Perspectives on BRCA2: Tayler LaBellarte on Pre-viving and Empowering Others to Take Charge of Their Health and Wellness

Tayler LaBellarte is a member of the Orangetheory team and an advocate for previvors who are taking charge of their health and wellness. LaBellarte's journey with pre-viving began when her mother was diagnosed with breast cancer while LaBellarte was in college. This experience motivated her to learn as much as she could about breast cancer and its relationship to other cancers. After some navigation with her insurance, LaBellarte eventually underwent genetic testing and learned that she carried the BRCA2 genetic mutation, which puts her at an increased risk for breast and ovarian cancer. LaBellarte has since become an advocate for genetic testing and reviving by sharing her story and helping others to take control of their own health. Read on for more information about LaBellarte’s experience getting insurance to cover genetic testing, the options available to her at that time, and the emotional journey afterward.

Amy Cohen Epstein: I'm here with Tayler LaBellarte who's part of the Orangetheory team. Today, we are going to talk about the idea of previving, which is what I call taking your health and wellness into your own hands and creating your own future, and being knowledgeable about your level of risk. Tayler's story... The word story always feels a little strange — but your life is really meaningful and incredible and I'm really looking forward to you sharing it and talking about what previving means to you. So I'm going to hand it over to you Tayler.

Tayler LaBellarte: Amazing. Thank you so much. And thank you for asking me to be a part of this. I didn't know much about being a previvor or anything like that until I entered into this world and it's odd. It's a blessing and a weird sort of feeling or thing to attach yourself to. But my mom was diagnosed with breast cancer when I was in college and so I spent my college years going through that process with her. She had a double mastectomy. She did chemo and radiation treatment and I was present for that whole process, and I then started to study what everything meant, everything that she was going through and I got to meet other breast cancer survivors or current patients. It hit my family like a ton of bricks and so I needed to know everything I could possibly know about it.

I then started to learn about how breast cancer is attached to other cancers; my grandma was battling pancreatic cancer at the time and they're sort of in the same lineage. So when my mom and I learned that information, she wanted to get genetic testing done to see if she was a carrier and if I was a carrier of the BRC2 or 1 gene. So my mom went to do genetic testing and insurance did not cover the test because she needed another family member to have shown either the gene or a specific cancer in order for the insurance to cover the testing. And it was just too expensive. So we took a shot in the dark to see if I would be able to get genetic testing done because I had two family members with the lineage of cancers that would technically be covered under insurance.

So I did and I saw a genetic counselor and specialist and I was able to receive genetic testing. So I didn't immediately go into it because I thought, "Okay, well I'm going to get this information and it can go either one or two ways." And I kept thinking, "Well if I learn this, how is this going to change the course of my life?" So I sat with it for a little bit. But at the same time, I'm watching my mom go through this and there was this heaviness and this sadness because my mom is so uncomfortable and at the same time I'm like, "Well what if I have to do this someday?" So the decision to get genetic testing, the pros kind of outweighed the cons for me. So I did the testing, and I learned a lot about different cancers and how they all are related to one another.

And then I did test positive for the BRCA2 genetic mutation. And I had some friends luckily who were also positive for BRCA1. So they gave me books and things to learn. And there was one book, the title always escapes me, but the girl that wrote it said she felt like a ticking time bomb and I couldn't relate to anything more. I just felt like at any point in time, at any moment I could just have breast cancer. And that is true of many women, they believe, they say one in eight women will develop breast cancer, but now when you have this genetic mutation, you're more disposed than they were telling me the percentages. They were like, "Oh well you have an 85% chance by the time you're 36 of getting breast cancer." And at the time I was in my mid to late 20s and I'm like, "That's not far."

And then I kept thinking, "My mom just went for a mammogram was fine, and then all of a sudden she has breast cancer." And so over the course of a year for her, it developed and I'm like, "So it can really just pop up and you're not going to know." So then I was like, "Well I'm going to want to test all the time every month I'm going to want to test." And I was very flat-chested prior to my surgery. And so getting a mammogram wasn't an option for me because there was nothing to read on the mammogram. So they had discussed that with me and they're like, "Well we could do, you could do self-exams and there are other ways we can test, but you would test once a year." And I was like, "Once a year, my mom-"

Amy Cohen Epstein: They didn't offer you other options besides mammogram. They didn't talk to you about the possibility of ultrasound?

Tayler LaBellarte: They said blood work and ultrasound are what they could do, as well as examinations outside of the mammogram. But I just kept thinking, "It's going to come up so fast and I'm just going to be so on edge, I'm going to want to test more than once a year." And they're like, "Well you're young." And I'm like, "Okay. But I'm also reading that there are 18-year-olds that are getting breast cancer," so it doesn't know age. And they're like, "Well you're healthy." "I feel like it doesn't matter." So everything that people were saying to me and, "You can wait, you don't have to be proactive about it." It just wasn't easing my mind enough. So I figured, "I'm very young, I'm healthy. If I'm going to do a preventative bilateral mastectomy, now is going to be the time." My work was very, very supportive of me in giving me time off and my insurance was going to cover the procedure.

So I was like, "It just seems like a no-brainer to me. I don't want to live in this constant state of fear or confusion." It just felt like this lingering cloud or this lingering weight that was on top of me. So I then made the decision to do the bilateral double mastectomy and I broke it up into two surgeries. I did the mastectomy and then months later after I did expanders, I did the revision surgery and it is the best decision I could have ever made for myself.

“Going through that process not only took the weight off of my shoulders, but it gave me a newfound strength that I never had before”

And I have this conversation with my mom all the time. Going through that process not only took the weight off of my shoulders, but it gave me a newfound strength that I never had before. It was like, "If I could get through that, I can get through anything and if I have the voice to make this decision for myself, I can make any sort of decision I need to in my life." So it became this really empowering decision that I made and it had its ups and downs for sure, but nothing feels better than the strength I had on the other side. And to have that cloud and that weight lifted off of me.

Amy Cohen Epstein: That's amazing. So many different parts of this I want to break down and talk about. I think the way that you describe that feeling of empowerment and how it trickles into everything in your life — that if you can make this kind of life-changing decision where you're truly taking control of your future, it does give you the power to make any decision in your life whether it's personal, social, romantic, whatever, job change, anything, moving. It's nothing compared to what you decided to do, which is so incredibly inspiring and motivating, and beautiful. The interesting thing is that I know that it's all so vivid in your brain and you remember every piece of it because it was so important and impactful to make those decisions.

It is mind-blowing that your mom couldn't get tested for BRCA because that information wouldn't just be for her. That's the main part of it. It's not just for her, it's for you and for any other family member for that matter. And how far do you have to go back in your family history to tell the insurance company, "Well this many women have had cancer?" "And no, we don't know exactly what it was because it was 60 years ago and maybe it was liver cancer but maybe it originated in her ovaries.” And so that’s part of why our work at the Lynne Cohen Foundation is so important — I told you about this when we last spoke. Women who are at increased risk for breast ovarian cancer come in and have access to all of these incredible tools including genetic counseling and genetic testing.

And the other part that you talked about that I really resonated with me is, okay, if you're going to do this, what are you going to do with the information? And I remember with my youngest child I had, I was going to be over 35 when I had him and I said, "Well I should get an amnio. Everyone gets an amnio." And my friend's dad who's an OBGYN, who's not my OBGYN, said, "So the only reason to get it is if you're going to do something with the information. Otherwise, what's the point?" And to me it's sort of that same, I don't know, dealing with that kind of info. So it's so brave that you did it and then you made some impactful decisions.

What were the hardest parts? Surgery or recovery or talking to your family, talking to your mom that you've carried this genetic mutation? As a mother I'd have guilt, I guess. I don't know. And what were those tough moments like if you don't mind sharing any of them?

Tayler LaBellarte: The first tough moment was being able to vocalize it. So I got my test and I remember I got it in an envelope and I sat in my car and I just stared at it and I was like, "Do I open this now? Do I wait?" And I actually decided to wait and then I have thyroid issues as well. So I actually had another doctor's appointment that I was going to and I went to it and because it was all in the same facility, she pulled up a chart, she's like, "Oh, I saw that you did testing." And she pulled it up and on her computer screen I saw the word positive.

And I hadn't opened the envelope. And I was like, "Am I reading that right? Is it because I did also other testing within it?" So I was like, "Okay, it could be something else. It might not be the breast cancer." So I'm freaking out a little bit and I was like, "Hey, are those my results?" She was like, "Oh actually." And she closed it. I think she saw that I saw it. And she's like, "You should contact your doctor because there's a lot of information in here. I'm not even sure. Contact your physician." And so that kind of sped up the process of me reading the envelope.

Amy Cohen Epstein: Someone else ripped the Band-Aid.

Tayler LaBellarte: Yeah. But I really wanted to be confident in my decision. Very similar to what you said, "If you're going to get a yes, you're going to make some sort of decision." But it was a matter of how quickly I was going to go through everything. So I sat with the envelope a little bit. I then opened it, it was in fact positive. I then scheduled my follow-up with my doctor who laid out all the options I have. And my doctor very much was like, "Well you have the ability to wait. You don't have to do this." And she was adamant in that. And I respected it, but I also felt so sick, so nauseous, like, "I'm going to get it tomorrow."

And then she told me the likelihood of it just based on my family history. And so at that point, it became a no-brainer to do it. I had access to what I felt were great physicians. But then I wasn't really myself, I had this new information and it was in my mind. So I was going about my day but not fully present because I'm thinking about something else.

A couple of my members at one of the studios in Los Angeles at Orangetheory had joined Orangetheory because she was coming back from her mastectomy revision and it was her first time working out. And I was like, "Well if I'm going to talk to anybody, I'm going to talk to her." So after class one day I told her that, "I recently tested positive and I was trying to figure out what I was going to do." And she was like, "I got you." Gave me her physicians. She had the most incredible experience and I ended up seeing her doctors. So had I not spoken or done some sort of outreach, I wouldn't have had the experience that I had. So it was for me really crossing that bridge. I'm also such an introvert, so it was opening myself up to other people that were going through what I was going through because I had my mom. But then I also felt this weird sort of...

I didn't want to burden her. And I also felt like I didn't have grounds to be upset or scared because what my mom went through was cancer. So I felt guilty being scared or upset. My mom is incredible and she was so there for me every step of the way. She felt guilty, she had all of these emotions, and she felt so bad. And now I'm feeling bad because I don't have cancer, but, "Should I be feeling these things that I'm feeling."

Amy Cohen Epstein: No it's a lot. There are so many mixed emotions with that newfound power of decision. You then had to decide what you were going to do and sharing the information and then talking about it with your mom, I can imagine was really tricky I would say.

Tayler LaBellarte: Yeah. But she was very supportive of anything I did. And she was like, "I will be there every step of the way no matter what you want to do." So I then made the decision. I felt like I had really great doctors, I met a few and I felt very confident with them and kind of created the team 'cause it took multiple doctors and researching diligently about what I wanted the outcome to be. Because I'm not a vain person — but there is a whole aesthetics aspect.

“all of these thoughts and opinions were coming my way. I think another empowering thing was being able to silence the noise.”

And then I started to share what I was going through with more people and I would get a lot of comments unsolicited for sure. But it was like, "You're so young, don't you want to have kids, you want to breastfeed, but what about getting married? Aren't you worried about what your potential husband would think of your scars?" I was getting all of these questions and then people were like, "Oh, so it's a boob job." And I'm like, "Oh my gosh."

So all of these thoughts and opinions were coming my way. I think another empowering thing was being able to silence the noise. Being so sound and confident in my decision, knowing what I was doing and people's perception of that they were welcome to have any sort of perception that they want, but this is what I needed to do for me and this is what was going to be the best choice for myself moving forward. And I did have those thoughts of like, "Well I won't be able to breastfeed and I'm not going to be able to feel my chest anymore. I understand that." And then I was like, "If my partner doesn't accept my scars, then he's not my partner."

So it was just being able to cancel noise and being secure. So that helped me feel empowered as well. But the biggest thing, and it's something that I still start to struggle with, is feeling, I don't know if guilty's the right word, but I started researching previvors and there are so many different nonprofits and other communities through social media and stuff that have previvor-based communities and conversations. And I really wanted to speak on it or involve myself in it or be a role model for other women that are going to go through this or at least just open myself up to having conversations. But there was always this thought in my head or this little voice in my head that was like, "But you didn't go through anything. You didn't go through cancer. It's night and day." I had to learn that it's a separate experience.

Amy Cohen Epstein: Correct.

Tayler LaBellarte: It's a very separate experience and both outcomes are to achieve health and wellness for women. So it took me a really long time to not feel like what I went through was it just felt like I went through something that was so impactful but I kept trying to diminish it because it wasn't cancer, if that makes sense.

Amy Cohen Epstein: 100%. But I think your conclusion is spot on — which is they're not comparable. You don't have to compare them. Just like if you have a really crummy day, it's okay. You don't have to compare that to someone's horrific day. They're the horribles that happened in the world. It's your experience and it's what you've done and it doesn't have to be compared to your mom's. And in fact, yeah, they're like parallel lines that have some intersection. But they're really parallel lines, and the advocacy that you can bring to the table does so much good and it's eye-opening for so many women that would be so sad if you didn't tell your story as often as you could.

I have a question for you, which is, do you think about your ovaries, and has anyone talked to you about your ovaries?

Tayler LaBellarte: Yes, yes, yes.

Amy Cohen Epstein: Because you're young and my guess is you haven't had kids yet. And so that's a whole different story. I mean breastfeeding is so amazing. Whatever. I didn't breastfeed any of my kids so it doesn't matter. And then my mom didn't breastfeed any of us and she had —

Tayler LaBellarte: I wasn't breastfed either.

Amy Cohen Epstein: So I'm fine. But what have you learned about that? And then we can talk about that a little bit.

Tayler LaBellarte: Yeah, so my mom actually recently had a hysterectomy. She still was not able to get tested, but because of my results and the conclusion, she decided, "Well I'm just going to remove them anyway. I don't need them. I'm through menopause, I'm not going to have kids." So for her it became a no-brainer... And she felt great on the other side because she was experiencing that cloud of like, "Well what if I get ovarian cancer?" So for me, I just right now I get my regular exams, I just stay up to date with it. I don't miss my appointments. If anything is off, if one of my cycles is drastically different from the other, I'm just constantly having conversations with my physician, which helps me feel empowered. But I do want to have children someday. So my plan as of now and things change, but my plan at this moment is — after I have kids — to then remove them.

Amy Cohen Epstein: And most ovarian cancers, the research within the last decade is that most ovarian cancers actually start in your fallopian tubes.

Tayler LaBellarte: Yes, yes, we talked about that.

Amy Cohen Epstein: And having your fallopian tubes removed, which I did at 40 and so did my sisters, drastically reduces your chance of ovarian cancer before you go do a full hysterectomy. So yes, you are unable to have children if you get rid of your fallopian tubes. There's no question about that. It's an outpatient surgery, it's done laparoscopy, and it's not difficult at all. But you still produce estrogen, you still have your periods, and you still have all those other good things inside of you, like your uterus and your ovaries until menopause. And that was my doctor's recommendation was, "Do this now and then let's reevaluate 50, 55 and probably have everything out." So it's a little like an in-between step. But yeah, you have to get those kids out before.

On that note, that is one of the hardest things for women who get this information, "Okay, I'm going to test for BRCA1 or BRCA2 genetic mutations." (And by the way, as you know, there's a slew of other genetic mutations out there, many of which don't have names to them.) One of the heads of our clinic at USC, Dr. Linda Roman, says that when she sees women with such a robust history of cancer in their family, and if they test negative for all genetic mutations, they'll still treat you as a very high-risk patient because they feel like there's probably a genetic mutation you're caring that they haven't identified yet.

And that could put you at increased risk for breast, ovarian or another type of uterine cancer or cervical cancer. And so it's this idea of, again, what do you do with that information, and then how do you then make decisions? I've talked to so many women over the years who have lost a mother to ovarian cancer, and they reach out to me and then they're like, "Okay, I'm going to test but I am 23 and what am I going to do if I find out I have a BRCA mutation that puts me at really increased risk ovarian cancer? I'm 23, I'm not married or I'm not with a partner, I'm not ready to freeze my eggs."

All of those things are really hard decisions to make. But my answer is always, and I think yours at this point is too, is that nothing good comes from sticking your head in the sand.

Tayler LaBellarte: Absolutely. With my mom, it was the first mammogram that she ever got.

Amy Cohen Epstein: No way.

Tayler LaBellarte: Yeah. She just kept putting it off. And even talking to my friends, everyone is so busy and their schedules are this and they're all over the place and they can't make time for their workout or they can't make time to do this, that, or the other. Everybody has an excuse about how busy their lives are. And I'm not saying that they're not busy, but you have to prioritize the things that matter, and knowing your health and going to your doctor's appointments, those things matter and cannot be pushed on the back burner. So even if you choose, and I say this to my friends all the time who maybe have a history of breast or ovarian cancer in their family or maybe they don't, I'm like, "Just go to your appointments. If you're not sure that you want to do all the genetic testing because you're scared of the response, okay, that's very fair. But just go to your appointments, stay on top of your health. There is such empowerment in just being able to do that."

And if you have the ability to go see a physician and it is no skin off of your back, I don't see why you wouldn't. And especially in this day and age without making it super political, we don't have all of the choices that we once did anymore or they're starting to slip away. So when you have the ability to make decisions for yourself, make them. And that's so empowering to me and whenever you do it, that's fine, especially for a younger group of women that are in their 20s and want to have kids and have this plan. Just go to your doctor's appointments. Talk to your doctor.

Amy Cohen Epstein: I mean during Covid it was such a terrible eye-opener with the number of women who put off their annual gynecology visits, their mammograms, their ultrasounds. The number of women who then have later-stage cancers sort of coming out of that bad first year and a half of Covid skyrocketed. Even women who had cancer and didn't stop going to their appointments for their treatments — it was so awful and so upsetting. And I mean 100%. The hard part is that as women, and I say this all the time, we really do put ourselves, in general, last on their list and do everything else before taking care of ourselves and it's like you got to put that mask on first, otherwise you can't do all those other things.

You can't take care of your friends, your family, your children, or your partner, unless you're healthy, unless you can get out of bed and feed them breakfast if that's what you want to do. And it's really hard. Women have a really hard time doing that. However, if our car makes a weird noise, you'll like to drive it straight to the shop and you won't put that off. Because, "I need my car, what am I going to do without my car?" Especially since we're both in Los Angeles, but wait a second, that was your whole day. Getting your screening is not that cumbersome. But I think that because it's scary for so many people and that fear of, "What am I going to be told?" They just are like, "I'll just wait."

Even going to the dentist like, "Oh I don't want to know if I have a cavity, I'm just going to not go." That's so problematic. Because problems, if they do exist, don't go away on their own and they get worse over time. Not better. And one other thing that you said I think is important for us to just talk about is also what you do to screen for ovarian cancer and what I would recommend you do. So I say definitely see your gynecologist and have him or her do an internal exam and see whether your ovaries are normal in size and shape. I'd recommend asking for a vaginal ultrasound. I think that's one of the best tools. I know it's one of the best tools we have if you're considered high risk to really see what's going on in there.

And so it's knowing your normal, down to your bowel movement schedule. We all have our normal and sometimes you travel and you go out of your normal but then it comes back around. But if all of a sudden you're constipated from a long period of time or have diarrhea for a long period of time or bloating right in your abdomen that as you get older it's not abnormal.

And you work at Orangetheory, so I'm sure you see women who gain weight around their middle. That's a normal place for women to put on if you put on some pounds, that's sort of where you see it first. I guess lucky for me it goes head to toe so I just get bigger. But it's really being in touch with those changes in your body and doing exactly what you said, which is having constant conversations with your physician, which means having a physician that you trust that you can communicate with that will listen to you and that knows your history. And that's really, really important. And that's really hard for a lot of women based on where they live, and their socioeconomic background. But it's something that we should all strive for. For sure. Yeah, 100%.

Tayler LaBellarte: Yeah. The reason I got into the fitness industry was, I call it, the light bulb moment. I coach because I want people to learn about themselves. Whether that is physical, mental, or emotional, people lack awareness of what is going on in their body just because they're on autopilot half the time. We're going about our day, we're worried about our kids, we're worried about our job, we're worried about our partners. As you said, we think of ourselves last. So when people come in and they start to work out and they start to notice things about themselves, they have this moment of this aha moment. And it could be, "Well I'm capable of doing something I didn't think I could do. Or I noticed I really wasn't sleeping before and my sleep patterns were terrible." But starting a fitness journey is a catalyst for just making healthier decisions along the way and you just learn more about yourself.

And I just think it's so important for men and women to know their bodies. Just get so comfortable with yourself that you know the second something is off and the more in tune you are, the more confident you're going to be to go to your doctor and say, "Hey, something's not right." Because how many stories do you hear of, I was trying to say something was different but I couldn't really describe it because I wasn't really sure. But if you just know your body or get comfortable knowing your body, it comes back to that idea of just empowering, right?

Amy Cohen Epstein: Yeah.

Tayler LaBellarte: Go and say, "This doesn't feel right." During Covid, I had a cyst on my ovary rupture. I have cysts on my ovaries and I knew well before it was going to rupture that I had this cyst. And so I immediately, I was just like, "I'm just getting this dull pain and I need to know what it is." And so I talked to my doctor and we did the vaginal ultrasound and she's like, "Well you have cyst on your ovaries." And I was like, "Okay, I know it now." And so just the slightest thing and never be afraid to ask questions. I always say that too. "Never be afraid to ask questions. No question is dumb. You're all you're going to do is just learn a little bit more and knowledge is power for you to continue forward." So yeah, I'm a big proponent and just learning about your body.

Amy Cohen Epstein And if you're with a physician who pooh-poos you or says, "No, that's normal or it's not a big deal," go to someone else.

Tayler LaBellarte: Go to someone else.

Amy Cohen Epstein: The number of women that have talked to me over the years that have said, "I knew it was weird. I was just like my diet hadn't changed, my exercise routine hadn't changed and I just kept gaining weight right around my sort of lower underneath my belly button region." And my doctor just said, "Yeah, you're getting older, play a few more days of tennis during the week," and it was a tumor on their ovaries. I mean that does not always the case, but in couples number of cases that is. And so it's, "No, that's not the right doctor for you." You don't want to cross the line into crazy where you drive yourself mad, but there's definitely a lot of room to advocate for yourself nonstop because nobody else is going to do that.

Tayler LaBellarte: Absolutely.

Amy Cohen Epstein: No one else is going to take that job 100%.

Tayler LaBellarte: And there's a psychological component that if you get told, "No," or you get told that, "You're wrong," once you're hesitant to go back and do it again. Or even-

Amy Cohen Epstein: Especially from a doctor who seems like they're all knowing and went to medical school and should know the answer.

Tayler LaBellarte: Or to start fresh with somebody new. It's like having a bad relationship. It changes your experience when you go to the next one. But I can't stress it enough how that one experience shouldn't deter you from going to find somebody else and asking the same question. It's just because it's one terrible or not comfortable experience doesn't mean that every experience after that will be that way or has to be that way.

Amy Cohen Epstein: I mean 100% and highlight it and put it out there in skywriting 100%. Well this has been so wonderful and I'm really appreciative of you giving us your time and I mean you're just sparkle of energy and what you've gone through and the way that you're communicating it and the way that it has clearly changed your life is just inspiring to me and I know really more importantly, helpful to a lot of other women.

So thank you for putting it out there. I'm so glad your mom's okay and I'm grateful for the steps that you've taken and it's really, it's not to be passed over that you did something really scary and you did it while you were going through a tremendous moment of time with your mom battling cancer. So to find out the information that you are at much more increased risk for breast cancer than the rest of the population while your mom's battling the disease mean that is almost unheard of. And I think it's the courage that it took and then to make these really life-changing decisions. It's no small feat. So I don't know, I applaud you that doesn't even do it justice, but it's really fantastic and I think it's really cool that there's a community of previvors out there. It's pretty awesome. It really is.

Tayler LaBellarte: Oh, thank you. I appreciate the time And where I once was shy or hesitant to share my story is it could be so impactful and I'm seeing the impact that it has, even if it's just one person. I had posted a story about checking yourself at home doing a self-exam and somebody had responded to me and said, "I have my mammogram scheduled for tomorrow and I was going to cancel it, but I saw your post and I kept my appointment and I'm going," and I'm like, "Great." So it is so important to talk about it and all that shyness that I had is just completely gone because I just want women to be able to feel this sense of confidence and empower themselves to live their best healthy lives that they can possibly. So I appreciate you allowing me this time to share and talk about it. Thank you.