Writer, Sara Martinez on Previval, Braving BRCA and Her Experience Receiving a Preventive Double Mastectomy

In this interview, we delve into writer Sara Martinez's deeply personal journey as a previvor who initially discovered her BRCA gene mutation through a 23andMe test. Sara's story highlights the critical need for open conversations about genetic mutations, access to support, and the formidable challenges of navigating insurance coverage and the financial strains of a preventative double mastectomy. Sara has previously written about her experience with BRCA for Bustle in a series called Braving BRCA.

Amy Cohen Epstein: Sarah, good afternoon. I'm very excited to welcome you to the Seam podcast. We've talked a lot lately about genetics and how genetics relate to cancer, women's cancers, cancer prevention, and then, also of course, what that means to our risk for cancer.

So, what I'd like to jump into right away is for you to tell us your story. I've read about it — lots of people have read how eloquently you've explained and talked about BRCA and what it means. And when I've said that those letters, B-R-C-A, BRCA, whoever you want to say it, you see lots of eyes pop open, and you see lots of women look at me like they don't even know what I'm talking about.

So tell us your story. Tell us what it meant when you figured out what that meant to you, and just jump into it, being told you're BRCA positive. Did you even know what that meant? Et cetera, et cetera. And let's just find out how scary that was, and then how you dealt with it, and now how you're dealing with it and talking about it.

Sara Martinez:  Well, thank you so much for having me here. I'm really excited to share more about my experience. Of course, I've written about it before and talked about it openly. I think it is so important to share our stories because it helps people feel less alone. You feel as if you are a part of this club that is a little bit of a different club because you don't necessarily have cancer yet, but you feel as if you do. So I didn't find that many people were talking about having the genetic mutation. So for me, it was really important to talk about it openly.

So, I actually found out a really unique way. I ordered a 23andMe for fun. So me and my family kept giving each other the 23andMe. Everyone gave each other that, and it was just supposed to be a fun way to see our ancestry. And I like to think of myself as a mild hypochondriac. And so I added on the health benefits. Nobody gifted it to me, but I added them on for fun because I actually was interested in seeing if I had the Alzheimer's gene because that my grandma had passed away and she had Alzheimer's.

At the time, they were not FDA-approved to tell you if you had one of the three mutations for the BRCA mutation. That didn't even cross my mind. Also, I always thought about breast cancer, as in, you look at the women's side of your family. (And I actually got the gene from my father's side.) But again, you're thinking the women in your family. You're not thinking about genetics in that sort of sense.

“My dad had a cousin who had breast cancer, [and] passed away from ovarian Cancer. She had the BRCA2 mutation... [SO] I found myself in a Reddit hole of how you can download your raw data [from 23andMe], and then you can plug it into this other website.

I did that 2:00 in the morning, and it came up with BRCA2 positive.”

I guess in my naive mind, I thought, "No woman in my family has ever had breast cancer." That's like a close aunt or anything like that. And so knock on wood, I'm probably fine. So I think it was about a year and a half later, and we get an email saying 23andMe has now been FDA-approved to tell you if you carry one of these three mutations. Most often, they are common in Ashkenazi Jewish ancestry. And per 23andMe, I know that I'm 75 or so percent Ashkenazi Jewish.

Amy Cohen Epstein: On your mom's side or your dad's side?

Sara Martinez: On my mom's side, she's full Ashkenazi Jewish. My dad is half. So then, I remembered my dad had a cousin who had breast cancer, passed away from ovarian cancer. She had the BRCA2 mutation. But in my mind, it's my dad's cousin. That's so far removed. I wasn't thinking about it. And then, of course, I couldn't wait for the results. They said, "You would get the results in a couple of weeks." I couldn't wait. So, I'm going online and found myself in a Reddit hole of how you can download your raw data, and then you can plug it into this other website. And I did that 2:00 in the morning, and it came up with BRCA2 positive. 2:00 in the morning, that's how I find out.

Just thinking about that time... When you find out the worst information, you get hot inside. It's like your body reacts. I just remember feeling instantly sick to my stomach, hot inside, and just confused. But also, I had found it through this website, not really sure if this is accurate. And I couldn't call my mom. I want to call my mom right away, but I know she's sleeping. And then I ended up going to a genetic counselor. I think that Friday, who then confirmed with a blood test that I do carry the gene, so that's how I found out.

Amy Cohen Epstein: Okay, so let's take a pause. I actually just recently interviewed a genetic counselor, and we talked a lot about these tests like 23andMe and doing them and finding out a slew of genetic information about yourself without doing it side by side with a genetic counselor. So, one, I'm not a fan of doing them without a genetic counselor with you from the beginning, but I'm happy that you immediately talked to a genetic counselor because most people don't. I think finding out that kind of information without having that kind of counseling by a true expert right there with you, it's too much in so many different ways because it has so many different layers to it that you need to go through it with a true expert who can really then dive into the information with you and talk to you about all that it means, all that your options are, and really start with your family history.

And now you know why. To talk to a genetic counselor first to talk about your father's cousin and what that meant to have breast cancer and then die of ovarian cancer. Let's talk about all other people you can find out about, and then do the genetic testing, and then walk through what it means to have genetic mutations. And there's so many other genetic mutations and genes that we know about that we can then explore and make up a whole picture of who you are, Sarah, and what that means.

And then you can discuss your age, and where you are in your life, and all sorts of factors, and make really good, solid decisions. Making decisions based on where you are and preventive care, and then how that'll affect other decisions based farther down in your life. So, I'm really happy that you talked to genetic counselor right away. Of course, I wish you had done it from the beginning, but understand there's all this access to testing that is so easy. It's like a Christmas gift, a Hanukkah gift, a birthday present. Let's find out where, who we are, and where we come from. But then you get this incredible amount of information that's really anxiety-producing as you experience firsthand. And then, like you said, and I read in your article, what's the first thing you do? You Google it. And there's so much information out there, so much of it is really scary. So much of it is wrong and too much to go through on your own.

So you talked to a genetic counselor. You found out what it meant to be BRCA positive. BRCA2, I believe, and then what? What was your next step after that?

Sara Martinez: Yeah, and I couldn't agree with you more. I think the too much access is really difficult for especially someone who has anxiety, can overthink, and likes to do a lot of Googling and researching. So I do want to emphasize that seeing the genetic counselor, even though she confirmed the diagnosis and that was devastating for me. I felt so much better that I had the support. She could sit with me and say, "Here's your risk right now," versus when you hear your risk, lifetime risk, that's so overwhelming. But she's saying, "Here's your current risk right now." And especially with ovarian cancer, and I've been on birth control, that lowers my risk. All these certain factors in my life really help me understand my current risk, and just having that someone to talk to a human element.

So for me, I am the kind of person that likes to deal with things right away. And I like to feel it strongly and kind of get over it. And so it was no surprise to me of how I dealt with this. And I also know myself, and I'm someone who overthinks. And I am someone who struggles with anxiety. So I basically just wanted to have a preventative double mastectomy as soon as possible because I didn't want to think about this again. I did one ultrasound, and that was enough for me. And I was like, "I don't want to do this every six months." And I just felt like I just know myself. Honestly, it was the quickest turnaround. Within six months, I had my preventative double mastectomy.

Amy Cohen Epstein: How old were you at this time?

Sara Martinez: Oh, let's see. It was four years ago. I'm 35 now, so 31.

Amy Cohen Epstein: Okay. And were there any other factors that you thought about before having your surgery?

Sara Martinez: Let's see. Yeah, there were a ton of factors. So after I found out, or after I spoke with the genetic counselor, and nobody persuaded me into one way or another. And I even remember for other people in my life, it was really soon that I had made this decision. But for me, I knew I don't want to think about this again. And I have done all the research. And I want to move on with my life. And I'm going to put my health into my own hands. And so the first thing I got to doing was just researching on Google about what it's like to have a preventative double mastectomy. What are my options? There's all types of ways to have one.

I also joined different Facebook groups. There are different Facebook groups of people out there with the mutation previver groups and certain things like that.

I think I went to a couple support groups through force, and then I knew that I was going to do the double mastectomy. I then went into research mode. I figured out I wanted to do... I believe it's called direct to implant or the one step... I wanted to do that. I told myself, "I have read enough about the different ways.” I kind of had an idea of what I wanted to do. And then the next step was researching different doctors, which is a whole... That's difficult in and of itself. And then interviewing doctors. I ended up finding this incredible all-female team in Beverly Hills, and I felt like, as strange as it was, I remember after meeting them I felt excited. And I mean, who feels excited to have a double mastectomy? I don't know. But I felt like I finally knew I was in good hands. Yes.

Amy Cohen Epstein: Listen, I think it's scary, and it's really nerve-wracking and anxiety-producing, but I do think there's a level of excitement where you're doing what I preach, which is you were taking your health and your wellness into your own hands and you were making really tough decisions, but a decision to previve, and you were taking a chance to not go down a really scary road, choosing another scary road, but one that had more certain consequences, which was “I am going to take the risk of cancer really far down” as opposed to “I'm going to be afraid for a lot of my life.” And I think that is exciting. And a lot of people won't do that. That's really scary. But that's also really exciting.

And I think that there's another gal that I know that we do a lot of work with, and I do a lot of speaking opportunities with. She had a very similar experience. She was diagnosed with... Diagnose is the wrong word. She found out she was BRCA positive, and she's a history of cancer in her family. And she too had taken her life in her hands, and was excited, and now feels like this giant weight lifted off of her chest — I mean physically — and has great new boobs.

Talk to me about the actual surgery because some people I've heard absolutely who are like, "Well, you just wanted new boobs." And it's like, "Okay, that's incredibly ignorant." This is real surgery. This is very intense, and it's multiple surgeries. And you can have a great team who you're working with, but this is not a cakewalk. So if you don't mind, tell us a little bit about that and a little bit of that experience. What that was like?

Sara Martinez: Yeah, happy to. And I'm an open book with it all. It's funny because when I talk to other people about to have their surgery, I remember it as... I tell it as it really is so much harder in your head. When you wake up, you think I'm on the other side. And I do remember there are hard parts to it. Of course, it's a long recovery, but when I look back at it now, it's almost like childbirth. You're like, "That wasn't so bad." I think, you know what? I was more afraid of the pain. So before I had that, I've never even broken a bone. I have had a mole removed, and that was it. So I was so focused on the physical pain. I was obsessed with researching what is the pain. Am I going to be screaming in pain that I underestimated the mental effect it would have on me?

And that versus the pain, it wasn't that painful. I was actually surprised. I mean, I was lucky enough they did a nerve block. They did all these things to really help with the pain. So I think that was... I thought I'd built that up more in my head. And I really also did a lot of research on how to recover successfully. So I rented a hospital bed to make it really easy, and I stayed at my parents, who could help me.

I set myself up for success. I got all the things that I thought would really help me, and I was really determined and focused. And the thing I remember being the hardest is that you are mentally farther than where you are physically. So while I want to get up, take a shower, do my hair, I'm exhausted after just walking up the stairs. And that was really frustrating for me. And I didn't understand what it would actually mean when you can't move your body the way you want to. Time is slow even though it's probably just a six-week recovery, but when you can't get up yourself, it's so frustrating. Or being able to hold something that you could normally hold. Your body recovers so quickly. It really does.

I remember saying this is just going to be... It's going to feel big right now, but it's going to be the smallest little blip in my life. So I tell people, it was almost harder in my head. And yes, there will be moments that will be frustrating, and you will cry. And I even had a really good outcome. I love my boobs. I couldn't be more happy. I think there are also other people don't have that experience, but I was very lucky looking back, it wasn't as hard as I thought it would be.

Amy Cohen Epstein: And cancer is a lot harder.

Sara Martinez: Exactly. And I felt lucky that I was able to make this choice.

Amy Cohen Epstein: Yeah, 100%, you have the choice. Do you have siblings?

Sara Martinez: I have a sister. She also is BRCA positive. And she probably will have her double mastectomy soon. I think she and I are different. I'm someone with a personality that wants to do something right away, but not everyone is like that. And I think it's really important that people choose what they find to be most comfortable for themselves.

Amy Cohen Epstein: Absolutely. And tell me what your plan is with your gynecologist and your ovaries.

Sara Martinez: Yes. So that one, I think I at least have a little bit more time there, so that's good. And it does make me feel comforted that taking birth control — thank God my mom put me on birth control at 15 — lowers my risk. Yeah, I go see the oncologist every six months. I make sure I'm always there. I get my CA-125 tests. I do my ultrasound. I get all that done. And then I think the plan is when I'm 45, we start talking about my different options and things like that. I have a feeling that medicine changes so much that it could look different around that time, but that will be my plan. I feel like I'm kind of not thinking about it so much.

Amy Cohen Epstein: No. And those are good points to point. Those are good takeaways. So one is a lot of people don't know that being on birth control for a long period of time does reduce your risk of ovarian cancer, stopping ovulation, as does having lots of kids because when you're pregnant, you don't ovulate. As does breastfeeding, because when you breastfeed, you don't ovulate. This isn't to tell women you're bad person if you don't have children and you don't breastfeed. But there are significant benefits to your own self, and that does reduce your risk of ovarian cancer.

And then, in terms of options, there has been incredible research done really in the last decade that shows that the majority of ovarian cancers actually start in your fallopian tubes. And having your fallopian tubes removed when you are done having children, because it does make you sterile, significantly reduces your chance of ovarian cancer, which is a much different surgery than having a total hysterectomy. You don't have to remove your ovaries. It's done laparoscopically, and it's a very different road to take.

I had mine taken out when I was in my... At 45, I was done having children. My sisters did as well. And I'm not BRCA positive, but because my mother was so young with her ovarian cancer diagnosis, she was diagnosed at 48, passed away at 53. I'm considered at increased risk. So there, I think what you're doing in terms of your preventive care is so significant and so amazing. Having both vaginal ultrasounds, seeing your doctor so regularly, and being so on top of your health and wellness. I mean, I can't say enough. You're such an example for so many young women. I'm so excited to talk to you and to put these snippets out there in the world. It's so important. And just taking... Like I said from the beginning, taking control of your health and your wellness.

I don't want to say you're saying it in an apologetic sense, that you're a person who does things right away. I think that's obviously part of your personality, but I think that's incredibly important. And also just what you've done to make a difference for your own body. And like you said, surgery's not a cakewalk. And what you had to deal with at post-surgery and going through it, you set yourself up for success, and what you dealt with was certainly easier than the potential alternative. Honestly, just good for you. And sharing that information with your sister, who obviously watched you go through it, I would assume will help her and help her on her potential journey, what she decides to do, and any other family members and any friends that you have that might go down the same road or want to then find out information about themselves have a history of cancer in their family.

Most Ashkenazi Jewish people, Jewish women do not know that just by being Ashkenazi Jews, we are at increased risk for breast ovarian cancer. People think it's an Ashkenazi Jewish disease, specifically ovarian cancer. It's not. But we are at increased risk. And so that makes us... That gives us the need to be more vigilant.

And the last question I want to ask you about is for a lot of women, and I've talked to women, it's difficult to go down the road in terms of insurance, and figuring out, and going through the process, and finding doctors who will take care of you. Did you come up against any hurdles or anything along those lines?

Sara Martinez: Oh, Insurance was like salt in the wound. I like to say. It is so confusing. Especially when you're being given this information, you're overwhelmed. You're having to make these decisions, and now you have to navigate insurance and healthcare. That alone is confusing. Having to call with the codes to make sure you understand what your benefits are. And you're getting one answer here, you're getting one answer there. It was a really frustrating process. I ended up going to doctors that were out of network. It ended up being so expensive for me because my policy, which is not very clear because you think you have an out-of-pocket cost, so they'll cover what everything else, they only paid for my double mastectomy at Medicare rates. And what I ended up owing, I think, was about $54,000. And I'm pretty sure they paid maybe $8,000 of it.

I luckily had been saving my entire life and had probably about $54,000 saved. So I was really lucky to be able to pay for that because I know that's not everyone else's situation. And I just thought, "This is why I've been saving," right? What else am I going to? This is my health, my happiness. But it was so confusing to really understand how much they would end up paying.

I also felt as if... Because I tried to make the case that these were the only doctors, I could find that did this type of surgery. I think it's maybe a little bit more common now, but four years ago, I couldn't find anyone in my insurance that did the direct implant, and that's what I wanted. And so for me, I thought there was a case there of saying, "I need to go out of network to be able to choose the type of surgery I want to have," but they denied that. So, I unfortunately had to pay the money. But it was really, I think there needs to be something better out there because I think not only are you so overwhelmed and you're dealing with so many emotions to have to navigate the insurance part of it, you really do need more support.

Amy Cohen Epstein: And the alternative, if you were to get cancer, would be so much more expensive. You would assume that insurance would be happy to cover that because the cost would be tenfold if you ended up with cancer, and chemo, and radiation, and the surgeries on top of that, so it's a real cluster. That is one of the things that the Lynne Cohen Foundation that we work really hard to do and to... I mean, just from the beginning, we have women that come to us that can't even get BRCA testing because they don't have enough family members who have had cancer. They're not deemed at high enough risk, and just being able to do the testing, they can't get covered by insurance. So it's a real... It's a tough road to go down if the right people aren't holding your hand. So good for you for navigating that on your own, it sounds like.

And also using your savings to save your life. There's no better cause, obviously, but that's a lot to do. And it sounds like you had a really good support network behind you, so clearly that's one of the reasons you were able to do that. And you're such an example to so many women.

Thank you so much for taking the time to speak to me today. I'm really excited to talk to you and to have had the opportunity to do so and to tell your story. I think there are many other opportunities that we can talk together. I know you haven't. How old is your baby?

Sara Martinez: She's eight months.

Amy Cohen Epstein: Oh, my God. Well, congratulations. Mazel tov. And when she's a little older and you have more time on your hands, let's do more things together and get you out there so more people can hear your story and be inspired by the road that you have taken. So thank you so much for today.

Sara Martinez: Thank you so much. It was a true pleasure for me to be able to share my story, and I just think it's amazing that you have this podcast. And I think it will really help so many people. So can't thank you enough as well.