Tue May 21, 2013
Getting Rid Of My Breasts, A Lot Of People Didn't Understand
Originally published on Tue May 21, 2013 1:02 pm
MICHEL MARTIN, HOST:
I'm Michel Martin and this is TELL ME MORE from NPR News. They say it takes a village to raise a child, but maybe you just need a few moms in your corner. Every week, we check in with a diverse group of parents for their common sense and savvy advice.
Today, though, we are talking about a difficult decision that both mothers and daughters face, sometimes together. It's the question of whether to get genetic testing for breast cancer and what to do when you find out that you are at high risk.
This issue was in the headlines last week after actress Angelina Jolie wrote a New York Times op-ed about her decision to undergo a double mastectomy. She made that decision after discovering that she carried the BRCA1 gene mutation. Her doctor said she was facing a staggering 87 percent risk of developing breast cancer, which was the disease that took her mother's life.
Angelina Jolie said she wanted to write about this to make other women aware of their choices and now we are going to meet two women, a mother and daughter, who are also doing that after having faced this difficult dilemma themselves.
Regina Brett is a columnist for The Cleveland Plain Dealer. She wrote about her and her daughter Gabrielle in an award-winning series called "The Inheritance" and they are both with us now. Thank you both so much for speaking with us.
REGINA BRETT: Michel, thanks for having us on the show.
MARTIN: So, Regina, I'll start with you. When you heard that Angelina Jolie had written about this, when you saw her piece, what went through your mind? Did you think, yay, or did you think, oh, wow, now this brings up all this again?
BRETT: Well, I found out about it when my daughter sent me a text and I knew right then my daughter felt empowered that somebody else had kind of come out publicly. You know, when we had surgery, people kind of rolled their eyes and thought, geez, are you crazy? What are you making such a radical decision for? So I think it's important somebody that, you know, famous has the gene and is honest about her decision, so I felt good about it. There's also a bit of sadness about it that there are many women out there who are too afraid to find out or who just don't know their family history.
MARTIN: Gabrielle, what about you?
GABRIELLE BRETT: It's interesting. I sort of felt like she's part of our club now. I'm like, what a cool celebrity to welcome into the club. You know, one of sexiest women alive to go public with a decision like that sort of, I think, made us all feel like we had a little sexy back.
MARTIN: Well, Regina, in fact - and just to clarify again, Angelia Jolie's mother died of ovarian cancer and she apparently is contemplating also a prophylactic removal, you know, of her ovaries, as well, but apparently there is some sort of relationship to that. But, you know, Regina, you actually talked about this. In a piece that you wrote, you talked about the fact that, you know, you can be sexy and make this decision.
But you had a very kind of extensive family history of cancer. You had breast cancer yourself in 1998. You found out that your cousins - two of your cousins - were diagnosed. Their mother, your aunt, died of breast cancer. So, for you, how did the option present itself of having this genetic testing and then, you know, the decisions that kind of flowed from that? Was that something that was always on the table or was that something you found out later? How did that come about?
BRETT: Well, you know, for years, cancer was prevalent in our family, but it was something we didn't talk about. Cancer used to be kind of that shameful secret in a family. My dad had 10 siblings, 10 in his family. Six had the gene. Six died of cancer. So I was the first of the next generation to get cancer and it was scary because, in our family, if you got cancer, you died from it. We had no idea that we carried this gene.
I had cancer and then, when I was recovering from it, two cousins got diagnosed and then, pretty soon, other cousins got diagnosed and we got the gene testing and said, oh, my gosh, this is why we're all getting cancer.
And the decision was still hard to make to have the double mastectomy because there's such a pressure in our culture to look beautiful and the measure of your beauty, too often, is your breast size, you know, in Hollywood and models and all that.
But you know what I learned from this? So much was about how much I'm so much more a woman based on my heart, not on just my body parts.
MARTIN: How did you - how did the subject of Gabrielle getting tested come up? I mean, Regina, was it something you said, you know what? This has to happen. I've got to talk to her as soon as possible. How did it come up that Gabrielle should get tested? And then I'm going to - Regina, I'm asking you first and I'm going to ask Gabrielle her recollection of that conversation.
BRETT: Well, first, my cousins got tested and they were positive and their mother had died of cancer, so I got tested. It was positive. Gabrielle was 19 when I got cancer. She was away at college and it was really difficult. We were so close. I was a single mom 18 years, so we're best friends and not just mom and daughter.
And I was concerned about, like, should she know? Should she really find out this soon? But she's this powerful woman and she thought, you know what? Information is power and, for her, it really did empower her, so I think it was
MARTIN: Gabrielle, how do you recall that conversation - or those conversations?
BRETT: Yeah, you know, I sort of felt that I needed - I just needed to know. I was going to, you know, go through life believing that I had a time bomb in me no matter what. So if I could get the relief of finding out I was negative and I was not a carrier, then I could relax a bit more. If I found out I was positive, then I felt like I could get the surveillance and the screening, regular mammograms, breast MRIs and be really proactive about it. But not knowing was not going to be helpful because insurance wasn't going to cover screening unless I tested positive for the gene. So to me, at 23, it was like, it was a no-brainer.
MARTIN: And then Gabrielle, you decided to have that preventive mastectomy at age 29. Talk a little bit, if you would, about that decision. And I just, I hope I'm not being offensive when I say I think it, isn't it a little different though, when you're, you know, when you're in your 40s and you've had your kids and, but then you're a young woman and you still want to wear that bikini, that two-piece...
BRETT: The sundress. Yes.
MARTIN: The sundress.
BRETT: Oh yeah. Oh yeah, I can totally, yeah. Absolutely. It's very different and, you know, and my peers, I was, you know, I had to educate them on why I was making the decision. You know, a lot of people didn't really understand it because most people frankly, in their 20s aren't faced with any decision involving cancer. So for me, I found out I carry the gene at 23. I decided to do surveillance until I was 30 and surveillance meant MRIs and, you know, mammograms and things. Every time I got an MRI, I got an abnormal result, which was very scary so for, you know, three months or six months I would think what if there's something there and they'd rescreen me and they'd say oh, it's no longer there. But the reality was, you know, people around me were still being diagnosed. People I knew with the gene were still getting diagnosed. So at 29, I would say my husband and mom decided for me...
BRETT: ...that I should really consider a prophylactic mastectomy, a preventive mastectomy. And I sort of felt like why now? Like, why can't I wait until I'm 30 and why can't I wait till I have breast-fed my kids and why can I wait? But the reality was I was kind of in denial and my husband sat me down and had a beautiful talk with me about how important it was that we not take any chances because we were starting to talk about, you know, beginning a family and the reality of being pregnant and having extra estrogen in my body and, you know, the fear of what if something happened during that time. And he was really the one that sort of made the decision first and then I, it took me a couple weeks and then I came around to realizing it was the right thing. And so at age 29, before we had kids, I chose to get the preventative mastectomy.
MARTIN: What was the hardest part about that, Gabrielle, if you don't mind my asking?
BRETT: You know, it's interesting. The hardest part was just making the decision. And I can almost laugh about it now because - I mean not, it's not that it's funny but it's just that it's such a no-brainer now that we have a family and now that my priorities are different. The hardest part is actually coming to grips with I'm going to remove a healthy part of my body. And I think once I made that decision, you know, the weeks leading up to surgery I had a lot of anxiety. But honestly, the minute I got rolled out of surgery and I was awake and alert, I felt such relief and just that a weight had been lifted off of me. It's never been a decision I've ever regretted, you know, not for a day. And even now you hear about somebody getting diagnosed while they were pregnant or, you know, dying in their 30s and it's that reality check of, oh yeah, I did the right thing.
BRETT: You know, you can look back and it's just, it's a good reminder from time to time to know that it's not about how you look in a sundress. It's the reality that I'm going to be around for my three kids.
MARTIN: If you're just joining us, we're talking about the difficult decision to have a preventative mastectomy with two women who have been there - Regina Brett and her daughter Gabrielle. The surgery has been getting attention after actress Angelina Jolie revealed she had it to lower her own risk of cancer.
You know, Regina, you talked about some of this in a piece that you wrote. You wrote, Gabrielle wasn't ready to lose her breasts. She was afraid she wouldn't get to breast-feed her babies. I was afraid she wouldn't live to see them grow up. I have to ask you, Regina, you know, Gabrielle just said she kind of feels like you and her husband kind of pushed her.
MARTIN: You can certainly understand why.
BRETT: We did. We did.
MARTIN: What did you feel in a way, I don't know, as a mom obviously, you're used to kind of thinking ahead, right? You can see the corners ahead that your kids may not be able to see. But it's such a personal and difficult decision. Did you ever worry you were pushing her in the wrong direction, that she would come to be mad at you afterwards?
BRETT: You know, I felt that it was the right direction because when I was getting radiation for breast cancer there was a woman who was 28 who was also getting radiation and I thought, that's the view I saw for my daughter down the road. And every year we would walk in the Race for the Cure and I would walk in memory of my Aunt Veronica, my Aunt Francie and my Aunt Maureen and I'd think, gosh, I don't want to ever walk in memory of my daughter. And I mean I couldn't imagine and the grief of parents there who lost their children. And so one year I was at the race with Gabrielle's husband, Gabrielle couldn't make it that year and I took him aside and I said you guys can't wait. And maybe that sounds terrible for a mother to do, but I just could see what was ahead, having been in that radiation room, seeing all those different women and many of them were very young. And in our family my aunt died young at 42 with six children and the youngest was two and I - it was such a reality. It was such a harsh reality to see that grief of a mother gone.
MARTIN: You both made the decision not to have reconstructive surgery. I mean Angelina Jolie wrote in her piece that she did opt to have that surgery. I'm curious about, if you don't mind again, and I thank you both so much for being willing to talk about this because really, everything I'm asking you is none of my business. But...
MARTIN: So thank you for sharing this.
BRETT: We're quite fine with it.
MARTIN: But why do you think both of you decided not to have the surgery? Regina, I'll ask you first.
BRETT: Well, I had been through chemotherapy and radiation and surgery and I felt like my body had just been through enough. And I also read a lot about the reconstruction surgery and for me I wasn't going to have breasts again. I would have maybe an implant with skin over it but for me it wasn't the breasts that I had known and loved my whole life. I wouldn't feel anything. I wouldn't feel if somebody touched me and I realize I would only be having breasts for everybody else to look at and say wow, she looks great. So I opted to get I call them my fake breasts. They told me you need to befriend your bosom buddies so I brought prosthetic breasts and I named them Thelma and Louise so I could have a little fun with them and be lighthearted. And, you know what, every day I just slip them in a bra, put them on and when it's too hot, I take my bra off and I go breastless. And I have two looks, kind of my gymnast look and my, the way always looked. And for me I didn't want to get all new clothes and it just still felt like I had a sense of my figure. So I'm completely fine having made my decision.
MARTIN: Gabrielle, what about you?
You know, it's interesting. I read an article in some journal of plastic surgery written by a patient and she talked about how doctors sort of push plastic surgery options on patients so that they can appear as though they fit into society, but that it actually is an elective surgery. And she made a really good point about the, you know, having additional surgeries increases your risk of complications, the risk of having multiple surgeries and, you know, I just could really relate to that idea of why, if I'm making this choice to improve my health odds, why then would I put myself at risk, you know, going under anesthesia and having multiple surgeries and having discomfort and having increased recovery time. It just didn't make sense with the ultimate reason I was having the surgery. And the reality is, you know, excuse me, I just saw pictures of the women, you know, maybe it's improved over the last six years, but the women at that time that were having plastic surgery with the breast cancer gene, they remove all of the fatty tissue in your breast. So it literally is skin over an implant. You know, it's not the Dr. 90210 look, And frankly, I've just never seen myself having implants. And, you know, it's nothing I've ever regretted and luckily, my husband was 100 percent supportive and behind me so I've been really happy with it.
Before we let each of you go, I'd love to hear more about your decision to talk about this. I mean you actually started talking about this before Angelina Jolie went public. And like her, you also wanted to help other women be less afraid. And I'm just, I'm interested in what other wisdom you might want to impart there. So Gabrielle, maybe I'll start with you and then Regina, I'll give you the last word.
BRETT: Well, I think, you know, finding out that you have the gene is really scary. It causes a lot of anxiety and a lot of emotions. Deciding what to do with that information, you know, is equally as difficult. But I think ultimately, you know, once you can make a decision about it and make peace with it, it becomes not so big and not so scary and not so hard. And the reality is we all have different shapes and different bodies and different challenges and I think that, you know, for women that are considering this kind of testing, one day it's really big and one day it's just not, one day other things are bigger, and it becomes a lot smaller.
MARTIN: Regina, what about you? Any advice you want to pass on since you might be the first person that anyone can hear who has talked about this?
BRETT: Well, I talked about it a lot because Gabriel was willing to share her story, which I thought was really powerful. I guess the most important thing is know your family history. When I was growing up, I knew my Aunt Francie, Veronica and Maureen died of cancer but nobody told us what kind of cancer because cancer was kind of whispered about. And a lot of us have those secrets in our family. Know your family history and examine your breasts, you know, that's how I found the lump in mine, you know, talk about it. It's just a body part that you can live without and I think we need to kind of remember that life itself is the most important gift we have and that's top priority all the time.
MARTIN: Any other advice for parents like yourself Regina, who want to have these conversations with their own kids about this who might feel hesitant to push them into something that can feel very different. As you - I was interested to hear from Gabrielle that people actually tried to tell her that she was crazy, which I found interesting, that people felt they could tell her that. But...
BRETT: Well, people do. They think that you're like Gabe said, that you're getting rid of some healthy part of you. But if you have the BRCA1 or the BRCA2 gene, you don't have healthy breasts, you have a mutation in every single cell of that breast tissue and your chance of getting breast cancer is so high I don't think it's worth taking the risk. I personally didn't want to gamble my life just to save my breasts because I can live without breasts, you know. And your beauty truly comes from your heart, your soul, it's not about what you just see in the mirror. And I got to tell you, the two scars on my chest when I wake up and I see a blank canvas, it's like a big V where my breasts were and I think of it as this is a victory. I get to live every single day. That's my reminder to get out there and live because life is short and I got a wake-up call and that's my gift every day.
MARTIN: Well, good luck to you both. Thank you both so much for speaking with us.
BRETT: Thanks for having us on.
BRETT: Thanks for having us on the show.
MARTIN: Regina Brett is a columnist for the Cleveland Plain Dealer. She and her daughter Gabrielle joined us from member station WCPN in Cleveland. Thank you both again so much and good luck to you both and everyone in your family.
BRETT: Thank you.
BRETT: Thank you.
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MARTIN: And that's our program for today. I'm Michel Martin and you've been listening to TELL ME MORE from NPR News. Let's talk more tomorrow.
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