Ep 7: Tackling BRCA and IVF: A Patient Perspective with Amy Switzer
Fertility Forward Episode 7:
Infertility struggles are incredibly challenging, both mentally and physically. So, imagine dealing with these hurdles alongside a life-altering diagnosis. This is the position our guest today, Amy Switzer, was in a few years ago. Amy knew that she had to do IVF as it was difficult for her to get pregnant naturally. On her journey to conceive, after genetic testing, she was diagnosed with BRCA1, the breast cancer gene. In this episode, Amy shares some of this difficult journey with us and how the IVF with a BRCA diagnosis proved to be a silver lining. She also sheds more light on BRCA, such as who should get tested, her life with the diagnosis, and her plans for the future in light of it. Amy has used BRCA to empower herself and others to take control of their health and diagnoses.
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: Amy Switzer grew up in Saint Louis, Missouri, and went to the University of Kansas for college. She currently lives in Dallas, where she met her husband. They found out early on it was going to be hard to conceive and had to do IVF to grow their family. Right before they started IVF, they went through additional genetic testing because of Amy's family history. In early 2017 she found out she was BRCA1 positive, which was going to affect her life and her future children's lives. Since they had to go through IVF, it was a blessing in disguise that they could prevent any future child with carrying the BRCA gene. After a long journey of infertility, she gave birth to her miracle baby girl Meadow, who was BRCA free in 2018. In this episode, we talked with Amy about her journey to conceive after she found out she was a carrier for BRCA, life with BRCA, who should get tested, how to go about getting tested and how Amy found her strength and resilience during her journey.
Rena: I am so excited to welcome today to fertility forward a personal friend of mine, Amy Switzer. Thank you so much for coming on today, Amy.
Amy: You're welcome. I'm glad to be here.
Rena: So Amy and I met a few years ago. I don't want to think about how many because I will feel old in New York City when we were both volunteering for the same organization. And Amy now lives in Dallas. And she reached out to me a few years ago when she was trying to conceive. And I'm pretty public about my own story. And I think, Amy, that’s how you knew that I was involved in this, right?
Amy: Yes. When you kind of put it out in social media it was a great opportunity for me to reach out to you because I didn't know many people going through this personally. So that's when we reconnected.
Rena: So and I was so I remember, so thrilled to see your name in my inbox and that was one of the, you know, really big silver linings for me, for opening up and sharing my story is that people kind of came out of the woodwork to say, Hey, thank you so much for sharing. I'm going through this too. Let me share my story with you. Will you talk? And so it was, you know, a very powerful connection to really sort of bring people together.
Amy: Yes, definitely.
Rena: You know, you're so brave to come out and share your story and I'd love for you to tell our listeners kind of what you went through. I know it will help so many people and inform so many people. I didn't you know know a lot about what you went through, either. And it made me really question Should I go get tested? What can I do for myself? So I'd love for you to share with people your own journey.
Amy: So when my husband and I wanted to start, conceive and start a family, we were having some trouble. So we found out pretty quickly that I had diminished ovarian reserve and it was not really gonna happen for me, naturally, to have a child.
Rena: And then how old were you at the time?
Amy: I was 33.
Rena: Okay, so you're fairly young?
Amy: Yes, fairly young. Basically they said that I was referred right away to a fertility specialist. And she said, you know, we need to go straight to IVF. Your numbers are so low. This is just the reality of it if you wanna have a child. So hearing that news was very shocking and processing it and you know, is this gonna work? Am I gonna able to have a child? So before we started IVF, we actually started to get some testing done. We decided to do the BRCA a test before I started IVF because there was ovarian cancer that ran in my family. My grandmother, who passed away in her early forties from ovarian cancer, and my family always knew about BRCA and I feel like it's really come out in the past, like 5-10 years of the history of it and how important it is for your family to get tested. And my family's just kind of been, like dragging their feet. Should we get tested? Do we really know much more about it? You know, it just was so new. So I actually pulled the trigger and got tested. And sure enough, I was positive.
Amy: For BRCA
Rena: How did you feel when you found that out?
Amy: So I found that out in January of 2017. So it was only two years ago, and it was just kind of earth shattering. I didn't really know how that was gonna affect me. It was you know a lot to hear that news that I was at such high risk of breast and ovarian cancer. I already knew that my grandmother had passed away in her early forties and I was not too far off from that and then dealing with that news and then dealing with having to go into the IFV and if I'm gonna be able to have a child. So when I found out I was positive that it was almost the greatest lesson for me going into IVF beforehand. They basically explained to us that knowing that I have this mutation a probe can be built to my specific gene sequence that they can test the embryos to see if they carried my BRCA gene or if they do not
Rena: Ok and you’re talking PGD testing, correct?
Amy: Correct. Yes. And BRCA can be passed on. It's a 50/50 chance it can be passed on to a girl or boy does not matter. So it was a true blessing that I found out before I started. So I went through three rounds of IVF until I got one embryo without BRCA. So not only was I dealing with very low numbers to even get any embryos, but they kept on coming back with the BRCA gene.
Rena: Wow so you did three retrieval cycles to try and find an embryo without BRCA?
Rena: That's so much.
Amy: Yeah, it is a lot, but it was very important. I knew I had this power. I had this, like, amazing tool that I could do that I could bring a child into this world to start off and not live a high risk. They could just start their life as anyone else of living, you know, not in high risk of ovarian or breast. And it was the greatest thing I could ever give a child.
Rena: Wow, yeah, that power’s so incredible.
Amy: And it was amazing. I mean, there's so much as a parent you cannot control for a child and to be able to control that one simple thing. It's just earth changing. It's just amazing. So we got the one embryo that did not have BRCA and we transferred and it was successful. And now I have my beautiful baby girl who is BRCA free, and it's just amazing.
Rena: Wow, I mean, that gave me the chills for sure. And I you know remember finding out you were pregnant and being so happy for you. And but I feel like also to maybe go back and share with the listeners to how tough that time was also, you know, to keep doing cycle after cycle, looking for an embryo also dealing with, I mean, how did you deal also with knowing that you were a carrier? How did that play into everything you were going through?
Amy: It was almost put on the sidelines for me personally when I was going through it because it was so much I was dealing with at one time, I almost wasn't even thinking about myself. I was thinking about what was my future of a child, which, you know, it was kind of I had to think about myself, too, but the priority for me was the child. So I knew my plan was gonna be that I was gonna have to start screenings right away, which includes your transvaginal ultrasounds every six months and then doing your breast, which is every six months alternating from mammogram or MRI so I knew that
Rena: For the foreseeable future? That's what you do to screen if you're a carrier?
Amy: Yeah, so that's something that you do regularly. Also, you could do a blood test, which is a CA125 for ovarian. But the problem with ovarian cancer is that it's so hard to detect. That's why they call it the silent killer, that the ultrasounds, the blood tests, they're very hard to see anything. And sometimes when you do see something, it's too late. So ovarian cancer is the hardest thing to detect. So I do screenings now every six months. That's just gonna be a part of my life. The other thing is that you can do preventative surgeries, which is do a mastectomy and then also oophorectomy or hysterectomy, and I will do that.
Rena: Can you tell our listeners what each of those are? Each of those surgeries?
Amy: So your mastectomy is removal of your breasts. You can, you know, restruct them to have implants or you cannot. You can reconstruct them to take tissue from your body and other parts to create, I guess, new type of breasts. But the whole point is a mastectomy is that they are removing your breast tissues so your breast tissue in your high risk of BRCA, that's where they're gonna be finding the breast cancer. So, many BRCA positive patients they move forward with their mastectomy to lower the risk and the risk gets lowered all the way down to less than Rena: Wow. And what's the percent before?
Amy: The percent before is oh god it changes all the time from just different statistics. But it's it's anywhere from like 70 to 80%
Rena: Wow so that’s a huge decrease.
Amy: I mean, it's huge. There's quite a range of it. And then your oophorectomy you can have removal of your ovaries and fallopian tubes, and then your hysterectomy that's removing your uterus so you know there's pros and cons of both. Both ways you go directly into menopause and you'll be put on hormone therapy, and you have to be on that. A lot of women are on it for the rest of their life. It's some type of oral medication to balance out your hormones. An oophorectomy is not as a extreme surgery as a hysterectomy, but some women choose just to do the oophorectomy. They don't feel the need to do the full hysterectomy removing of the uterus, because, really, the history has shown that it's just the ovaries and fallopian tubes they’re at the most risk when you’re BRCA positive. But some people have different opinions about it. My plan right now is that I would probably do just the oophorectomy.
Rena: And now, if you do that, would you still be able to carry a child? Or would you need to finish your child bearing first and then do the surgeries?
Amy: So there's a couple options. So if you have just an oophorectomy and you still have your uterus, you can still carry a child. You can transfer your embryo to your uterus, but you would need your embryo created before you had your oophorectomy.
Rena: So you would need to do the egg retrieval cycle first and create embryos before?
Rena: And then you could still carry a child. And then what about
Rena: With a hysterectomy?
Amy: Hysterectomy you can't because you're removing your uterus, and obviously you need a uterus to carry a child.
Rena: So for that you would need to be done with your child bearing and say okay I’ve, you know, carried my children. I'm done with that phase and then move forward with that.
Rena: So these are obviously, I mean huge considerations and, you know, very serious ramifications. And it's a lot to really process.
Amy: Yes, it is. It’s definitely a lot to process. I think the only way to really handle it is one step at a time. Do your screenings do what you need to do as far as growing your family and what you can do and what the power you have is, you know, I was able to stop the gene for my family like my daughter will not pass it on unless, you know, thinking in the foreseeable future, if whoever she married if for some reason that they had BRCA. But the most thing I could ever do right now is stop it for her, which I did. So that's really all. I could do it this time. So right now I'm just It's step by step. You have to just take it day by day.
Rena: I think that's amazing advice. You know, one thing at a time, step by step. I like to call it micro planning. Where if the macro is just too big, you dial it back one day at a time, One thing at a time, and you manage what you can.
Amy: Right. Absolutely. Sometimes it’s just so overwhelming when it's you realize you have so much to deal with.
Rena: Oh sure, sure. And how did you get through this time? I mean, did you have a good support system? Did you have a therapist? What were kind of your supports and coping mechanisms?
Amy: Yeah. I mean, my husband was unbelievable, like I definitely could not have gone through it if I didn't have a supportive partner. He literally was at every single doctor's appointments, ultrasound scanning. I mean things you wouldn't, like blood work. You wouldn't even need someone to come but just physically, mentally being there was he was there. So that was huge for me. My family, huge supporters. I mean, just so by my side, every step of the way. A lot of my friends. I mean, some of my close friends knew, but a lot of my kind of, I guess bigger network didn't really necessarily know. I kind of wanted to keep it private. I kind of felt like if everyone knew, everyone would be asking me How's it going? How's it going? I just I wanted to live as I had to go through so many retrievals and it wasn't going well. I didn't feel like I wanted someone to keep saying, How's it going? How's it going? So I was in a support group. There was like a local support group through Resolve, and that was great. I was able to connect with women who were going through fertility issues. There wasn't anyone in the group that was going through my specific issue with BRCA. I never went to therapy. I just that wasn't really my thing. I had such a great support system already around me from family and friends, so that's just kind of how I got through everything.
Rena: That sounds, you know, like you had great supports and you know, you really advocated for yourself and you found the balance for you. You know, sharing with a certain group of people going to a support group, and that really helped.
Rena: And did you find you're able to connect with other women going through infertility? Even though they didn't have your specific case?
Amy: I did. I felt like it was almost like this little secret society that no one wanted to be in
Rena: That’s what I always say. The sorority you never wanted to join.
Amy: No, you just you don't want to be in. But you're glad you found each other because look would I probably have been friends with these people otherwise? Probably not. But it was a way for a stranger to me to feel so close, like they could actually understand what I was going through because they were going through it themselves. And I really think it's not just through infertility, it's through anything. If anyone has not truly walked a mile in their shoes, they don't understand what that person is going through.
Rena: Absolutely. I mean, I think for me, the whole experience made me think Wow, how did I, you know, respond when someone told me that they were dealing with, you know, any other disease. I probably responded in a way that was not helpful to them. Just knowing how I felt and people responded, You know, who hadn’t been through my experience of infertility.
Rena: And I think...
Amy: It’s true. It really it helps you kind of be more empathetic to people of different issues and different things that people are dealing with in life. I mean, everyone has their struggles. It's just their different story of what their life is, and, you know, it's when you're going through something yourself. You kind of learn of how to deal with other people's struggles too
Rena: Right. And I think, you know, I say, look, everyone's experiences their own. And to some people, you know what we look at and think is not a big deal. To them it's the end of the world. And who are we to judge and, you know, kindness, empathy. Life is hard, you know, and it's better spent, I think being kind.
Rena: So what other you know, pointers or tips do you have for anyone listening, who's going through something similar?
Amy: I would say, definitely be your own advocate. You know, going through infertility is so overwhelming, so challenging. And it's just a lot to handle, like with the meds, with understanding everything and all the different steps and things that go wrong. Even though you have a plan, I just think that no matter what, even though you might be in your the best hands, the best doctor, the best nurse, you have to be your own advocate. Study it, learn it, research it, talk to other people, try to find a different way if it's not working, because if you're not gonna do it, no one else is gonna do it for you.
Rena: I love that. I mean, I think knowledge is power and you know as you said right, you're your own best advocate. And don't be afraid to ask questions, research and learn.
Amy: Yep, absolutely.
Rena: And what about anyone listening? That's wondering, Ok, and now you know, I'm thinking that my grandmother had breast or ovarian cancer. Now I'm wondering if I'm a BRCA carrier. What should they do to find out?
Amy: I think it's really important. There's two things. One is ask yourself is there any type of cancer, mostly breast, ovarian, prostate, pancreatic? Are those cancers history in your family? I'm talking back to your grandparents. And secondly, are you Ashkenazi Jewish? If the answer is yes to both, then that's really when you need to say, ok, it's time to call my doctor. It's time to call my OBGYN or my regular physician and say I want to talk about getting BRCA tested. BRCA is very prevalent in Ashkenazi Jews. So that's something really to consider to doing BRCA Test is just a blood test. It's nothing extreme. You know, you will go to genetic counselor. They will refer you to one so they can go over your results with you and talk about the plan for you. And you know what is gonna be next for you. The best thing is to really answer those first questions. Is there cancer in my family history and two am I Ashkenazi Jewish? And if the answer is yes to both it's time to call your doctor.
Rena: Okay. And even if you are say you’re really conservative, you know, anxious person and you don't answer yes to those questions your doctor can still test you, correct?
Amy: They can test you but it most likely will not be covered by insurance. It's only really covered by insurance if you do have the history and if you are Ashkenazi Jewish and there is a specific form that you will have to you know, fill, out your family history of cancers and mark the box that says Ashkenazi Jewish. But if you just feel like I need to know about this and I'm very anxious, Yes, you can talk to your doctor about it, but it most likely will not be covered. And it is a very pricey test.
Rena: Okay. And now you know, I know you welcomed your daughter 16 months ago. And what does your kind of future look like for you in terms of BRCA and family building and where you're gonna go?
Amy: So we would love to have you know, another child. I mean, we are so blessed with our daughter. We have gone through recently another two rounds of IVF. I am a little bit older. It's been two years since the last time I went through my cycles. So things have changed a little bit for me. I have not made any embryos. So right now I'm kind of in a different boat as far as just finding an embryo without BRCA. Now, I'm at the point that I need to just get an embryo made. So currently I'm just taking about a few months off of taking care of my body of trying to maybe increase the quality of my egg. I, you know, doing acupuncture. I'm changing my diet. I'm taking numerous amounts of supplements and I'm hoping that helps the quality of my egg and we'll try again. And if it doesn't work out, then I'll have to move forward with my surgeries. And I'll just live with my blessed daughter. So that’s kinda the plan.
Rena: Wow. So it sounds like you know, you're so brave and so inspiring and you know, to move forward and try again. But also, it sounds like you're very grateful to be in your moment with your daughter and have that too.
Amy: Yes, I am very blessed. I mean, I know there's so many families that are still struggling just to have one child, so I know how blessed I am. But I do really would like to have another child. But if it's not in the cards, it's not in the cards for me. I can't control, you know, this type of destiny. I can only do what I can do.
Rena: I mean, I think it takes a lot to come to that mindset. And I think, you know, it's so hard and something people struggle with all the time. You know, how do you accept what you have in our destiny? And, you know, fertility is it's just so tough. It's really, really tough.
Amy: It is tough. I mean, it's something that you know, you just can't control it like it's hard when you like. You can't go out and buy it at the store. You can't. You know something when it's with your health. You know, that's also with cancer patients. You can't control it. You just you can't. It's just really hard to deal with things that you can't physically change.
Rena: Sure. And I think, you know you can do everything medically possible. You know you can go and you can try and do more retrievals, try and create more embryos, but there's still no guarantees, and I think that's really hard to wrap our heads around.
Amy: Yeah, absolutely, definitely no guarantees which you all know there's no guarantees in life with anything.
Rena: No. And I think, you know, it goes back to just try and, you know, be present, be grateful, practice gratitude and really, you know, find people to uplift you and be positive.
Amy: Yes, definitely. It's all about who you surround yourself with and what your support system is, and that's just it's truly important of how we can move forward.
Rena: Yeah, you know, I'm so grateful for you for sharing your story coming on. I think this will certainly touch so many people. And I like to, you know, end our podcast with having you share a gratitude so we can end it on a positive note. So is there’s something, you know, gratitude that you're able to share with our listeners today?
Amy: I'm just thankful for my health and thankful for my family and my beautiful daughter that, you know, I just live for her. She just has given me so much joy. So I hope so many other families that are struggling can see that there is light at the end of the tunnel and stay hopeful.
Rena: I love that. And I think you know my gratitude is you know, people like you coming on, you know, reaching out. You know, those few years ago saying, Hey, you know, I'm struggling. Can we talk? You know, being brave to share your story, going through it. And I think you're so inspiring, you know, to be positive and talk about the light at the end of the tunnel. And, you know, I hope your story will inspire and lift up other people and inform them too.
Amy: Yeah, I hope so. I think I mean as hard it is to put yourself out there and be vulnerable. I now have a duty almost because I have to talk about it. I need to educate people and let them know that knowledge is power.
Rena: Totally. Is there a site or someplace to direct people if they wanna learn more about BRCA?
Amy: There's so many different websites. Bright pink is a great website. American Cancer Society. You know, there's so much information on there. There's so much about BRCA right now on the website. There's just a lot out there.
Rena: Okay? And we'll certainly post links to those on our page also so people can go get reputable information.
Rena: Thank you so much for being on today. We so appreciate it. And for sharing your story and being so brave and and sharing all this with our listeners.
Amy: You're welcome. Thank you for having me.
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.