My Motivated Moment: Caroline
Caroline addressed her BRCA gene mutation after learning her mom had breast cancer. Listen to her story, and be inspired to take control of your breast health.
This program is presented by the Centers for Disease Control and Prevention.
[Announcer] What was the moment in time when things changed for you? What motivated you to move forward or take action? Welcome to My Motivated Moment, a podcast featuring young women bravely facing a breast cancer diagnosis or risk of breast cancer, and the people in their lives who support them. In these live recordings, you’ll hear all about the moment everything changed for them. And how their experiences inspired them to become empowered advocates for their own health.
Caroline’s moment happened shortly before her wedding. She learned that her mom had breast cancer. Upon hearing the diagnosis, she had no idea it would affect her and her sister so differently. Ultimately, Caroline was not shy about dealing with it head-on, just days after she walked down the aisle.
Let’s join Caroline as she discusses the steps she took to reduce her risk of getting breast cancer.
[Caroline] My future was bright. I was engaged, found the love of my life, caught up all in the weeds of planning a wedding, loving life, extremely happy, great job, everything going well, when I got a phone call from my mom at work, “They found something on my mammogram. I have breast cancer. I know it.” And immediately went nuts on the phone. That’s my mom. And I just said, “Okay, calm down. It’s probably nothing. Let’s wait to see what happens. Let’s take…take a breath.” I’m at home, get another panic call in the morning, “Oh my God, it was breast cancer.” She actually had a reason to be so stressed out. Now my mom…there are lots of moms out there that are stoic and they keep it to themselves they have breast cancer and they don’t want, you know, anything on their kids. That is not my mom. My mom’s like, “I need you to help me. You need you to get me. We got to find the right doctors. We gotta do this right.” So we were there with her every step of the way. Part of her process of going through the breast cancer treatments was finding out that she should go through genetic counseling. The reason for this, she’s of … all of us are of Ashkenazi Jewish descent. One in 40 [Ashkenazi] Jewish women are carriers of some kind of hereditary mutation. So it’s very important to go down this path.
So my mom went in first for testing, and found out first there was a panel of eight for the Ashkenazi Jews. She actually tested negative on the mutations that were normally tied to BRCA mutations for Jews. So we thought, oh, we’re in the clear. She goes in for more extensive panel testing and found out she’s a BRCA2 mutation carrier. That was such overwhelming news. We couldn’t believe it. We thought we were in the clear and then she was a BRCA mutation carrier.
At that moment, I just couldn’t think about it. I couldn’t deal with it. We were about to get married. My husband and I, we were just about to buy a house. I just put it in the back burner. I was like, I’m not going to think about this right now. Got married, bought the house, settled down, and then I thought, I guess we need to do something about this. I guess I need to start thinking about this. So I went in to see a geneticist to go through the beginning of the testing. She was just talking a mile a minute, going over all these facts that I didn’t really feel like I was getting anything new. I had already learned about all of this. I was like, let’s get to the point.
We took the test, fit in a little thing, and off I went. I’m out with a friend and I get a phone call from the geneticist. Now that’s a way to call someone, and she just says, “I just want to let you know you have the BRCA mutation.” Okay, I didn’t know how to process it. It was so overwhelming. It was not the moment I wanted to hear. Definitely informed my sister, “Do not see a geneticist. Go see a genetic counselor who can counsel you and been trained on how to give this kind of information.”
So, we then went by my process. And again, after that I decided to put it back onto the back burner. I’m not going to think about this right now. I can’t focus. So times goes by. My husband’s like, “Well, are you going to do something with this information or are you just going to keep sitting on here and thinking about this information?”. I was like, “All right, you’re right. I got to go do something about this.” So I start my monitoring. I go in for a breast MRI and a mammogram, and when I get my MRI results they found something suspicious. Once, at first they found something suspicious, in my mind I’m like, “I’m not going to be this eternal patient. Like I’m going to have these removed. I can’t deal with this.” Of course, my husband was thinking, “That’s a little crazy, Caroline. You just had one test. Like, let’s see what happens.” So I said, “Okay, you’re right, you’re right.” So we go in. I then have an ultrasound biopsy to test this mysterious, suspicious stuff. So, I have the ultrasound biopsy. We come in. We wait a whole week for the results. That week wait and my husband is starting to get, “I get this, man. That’s a long time to wait for results.” So, we go in and they say, “Hey, it looks good, but it’s not completely good. We need you to go in for surgery to have a surgical biopsy.” Well, at that moment I was like, “No. Like, if you’re putting me under, and I’m taking that risk of anesthesia, then I am getting the whole thing done. Like that is too much.” My husband was like, “Hell yeah, I’m totally on the same page. I am not going to be doing this every six months with you.”
So, we then go ahead and schedule the surgery. I had a bilateral prophylactic mastectomy nipple skin sparing with expander to implant reconstruction. So that process was fine. The surgery actually was not a big deal. I have a pretty high pain tolerance. What was hard was the mental. So while I was thinking all this stuff out like, this is what I’m going to do, I didn’t think about what it was going to feel like to lose my breasts and they’re who you are. They’re a part of who you are, and I was grieving. I was grieving. I was losing a part of who I was. I was a person who loved my breasts. I always wore sexy tops. I even was in a wet t-shirt contest in college. So like I am not a person who was shy about my breasts.
So, I didn’t take into account how hard that would be. And also, like, all the celebrities who were having this, they, you know, glamorize it. They’re like, “Oh, Angelina Jolie got it. It’s …” No, it’s not like breast implants. They remove all the tissue. They remove all your nerve endings. And it feels like two foreign objects in your body. You lose all sensation. It’s hard. It feels like you’re walking around with two foreign objects on your body. At first, I didn’t like them. Now, I look at my old self and I think these are better. I don’t know why I thought that. But back then it was hard, like I definitely was grieving losing a part of me and it was an emotional experience, and it took me a while to get to where I am now, which I am so happy with the choice I made. I don’t have to be that eternal patient where I can just not have to think about it and I give back to the community with what I’ve learned. And I can focus now on our two beautiful children; one who’s almost three, the other who’s 15 months. And I don’t have to think about, “Oh, what’s going to happen at my next checkup,” and I can focus completely on my family and raising my beautiful children, and not think about during pregnancies or any of those things. So I’m so happy with the choices we’ve made. And my future is just as bright.
[Announcer] Both Caroline and her sister carry the BRCA gene mutation, but made very different choices about how to approach their risks. With the support of her family, she made very personal choices about trying to secure a future in which she’d always be there for her kids.
We hope that stories like this will empower you to ‘Bring Your Brave.’ Talk to family members to learn more about your family’s history of breast and ovarian cancer, and share what you learned with your health care provider. And if you have a story to share, visit cdc.gov/bringyourbrave or bringyourbrave.tumblr.com to join the breast cancer conversation.
This episode was brought to you by Bring Your Brave from the Centers for Disease Control and Prevention. Take care of yourselves. And thanks for tuning in.
For the most accurate health information, visit cdc.gov, or call 1-800-CDC-INFO.