[00:00:00] Adam Walker: The Real Pink Podcast is supported by Wacoal. Wacoal supports Komen through Fit for the Cure and other initiatives, which have raised over $6 million to date. Wacoal will donate $5 to Susan G. Komen for every person who receives a complimentary bra fitting and purchases a regular price Wacoal or b.tempt’d bra at a Fit for the Cure event. Wacoal will also donate $5 to Komen for every person who completes the steps to digitally size themselves with mybraFit. Are you wearing the right size bra? Find out! Visit fitforthecure.com to learn more.
[00:00:46] 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.
[00:00:58] 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.
[00:01:14] Today I’m joined by two survivors who experience menopause at an early age due to breast cancer and treatment. At the time of their diagnosis, Deb Song and Elvira Velez could have carried children. The treatment for their cancer, and subsequent hysterectomies, however changed their lives forever. Ladies, you’ve both been through a lot. Early menopause and the inability to have children due to breast cancer treatment is something many women experience.
[00:01:40] Thank you for being on today’s show and sharing your stories. So Deb, I’m going to turn it over to you to kinda lead our conversation. Maybe you could introduce yourselves, tell us a little bit about your stories, and then we’ll just go from there.
[00:01:54] Deb Song: Thanks, Adam. It’s great to see you again. I’m Deb Song. I’m actually the Senior Director of Public Relations and Communications here at Susan G Komen. I am a five-year breast cancer survivor and I just recently underwent a hysterectomy for uterine cancer. Love to learn more about you, Elvira. If you can tell me a little bit about yourself.
[00:02:18] Elvira Velez: Sure. Well, I’m a regional director of catering for a hotel company. That’s what I’ve done. all my life, work in hotels, which is not a job for the faint of heart. So having cancer and doing that at the same time was definitely not an easy task. I’m a BRCA2. So I have undergone 10 surgeries in the past four years. In one of those surgeries was a hysterectomy, which led to an early menopause and inability to have children as well. And I would say that from all the surgeries, that one has been the hardest. In terms of the side effects and, you know, the psychological pressure and, you know, to having to do it.
[00:03:06] I wanted to wait but I couldn’t you know, my doctor said like, either you do this or you know, it’s not going to go well. So I had to. But after that, I had absolutely no idea this was going to be this hard. I think it was even harder than, you know, when I was taking chemo. I mean, the side effects are just very unexpectedly hard. I don’t know. How about you?
[00:03:35] Deb Song: Yeah. It’s kind of interesting because I didn’t realize how emotional I would be about having it. It’s one thing like, I don’t know how, well, how old were you when you were diagnosed with breast cancer? Can I?
[00:03:50] Elvira Velez: 35.
[00:03:51] Deb Song: You were 35. I was like 39, about turning 40. I think, you know, when you find out you have breast cancer in that moment it was like, Oh. And then I got bombarded with questions about, oh, do you have children? And I was like, wait, what? Children? Do you want children? All of these questions that flooding at you and the doctors are then all of a sudden telling you, go make an appointment with this specialist you have to freeze your eggs, you should do this, you should do that. And I was like, I’m overwhelmed as it is about my breast cancer diagnosis. So like at the time, you know, it really didn’t dawn on me. I always thought I had time, right? I focused on my career. I’m like, I want to meet the right person. I want to be with the right person… like I’m going to. You know, have a child because I want the child. All those things.
[00:04:37] And so in that moment when you get that breast cancer diagnosis, it was kind of that moment of like being overwhelmed and like, can I actually bring a child into this world? Especially having a diagnosis. You know, that sort of thing kind of floods in your mind. And I had such a small window before my double mastectomy and having time to undergo treatment, I just felt too overwhelmed to even think to freeze my eggs, that sort of thing. And so I underwent treatment and then it was brought up to me like, Hey, there’s nothing to worry about now, but a hysterectomy could be in your future. You know, something that you might consider. Because of the type of syndrome you have and the genetic disorder you have. And I can only take things at a certain amount of time.
[00:05:25] Elvira Velez: Are you at BRCA2 as well?
[00:05:26] Deb Song: No, it’s Cowden syndrome, so increased risk of breast cancer and increased risk of uterine cancer. So I had like extremely high risk of breast cancer, so they watched me for a year. That shoe dropped and then the second one dropped like literally this year, like earlier this year. And it’s kind of interesting because like you go through treatment, you do all of those things and like you get no reprieve, right? So after I went through breast cancer, it was like, okay, I can breathe now, right? And then it was just like, okay, I’m starting to feel normal again or whatever my new normal is now and feeling good about myself.
[00:06:07] And then you go for that routine checkup, you know, because you have to continue follow up and you’re hoping for the best. And they’re like Deb, we’re seeing abnormal cells, you know, it, it could be time. And I was in denial. I was in deep denial for a year and thank God, like I know most people don’t say thank God for COVID, but COVID gave me the reprieve of facing what I probably would’ve had to face a year ago, you know? And so, you know, during COVID didn’t really have those checkups. But finally when I went, they’re like, we can’t put this off any longer, Deb. There’s enough in your biopsy that shows it’s time. Luckily I had a really supportive, amazing partner.
[00:06:47] He’s been great, and he’s like, your health is more important than a “what if.” And you know, I kind of broke down crying. I still do because it’s that, it’s one thing when you decide to not have children because you decide for yourself. It’s another thing when the decision is taken away from you.
[00:07:10] Elvira Velez: Yeah. I, you know, at 35, like you, you think you have a lot of time. I’ve had very little time to process what happened to me because I was 117 pounds, super healthy, spinner every day. And then one day I found a lump, and then after that BRCA2, my cancer has 75 proliferation rate. You know, you have very little chance of survival. What are we going to do here? So I was in a race for survival, you know, I was like, I’m going to do this. I’m going to do whatever, you know, it needs to be done to make this go away. And then I feel that after that, I just haven’t stopped. I have had so many complications afterwards, so many surgeries. And, you know, to your point, I remember I told one of my oncologists, like, I just want to be normal. And she was like, well, normality is subjective.
[00:08:08] And I have a very good doctor, which is a behavioral oncologist. And she was telling me like, you know, you have to let go of the person that you were. You’re never going to be the person before again. But that’s what we want to do. You know, we want to go to those times where we didn’t worry about mortality or about how much time we have left or about, you know, what can happen, you know, after tomorrow. Because now I have, you know, all of… I mean, I’m a BRCA2, would I want to pass this to my child with a 50% chance? Probably not. You know, I wouldn’t desire this in anyone. But there’s so much to be said and I know that you recently did the hysterectomy, but I have already a year. And when I started it was fine, but the symptoms afterward Igot into a biophysical depression because your body still wants to have your organs and is still ready to have children.
[00:09:08] And when you take them away, they’re like, okay, so what is happening? So your body fights it. And I just got into this very deep black hole. I didn’t know what happened. I know there was something essentially wrong with me because I wasn’t that person. I was a very happy, driven person. And then I became a completely sad human. I was like in mute. I had no feelings whatsoever. No feelings of joy. No feelings of sa…Like it was, I was a mute. That’s all that was there. And I didn’t know at the time that it was because of the lack of hormones. So I had zero estrogen. I had a hysterectomy, and I was taking hormone blockers. So I had zero hormones, and I didn’t know how bad that was because not only you have zero hormones, but there’s also no solution. Because I can’t take hormones because that could potentially kill me.
[00:10:07] So the only solution which would be take hormones I can’t do. So, you know, what can I do to feel better? You know, I have… I’m a fighter for myself and my own health because of everything that has happened. So I have not stopped going to every single one of my doctors. Like there has to be a solution. And when I went to see my other doctor, she was like, well, you’ll think that in 2022 there’s a solution, but there’s not. So there’s so many women going through this psychological, you know, strain that it is to know that you’re not going to be able to have children,not because you didn’t wanted to, but because one day you lit…I literally walked up to my doctor and he was like, okay, I told you you could wait until 43, but you can’t. So yeah, you need to make that choice right now.
[00:10:57] Otherwise, I’m pretty sure you have cancer. We need two of this today. And I mean, when they put it that way, you’re like, okay, well let’s do it. But you know, when you go through so many changes, you know, I was, again, 117 pounds, I gained 20 pounds. And to me that’s like I lived my entire life being one way and then I completely shifted to be someone new. And it has been a very hard acceptance process. Very hard, you know… a road of me trying to find who I am now and you know, the things that were so valuable for me before can be that valuable to me now.
[00:11:39] So essentially the person that I always was and the values that always drove me to be are no longer there. So what drives you now? So it has been a very challenging road for me, and I wish that someone would’ve told me that this is how it goes, because no one did. You know, when I was, when I first went to chemo, I had a chemo talk and they told me this might or this might not happen. And you know, everybody takes it differently. But I was a little bit prepared. But then this one? There was no dogs. It was just like, either you do this or you know, you basically can’t. You know, you’re basically going to, you know, die. So it’s like, okay, I made this super hard choice, but it doesn’t stop being hard.
[00:12:30] So I’m just, you know, trying to… I’m waiting until the day comes where it’s a little bit not as hard. And I’ve said I’ve come a long way from where I was. You know, I think medications that I’m taking now are working better. You know, I’ve tried, I’ve had to put a lot of effort for myself because I was chronically tired. That’s one of the symptoms of not having estrogen. So, you know, doing more exercise, all of those things. So again, for me, it’s still every day at discovery of who this person is, how I can, you know, go back being a happy person that I used to be before, not the same person, but the new version of that person.
[00:13:12] Deb Song: Yeah. I mean, it’s tough when you’re younger or you even look younger. You know, I’m on the more younger side of the spectrum, but if you think about it, it’s still average 39, 40, that, that marker point, you know? You bring up a really good point that really hit me. I remember the day of my double mastectomy. I went in, I wrote a letter to myself kind of saying, it was kind of a eulogy to my old self saying like, it’s time to say goodbye to who you were and kind of curious of who I’m going to come out. Who I’m going to be when I come out. And what I’ve really learned about that, like especially with breast cancer or you know, and just the aftermath of breast cancer, there is really no end.
[00:13:58] Like people… you’re in that period where you’re going through treatment and you’re like, when you finish, it’s a moment of like relief but a moment of terror. Because it’s like, now what? We all go through it. I think we all have that. But it doesn’t stop there, right? But like what I’ve learned about myself when I was battling breast cancer, it was like, okay, I have to do this. I have to do this so I can, and I kept planning my life and kept going and I, my goal was to be the person I was before.
[00:14:24] Elvira Velez: Oh yeah, same here.
[00:14:26] Deb Song: Yeah, right. It was always that goal, but it was the day of my double mastectomy. I knew that I was going, for real, like a surgery that will change me forever. And that it was my way of saying goodbye to the old me. And I still struggle with saying goodbye to the old me, you know?
[00:14:46] Elvira Velez: Yeah.
[00:14:47] Deb Song: And I thought, you know, I finally got to a point where I’m like, okay, I’m at a good place. And like I remember that appointment with the doctor and it was just like, our doctor’s appointment is so traumatic. Like if, like the slightest bit of like, well, we see something, it’s just a complete shock and like freak out moment. And I think in that moment where I was in denial, I was like, I put it off. Like, I was like, I’m not doing this surgery, I’m not saying anything to anyone. Put it off. Put it off. And you know, it was my partner, he was just like, Hey, what did the doctor say? Like he was the one pushing. He’s like, I know you want to feel some normalcy and you want to put it behind you, but you can’t put it behind you if it gets worse, right? So he is like, I know this is not what you want to hear.
[00:15:33] But it was insane because the doctors, when you go to the gynecological team, they say something completely different from your breast oncological team. They’re like, oh, it with progesterone therapy. I mean, you’re a PR positive. Like no, like I can see, I can ask my other team if it’s a possibility. And they’re like, hell no. Are you kidding me? Like, that’s not a good idea. And so we had to get both doctors to talk to each other and say, okay, this is okay, or this is not okay. That sort of thing. And when it came down to it, I had that conviction of like, okay, I’m going to go through this surgery. I’m going to be fine. It was like the day before my surgery, I was working a normal day.
[00:16:12] I was just like working on breast cancer stories, working with my team, and I just found myself crying out of nowhere. I’m like, why am I so emotional? I’m at now at the age where like, because I was able to put it off for five years and I was like in those five years, you know, having children was still kind of top like there in my mind. But I was just like scared in all honesty because I’m like, I don’t want, what if you know, I’d become metastatic? What if this happens? So I made the determination in my mind that it wouldn’t. I was like so surprised that like, even though I knew that I wasn’t going to have children, like the surgery was so final, it felt like not only like you’re breasts define your womanhood, like I always thought that, but like your uterus, your body. Like does this change me? Does this make me less female? Does this, like all of these weird questions start popping in your head, right? Did you have those come up? Like I was surprised. Yeah. Even though I know the answers to these.
[00:17:16] Elvira Velez: Oh, no, for sure. I mean, the way I looked had a very, very big part of my, it was a very big part of my life. I dedicated a lot to the way I looked. It’s the plain truth. I’m not going to lie. Like it was, you know, the way I looked was. A lot of my confidence was a lot of who I was. I was not in any way unhappy with the way I looked. I was very confident and I, you when I got sick and they told me, well, you need to have a mastectomy. And I fought that. I was like, what if I don’t have it? She’s like, oh, you don’t get it. Like you have genetic cancer. Like you cannot, like, this is just not an option. Like you, you can do it, but you’re probably not going to last very long. So I remember, you know, I went to the doctor… to the plastic surgeon and I was just like, you know, a lot of girls want to have breast augmentation. So I was not one of them.
[00:18:18] So , I was like, and then I, and here I am, like going through all of these like plastic surgeons, you know, mojo that I don’t even know how it works. And when I had my mastectomy, it was the same thing. I was like, well, I am never, ever going to be the person that I was before. Like I’m going to lose like part, a part of my body that has been with me since I was born. And luckily for me, my, all my doctors are in the same place, so they do talk to each other. So my ovarian oncologist is in the same floor of my breast oncologist, so they know each other and they work as a team with my case particularly. And you know, your options are all the same. It’s, you know, it’s either that or not surviving.
[00:19:04] And so at some point then I remember I told my mom when I got my hysterectomy my doctor came over to before the surgery and he said, well, I’m pretty sure you have ovarian cancer and if you do it’s probably invaded the abdominal wall. And I am probably going to have to cut up a part of your bowel, if that’s the case. And I said, well, you are not going to do anything. Like you’re going to do the hysterectomy and that’s it. Because I am not going to live like, you know, like a person that’s not alive, whatever the time is that I have. So whatever you find, the only thing you can do is a hysterectomy and afterwards we’ll figure it out.
[00:19:52] My mom was obviously crying, like he was like, I’m not going to do anything that I wouldn’t do for my sister. Luckily that was not the case. They didn’t have to cut any part out. But but you know, all that pressure, it’s like after, after two years, after you went through the mastectomy, after you went through the chemo, after you like, it’s like all of these things ha recurrently happening and it’s like, when is it’s going to stop? And when am I going to feel like a person that doesn’t have to go through these things every single week?
[00:20:25] Just this past August, they found a lymph node right here and I had to go to another surgery. They thought I had cancer again. So it was like, you know, the doctor called me at 4:00 PM after I did a CT scan. And you know what it means when a doctor takes the time to call you at 4:00 PM and tell you that your CT scans are out? So he was pretty sure I was sick. And he’s like, you need to go under undergo surgery next week. And like, okay. Here I was thinking that I was done and I’m not. So it’s just like a never ending circle. And I don’t want to be negative because I’m not negative at all. I want to be super positive and I want to find a way that we can live with this in a way that it doesn’t destroy us or destroy our confidence in ourself or our women, which is the sad thing about these disease, right? You lose so many things that are completely related to being a woman.
[00:21:16] Deb Song: That’s the hardest part I would say. You know, when you go through it younger, it’s like, again, you think you have all the time in the world to, but you know, I was telling my mom, I’m like, sometimes I cry because it’s like I had cancer before I ever got, like before marriage, before children before. Like I experienced something that I would never wish upon anybody else. But like with that, I would say, do I regret having to have the hysterectomy? No, I had no choice. Right? Like, like that’s the thing. Like what I’ve learned through this process, especially going through breast cancer now, this is like, you know, people are very resistant to change, even though change helps you grow.
[00:22:00] But I realize there’s a difference between change in transition, right? The word change is what happened, right? If you get a new boss or if you lose your job or if you get cancer, that’s the change. What I’ve learned is transition is processing and breaking down, being pissed, crying, you know, finding joy and figuring it out again as to what it’s going to be and that transition to the new change, right? So it changes what happens to you. The transition is the process, and it’s not just acceptance, it’s just processing and then learning how to evolve. And so right now I’m in a transitional phase of learning. how to be me again, in a sense, or whatever version of me this is going to be. You know, and I’m accepting that and it’s those small wins that now d that’s the difference.
[00:22:58] Before I remember with breast cancer, et cetera, it’s weird because I had that lag with this surgery. How I reacted was not as visceral. Like I was sad, I was like worried, all of those things. But then I… it’s going to be okay. You know, it was more surgery fatigue and treatment fatigue because you’re like, ah, I just don’t want to go through this again. I was just starting to feel strong, feeling like kind of in a groove. And then, you know, my partner Trent, he was just like, it’s temporary, it’s going to be temporary, it’s going to be tough, but I’m here for you. We’re going to get through it together. He goes, you can be mad, you can be sad, you can go through all of those things and you’re going to continue to do so. He goes, but eventually he goes, all I know is what’s important is that you’re around. So, you know, it’s those moments where you’re like, okay, like I have to put on my big girl pants, you know, I can’t avoid it forever. You know, that sort of thing.
[00:23:59] Elvira Velez: The new things that you have to know and embrace now, like it’s just so different. It’s a blessing to find someone that can understand it, and it is a blessing for you that you are able to accept that you know that, that love and that support because it happens where you get used to relaying yourself and it’s hard to let people in.
[00:24:22] Deb Song: When you’re young and you get it. It’s like, I can do this. I can, like, there’s no changing it. I can go like, when you’re a successful person, it’s just like, how do I tack this and move it forward? But like I’ve said this before, I think, you know, with Adam before. Strength, strength, real strength is being able to be vulnerable and like having people like show up for you and help you. But at the end of the day, all of that doesn’t matter unless you show up for yourself, right? And you do that. And the hard parts, you know, the night sweats, the things that they don’t, people don’t talk about. I’m like, oh my God, this is horrible.
[00:24:55] Elvira Velez: It’s like the night sweats, I’m like, oh my God. It’s like I’m burning inside. It’s like having a fire inside you and then you don’t see it. And it’s like, really? You can’t tell. And I’m like, of course you can’t tell. It’s inside. Yeah. Like I was a person that didn’t sweat. I wanted to notice everyone hated me. Yeah. My sister hated me. My friends hated me because I could take a 60 minute spinning class and not drop a sweat. That’s how my metabolism worked. And then now I go to my core power yoga class and I am dripping and I’m like, I hope you guys are proud. All that hatred about me not sweating. Now it’s paying off because now I sweat like for everyone. So again, one other thing you need to get used to, because I mean, again, I didn’t even know about antipersperant brands because I didn’t need, I didn’t need them before.
[00:25:50] Oh, now I used them. I was like super, like not a sweater for sure. And then now it’s like I need to, you worry about all these other things. I’m like, okay, not neithers. You know, I, I don’t know if you’ve ever seen like those things, like if… if you can eat whatever you want and don’t gain weight, don’t complain about anything in your life. Yeah, well I was that person, so I was like, I had a long time of blessing. Like I was that person. I was like, yep, don’t. You know, it’s just like the different things that either used to worry about before and now are like, you know, part of my daily things, you know, thoughts and like, things like, you know, how can I do this or that? Is like, well who, who would’ve thought like, you know, just a year ago I didn’t have to worry about all these things. Because it was really after the hysterectomy that originally just kind of like, yeah fall into me. So yeah, I mean, I hear you.
[00:26:50] Deb Song: It’s just weird because it’s. All, everything. The breast cancer, the hysterectomy, all of those things, you’re like, this is supposed to happen. Like if you think about like over your head, it’s like this is supposed to happen when you’re older, like et cetera. Why is this happening? Like I know no rules to cancer. At the end of the day, cancer is the most punk rock, worst thing. I mean, I love punk rock, but I mean probably the nastiest thing in the world because like it follows no. It ha doesn’t care who you are, all those things. And it’s just nasty thing that just messes with your life. And it’s just like, again, I think the biggest part is like, now I’m stronger than you. I’m going to figure out a way to show you like. Like every day. It’s that, you know, even if it’s like, to me, I would say if I can wake up and I don’t feel like I’m off the cliff already, you know, that’s a win. So it, like, I keep a tally , like, I don’t know why like cancer is zero today, Deb one, you know, like some days cancer has got five on the board and I got nothing. You know, it just depends.
[00:27:55] Elvira Velez: Well, I mean, I think that honestly, I lost fear of being dead and not being in this world. I don’t think I, I don’t think that’s my fear. Yeah. I don’t think I’m afraid of that. I don’t think, I think my fear is the process. You know, how do you get there? Because whether or not I have, you know, I’m thinking I’m going to have a very long life. But whether or not you are, you know, how you get there is what I am focusing on now. Whether, you know, that has anything to do with cancer in my future, Or whether I, you know, would just me being an old person. But how, how do I get there after investing so much time and energy in just surviving and going through all of these procedures and medications and being uncomfortable and not feeling that myself and not feeling happy. And find, like, making sure that my journey is a is one that I am, that I enjoy at least. It’s kinda like where I want to end up. What I want to focus on.
[00:29:06] Deb Song: No, I love that. I love what you just said there because like, it’s funny, everybody always says like, Have you imagined yourself growing old? I can say the day I was diagnosed, that stopped. Like, I don’t even celebrate birthdays anymore.
[00:29:18] Elvira Velez: I know, I celebrate. Well, I do celebrate that, but yeah, I’m with you. Like, I don’t know if I’m meant to be old or not, but I do know that whatever that road looks like, I don’t want to spend it like I’ve spent the past four years of my life. I want to spend it, you know, being whomever that person is enjoying the life that I have now as much as I can. How do I make that happen? I’m not 100% sure yet, but I’m sure I’ll figure it out. But I think that’s, I think that’s what I’ve learned. I think that, you know, the end goal of surviving and not, you know, what is the purpose of that? If you’re not going to leave the life that you enjoy. And that if you’re going to wake up every day not feeling good and like, I think that’s, I think that’s my quest. My quest is making this time that I was given one that’s worth having.
[00:30:14] Deb Song: I, you summed it up so perfectly. I don’t know how to be a better way to end that. Because like in all honesty, starting this conversation of the what ifs of what if I could have had kids? What if the reality is what you just said there, it’s not the what. It’s the what now?
[00:30:32] Adam Walker: And I’d say that’s probably a good thought for us to end on right there. I mean, I love what you said, no, two things. You said number one. You’re not alone. And this conversation just proves that. And I so appreciate both of you being so honest, so open, so vulnerable about this, because I know it’s not easy. And two, I, I love what you said. You said it’s not the what ifs, it’s the what now? What are you going to do now? How are you going to move forward? And I love that mentality. So with that thank you both so much for joining the show today.
[00:31:09] Thanks to Wacoal for supporting this podcast. Join the more than 1,000,000 people who have been fit at a Fit for the Cure event. Visit fitforthecure.com to learn more and book an appointment today.
[00:31:34] 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.