corina Klein: Exactly. That’s me. Let me know, because before I used to go off the handle on anything, I’m like, no, I’m like, just live it up, live it and love and put love out there and positivity and healing thoughts. Like, believe me, I can, I have negative thoughts too. I’m not like 100 percent poly-positive here because there’s days where I’m like angry and it’s okay to be angry, but you know what? You get angry and you move on and you just think, of all the good things in your life that, you know. The people that I’ve met along my journey, the people that, so that I’ve said goodbye to that were like toxic in my life and it’s just the price.

[00:17:11] Syreeta Coleman: Absolutely, that was me. I had to clean house because it’s me or you. I’m sorry. I’m always going to pick me. I’m sorry. 

[00:17:17] Corina Klein: Absolutely. Just appreciate things just a little bit more every day is the key. 

[00:17:23] Syreeta Coleman: Absolutely. 

[00:17:24] Adam Walker: Well, ladies, this has been a really good conversation. I appreciate you being very real. I was going to ask you as a final question, any final advice you have, but you’ve already covered that, which has been pretty great at the end.

I love hearing that. So instead, I’m going to ask you this. As you’ve gone through this journey that a lot of people just struggle to understand, what is one thing that has helped you through it? Doesn’t have to be the main thing, but what’s one thing that’s helped you through this journey?

[00:17:54] Syreeta Coleman: For me, I would say self love. However you want to say self love or self care. Again, choose you. Like, you have to because at the beginning and end of the day, all you have is you. So if you have to tell somebody no, because you’re not feeling it, because a lot of people don’t understand, we have a new lifestyle. Some things we used to be able to do, we just can’t today. Like, whether if it’s physically, mentally, or emotionally, I can’t pour into you that way today because I have to pour into me. 

[00:18:23] Corina Klein: That’s great advice. I 100 percent agree. 100 percent agree. And me, my big- my kids, everything I did was just with them in the back of my mind being like, you know what? I want to be here to see my first grandchild. I want to be here for this. So I will do whatever it takes to be here for my kids and my husband because they are my life. they are the reason I fight every day and the reason I get up. So it’s great. 

[00:18:49] Syreeta Coleman: I agree. 

[00:18:50] Adam Walker: That’s such good advice again, and such a good thing to get you through everything.

So thank you so much for sharing your stories with us today. Thank you for joining us on the show today. 

[00:19:00] Corina Klein: Thank you!

[00:19:00] Syreeta Coleman: Thank you for the opportunity.

[00:19:02] Adam Walker: Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit realpink.komen.org. And for more on breast cancer, visit komen.org. Make sure to check out @SusanGKomen on social media. I’m your host Adam. You can find me on Twitter @AJWalker or on my blog adamjwalker.com