Posted on March 4th, 2021by RMANY

Ep 52: Hope and Healing with Jen Rhodes

Fertility Forward Episode 52:

Undergoing cancer treatment can be incredibly difficult and is complicated even further when you have to consider how it impacts your fertility. Today’s guest, Jen Rhodes, faced this challenge when she was diagnosed with Stage II breast cancer in June 2011, at just 26 years old. After her bilateral mastectomy, followed by a chemotherapy regimen known to have reproductivity toxicity, Jen was advised to consider freezing her eggs. In today’s episode, we talk about Jen’s recovery and what it was like having cancer so young. We then hear about the experience of freezing her eggs and what happened when she decided to start having children. Although it was disappointing having her eggs drop off during thawing, Jen bravely elected to pause her oral chemotherapy and undergo IVF. She talks about what this was like and shares a message of hope for those who may be going through similar struggles. Infertility treatment has its ups and downs, so it is important to trust your medical team and have faith that you will get through, just like Jen did!

Transcript of Episode 52

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 from medical professionals, mental health specialists, wellness experts, and patients, because knowledge is power and you are your own best advocate.
Rena: I am so excited to welcome to fertility for today a good friend and fertility warrior, Jen Rhodes. Jen was diagnosed with stage two breast cancer in June, 2011. She had a bilateral mastectomy followed by a chemotherapy regimen that was known to have reproductive toxicity. Single and 26 years old, she was advised to consider her future fertility before beginning treatment. Cancer was one thing, but the potential of compromising her future family goals was another. She froze her eggs only to discover that eight years later, none of the thawed eggs produced normal embryos. Getting pregnant required taking a break from oral chemotherapy. So together with her oncologist, she decided to undergo IVF. Almost 10 years later. She's cancer free with a one-year-old son. Thank you so much for taking the time to be on today and it's so good to see you virtually
Jen Rhodes: Thank you so much for having me. It's good to be here.
Rena: Well, I know your story is going to resonate with so many people so I would love for you to just start by maybe walking us through your diagnosis. You were so young.
Jen Rhodes: Yeah, so I was 26 when I was diagnosed and it really was, you know, a random time. I felt a lump in my breast and I went to my doctor and she was like, I'm sure it's nothing. You're 26. You have no history. I'm sure everything will be okay, but let's do the right thing here. Let's get it checked out. And there's nothing like getting an ultrasound and having the tech kind of ask a lot of questions and turn her head in different directions. And so you know, it ended up that it was cancer and thankfully it was only in the one breast and was stage two, no lymph node involvement. So it hadn't spread. It was estrogen and progesterone receptor positive, which means that the cancer grew off of estrogen and progesterone. So that comes into play a little bit down the road when we think about fertility stuff. But, you know, I was really fortunate that it's, it's an easy, as they say, cancer to manage and got a bilateral mastectomy, as you mentioned, and then did chemo for about four months. That was it, right at that point, they declared me a survivor.
Rena: Well, I think, I mean that in itself is such an incredible story. Again, you're so young. I know, you know, when I think of breast cancer, usually you think of older. And so I can't imagine facing that when you are on your own and 26. That must've been terrifying.
Jen Rhodes: It was tough. And as a single person, you place a lot of your identity on your physical body, right? Like you're still, I was trying to attract a partner. Like, you know, it, it sort of, it, it takes you out of, out of the norm a lot, and then you try to get support from the breast cancer community. And again, as you said, a lot of people are diagnosed older and so they don't have the same story, tell you, or, or sort of the same way to relate to you as you might want. And so I was thankfully able to find a community of folks who were diagnosed younger, you know, in their twenties and thirties, and really sort of gain a lot of information from that community. But it's, it's different.
Rena: And then when does fertility or family building come up in the conversation?
Jen Rhodes: So it was pretty early on. So thankfully my cancer wasn't that aggressive. And so we did have some time to think through fertility options. I know some people don't have that luxury, but I was able to plan for getting my mastectomy first and then starting a egg retrieval process right after that. You know, in terms of when it came up in the conversation, it all comes up at once. Right? And so we're planning for the surgery, we're planning for the chemo, I’m talking to doctors every day and then they're like, Oh, wait, there's this one more thing that you should talk about. And I think that to me was just kind of a, I dunno, it's a straw I didn't really expect to draw. I think that I was prepared for the cancer piece. Like I had gotten my head around that I was prepared for the surgery. I was prepared for the chemo, but then they were like, here's this other variable. And that, that one really sort of shook me.
Rena: Is that brought up by your oncologist?
Jen Rhodes: Yeah.
Rena: And so they said, you know, we advise you to freeze your eggs before undergoing treatment because it could have an impact on your fertility?
Jen Rhodes: Exactly. So the thinking back then, I, I have no idea what the latest is. I'm sure you do. But the thing back then was the chemo regimen that I was going to receive would age my ovaries, like 10 years. So I was 26 at the time, wasn't married, wasn't thinking about having kids right away. And so in my brain, I was like, all right, I'll be 30 before that happens. And then if I think about when I'm 30, my ovaries will actually be 40 year old eggs and the risks that are associated with that. And so they sort of advised me to think ahead and consider freezing eggs at 26 year old eggs, but I didn't have to try to get pregnant with 40 year old eggs if and when that happened. And that was generous because I didn't end up having my first kid till I was 35.
Rena: How was that? I mean, to go through both the, you know, the process of treating the cancer but then also the process of egg freezing? I mean, both are fairly physically taxing.
Jen Rhodes: So I had finished the bilateral mastectomy and general recovery from that and then started the egg freezing process. Thankfully I knew really well where the doctor's offices were at that point. I guess I paid enough visits so that was easy to do. But no, it was, I mean, it was taxing physically for sure. Taxing mentally because it's just another thing, of course, to process and understand as it's happening. And then we don't have to go too deep into this if you don’t want to but of course after my retrieval, I hyper-stimulated. So I was in the hospital for five days. So it was just, you know, it was like another, another hospital stay that was unanticipated. So it was a lot
Rena: That's so much. And then, okay, so then after you froze eggs, what happened? Did you kind of say, okay, good. You know, I'm going to kind of stick a pin in this. I feel like I preserved my fertility.
Jen Rhodes: Exactly. I felt so good about that. I was obviously so shaken when they told me that this was a potential impact, but I did exactly that. I sort of put a pin in it. I was like, I will be okay. I was really fortunate. I had a great harvest and I was like, I have my reserve plan here and I will be okay. And I honestly didn't think much about it for years afterwards, which was a, a security sort of security measure for me.
Rena: Sure. So then, okay, so let's fast forward, you know, you kind of go back to your life and obviously, you know, changed from the experience, but you're able to go back to life and pick back up or trying to find a partner it sounds like and then, you know, it sounds like you did?
Jen Rhodes: Yeah. So I was, I was fortunate enough to meet my husband in business school and he is of course the connection that we have being a dear friend of your brother's.
Rena: Such a small world, right? For all our listeners, I know Jen because I, my younger brother and I went to the same summer camp. So I've actually known Jen’s husband for years and years since we were kids. And then it all kind of circles back to this, this small, small world. So you marry Doug - beautiful couple two of my favorite people. And then you guys talked about having kids.
Jen Rhodes: Yeah. So Doug was aware of all of this, obviously, and really when we met, invested in understanding the journey that I had been through for sure, and was super supportive, super appreciative. All of those things that you would expect of a wonderful partner and, you know, we started talking about having kids and he knows and I know that we have this safety net of eggs that we're going to thaw and we're going to use them. And so we go through the process and we thaw the eggs and we make embryos out of them and it turns out that there was a ton of drop-off in the thawing process, a ton of drop-off in the embryo process. And we ended up with no normal embryos. And so we were sort of back to square one a little bit, but having been sort of engaged in that process and recognizing that I was taking a break from the oral chemotherapy that I was on in order to try to have a child, we wanted to sort of keep moving. And so we decided to undergo another IVF cycle, or I guess my only complete IVF cycle and sort of take that path. Fortunately, I had done genetic testing earlier on, and I don't have the BRCA gene or anything like that. So it wasn't a matter of finding embryos without a disruptive gene like that, but we sort of went down that path anyway.
Rena: So I mean, I was kind of walking this journey with you guys, you know, a little bit you had sort of let me in when you first started, you know, asking me a couple of questions, you know, just cause I was in the space and I remember being so devastated and disappointed when you didn't get any viable embryos from what you had frozen. And then I really actually didn't even know at that point I learned kind of through what had happened to you and then delving a little deeper that the technology back when you had frozen is different than what they use now. And so unfortunately, if you froze that many years ago, this does tend to happen with the drop-off because, you know, again, science, technology, everything's moving so quickly. What we do now is so different. And so I don't want anyone to be scared, which is why I say that. But I just remember being really so disappointed that you had taken that brave step. You know, again, when you were 26, I can't even imagine being diagnosed with cancer and having to deal with that and thinking about your fertility when you weren't even married or with a partner and you do all of that and you put yourself through it and then you start the journey and then don’t get a return on that.
Jen Rhodes: They were very transparent with me upfront. So even what was it 10 years ago at this point, they knew that freezing eggs had more risk than freezing embryos. So they actually asked me a lot, many times they were like, are you sure you don't want to freeze embryos instead? And again, my question was like, what am I going to fertilize this with? We joke now that my dad was like, what is she supposed to do? Just put a sign up on Michigan Avenue that says like, I need my eggs fertilized? And obviously that wasn't, that isn't the approach they would take. There's, there's much more thoughtful ways to do it, but you know, we have to find humor where we can, I ended up freezing the eggs. And you know, when I, when I found Doug and wanted to have a child with him, I was grateful that that was the decision that I had made. But of course it came with risks. And so we, we bounced back.
Rena: I think it's so hard because you know, with my patients who are struggling with maybe they're older and they're freezing, they're grappling with freezing eggs vs embryos, because as you said, and science today still is that there is, freezing embryos you can test, right? So there's a little bit more information on an embryo than freezing an egg because we can't test an egg for quality. You know, doctors will say you need X amount of eggs for a healthy live birth. So usually the number, and again, it varies person by person because everyone has a different body and a different case, but sort of generally speaking the number usually at eight eggs will equate for one healthy live birth. So if your family building plan is two children, they usually advise that you want to freeze 16 eggs. And that should be kind of a safe spot to get you to that two children. But you know, but many of my patients today, right, it still is, you know, we often spend a lot of time discussing, do they want to freeze embryos? Do they want to freeze eggs? But as you said, it's really tough because generally speaking, most people don't want to be a single parent. They're hoping to find a partner. And so if you freeze embryos and you know, you put a sign out on Michigan Avenue or Park Avenue, you know, that's really different than freezing with a partner. And so, you know, I think sort of, I always counsel women and when we talk about egg freezing, and it's the most medically advanced way that we have to preserve our fertility, you know, as you experienced, and as we know, there's no guarantees, there's no guarantees to anything, but it's the most medically advanced thing that we have. It is a big action step to preserve your fertility. Okay. So then you guys, so you did an IVF cycle and so you started sort of again now, maybe can you explain, so when you did the new IVF cycle and this was about 10 years later, so does this mean that because of your cancer treatment, they essentially were now trying to do an egg retrieval on ovaries that were closer in age to 40 because of your cancer treatment?
Jen Rhodes: So I don't, I don't remember the name of the test, but there's, there's that test that sort of tells you how many eggs you have in the tank and generally where your ovaries are...either way it turned out that what appeared in the testing that they did was that my ovaries didn't quite age as much as were originally predicted. And so I was able to have a very successful IVF cycle. And so we found that, and that was good, but I think that the cancer diagnosis and where they sort of plays into the IVF cycle that we have now is in two ways. One, since my cancer was estrogen positive, I was on a drug called Tamoxifen and I've been taking that orally since I ended chemotherapy. And I had to pause that in order to get pregnant because what that drug does is, is reduce your estrogen levels and obviously estrogen is really important for the development of a healthy birth. And so I was off the medicine. My oncologist was of course eager to get me back on the medicine. And so sort of two things there, one, some of the IVF medicines work to increase estrogen or sort of bolster your estrogen up front. And so we were nervous to do that completely because of what the impact it could potentially have on the cancer. But then also we wanted to sort of move as quickly as we possibly could, because ultimately the goal is to sort of get me back on this drug as soon as we can. So those were the two things that kind of came into play with IVF cycle.
Rena: And so were you then able to go back on when you were pregnant?
Jen Rhodes: I was able to go back on that as soon as I gave birth.
Rena: Okay. Got it. And is that something that you will stay on for life?
Jen Rhodes: So the current thinking is 10 total years, so I'll be on it for a little bit longer, but they've extended it from five to 10 since I started it. So who knows what's coming next?
Rena: Wow, that's so interesting. I mean, I didn't know until I read your bio that you were still sort of on this treatment, you know, years later.
Jen Rhodes: It's really a safety precaution at this point. And some folks have pretty significant side effects with Tamoxifen, but I've been fortunate enough to get pretty used to it.
Rena: When you did your second cycle years later, did you find that it was triggering or scary in any way to kind of take you back to the experience years ago?
Jen Rhodes: Absolutely. I mean it absolutely stirred up a lot of fears and feelings and emotions. I think when the embryos didn't work, we actually found that out on Valentine's day. And I remember just sort of being in this place of like cancer struck again, right? Like it didn't, I was cancer free and I should be grateful for that, but I was angry that it sort of got another, you know, got another chance to disrupt what I had hoped for. And so that definitely came back through the IVF cycle. I think in general, I really like the numbers and the like those formulas and sort of figuring out how it works along the way. And so I tried to get a little more mired in that side of what the IVF cycle itself did, but then of course I was terrified of hyper simulating again, because that was not fun experience. The fear kicked back in for sure.
Rena: Do you have any sort of words of advice for anyone that might be in a similar situation? You know, what really helped you back then and then helped you also more recently?
Jen Rhodes: I think, I mean, a couple of things, one, you've got to trust the health care team that you have and feel really good about the guidance and advice that they're giving you. I think having second thoughts about these things only make it harder. And I think the other thing that I've sort of seen and proved is that there will be, there will be ups and downs, right? And so the comfort that I had of knowing that I had frozen eggs ready to go, really carried me for years and made me feel really confident and happy. And then I lost those eggs. And so, you know, I was back at the bottom and I think recognizing that there will always be those highs and those lows and that, you know, if this is the right journey for you to be on and it will end in a positive place. And I just think sort of keeping your eye on the prize there is, is really important.
Rena: And what about connecting with others or building out a village? Was that an important part of your journey for you?
Jen Rhodes: It was, I think, you know, I see it more now almost where I try, you know, I try to find others. I try to help others who are going through something similar or just talk them through it. I think when I was in it, it almost is overwhelming sometimes with all the people who want to help, do they know how to help and like, what does that look or feel like? And it's overwhelming, what questions do I want to ask? And I'm the kind of person who goes to the doctor and I don't have a list of questions. I'm sort of like, I'm ready to absorb information and then I, that I do the like, what questions aren't I asking that I should ask? So sometimes I think it's almost overwhelming to have people who are going through the same thing that you're going through. So I definitely used my support network to help me emotionally and physically and then now tried to help others sort of usher them through the experience a little bit as well.
Rena: Well I think your story is so poignant and touching and you know, you're so brave and strong and such an incredible person. I'm so appreciative for you coming on and sharing. And I hope that this gives hope and inspiration to others out there. You know, I love that. You said it's really important to trust your medical team. I always say to people that the internet doesn't know you, right? They don't know your body. They don't know your case. As much as you want to go in there because you want to search for hope. You want to find someone else that sounds like they have a similar case to you and they have success so that will happen to you. But it's so important to trust your doctors, trust your team, advocate for yourself, you know, make sure that you feel like you're getting the time from your doctors to ask questions. I think that's really, really important.
Jen Rhodes: Absolutely.
Rena: So the way I like to wrap up podcasts is on a note of positivity and doing a gratitude. So something that you are grateful for today.
Jen Rhodes: Today? So on theme, you mentioned at the beginning of the podcast that I have a one-year-old son. His birthday was just this past weekend and he has learned what it means to go hug mom. And so this morning, before he left for school, dad said, go give mom a hug before you leave. And he came right over and gave me a hug and there is nothing I could be more grateful for in today than that moment.
Rena: And he is so cute. I love that.
Jen Rhodes: It's a good trick.
Rena: That is so cute. I love that. I'm just picturing it, I guess, on the same vein and I'll say I'm grateful to my daughter's very, very independent and she's, she's pretty thrifty with her hugs and her affection. But yesterday I was talking to her and she said, mommy, I miss you. I want to be with you. And I just get so little of that.
Jen Rhodes: Oh, she's a doll.
Rena: Thank you so much for being on. It was such a pleasure. So grateful to know you and Doug and crazy when you think about how this all started. Really appreciate you being on and sharing your story. You know, I think you are so strong and brave and such an inspiration.
Jen Rhodes: Thank you. That’s so sweet of you to say. It was wonderful to chat.
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.

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