EP253 – Suzanne Fonseca and Christy Burbidge – 11-20-23
[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.
[00:00:17] This is Real Talk, a new podcast series where we’re going to break down the stigmas and feelings of embarrassment and talk openly and honestly about just how difficult breast cancer can be – from diagnosis to treatment to living with metastatic breast cancer, to life after treatment ends.
In today’s episode, we’ll hear from two women who both required surgery to treat their breast cancer but made different decisions about what happened after that surgery. Christy Burbidge had a mastectomy on her left side and decided not to have her breast reconstructed. Suzanne Fonseca opted for reconstruction after her breast surgery but experienced one complication after another, and multiple surgeries later decided to have her implants removed for good.
There’s no right (or wrong) decision when it comes to selecting the treatment that is right for you. And no choice is without risks or wondering after the fact if you made the right decision.
I’m excited to welcome both of you to the show to share with listeners about how you made the decision to have reconstruction or not and what you’re feeling about that decision today. So Christy, let’s start with you. Tell us about your diagnosis and your decision for a flat closure.
[00:01:27] And then Christy, when you’re done, Suzanne, I’d love for you to introduce yourself and walk us through your story as well. And then I’ll let you talk.
[00:01:34] Christy Burbidge: Sure. So, I was diagnosed with DCIS almost exactly a year ago. It was actually my surgery was November 1 of 2022. And I didn’t have any symptoms. This was just found on a mammogram that I was actually six months late for due to COVID. So, I always think, oh my gosh, if I waited any longer, would it have been invasive? So initially, I was told that I would most likely end up with a lumpectomy and radiation because that’s the most common treatment for DCIS.
[00:02:11] But that turned out not to be the case. And I was told I would need a mastectomy, and like you said, it was just on my left side. And when I heard this, I was alone at the time because I just happened to get the call when I was pulling into the hospital parking lot for something. And I, you know, I froze up thinking both about the mastectomy and also what could potentially come after that.
[00:02:39] You know, like chemo because I know I didn’t really want that. So, I was equally freaked out about both things. And then, of course, I went home later and started Googling everything because that’s what I do. So, fast forwarding to the appointment with my surgeon. So that was maybe about a week later or whenever it was.
[00:02:57] And, and then, you know, you know, we just went over everything, and then she suggested I set up an appointment with a plastic surgeon because we could do the reconstruction all in one surgery, and we would go from there. And so I, you know, I, so I did it because this whole time. I just wasn’t really like thinking too much about it.
[00:03:17] So I always thought, just assumed I would do the reconstruction because I thought that was just what you do. It was never really presented, as you don’t have to do this. So I thought reconstruction was more simple. I thought that they basically shifted your fat around and constructed a new breast that way, which I know sounds ridiculous.
[00:03:37] Like, I didn’t know it was an actual implant that they put in. so I just, you know, scheduled the. Appointment with the plastic surgeon and didn’t really think too much about it. So, the consult lasted about an hour, and I could barely get through it.
[00:03:56] So, and this is just the consult alone. My spouse was with me, and we watched a video of what it would involve and how they would basically have to grow fat on my back and then rewire the blood supply. And I just, like, almost passed out just hearing it, and I was just kind of in shock. So… Then, but I kind of like, in the back of my head, I kind of still wanted to do it because I thought, like, it was just something that you did.
[00:04:23] The surgeon was also talking about how it’s silicone, I think, and it’s something that you might have to replace potentially every ten years. And she also mentioned something about the possibility of an illness of unknown origin. I think that’s what it’s called. I might be getting that wrong where you would start to feel sick but not really know why.
[00:04:43] And it could be from that. And then I thought that would totally be me because once I get something in my head, I would think it’s that, so then we, so then my wife and I went down to the hospital lobby, and my mother was waiting for us, and for about an hour, we just talked, it through, and then I just ended up thinking, I don’t know if I can do this, just the idea of a foreign object in me and just the idea, it just seemed like a lot of maintenance, but then I, but then, but like, you know, there’s no good alternative because it’s like both, alternatives stink.
[00:05:18] Like, you know, you don’t want to have nothing, but I also didn’t want to have that. So then we, at that point, started looking up, breast prosthetics and how that’s a thing you could do. And another thing that kind of stuck out at me was, During the consult, when the surgeon showed me the before and after photos, and, like the after photos, it didn’t seem all that compelling.
[00:05:42] Like, it just didn’t look like, but again, then I just kept going back to, I don’t want to have nothing either, but there’s no, like, like, you got to choose. Right? So then my next appointment was with my original cancer surgeon, and that was to talk about scheduling the mastectomy. And she said, okay.
[00:06:01] We have to coordinate a date with a plastic surgeon, like, she was just assuming I was going to reconstruct and I had to actually say to her, no, I just want the mastectomy. That’s it. Flat closure. And then she kind of looked at me like, she didn’t really believe me. And she’s like, are you sure? which kind of struck me because if I had
[00:06:20] made the other decision, what I have felt as questioned? It just was kind of, kind of put me on edge a little bit. And then that made me question myself all over again. And then finally, when she saw I was pretty adamant, she just said, Okay, you know, okay. But I was very put off by, just by the assumption that I would do it.
[00:06:38] And it, sort of felt to me like borderline reverse ageist, if that’s even a thing. Like, cause I was in my early 40s. You know, like so called young. I feel like if I were in my 60s or 70s, would she pressure me as much? It just felt, or would she just let me be? So I went ahead and just did the flat closure surgery.
[00:06:58] The recovery was about a month. It was pretty painful. and then about two months later, I was ready to go to get my prosthetic and I went to Lady Grace, which is great. And one thing that kind of bothers me that if I were, I think if I were a little bit younger, like 10 or 15 years younger, I would, I might have felt more pressure to get the surgery.
[00:07:17] And I might have just done it. Because again, I, was super on the fence about it. And one last thing I’ll say is that one saving grace. is that I could still change my mind, like, it’s, it is never too late. You can, like, I, you know, I could wake up in a few years and decide I, I do want to do reconstruction.
[00:07:37] It’s probably, it would have been better to do it during the initial surgery. But that, like, but just having that in the back of my head, it’s like, okay. you know, cause I, I do have body image issues when I’m unclothed. Cause, you know, it does bother me to have nothing there. But probably not enough to. get reconstruction, but just knowing that I can makes me feel a little bit better.
[00:08:02] Suzanne Fonseca: Okay. I’ll introduce myself. my name is Suzanne Fonseca. I was diagnosed with, invasive ductal carcinoma on June 16th, 2017. That’s six years ago. I’m 44 now. they found my cancer after having, I went for my normal mammogram because of family history, because my mom was diagnosed at age 50.
[00:08:26] we had a lot of cancer in my family. My dad’s mom had breast cancer, which ultimately, killed her. my mom had breast cancer, my grandmother had uterine cancer twice. So, my regular mammogram came back normal. I had, my real breasts were dense and fatty, basically. We’ll see you next year.
[00:08:50] so my sister and I go to the same, gynecologist, and she said, listen, let’s do the BRCA test. So with the BRCA test, it tests the gene mutations for all different types of cancers. We did not test positive for the BRCA mutation. However, we tested positive for the MUYTH and the, and another mutation.
[00:09:12] So ultimately that led me to go for an MRI mammogram. They found a tumor. So, then I was diagnosed. So with that diagnosis of having invasive breast cancer, my breast surgeon at the time, who happened to also be my mom’s breast surgeon 20 plus years earlier. I didn’t realize that until we actually got into the room and got the diagnosis.
[00:09:39] But, she recommended to do a double mastectomy. So I took that, okay, let’s do a double mastectomy. I went and found a plastic surgeon who she ultimately works well with and spoke about different options. So, because I had years ago, I had, spinal fusion surgery and I had c-section, they couldn’t use like my stomach muscles and area to build two new boobs so they had to do the flap. So I had a double mastectomy, and the same day I had my first reconstructive surgery, which was a latissimus flap reconstruction So basically the your breast surgeon comes in removes both breasts flip you over They cut your back muscles and slide them through the front go to new boobs. Implants immediately You know, I thought at that time I was 38, I was still young.
[00:10:36] Why not? I still want to feel like a woman, look like a woman. I had probably in total in the, in these six years, I just had my last surgery, August 29th, where I had everything removed. so I have basically, a flat closure. they took out everything, the latissimus muscles, the they cauterized my nerves.
[00:11:01] They took out, the implants. This was my third set of implants that I had surgically put in, taken out, put in, taken out. I became fully encapsulated, the highest grade encapsulation. it was very painful. So this past six years, I’ve dealt with, out of 10 fingers, seven of my fingers, nerves, I couldn’t feel them, so I can only feel three fingers.
[00:11:25] Body aches, pains. They never said it was breast implant illness. However, you know, you do tend to Google and you search and you, become your own advocate because you’re the one going through this. You’re the one that feels it. Sometimes you feel, I don’t know if you went through the same thing, like when you’re talking to your plastic surgeon or your breast surgeon, or even your oncologist, you, feel that you’re telling them how you’re feeling and what you’re actually going through, but they say they understand it, but no one really knows unless you’ve been through that.
[00:11:56] So that’s why, you know, being a part of so many different, support groups and even with Susan G Komen talking to the ladies all the time, like it was just so, important to me to constantly talk about it, get it out there, but yeah, it was, six years and I would, I. Probably would have definitely changed my mind if I knew I was going to go through all of this from day one.
[00:12:22] I would have just went completely flat closure back then. . So I’m 44 now, I just had the last surgery, they removed everything, so now I look like basically a pre pubescent, like, 9 year old. There’s nothing, I’m, I joke around, I say my body looks like Operation, you know, where you, the game where you pull all the little organs out, but I just have scars all over.
[00:12:43] So, but I’m, the only thing that I care about, I don’t care about that anymore, having Breasts or, looking like a woman. I mean, I had to have a hysterectomy from all this. So at this point, I woke up today. That’s most important. it’s a lot difficult now to try to shop for clothes, but you know what?
[00:13:01] It is what it is at this point. It’s as long as I made it and I’m here to talk about it and to constantly be, an advocate for being your own advocate with this whole breast cancer journey, then you know what I’ve done my job and for some reason, that’s why I was picked to do this or, have this illness. but it was a, definitely a long process, a lot of surgeries, but it’s just made me stronger. So.
[00:13:32] Christy Burbidge: The first surgery that you described where they, like went on your back and then flipped you over that, was never presented to me. But I wonder if it was, if I just would have done it because it doesn’t sound simple, but it sounds simpler than some of the other ones. Like if I would have just been okay. But that’s…
[00:13:50] Suzanne Fonseca: yeah, it was, I mean, it was a 12, almost 13 hour surgery. So yeah, they removed your breasts. And then flip you over and I saw I have like massive scars on my back on my front. I had six drain tubes for the first surgery. I mean that it was rough. I mean, I consider myself a pretty strong person to go through all of this.
[00:14:11] But if I knew now what I knew, if I know now, if I knew then what I know now, I probably would have just went with the flat closure immediately because you know what? You want to look and feel like a woman. but at this point. I’d rather not be vain and just deal with it. So, yeah, it’s just, you know, it’s a stigma.
[00:14:35] So they, you have to look like a woman. You have to be this way. But my husband was like, whatever makes you happy, as long as you’re healthy and happy and you’re alive, then we’re good.
[00:14:45] Christy Burbidge: No, yeah, no, definitely. And then I also, it’s funny what you were saying about, looking like the, operation game, because I kind of, because it was like, literally, it’s hard to describe for someone who has, it’s just like nothingness.
[00:14:56] Yeah. And I just feel kind of lopsided and then, and part of me also thinks that if I, had needed the double mastectomy, if I might’ve been more likely to do it, to do the reconstruction, because it’s like, because, mentally I sort of had an easier time in the sense that okay, I’m still holding on to part of me, like I have one boob. Like, even though it’s not this big, so I think like that kind of factored in too a little bit.
[00:15:22] Suzanne Fonseca: But, I will say like, you know, after having, going through breast cancer, having, you know, when I did the reconstruction the first time and then I had to go back in and had, I went through three sets of implants, you do. You get a lot of people that are like, Oh, it’s just a boob job.
[00:15:40] You know, you’ll, be fine, but you, but it’s not, it’s different. I, they had to remove everything. They, I didn’t have, I just had basically two implants, two boobs, but they weren’t boobs cause they had to remove my nipples. So it was just, why bother at this point? I was done after six years. I’m done dealing with the pain, the uncomfortableness. It’s just, it’s not worth it. The juice wasn’t worth the squeeze on that one.
[00:16:04] Christy Burbidge: Yeah. I’ve had people say that to me too. Originally like, Oh, just almost like, and I know they didn’t mean it like this, but almost like it’s a good thing. Like, Oh, you’ll get a boob job out of this. Like, or like, I’d run off and just do it. It’s like, no, it’s not. It’s not that simple.
[00:16:20] Suzanne Fonseca: Yeah. Yeah. And I feel kind of like you feel like you said, if you were younger or maybe if you were older, you would have been like, Oh, okay, no problem. they would have, your surgeon would have been like, Oh, sure. You don’t want to have a reconstruction? That’s fine.
[00:16:35] But I feel like that as well, because at 38, I was like, Oh, you know, in my head, I’m like, okay, these are all the options I have to weigh. But I kind of felt like, This is what you’re, they want you to do. But I understand how I, it makes you feel like you want to feel whole. but definitely with, it’s not their, they didn’t tell me I needed to do this, but I kind of felt more swayed to do the reconstruction and, oh, it’s going to be fine and, you know, it’s going to hurt, but you’ll be okay. But I, totally understand how you feel with that.
[00:17:12] Christy Burbidge: Yeah. Yeah. That’s how I felt. Cause it wasn’t really explicit pressure. It was just sort of implied. And then. Yeah. Yeah. And then I feel kind of ridiculous. I sound like a conspiracy theorist, but then I think, you know, cause I think of the whole, you know.
[00:17:28] Like big pharma and how, you know, it’s like, and it’s, like a moneymaker too, and it’s like, okay, here’s the surgeon. Like, you’re just going to do it. And now I, and I, know that’s not, that wasn’t their intention, but that’s always like kind of the back of my mind, like, it’s just something that you’ve got to do because that’s just part of it.
[00:17:43] Suzanne Fonseca: Yeah, sure. But, I definitely learned that you through this whole six year process that you have to be your own advocate. like even with insurance, because I just, like I said, I had my last surgery August 29th, And I’m already getting bills saying, Oh, the insurance isn’t paying it because it’s an elective surgery.
[00:18:04] Like I didn’t elect to have this. That’s a big thing that I feel that definitely as a, woman with breast cancer, you have to seriously draw the line with insurance companies and constantly explain yourself, which is like a broken record, but you have to say. I didn’t ask to have breast cancer. I didn’t ask to go through all this. This is what, you know, what the surgeon recommended. This is what the route of, the course of action that we were taking to, become whole again. So, it’s, been a battle.
[00:18:36] Christy Burbidge: Right, because if it was any other cancer, they wouldn’t question it.
[00:18:40] Suzanne Fonseca: Yeah, but because it’s implants and… Oh, reconstruction.
[00:18:44] Christy Burbidge: Have you regained… because you said that you lost some feeling in some of your fingers? Have you regained that?
[00:18:50] Suzanne Fonseca: I’m starting to feel a little bit. I mean, it takes a while for your nerve, endings to start like regenerating, but I’m starting to actually feel a little bit, I don’t have such constant pain. My implants. That was my third set that was moved, removed. They became so hard that you could knock on them like you’re knocking on a piece of wood.
[00:19:10] That’s how hard the pain, the scar tissue. It was just, I, it was horrible. I slept on my back like I was like in a coffin for all these like years. It was just miserable. Couldn’t lay on my side. Yeah. Nobody tells you that, you know, when you’re going through all this.
[00:19:26] Christy Burbidge: Yeah. Wow. Oh, I’m sorry you to go through all that. It’s oof.
[00:19:34] Suzanne Fonseca: It’s all right. It just makes you stronger. It’s just a speed bump and everybody deals with, things differently. And if you know what they make their own decision, I’m not here to sway anybody to say you need to do this. That, but I will say at 44, I am so much happier now that I don’t wear a bra.
[00:19:51] I joke around with my husband. I said, we could go to the beach now. I don’t even have to wear a bathing suit top because I have no chest. And he goes, I don’t know about that, but you know, we always joke around. Like I could just walk around.
[00:20:02] Christy Burbidge: You could blend in because some women are just really flat. Me on the other hand, who’s like almost a seat up and what I’m just, so I have to.
[00:20:09] To wear something in my bathing suit and that’s why that’s like the one downside where I’m like, oh, I don’t and sometimes I mean, wait, I have my own pool. So I just swim without it. I don’t care, but when I’m in public, I don’t want to walk around like that too. So that’s the only, so there is that, I, so I have to get a special mastectomy swimsuit and it comes with a pocket. Where, and it stays in fine, but I’m always kind of worried, like if I’m at the ocean, giant wave, and I’m trying to get out, I think, oh, is this, was this really the best idea? But yeah.
[00:20:42] Suzanne Fonseca: But I will say that, like, you know, you, have, you said your wife, I have my husband, my family, my son, like, it’s just, it’s so important to have that support, your family support. Having cancer, I’m sure, you know, really you see the true colors of people. You probably lost some friends and gained some friends. It is definitely, eye opening.
[00:21:05] Christy Burbidge: Yeah, for sure. So, yeah. Yeah. And then, yeah, I’m just thinking what you said about being married, and I think, you know, cause we’re, cause I’m also 44, so we’re at similar points in life, like that you, and this kind of ties back into thinking if this had happened 10 or 15 years ago when I was single, like would that have impacted my choice if I was still dating and thinking about what the other person’s going to think. But now, like, it doesn’t really matter. I mean, it doesn’t matter as much when you’re married. You know, when you’re married, but it’s, yeah.
[00:21:35] Suzanne Fonseca: Yeah. And just, this is how I deal with it. I’m always like, Oh, you know what? I’m tainted goods. No one’s, you know, you’re stuck with me now. And I, you know, my husband is just, he’s amazing.
[00:21:45] He’s my rock. And he’s seen me on my lowest points and he’s seen me on my highest. So, he is absolutely, he just makes me laugh because I’ll just come out with some random stuff and he’ll be like, okay, yeah, sure. Tainted goods. Got it. No problem. And, you know, and he, always says, you know, I don’t love you because of your boobs.
[00:22:03] And that’s not the reason why. So because I don’t really don’t care if it’s there or not. And I’m like, I know. But it’s, definitely a hard thing to, for yourself, right. So like physically, when you see yourself in the mirror, like, Oh, like, Oh, sometimes you get just like, what? But you know, some, yeah, but sometimes you’re just like, you know what? I’m here. That’s all that matters. I woke up today. That’s the most important.
[00:22:32] Adam Walker: So this seems like a good time to ask What advice would you have for a woman that is starting the process of deciding what they’re going to do next. are they going to have a mastectomy? Are they going to have rebuild, you know, reconstruction or not?
[00:22:51] Christy Burbidge: Should I just do your research and that you’re really your own best advocate. So just really look and see what’s out there.
[00:23:00] Suzanne Fonseca: I also agree. I will say my, breast surgeon, she was amazing. When she gave me my diagnosis, she gave me a book and said, do not go on the computer. Do not Google anything. She was read this book.
[00:23:13] That right there was probably the best information because yes, you want to be your own advocate. You want to research it, but I am kind of old school, research it, going to as many surgeons as you want to, seeing their pictures, and then you personally have to make that decision. Don’t let anybody decide for you or sway you towards, you need to do this, you need to do that.
[00:23:38] You honestly have to do what. You think you want and how you feel because that’s the most important thing in the end. It’s about how you feel. So.
[00:23:49] Christy Burbidge: Yeah, and I do think it’s interesting how when it comes to being swayed It’s only in one direction that I can’t really imagine a surgeon pushing a woman to go flat. Like that’s kind of hard to imagine saying. Oh, yeah, we’ll just take it off like that yeah, that usually it’s in the other direction it’s the assumption That you will do reconstruction. So I think that alone kind of says something.
[00:24:14] Adam Walker: Yeah. Well, I think that’s good advice from very wise women that have trod a very difficult path. And so, you know, I just want to thank you on behalf of this community for sharing your lives and your stories and just being very real with us. So that hopefully, you know, other people can learn from your example. So I really appreciate you both joining the show today.
[00:24:39] Suzanne Fonseca: Thank you. Appreciate it.
[00:24:41] Christy Burbidge: Yeah. Thank you.
[00:24:48] 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 at Susan G. Komen on social media. I’m your host, Adam. You can find me on Twitter at @AJWalker or on my blog, adamjwalker.com.