The Mastectomy I Always Wanted

Welcome to The Breastcancer.org Podcast, the podcast that brings you the latest information on breast cancer research, treatments, side effects, and survivorship issues through expert interviews, as well as personal stories from people affected by breast cancer. Here’s your host, Breastcancer.org senior editor Jamie DePolo.

Jamie DePolo: Hello. As always, thanks for listening. Our guest today is Erica Neubert Campbell, the author of The Mastectomy I Always Wanted, a memoir about her double mastectomy after being diagnosed with breast cancer. The book includes more than 50 photos of her mastectomy experience to give other women a realistic view of the surgery and recovery.

Erica, welcome to the podcast. I’m so thrilled to be talking to you today.

Erica Neubert Campbell: Thank you so much, Jamie. I’m excited to be here.

Jamie DePolo: So, if you’re comfortable, to start with, sort of give everybody some background, could you tell us when you were diagnosed and a little bit about your treatment?

Erica Neubert Campbell: When I was in my early 30s my mother had just passed away from breast cancer and so, I had already put myself in a position to get screened often, right? It was way earlier than the recommended age 40 for mammograms, but I advocated for myself to get those mammograms because I had seen what my mother had been through and I really was concerned about my own health.

And I say this because that advocacy probably saved my life. And what I mean by that is I was able to get those baseline mammograms, and over the years I had what I would describe as “scary” mammograms where they would call me back and say, hmmm… we think we see something, let’s do a little bit more, meaning I had ultrasounds, I had MRIs. And the thing that was really interesting is I had what was called calcifications which are kind of an early warning sign that something could be turning into breast cancer.

And so, my diagnosis came after so many years of being under such high scrutiny that when I was finally diagnosed, I finally got that call…I say finally because I almost expected it, calcifications were increasing and they said, let’s do a biopsy this time. And that was the first time I had the biopsy, that really gave me pause. So, I got a phone call from a nurse practitioner who said, “Are you sitting down?” And you know…

Jamie DePolo: Yes.

Erica Neubert Campbell: …that’s when you know, and she described to me an early-stage breast cancer, which at that point I had almost felt resigned to it, but I’m so glad that I caught it early because of that powerful advocacy to get those mammograms and advanced screenings early on. 

Jamie DePolo: Were you in your 20s or 30s when you started the screening?

Erica Neubert Campbell: I started the screening at my 30s and I was diagnosed in my 40s. So, it was a really long time, but again, I was able to have that baseline so that they could see change over time. 

Jamie DePolo: Sure. Sure. And was a double mastectomy recommended for you? Or did you opt for that for peace of mind? Or how did you come to that decision?

Erica Neubert Campbell: I’m so glad you said peace of mind because yes is the answer.

Jamie DePolo: Sure.

Erica Neubert Campbell: You know, as I mentioned, my mother had died of breast cancer and at the time she was also presented with a choice, and she was also diagnosed early stage. And at the time she had chosen a lumpectomy. Less invasive, it protected her sense of femininity because she got to keep her original breast, and that was a choice she made at the time. Now, as you know, she relapsed time and time again.

And so, when it came my turn, right? I was given the choice to rewrite that story, and so, with the choice between a lumpectomy and a mastectomy, it almost was an “easy” choice. And I put easy in quotes because it’s never an easy choice to choose to have such an invasive surgery. But yeah, it was something that I wanted to make sure that I had peace of mind because I never wanted it to come back. I never wanted that fear of relapse. And as challenging as that surgery is, I am so grateful because I have that peace of mind of knowing I don’t have real breasts any more so I can’t get breast cancer, I can’t really relapse. 

Jamie DePolo: Okay. Now, you mentioned your mother passed away from breast cancer, and I know that you are also the executive director of the Pinky Swear Foundation, which is a non-profit that offers financial and emotional support to families who have a child with cancer. 

So, I was thinking about it and on the surface, it seems like you’d be really familiar with cancer. But in my experience no matter how much you know, that call, that personal diagnosis, is still extremely shocking, jarring, anxiety-provoking. Could you just talk a little bit about that because you are obviously, you advocated for yourself, you’re very knowledgeable, but could you just talk a little bit about how you felt and how you processed that?

Erica Neubert Campbell: Yeah. I’m laughing, Jamie, because I sometimes consider myself someone completely surrounded by cancer. I hear about it at work, I’ve dealt with it, you know, with my mother, I was one of her primary caregivers, and I’ve had tons of people in my life diagnosed so, I speak “a very detailed vocabulary of cancer.” And yet when I got that phone call for myself, even though I think maybe I was secretly expecting and preparing for it, it still took me off my game, right? It still was extremely anxiety-provoking. It still brought up so many fears because, you know, I do hear everybody’s cancer story. It’s part of my job, it's part of my life. 

And so, you go into these really dark places very quickly and it’s really hard to get out. And I would say that while cancer is certainly involving many treatments and surgeries, I view it as a mental game, too. Because you have to get through, as you said, the fear and the just, the rocking of your world like, it’s turned upside down, and having to be on the other side. It was really challenging to tell my husband, it was really challenging to tell my two young children, to tell my dad, who saw his own wife beat this disease, and just, I think I got shocked about as much as I know about cancer and I’m surrounded by it from a career perspective, to say it and have to live it myself was ground shaking.

Jamie DePolo: Yeah. Yeah. Thank you for sharing that.

Now, why did you decide to write your book? Did you have problems finding images of reconstructed breasts, and I guess, so this is a multi-question question, and I’m wondering, too, like, when did you decide to write it like, you know, as you were going through treatment, when you were all done, you know, how did all that work?

Erica Neubert Campbell: Well, as I mentioned, I was working at the Pinky Swear Foundation when I was diagnosed and I write about this in my book. As soon as I announced it to my team, you know, we had a team meeting and we walked out of the team meeting, and a woman in my office that had just started with us, she was a consultant and I didn’t know her very well, and she pulled me aside and she said, hey, listen. I have had the same surgery and I know this is a little strange, but would you like to see my breasts? 

You know, and I’m thinking, oh my gosh. This is not professional, I don’t know this woman very well, she works in my office, but yes. Right? You know, like, of course, I do. And so, we found a bathroom far off the beaten path in the office, locked the door, and she takes off her shirt and she showed me her reconstructed breasts. I’ll be honest, they looked so real and so natural, and it gave me so much hope. I could barely see her scars. I mean, I literally, I said, “Are you sure you’ve had, are you sure these are fake? Are you sure these are reconstructed?” Because it was so encouraging that that would be my future.

In that moment, again, as we talked about it, my anxiety was so high I had no idea what I was getting into, and I’d asked my plastic surgeon and the surgeons, what is it going to look like, what’s it going to feel like? And they said well, you know, trust me.

Jamie DePolo: Probably not the answer you wanted.

Erica Neubert Campbell: Right. Exactly. But the gift that this woman gave me of seeing the future essentially, was so amazing, and I’ll be honest, I felt like it was so rare, right? It was like this serendipitous moment of a woman who chose to be so vulnerable in a time where she could have just looked the other way. And I was so grateful to that, and truly it changed my mindset. I was in that fear-induced anxiety place, and seeing her reconstructed breasts gave me this sense of peace like, it’s going to be hard and this surgery is not going to be easy, but okay, I’m going to get to the other side and this is what I’m going to look like in the future. 

And I would say that almost to that moment, because I knew it was such a rare experience, I was like, you know what? I should probably do this for other women. How can I do this? And I did, I did actually decide probably then just to take photos in case I ever wanted to share them, right? 

I will say not in that moment I was like, you know what? I’m going to write a book. No, it didn’t come that way, but I thought just in case I want to be able to share this experience with other women. And I will say after my surgery and after my recovery, lots of people reached out to me and said, hey, my friends were just recently diagnosed, would you talk to them? Hey, my sister has been diagnosed, can you connect with her? And so, I found myself texting these photos to women and saying, here’s what I’m talking about. I know that you’re not going to be able to, you know, see me in person, but here’s a photo.

And so, I was like, you know, a couple years after I was healed, I was like, maybe I should write about this. And so, that was really the inspiration for the book and why I felt so passionate about sharing these like, really vulnerable photos. There’s going to be some raw stuff in there. 

Jamie DePolo: Yeah, I’m curious. Did your plastic surgeon or breast surgeon offer any photos? Because I know some surgeons will do that, or was that not an option?

Erica Neubert Campbell: Not for me. I asked my surgeon about it and he said, you know, a lot of women are not comfortable sharing their photos. I was like, okay, fair enough. Fair enough. And it’s like, I’ve actually been in touch with my plastic surgeon now and he’s thrilled. He’s so excited to give this book to his patients. In fact, one of his patients just received an early copy because she couldn’t wait, and he felt it was so helpful, and that is the vision, is really just to be that resource that kind of walks alongside the surgeon, because I’m not a physician, I’m not a surgeon, but I can at least tell you it’s going to be okay.

Jamie DePolo: Sure. That’s so interesting to me because I’ve been at various conferences where plastic surgeons were speakers, and one of the session topics was, I don’t remember the official name, but it was basically fixing plastic breast reconstruction problems like, maybe there was a dog ear…

Erica Neubert Campbell: Yep.

Jamie DePolo: …or maybe, you know, things weren’t even.

Erica Neubert Campbell: Yep.

Jamie DePolo: And I’m a woman so I was in there. They didn’t let any men in, but it was kind of like what you described, where they lock the door and women got up to ask questions and they were just taking off their shirts saying, can you fix this? 

Erica Neubert Campbell: Yeah.

Jamie DePolo: And I feel like it was.. Obviously, they all didn’t have the best outcome they could have, but I feel like it was helpful for everyone just to know that they weren’t alone, like, having a dog ear is not, you were not singled out, it wasn’t this big thing. So, I can, I know that people, or women want to see that. So, part of me, I guess this is a long way of saying, part of me is surprised that some women didn’t want to share. And I get that. As you said, I get that because that is very vulnerable and private, but it’s kind of like you’re paying it forward because that woman was so helpful to you. So, I feel like those women might have been in the same place. 

I don’t know, I feel like everyone wants to know that because you’re not really going to investigate that unless it’s happening to you. It’s not something that you’re just going to look up just so you have that knowledge. 

Erica Neubert Campbell: Agreed, and by the way, I’m so glad to hear that women were doing that in your conference because yes, and my vision is to be that person. It sort of like, unlocks the door, right? And makes it okay, because I think the best way to support women is to normalize that experience, normalize the conversation. You know, I’m not expecting every woman to walk up to me and show me their breasts, but you know, I think the more we can make it okay to share these vulnerable things in a way that’s supportive? Oh, we’re all going to win that way.

Jamie DePolo: Absolutely. So, what was the writing process like once you kind of made that decision? It sounded like you had been taking photographs the whole time just in case, and you know, how long did it take you, and I guess I’m also wondering, too, was it difficult? Did it sort of resurface any of that initial anxiety that you had?

Erica Neubert Campbell: Oh, it was a fascinating journey, and as I mentioned and we talked about earlier, I was in that extremely fear-inducing anxiety place in the beginning and a friend recommended to me that I keep a journal. And it’s simply not to record what was happening, but more to process it. There were so many like, decisions, questions, fears, bad moments, good moments that were coming at me so fast I just, I had to process it and that was the only way I could go to sleep at night. 

It was really funny, I didn’t have a journal in the house so, I have a tween daughter at the time and all I could find was like, this turquoise journal with like, a locket on it, you know, that like, really doesn’t lock anyway?

Jamie DePolo: A unicorn.

Erica Neubert Campbell: That’s what I used, and I mean, I was writing in just tremendously like, fragmented sentences that made no sense, but just, I had to get the words out. And so, I, you know, proverbially locked that journal away. And so, when I decided to write, I actually pulled that journal out. I still have it, it’s hilarious. It’s, you know, it’s got glitter on it and everything. And that’s where I was like, wow. Wow. I couldn’t believe the things that I was thinking and feeling, and they were so raw. 

And it did, it kind of took me off guard because there’s a part of you that wants to put that away, there’s a part of you that never wants to read that again, and some of it was just ugly. At times I would like, almost push the pen so hard through the paper it would rip the paper, you know, whether I was in anger or in fear or somebody said something to me, like, you know, some people asked me some really not-so-great questions, like, about my mom or about my history. 

And so, it was just really fascinating to go back. But that’s how I used that as the basis for my writing.

Jamie DePolo: Almost like an outline.

Erica Neubert Campbell: Yeah, almost like an outline, and to remember, to remember those early days when things were not so rosy. Yeah, I talk about it now as if like, oh, it’s a breeze to decide to have a mastectomy. It wasn’t, and it was really interesting to remember that, and really humbling, too. And it gives me a ton of compassion. I get it, kind of fuels me even more to make sure I finished it. 

By the way, finishing is sometimes the hardest part, right?

Jamie DePolo: Sure. Sure. Yeah. Yeah.

Erica Neubert Campbell: Yeah. And so, I actually even enrolled some friends to be like, okay, guys, I’ve been working on…I actually wrote for two years…

Jamie DePolo: Oh, wow. Okay.

Erica Neubert Campbell: …because, you know, I work full-time and I would just write in the mornings before the kids woke up, and some days they woke up right when I did and it was, you know, it was really hard to keep it going. But I enrolled some friends to push me to finish it. I said, give me a deadline and hold me to it. But again, as this journey went on I did have more and more women reach out and say, hey, I know someone diagnosed, can you help? 

And so, that continued to fuel me to like, break through the fears, break through the excuses of why I, you know, could prioritize other things than writing, and I’m really glad I did because I’m feeling even more passionate about supporting women in this mastectomy journey. The more I get it out there the more women have said, this is what I needed, and I’m really, really proud of that.

Jamie DePolo: That’s wonderful. I can’t remember now, did you self-publish it, or how did the whole, once you had finished…you know, again, that’s something like, how do you publish a book? I don’t know. Do you just search that online? How did that all go?

Erica Neubert Campbell: Oh, my God, yeah. I mean, I’m not an author until now, but I didn’t know, either, and I just actually started talking to a bunch of friends about like, yeah, I’ve got this idea, now I’ve pretty much finished this book, where do I go? And I ended up with a friend who had worked on a book through her job and she recommended what’s known as a hybrid publisher. So, it’s kind of like self-publishing, but it is incredibly guided by experts. And so, I just feel so supported. Special shout out to the team at Wise Ink, and you know, they really guided a new author through the journey and through the process and understood that I wasn’t someone familiar with the industry or with the, you know, the ins and outs of how to use Amazon or how to design a cover. I benefited greatly from their advice.

And so, yeah. It is kind of self-publishing. I mean, right now, you know, their work is done and it’s up to me to get it out in the world, and I’m okay with that. I’m really grateful for that coaching and that advice, and again, it’s kind of a parallel to just the breast cancer journey is you can’t do it alone, you just can’t. 

Jamie DePolo: Absolutely. Absolutely. So, what’s the reaction been? I know the book hasn’t been out for an extremely long time, but it sounds like it’s been very good.

Erica Neubert Campbell: Yeah. I would say…as of right now I can think of at least 10 women that I sent an early copy, you know, before it was even printed, I just had a PDF. And one of them was a friend of mine from high school that I haven’t spoken to in 25 plus years, and she said that this book helped her so much. She kept going back to different sections trying to validate, okay, is this feeling normal, or is this part of the surgery normal, is this part of the journey normal? And there were several sections that she reread and reread over and over, and that, I’ve got to be honest, brought so much joy. 

And I said, this is really about supporting women and yeah, that was someone I went to high school with. And as I mentioned, my breast plastic surgeon recently recommended a woman to me that I didn’t know, right? Not someone in my network, and same thing. This woman’s like, oh my gosh, this is so helpful. Not only was it great for her, but it was also for her partner, her husband, who could know how to support her. I talk about sort of my husband’s journey a little bit and what he was experiencing, and it was also helpful for her husband to know what it’s going to look like. So that he didn’t have to be like, ooh, when he first saw her. It was already something he would be able to like, normalize.

And so, the reviews from women who are newly-diagnosed have been extremely positive, and it’s not just the photos, it’s also been the emotional validation of the fears and the anxieties. But again, the silly things some people say to you that you’re like, did you really say that to me? 

Jamie DePolo: Right.

Erica Neubert Campbell: And like, you like, sort of nod and walk away, and that’s okay, too. So, it’s just been…I’ve gotten a lot of feedback that it was really supportive to make everyone feel like they’re not alone and that they can trust the process, trust their physicians, and it’s going to be okay. So, I’m really excited to get this out in the world and again, my vision is to help thousands of women facing the choice of a mastectomy. 

Jamie DePolo: That’s wonderful. That’s wonderful. So, what is next? Is there some sort of sequel or is there another different kind of book coming out? Or no? I’m just curious.

Erica Neubert Campbell: Oh, no. Jamie, I’m laughing because I’m like, oh, this is very vulnerable for me to admit, I actually, I do have another book in the works.

Jamie DePolo: Oh, wonderful.

Erica Neubert Campbell: Well, I’ve been working on it for 20 years and you know, and the reason I’m hesitating is it’s about my mother’s journey.

Jamie DePolo: Okay.

Erica Neubert Campbell: And that one I have, you know, really wrestled with for a long time and I’m wondering if…now I get to go back and edit it. I finished it a long time ago and I let it sit on the shelf.

Jamie DePolo: Sure.

Erica Neubert Campbell: And now with my own journey behind me and this book out, I will be interested to see if I rewrite that story a little bit. I mean, it’s the same story but you know, I was really young. I was in my 20s when this was happening, when my mom was dying, and it’s really about me trying to find love, right? I was dating, I was out there living my best life, trying to start a career, dating at the same time that I had this secret -- I called it a secret -- that my mom was really sick and kept relapsing over and over again. And it’s about the dichotomy of, you know, having essentially living two lives. But maybe they’ll come together as one so, stay tuned for that book. 

Jamie DePolo: I will. Well, and you have a whole new lens almost, if that’s the right analogy, to do that story through. And so, yeah. I can imagine things…I mean, I’m not discounting your feelings, your feelings are your feelings and they’re all good, but the way you look at things now that happened back then could be very different, I would think.

Erica Neubert Campbell: Yeah. Yeah. Exactly. Yeah. So, stay tuned for that. So, for now I’m just working on getting the book out to as many women newly-diagnosed as possible. 

Jamie DePolo: Wonderful. Erica, thank you so much. I am so excited and I wish you so much success with your book. Obviously, it’s very much needed.

Erica Neubert Campbell: Thank you so much, Jamie. Thanks to all of your amazing listeners.

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