Ep 99: A Story of Strength and Hope from Caitlin Zikoyanis
Fertility Forward Episode 99:
Knowledge is power, and you are your best advocate. Sharing her story on the podcast today is former patient Caitlin Zikoyanis, who underwent genetic IVF to eliminate the BRCA 2 gene. Tune in today to hear her story of successfully removing risk from her children’s lives through fertility treatment with RMA’s Dr. Matthew Letterman. Learn from what she would do differently and where she found her best support, and hear us bust a myth about recessive genes. Find out how genetic IVF can completely eliminate BRCA, and what Caitlin would like anyone dealing with the same issues as her to know. At the same time, they navigate the minefield of fertility treatment and cancer. As always, we finish with a moment of gratitude from each of us. Thanks for tuning in!
*Rena: Hi everyone. We are Rena and Dara, and welcome to Fertility Forward. We are part of the wellness team at RMA of New York, a fertility clinic affiliated with Mount Sinai Hospital in New York City. Our Fertility Forward podcast brings together advice for medical professionals, mental health specialists, wellness experts, and patients, because knowledge is power and you are your own best advocate.
Rena: We are so excited to welcome to Fertility Forward today, Caitlin Zikoyanis, who is a former patient of RMAs own Dr. Matthew Lederman, who is gonna come on today to share her story of strength and hope.
Caitlin: Thank you guys for having me appreciate the time that you are taking out of your day.
Dara: Well, we appreciate you and really appreciative of you for being open and sharing your unique fertility journey. So you're here today, definitely to share with our listeners your experience at RMA, where did it all start? What led you to fertility treatments?
Caitlin: So I'm a BRCA2 mutation carrier and I received, I got the gene from my father, the only child of three, and my family has a very distinct history with breast cancer. And when I was younger, there was a lot of family members, especially women who developed breast cancer and died very young. And when they were able to find out that the gene ran in our family, my father went and got tested and he was a BRCA2 mutation carrier. So at the age of 25, I went and I got tested and unfortunately I was a carrier. And at that point in time, I developed a game plan with my OBGYN and we put some preventive measures in place. So at 25, I started, every six months I got tested. I did a mammogram, I did an MRI with contrast and every six months, my test came back great, no problems, ready to go. And that at 29, my husband and I, you know, decided we were going to try to have a family. And I was like, nope. We have to wait for my MRI with contrast before we can continue that discussion. And that was the year something came back. And what I ended up having was ductal carcinoma in situ, which is the earliest form of breast cancer that develops in the duct of the breast. And it was stage zero so it hadn't moved anywhere. It hadn't gone to lymph nodes, nothing. I went to Maimonides out of Brooklyn and I met with the best surgeons. We got a game plan in place. I underwent a double mastectomy with reconstruction in the same surgery that day. And when I had originally gone for my mastectomy appointment, my breast surgeon had said to me, have you ever thought of genetic IVF because it is so dominant in your family. And I had never heard of that. I had no idea that you could go for IVF to, you know, get rid of a gene. So my plastic surgeon had, he had used RMA and suggested to go to RMA for further consultation. So while I was going through the whole mastectomy with them, I scheduled an appointment with Dr. Lederman and we discussed my family history and then what, what I was going through. And I went for some initial testing. I found out that I had decreased ovarian reserve. I had a lot of infertility issues. So after I underwent the surgeries, I met with him and then I started my IVF journey the following year.
Dara: Wow. I mean, I think it's fabulous that your plastic surgeon, you know, brought it to your attention. Was it something that, well, a couple of questions I have…
Dara: Number one, your OBGYN, you know, was this ever a discussion on your OBGYNs part and also number two, what was 25 in terms of the age of 25? What made that year extra special to start testing?
Caitlin: So with my OBGYN, she knew I had a family history of breast cancer, but we didn't know it was the BRCA at that point in time. So infertility or any type of genetic IVF never came up with that situation. Now, 25 was when my dad, I was 25, but at that year, my dad had tested and he found out he was the carrier. So I went right after and I remember going into the appointment and the doctor saying to me, do you think you're mature enough to know this information? Yep. And that was, you know, it's hard to swallow when you do find out that you are a mutation carrier, but in my opinion, it was probably the best thing to happen because unlike the women in my family who unfortunately passed away and had to deal with it, I knew what was coming.
Rena: Wow. And how was that for you? I mean, that's such a, like, double-whammy to get the news and then also finding out about fertility treatment and have to move probably relatively quickly. That sounds like so much to process.
Caitlin: Yes. I did have to move pretty fast because like I had said, my ovarian reserve was not great. I had to do three retrievals, the first two resulting in nothing whatsoever. And then it was the third retrieval that I was able to get two embryos, that was sent off for the PGD testing. And by some miracle, both of them came back without the BRCA mutation.
Rena: And were you able to do, did you have to do any sort of onco treatment prior to doing the retrievals? Or did you have to do the retrievals first or how did that work, you know, to preserve your fertility before you could do any, did you need any oncology treatment?
Caitlin: I did not. So because it was stage zero and nothing had gone to my lymph nodes, I did not need radiation. I did not need chemotherapy. It was just the more drastic, double mastectomy situation.
Dara: I think that's great that, you know, your father took it upon himself to get tested, which, you know, in turn led you to get tested. And I really do think that, you know, the idea, if you have any family history, it is a really potentially good option. And the fact that you were so on it, every single, you said every six months?
Caitlin: Every six months.
Dara: Yeah. Yeah. And I'm just like, I'm proud of you for getting tested right before you were considering starting a family.
Caitlin: Yep. Yep. And, you know, I still do have to go for ovarian scans. You know, that there will always be some type of, you know, issue with the BRCA in other realms, the breast cancer. I know like I've nipped it, it is done. And now my kids don't have to worry about it.
Rena: Wow. And it, what an amazing gift to give your children. That's so powerful.
Caitlin: Yes, it is. It's funny. I have this quote that I always use and I feel like it inspires, you know, people that I talk to, it's, you don't have a right to the cards you believe you should have been dealt. You have an obligation to play the heck out of the ones you're holding. And with that information of having, you know, being a carrier, you know, I've been able to get ahead of what it did to me, and then obviously what it could have done to my children.
Rena: Wow. I love that. That's an amazing quote. I'm gonna use that.
Caitlin: Love it.
Dara: So yeah, you've definitely been through a lot and I'm just happy that you're here to share with everyone that's listening right now, your experience to, you know, provide some insights, you know, for them, if there's any family history. For me, I would love, you know, I wish that there was more education or at least this was something that was implemented, you know, with an OBGYN, you know, you go for your annual physical or your pap smear. It should be a discussion, you know, to help like yourself with earlier treatment and earlier protection.
Caitlin: And I think there's a lot of misconception out there about, you know, getting genetic information from your father in terms of breast cancer and ovarian. And I've had a lot of people say to me, oh, you must have gotten this from your mother. This gene must have came from your mother. My mother has no history of anything on her side. It's my father's side. And I think that is also something that kind of needs to be brought to light as well. And even growing up, you know, my OBGYN, thankfully she saved my life with the game plan. It was never like, oh, it's your father's side. It never was really like, oh, we should look into this further. And I think with my situation, that really kind of changed, not just her outlook, but just how they kind of dealt with breast cancer with young girls, especially with the history on the father's side.
Rena: I think that's a great point to make. Yeah. I think often we associate breast and ovarian cancer with females, but to make the point that it's not gender specific is really important for people to know.
Dara: I remember it was Dr. Lederman when he came on, he's been on quite often. We do have one, a session that we interviewed him on the BRCA2 gene. And that was the first time I ever heard that it's not just something that we see in women that we also see in men. And I'm happy that you mentioned that. I mean, not happy that it was, you know, the situation happened to you, but the fact that you're reminding our listeners, if they don't already know that it's not just something that women carry, that men can carry it as well.
Dara: So is there, you know, would there be anything that you would've done a little bit differently throughout? I mean, that's like a very loaded question, but is there anything that you feel like you, you know, or, or something that you wanna share with our listeners to let them know about when they're going through or starting to think about their own fertility journey?
Caitlin: I definitely would've frozen my eggs much earlier in life. The quality of my eggs were not great. It was just a little bit of a mess at that point in time, but my body had also been through so many surgeries. So, but I think at 25, if I would've known like, listen, you know, this is what was going to potentially happen. I would've froze my eggs and at least hopefully I would've had a higher number of them to work with. I never did have a high number. And by some miracle with the two that the only two I got worked out, that's the route. I would've at least started the conversation a lot earlier in my life.
Rena: Well, I think even for you too, the doctor was kind of reticent at 25, you know, like, oh, do you think you can handle this information. And that you were super strong and had the strength to say yes. But I think, you know, it can be tricky. You know, when people find out at a young age to have to deal with thinking about, you know, I actually spoke to a couple people recently, some patients who are preserving fertility, but for down the line, they're not ready right now, and so that in itself is very hard for them because they're trying for something, because medically, they were told you need to do this now to set yourself up for success later, but it's not the space they're in. And I think that can be quite hard emotionally.
Caitlin: It definitely is. I mean, to be 25 and then just have to start with the mammograms and the MRIs and the mammograms and all this other testing and blood and, you know, even with the fertility treatments, you know, obviously learning results that you may not want to hear. It's definitely harder when you're not mentally prepared to have children at that point in time to be thinking about that. And I didn't wanna start a family until I was around 30 because I wanted to have, you know, a house I wanted to have this, I wanted to be, you know, set so I could have children and bring 'em into a stable environment, but it's a little hard to, you know, envision that at 25.
Dara: Oh for sure. I think it's really, you are a great advocate for people who, you know, have this in terms of family history. And I think this is a great thing for us to learn and, and, you know, for us as practitioners, granted, you know, we're not doctors, but to really have this conversation and really help in terms of the education process, to let people be aware of what the potential options are and to ask questions and good for you, that in terms of you were an advocate and now you're, you know, an advocate for yourself and now sharing your story with others and hopefully help encourage them to ask questions and to seek, you know, the options that work for them.
Caitlin: Yeah. I mean, it is definitely a tough road to go down, especially when you are a BRCA carrier, but it is something like I had said before, I lost so many women in my family at very young ages, like thirties, thirties, early forties. And I remember going into my breast cancer surgeon and telling her, obviously I wanted a family and she said, she's like, if you would've been pregnant and this had developed, it would've been a very bad situation. You may not be here today is basically what she had told me. So it is definitely not the easiest. But sometimes things happen at the right time. And so now I have two children who are not carriers.
Rena: Do you have any suggestions for resources or supports for people to turn to if they're either going through something similar or they're just looking to kind of get information if this sparked something for them?
Caitlin: I mean, on Facebook, there's some definite support groups. A lot of it has been like my surgeons have, like, paired me with people who had gone through what I had gone through. I've also spoken with people, you know, at RMA. They paired me with, you know, someone who had been through a similar situation as well and that was what I had really used as a support group. Facebook does have some great sites for people who have infertility issues or who are BRCA carriers or things like that. And that's what I kind of used.
Dara: That's great. I'm happy that you did seek out and find some support in the community. And I think just by you telling your story to our listeners, that's giving them some support as well. So thank you so much for being here.
Caitlin: Of course, of course. And I have to say Dr. Lederman is the best. So for anybody who needs any type of, you know, genetic and fertility, or just in fertility in general, I mean, he was by far the best supporter I could have asked for. So if it wasn't for him, I wouldn't have my two kids.
Rena: Yeah. We love Dr. Lederman. He's the best. So kind and compassionate and empathic. So we love him and we're so grateful to have an RMA.
Caitlin: Yes, exactly. Did you guys have any other questions about anything or I could answer for you?
Dara: I think you covered quite a bit, and I think our listeners got a good taste of kind of the steps you took and, you know, the resources that you used. But if there's anything else that you wanna share or end with, please feel free to share.
Caitlin: I just think the biggest thing that anybody can do is obviously be an advocate for their own health. You know, doctors may tell you one thing and it's best to get checked if there's any family history, especially for breast cancer, you may be a BRCA carrier. You also may not be. But it doesn't mean that if you're not a BRCA carrier, but you have family history that, you know, you're not going to develop something. I think that's also very important to understand. If you are a BRCA carrier, I just think having that information is just so important and it's important to get ahead of what may potentially happen to you. And I think genetic IVF is the best way to eliminate it. My dad, you know, passed it on to me. I'm gonna be the last carrier from him. And then my kids are like, as I say, on the family tree, new growth. Like they're not infected, they're gonna be healthy. I don't have to worry about it. And that is my story.
Rena: Well, thank you so much for coming on and sharing and for being open and honest, I think this was so incredible to hear about your journey and your bravery and strength. And we're so grateful that you came on to share.
Caitlin: Awesome. I appreciate your time. Thank you.
Dara: So how we end our sessions is with some words of gratitude. So Caitlin, what are you grateful for today?
Caitlin: Being a breast cancer survivor. My family, my two perfect children. And just life, just life.
Rena: Dara, what about you?
Dara: Well, it's coming on the Jewish New Year. So for me, it's a time of reflection and just, you know, grateful for the change in season and for yes, for what's to come down the road for the unknown, you know, there's, there's a lot of potential excitement, exciting things this year. So just the potentials of the future. What about you, Rena?
Rena: Love that? I love that you're excited about the unknown instead of feeling anxiety about it, which is so opposite from, you know, how many people feel. You know, I'm certainly, I'm grateful for health. Definitely. These sessions always really, really remind me how we need health. You know, health is wealth. So certainly that. And then, yeah, just life, you know. It's fall. Time for new beginnings and sort of this mindset of like, you know, we can get busy living or we can get busy dying and I'd rather get busy living and go into the unknown and leap. And so I'm grateful to just be feeling that energy,
Dara: A-woman to that. Thanks so much again, Caitlin. All the best.
Caitlin: Thank you. Bye.
Dara: Thank you so much for listening today and always remember: practice gratitude, give a little love to someone else and yourself, and remember - you are not alone. Find us on Instagram @fertility_forward and if you're looking for more support, visit us at www.rmany.com and tune in next week for more Fertility Forward.