SART Fertility Experts - Medically Indicated Fertility Preservation

The information and opinions expressed in this podcast do not necessarily reflect those of ASRM and SART. These podcasts are provided as a source of general information and are not a substitute for consultation with a physician. Welcome to SART Fertility Experts, a podcast that brings you discussions on important topics for people trying to build a family.

Our experts are members of SART, the Society for Assisted Reproductive Technology, an organization dedicated to ensuring you receive quality fertility care. Hello, my name is Brooke Rossi and I'm a practicing reproductive endocrinologist and fertility specialist in Columbus, Ohio. And you're listening to one of the episodes of the SART Experts Fertility Podcast Series.

Today we will be discussing fertility preservation, specifically in the setting of a cancer diagnosis. And I'm happy today to have one of my patients here who will be talking about her experience with a cancer diagnosis years ago when she was younger. And we're going to be discussing the cancer diagnosis and conversations that she had with her providers at that time regarding fertility preservation and her journey through that process, her journey through then having a son, and then her considerations now about what to do with the eggs that she froze years ago.

So thank you so much for joining us today. Can you tell me a little bit, gosh, let's just start by talking a little bit about how you got diagnosed with cancer. Can you tell me a little bit about that? Yeah.

I was diagnosed when I was 33 years old. I had a lump in my breast and it turned out to be stage one invasive cancer. And so I went through treatment then.

I had initially a lumpectomy and then there were additional, what are called stage zero or DCIS. Those were also identified at that time. And I ended up deciding ultimately to have a double mastectomy after going through chemotherapy.

So the whole process took, I think about, you know, six months maybe. I was diagnosed in the fall and I think I ended up having the double mastectomy after the chemotherapy in the spring of the following year. Do you remember at the time of diagnosis, did any providers, either your cancer doctor, did your cancer doctors talk to you about fertility preservation at that time? Yeah, they did.

I mean, there, you know, there's, I think this is pretty typical. There was sort of some back and forth initially about diagnosis. It wasn't clear, you know, at first it wasn't clear whether I was going to have to do chemotherapy.

And I think that's often the case at the time of diagnosis. And so initially we thought I might not need to. And so that was, fertility preservation wasn't really an issue.

Right. But then when it became clear I would, there was sort of a hustle to talk about that. And we did end up deciding to freeze eggs.

So I did two rounds of egg retrieval before I started chemotherapy. And at that time, so you felt a certain amount of, I don't want to say pressure, but maybe your oncologists were encouraging you to do this and do this now because they didn't have a lot of time to be, because they wanted to have, they wanted you to do it before the chemotherapy. And so they wanted you to do it relatively quickly.

Yeah. I mean, fortunately, I wasn't like, I think, I think in some cases there's a sense that there's no time. That wasn't the case for me.

In my case, everyone was fine with me taking the time to do it, but it was sort of like, you had to do it now. So we didn't have a lot of time to decide. Right.

We went ahead and did, we did one round and then it wasn't unsuccessful, but there was some, there was some issue where they were only able to retrieve a few eggs and we ended up deciding to do a second round. And that really was a tough decision. Again, it had to be made kind of quickly.

In retrospect, I'm not sure I would have done two, but, you know, you don't have, it's a hard decision to make. And I was, you know, kind of under pressure to start chemotherapy after that. So I did, I did have time to do two.

I think one would have been fine as well. Yeah. No, you're right.

That is, it's, you're kind of making the best decision you can at the time. You know, if you're, if you're open to calling our listeners at that time, were you, were you in a relationship? Were you single? Cause sometimes women are faced with the decision about whether they should freeze eggs or freeze embryos. Yeah.

Kind of a tricky conversation to have if maybe you have had a long-term partner, but aren't really engaged or married and don't really know where it's going. Yeah, no, I can definitely see that. And so in our case, we decided to freeze egg, even though I was let's see, I had kind of engaged the summer before the diagnosis and we ended up canceling the wedding as it was planned and getting, having a court that was getting married at the courthouse because there was a lot going on.

It didn't seem like a great time to have a wedding. So I was married, I think by the time I went through this and we ended up deciding to freeze eggs for reasons I cannot totally remember. And I don't, I think either one would have been a fine option.

I think if what I can kind of remember was that I didn't want at the time to feel like, um, like I had committed to having biological children with the, like, you know, using those embryos I had frozen. I don't know. I guess I wanted to like feel like I had sort of like kept an option open, but not committed at that point where, you know, I was like not extremely physically well, right.

At that moment. Um, so I wasn't, I think some people feel, and I've, you know, I've talked to other women who are in a similar situation and they feel like, I know, I definitely want to have biological children. Like the moment I'm done with this, I'm doing, I didn't really feel that way.

I felt like I was, you know, the beginning of a marriage. And I, that was something we were interested in, but we were also kind of open to, to other, other paths as well. So we did end up deciding to freeze eggs.

Um, again, it was one of those, another, another one where we had to just kind of make a call and go with it. Um, I think both, both would have been good options. I think, uh, it's important to remember that for our patients.

And I think as providers, it's important for us to remember, you know, as a fertility provider, sometimes I'm only seeing one side of it. You know, I'm only trying to figure out how I'm going to get the patients in, but there's the whole other side of it is what's going on with their cancer treatment. And what you've referenced a couple of times is that it's really stressful.

Like sometimes you can't even remember why you made the decisions that you made. Cause not only there was so much going on in your life, but you were sick too. Yeah.

Um, either sick from your treatments or sick from tests or recovery from, you know, other cancer treatments that it's, it's really, you're doing the best that you can with these decisions at the time. But I think that is a hard decision for patients to make sometimes with whether to freeze eggs or embryos. Unfortunately, now we can freeze eggs.

And so people can definitely have that as a, you know, feel confident that that's a reasonable option for them. So that's, thank you for discussing that. Um, during the process, it sounds like you, do you feel like pretty good support from your oncologists at the time about doing fertility preservation? Um, I did.

Yeah. I mean, I think everyone was pretty open to it. Um, and it, I did have, you know, several people I could discuss options with now I realized there were probably even more, yeah.

Um, probably even more resources or maybe they weren't there then, but they are now, um, for that, for people in that situation. But yeah, my, my medical team was all pretty supportive and, um, open to my decision-making. No, no one really felt like I didn't, I didn't get the sense that anyone either didn't want me to, or that they were insisting that I do so if I had said, you know, no, I just, I just want to plow ahead.

I don't want to do this. I think that would have been okay too. Okay.

If you don't mind me asking, and again, uh, you can decline this up. I think that one of the stresses that patients have when thinking about fertility preservation is, uh, the cost of it. And if there's resources out there, um, if their insurance covers it, uh, tell me a little bit about your experience with that.

Yeah. So, um, I did have insurance at the time, which is good. I, they did not cover the fertility preservation.

Um, I do think since then I've become aware of other, that there are some, I think some organizations that can help pay. I don't know a lot about it because I, um, didn't personally go down that route, but, um, like I'm on some, you know, Facebook groups for, um, uh, for, for people in this situation. And, um, so we just had to pay out of pocket.

I did, and it was, it was expensive. And I, I did talk to my insurance provider, um, at the time, and it, it was just sort of a non, it was sort of a non-starter that wasn't available. So we were fortunate that we were able to, um, pay for it ourselves at the time and sort of preserve that option.

Yeah. I, I think that your experience, um, is unfortunately true. I think a lot of insurance providers, even if they cover it for infertility still haven't, haven't, uh, figured out that they should be covering it, covering it for cancer patients.

So I, I think your experience has been, um, pretty typical. And then, you know, there's storage fees as well. Like, do you have to pay a monthly or yearly storage fee to continue to freeze the eggs or? Yeah, we have.

And every time it's, it's been a decision-making process because, um, you know, you're sort of preserving an option for the future. Um, and you know, when we get the bill, we'll sort of look at it and say, you know, do we, is this what we want to keep doing? And, and we have decided to do so, but, um, again, it is, it is an expense. So it's, it's definitely, um, an issue.

It, yeah, it does get expensive. No, I, I have had patients who, you know, have come to preserve their fertility or have a conversation about it in their early twenties, and they start to do the math on how much they're going to spend per year if they don't use those eggs for 10 years. And it can be thousands and thousands of dollars.

So I, I think that's absolutely true. Um, so you went through the egg freezing process. So you went through two IVF cycles and it sounds like they, you did okay with them.

Did you have any real bad side effects or complications or anything through the process? No, they, they generally went fine. Um, I, I do remember that one of my sort of most stressful moments in the cancer treatment process was I needed to give myself a shot and I was traveling. Um, and so I was in an airport bathroom and, uh, for some reason I chose like the, the family bathroom.

That's just like one, you know, sort of like one facility with a door. I thought, well, that's good because there'll be private and then I can lock the door. But then like the moment I got stuff out, someone was like knocking on the door and I was sweating and, um, you know, trying to do it properly, which I was not comfortable doing at all.

Um, so that was not my, not, not a high moment for me, but, um, overall it, it really went fine. I was able to, um, go through the cycles without, without terrible side effects and then go into treatment, um, pretty soon after that. So now the, at this point in my memory, though, that process and the treatment, it all sort of blends together.

So, and then, so then you, you did the egg freezing and then you went and had your cancer treatment. And what did they tell you at that time? You know, after you had your initial cancer treatment, what did they tell you then about when you could have kids or what the timeline was for that? Yeah. So, uh, at some point after that, I enrolled in the positive study, which is, um, an observational study, as I understand of women who have been through breast cancer treatment who have children.

Um, so I enrolled in that and it was kind of inconvenient and I had to change providers and go to a different hospital that was further away, but I was really interested in being part of it because there just wasn't that much information. You know, there's sort of things, people are told different things by their providers about, you know, like, well, we think this is safe or we think this is not safe. And, um, it seemed like there was not a ton of evidence.

So, and it makes sense that you can't like randomly select for pregnancy necessarily. So, um, it makes sense that there's not sort of these really clear cut studies on it. Um, and I don't remember exactly what I was told.

I think the ideal situation would have been five years, I think, because at the time, at the time I was diagnosed, the standard for my type of cancer was five years on tamoxifen. Yeah. That has, I think if I had been diagnosed a few years later, there was another study that happened a few years after my diagnosis, I think would have changed that course a little bit.

And so I've had discussions about whether I should have, or if it's still actually switched to, um, a somewhat different course of treatment. And additionally, another change that's happened is that the, I think the standard course of tamoxifen has been extended. Yeah.

Yeah. So, um, I waited several years. I had an inner, I think I had two interruptions of tamoxifen.

So I didn't get five years full, like five, four full years on tamoxifen, even though I was diagnosed when I was 33. And then I had a child when I was 38. So even though years passed in between, it was, I had to interrupt in order to get pregnant.

And then I had another interruption additionally. And when you, yeah, and that's absolutely true. I mean, studies come out and recommendations change and, um, our patients kind of get caught in the middle of having, you know, a plan and then sometimes having to change their plan.

Um, so when you decided to kind of have a child, um, you, you know, I guess, you know, you talked with your oncologist, they said, well, you know, it's safe for you to try. And then did you have any problems getting pregnant or what were your, were you worried? Like, what was your thought at that time? Yeah, it was a little, so it was a little bit stressful because I was off tamoxifen, which is, um, you know, part of my treatment. So it felt stressful to, to not be doing it.

Um, but we were able to conceive relatively quickly. Um, I did not use any kind of, um, intervention at the time. Um, so fortunately it did, yeah, it did happen relatively quickly and I was able to become pregnant and carry a pregnancy to term.

And you had a healthy pregnancy, right? Yep. I had a healthy pregnancy. Right.

And so there really was no impact, you know, on the pregnancy with the fact that you had had chemotherapy or cancer treatment in the years prior. No, I mean, in a sense, I, even though it was a sort of a stressful, it felt stressful and complicated, but once I was pregnant, I was pretty normal. And, um, I had had a double mastectomy.

Right. So, um, breastfeeding was not an option for me. Um, so that was like, when I went through the classes and stuff, that was sort of like, I would choose to either, you know, step out or just daydream during those.

I think that can be hard for some patients who have had mastectomies, um, to listen to that. But, um, I'm so thrilled that you had a, uh, a healthy pregnancy and you have a beautiful son, right? Yep. Yep.

Right. And so then what happened? So you have your son and how soon after did you, did you start the Tamoxifen right away again? You know, I can't remember someone, um, was asking that recently. And I, I think it might be six weeks.

I think it's sort of a normal, um, in the same way that you would take a break for, um, like a surgery or something like that. Um, because I think it has some, uh, some risk associated with that. So I waited, I think, I think it was six weeks and then started that back up again.

Um, and I was on that for several more years, um, almost three more years after that. And so that's, so then we met. And so, so tell me a little bit about what your thoughts have been, um, or kind of like maybe talk a little bit about the conversations we've had recently about you having another child.

Yeah. So, you know, my husband and I were interested in having a second child. Um, and because I'm older now, we felt a little bit more nervous about just taking time off Tamoxifen and just trying.

So we've decided to, to try using, um, my frozen eggs and doing basically an IVF, um, cycle. Um, we were, it was a hard decision because, uh, it just wasn't clear there were, it really is not like a clear answer about like what sort of like what's important to you as far as like, you know, safety meaning a healthy pregnancy safety, meaning cancer, um, also just like expense and, and the sort of difficulty of going through a medical procedure. So it was sort of a lot to weigh.

Um, we talked to a lot of different medical providers. We talked to my oncologist and my oncology nurse practitioner. Um, and we also have, it's a little bit more complicated because our eggs are frozen in, um, our different location and it was our state.

So, yeah, we, we, um, had to kind of coordinate those discussions between multiple providers. Yeah. And I think one of the things that we had spoken about, um, you know, you were trying to balance your, so, um, being over 40 and the chance that you would have a harder time getting pregnant and the amount of time you might be off Tamoxifen while trying.

In addition to that, we were having conversations about the risks of things like miscarriage and health issues with a baby and health issues with you, um, you know, having a child over 40. And so, you know, as, as our patient, as our listeners may know, when you freeze eggs, the chance of having a baby, um, the chance of down syndrome, miscarriage, and all that, all those are related to the age of the egg. And so I think you were debating, do I use these eggs that were frozen when I was in my early thirties and potentially may give me a higher chance of getting pregnant.

However, using those eggs is associated with a lot of logistical issues, cost, um, you know, the risks of doing IVF, using frozen eggs versus, you know, how long am I going to have to be off the Tamoxifen? Am I going to have a higher risk of having a miscarriage, which is going to even make it a longer process for me to have a child. Those are some pretty heavy, pretty heavy conversations I think that you and your husband were having. And I agree with you, there's no clear answer.

And I, I do recall that I think you spoke with your oncologist in Ohio. You spoke with your oncologist that you had in the past, your infertility doctor that you had in the past, your current infertility doctor, your OBGYN. Um, did you see the high-risk doctors in Ohio also? I did.

Yeah. We did have that conversation as well. Yeah.

And this was, I mean, there was a lot of, and I think that's the right thing to do. And for better or for worse, I think what you learned from all those conversations that there was no clear right answer, correct? Yeah. I kept thinking someone was going to sort of tell me what to do in some way.

Like, um, at some point someone would say, well, you know, all of these things being as they are, you should do this. Um, and you know, we, we didn't have like a really firm idea that like, we must have, um, a family that looks a particular way. We, you know, if, if we found out that there was a route that the route we were interested in going was really risky, like we're also open to having, um, having one child, we're really happy that we were able to have a child.

And I think there are a lot of advantages to having, um, an only child that could be great in a lot of ways. So we were open to that, um, that like, you know, we kind of thought maybe someone will say you just shouldn't, you know, you should just stop what you're doing. And no one did.

And um, you know, in the end we just had to make the decision about how to proceed. And it is an ongoing, you know, we aren't finished yet. Like we will, um, we'll see how this goes and maybe we'll get some information that will make us change our mind, but it's really been, it's been complicated.

Um, and at some point we've kind of felt like, well, we have to sort of make a call, but be open to the idea that it could change based on what we learn. Yeah. And I'm just going to let our, our listeners know one of the, one of the issues that we ran into is that you had the eggs frozen in another city, um, you know, years ago and the techniques and the devices that were used to freeze those eggs were different than what we use in our IVF laboratory in Ohio.

And in fact, you know, you and I had conversations back and forth about whether we should ship the eggs to Ohio and do the IVF cycle here. And when we say IVF cycle, we mean, you know, thawing the eggs, fertilizing them and growing the embryos, um, and then transferring them. We had conversations about whether we should be doing that here in Ohio or whether it was a better idea to keep the eggs where they were and to have you go to where the eggs were.

And in the end, um, because of the differences and how the eggs were frozen and the devices that the eggs were frozen with and on, um, our lab in Ohio said, you know what? We're not sure that we can even thaw these eggs with the way they were frozen. And so it, you know, it became a non, uh, decision where we said you have, you'll have to go back to, uh, the city you froze these to use them, which of course is complicated, right? Because you have to travel, you have a little, you're a little one and you work and you do all these things. And so, you know, just going to another city for, you know, the better part of a week is a hard process too.

And, um, and this is what happens because people, people, you know, do fertility preservation and then they move. And so I think this is a, a thing that will, that can be, and maybe will happen more as people, um, use fertility preservation, you know, in the future. Um, is there any, is there anything that you kind of wish you knew or would really want a younger version of yourself to know or anything you would have done differently? Um, you know, it's hard to say.

I mean, we've been really happy with our outcomes. Um, and I, you know, I've been fortunate that I was able to receive, you know, really good care and, um, able to receive care that I could afford that not everyone has, um, that opportunity. Um, and one of my main takeaways from the cancer diagnosis and that process was that I, I do talk, I do talk to more people.

Like I, I, I don't necessarily, not that I have gotten like bad advice, but I've realized that when people just have different perspective, like medical providers have different perspectives they might offer. And so I do now always talk, you know, I do get second opinions a lot, um, because I think it's informative, um, and it can help the decision-making process. Um, so that is one thing I have that I, I did learn that and I, I did do it at the time.

And I, to be honest, I wish I'd done it even more. There were a few decisions, not really to fertility, but, um, that I, in the retrospect was like, oh, if I had just talked to a few other providers, I might've gotten another idea about how to do something differently. So to the degree that you can do that and also listening to other, um, you know, I, throughout the cancer, um, treatment process, I did go to a few support groups and joined, um, a local group for young adult cancer survivors.

And that was, that was helpful and interesting. And it was honestly a way to meet interesting people and talk about something that, um, couldn't, I couldn't necessarily talk with, um, talk about with just, you know, my friends who hadn't been through it. So I think it's really good to develop some community and to get support and learn from other people's experiences, um, when you're, when you're able to do so.

Well, I, you know, I think that's exactly why I've asked you to do this today because there, you know, when you're a young woman and you've been given a cancer diagnosis, um, I think it can be, it can be, be very lonely and sometimes you don't know where to get information. So I think that you sharing your thoughts today, that's exactly what we want other patients to be able to, to, um, to be able to appreciate and to feel like they're not alone. Um, any, I mean, I, I really appreciate you talking with us today.

Any last words or last bit of advice? Um, no, I mean, I'm not, I'm not done with this process yet. So I guess, I guess I'll find out. So we can really tell them.

Well, I have to say, you know, um, you have done a great job. Uh, I agree with you. I mean, I think you've done a great job of, you know, seeking out as much information as possible, trying to be, make good decisions, not giving up.

You know, I, I think those are all really important, um, really important things for patients to do. So I, I commend you for all your work. Thank you.

Yeah. This was, um, interesting. Thanks for inviting me.

All right. Well, thank you so much again. This, um, has been the SART fertility podcast series discussing fertility preservation.

And thank you so much to our patient for joining us today. You're welcome. Thank you for listening to SART Fertility Experts, your resource for information on IVF.

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