Episode 43: Cancer and Reproductive Health

Written By Kayla Crum

Issues of fertility and reproduction are fraught even in the best of scenarios. And for many AYA cancer survivors, their fertility and reproductive health were not addressed during the course of their cancer treatment in the way they had hoped. On today’s show we hold space for that disappointment and explore this often overlooked part of being a young survivor.

SHOW NOTES

Sources and Further Reading:

TRANSCRIPT

 Kayla 0:09

 You're listening to the My Sister’s Cancer podcast. I'm Kayla Crum, registered nurse and writer.

 Ella 0:15

 And I'm Ella Beckett, social worker and cancer survivor.

 Kayla 0:20

 We're sisters on a mission to care for the cancer community through the sharing of real life stories, a sprinkle of sass, and lots of support. 

Ella 0:28

Join us in a new kind of pity party. It's a pity so many of us carry the heavy burden of cancer alone. So let's make it a party and carry it together.  

—-------------------

Kayla 0:42

Welcome back to the My Sister's Cancer podcast. This is your co-host, Kayla Crum, and I'm joined, as always, by my sister Ella Beckett. We, today, are tackling the difficult subject of reproductive health and fertility as it relates to cancer. So be kind to yourself as you listen today. If this is something that's not for you right now, for whatever reason, you know, feel free to save it for a later date or not listen at all. We understand that this topic is fraught and personal. And so, um, as always, our goal is to educate and empathize. So if you're here to learn or you're here to feel seen in your struggles, that's definitely our purpose as always in this episode. We've tackled a lot of tough subjects on this podcast. I mean, it's a cancer podcast, so you kind of know what you're getting into, I think, when you listen. But for some reason, this topic feels like one of the hardest, I think, that we have tried to tackle so far for some reason, perhaps because, you know, creating a child is one of the most personal acts that you can participate in. And loving your children is kind of one of those things people talk about as the ultimate experience of human love, et cetera. Like, people put a lot on the conversation around children and reproducing and bodies. So this topic feels heavy because of cancer and heavy just on its own. So we're gonna kind of talk about what I think is like the hidden side of cancer, which is, you know, the way it affects fertility and reproductive health in general for boys and girls, men and women, uh, whatever gender. And some of the really tough questions that are raised when you're trying to think about your body holistically, uh, and make decisions for your future self, which often feels like the lesser of two evils. So I thought we'd start there with your diagnosis. So for those of you who are newer to the podcast, Ella got cancer at age 18 and relapsed at age 19. And because of that, she was technically an adult the whole time and yet treated in the children's hospital because it was a young adult disease that those doctors were more equipped to treat. And I think that that adds another layer to what we're going to discuss today, sort of this young adult population that sits on the border of pediatric and adult world. Ella was presented with some choices that were really hard. And so I'm going to let her share what she feels comfortable sharing. And then we'll go into more detail about the variety of issues a lot of different cancer patients face after that.

Ella 3:55

 So I think one of the first things that I want to say is that, all of this kind of first came to me in the thick of the diagnosis season. So at a time when I was still really digesting my cancer diagnosis and what the plan was, and, you know, my life still felt very much in limbo. And to me, the topic of the reality that this could affect my fertility and my future options to have a family in many ways, it felt kind of like a second thought or an aside. And I understand that, because I think from my doctor's perspective, right, the priority is full steam ahead with treatment. But to me and my somewhat clouded memories from this time, it felt like an afterthought, right? Like the acknowledgement that it could impact my ability to have children felt like something that was just kind of, “Oh, we should bring this up a second so that we have our bases covered before we are full steam ahead on this.” And I just think that's something that's really difficult because, again, you're just still debilitated by figuring out what the plan is and what the next steps are and how you're going to handle everything, and then to process something as big as this on top of all of that… It's just so difficult and it puts you in these tricky situations where you have to choose between, you know, going ahead with treatment or taking these measures to do these things that, A) probably aren't covered by insurance. B) you're not sure you're going to ever need it down the road. And C) can be very painful and invasive to go through. So there's just so many layers to this. And I think it's so hard because I do think it's something that not a lot of people think about or realize that this issue is so impactful for people who have survived cancer. I'm not actually going to go into a lot of detail about my situation just because it is a really personal topic, and I don't necessarily think I want to share all of it, but I just think it's important that we still hold space for this topic and kind of like you said, educate from what we do know, from what we've experienced, um, but not necessarily get into the nitty gritty of my situation, if that makes sense.

Kayla 6:46

 Definitely. I think that, first of all, I appreciate you doing this episode at all because as we acknowledged at the top, this issue is super tender and personal. And I think, you know, the point isn't what you decided or were able to do for your fertility, et cetera. The point is how hard this is. No matter what decision people make, right, or lack of decision they feel like they have. And so that's kind of what we want to focus on today, is not like the path you took, but like the fact that this is a barrier and a difficult situation that I just don't hear talked about a ton in the cancer world. And I think a big reason for that is there's pediatric cancer and there's adult cancer. And this AYA, this adolescent/young adult group is growing, thankfully, over the last 5 to 10 years in prominence and like understanding both in the cancer like, research world as well as just the public perception, I think; there's a lot more like AYA groups and social media presence. We've mentioned many nonprofits and support networks before who are targeted towards, you know, the 18 to 35ish crowd. And that's the group, I think, that has historically been pretty neglected when it comes to reproductive health. So we're going to get into what exactly we mean when we say decisions and insurance and all of this stuff, just so that if you're new to this, um, or maybe you're going to be faced with this soon because you or a loved one has a diagnosis, that you have more information than maybe we did, or the average person does about reproductive health as it relates to cancer. I will say we're not going to get into cancers of the reproductive system. That's its whole own episode, if not podcast. I'm sure that that is, you know, when you think about ovarian cancer, cervical cancer, breast cancer, testicular cancer, like, that each could have its own episode or whole podcast. There are whole communities, particularly around breast cancer, but really, for all of these types of cancer, that champion those causes, and we are not experts in that area at all. That's really outside of our experience. I also just want to say that obviously cancer can happen during pregnancy. As some of you might know, I'm actually currently pregnant with my first child, so that's also kind of a disclaimer for this episode. I obviously have a bit of a bias that I'll try to keep out of the conversation, but there are plenty of women who get cancer while pregnant, and that is so difficult and so complicated, and we're not going to cover that today. We wanted to acknowledge that reality, but that's not been our experience, and we don't have a lot of expertise in that area. So we want to hold space for that experience, but we won't be going into depth on that today. So what we're talking about today is just kind of how any old cancer, so to speak, may affect your reproductive system, just like we talked about—I think it was our last episode—these late effects or side effects that linger and how, you know, Ella mentioned on that episode, like her heart was affected for years. And honestly, it's just luck that it seems to have recovered. She was originally told she'd be on heart meds like her whole life. So all your other organs kind of get roped in when you're treated for cancer. Although, you know, because each cancer is unique, this is very individualized when it comes down to the details. First things first. I guess we can start with insurance, because this—this is the part that I think makes me the most upset. We've talked about American healthcare before. We have an episode on that. We've touched on insurance issues. I don't know much about this particular issue of reproductive health related to cancer in other countries, but in the United States there's really not a lot of insurance coverage to protect, you know, egg preservation, embryo preservation, IVF, and sperm preservation, things like that. It's pretty much out of pocket. Or you would purchase additional levels of insurance, which again, is costing you more. So I just want to say that off the bat, as we talk about all of these options, it's kind of sometimes your decision feels like it's made for you in regards to all these options we're about to discuss, because there's such a lack of coverage and it's a tough… It's a tough topic. I mean, in a sense, preserving your reproductive possibilities could be seen as an elective option, right? Like it's your choice. And yet it feels wrong also that only the people with enough money have that choice at all. So I don't know. Do you have any thoughts on the insurance piece of it? 

Ella 12:17

I mean, I'm with you on how frustrating it is that it's just not really covered in the same way that a lot of other things are. I mean, it—again, I am not an expert in this area. I don't know a lot about the ins and outs of paying for this, all of this out of pocket. But I just think it's really frustrating when, like you said, a lot of times it's not even an option available to people because of the expense and the way that it would just be a debt that people would have to pay for a very long time. 

Kayla 12:58

Mhm. So if someone found a means to pay for some sort of fertility preservation, um, whether it's, you know, a fundraiser or personal wealth, I don't know, perhaps there are like grants and scholarships. I have no idea. Like, there might be some sort of non-profit funding out there. That all takes time to scrounge up the money. Like you were saying when you were faced with your choices, it's sort of like, “Oh, you have cancer, let's start treatment, like ASAP. And also, you know, maybe you want to preserve your fertility. Like, do you have ten grand to do that? Before we start next week?” But if someone does choose to either delay treatment or, you know, has the money to do fertility stuff right away, these are kind of the options that are available to them. So first of all, we can start with the fact that not everyone's fertility will be affected by cancer. There's a ton of different chemotherapy drugs. Some people get radiation, some people get surgery. So there are situations where your treatment will not necessarily affect your fertility. And usually your doctor can tell you that like, hey, in studies, no adverse effect on fertility has been shown. Like, great, awesome. One less thing to think about. But there are plenty of situations where the best chemotherapy for your cancer, or the radiation or surgery you need, will affect your reproductive abilities. So one thing that I didn't think a lot about until we were going through this as a family was how this is dealt with in children—like, kids who have not had puberty yet. You know, like are they just exempt from being affected or like, what does that look like? So I'll link to a couple resources because this was a learning point for me. But children who have not gone through puberty, the only option is to preserve ovarian tissue or testicular tissue in the hopes that someday it could, like, produce eggs and sperm. So it's, you know, harvested and frozen. And I think that the tricky part of that is explaining to your four-, five-, six-year-old what you're doing and why, and obviously they're not at the age to give consent, but you do want them to give assent if possible. That's what we call it in the medical world, like kids having an understanding of what's happening to them and at least on some level, being okay with it. Um, obviously it's ultimately up to the parents and doctors, but that's just a super tricky thing to look at your child and think about their future children. So that was new information to me, and I don't have a ton of details on how successful that is either. I think it's a relatively new… I know that in our area, some ovarian tissue being harvested at our children's hospital was kind of like a new thing just recently. So I'm curious, like, has this played out 20 years in the future? Has anybody used it yet? I don't know, but that is the approach right now for children. 

Ella 16:22

Yeah, I'm really glad that you brought that up about children, because I really hadn't thought about that before. And how difficult to have to make those decisions for your kid when they're still a baby in many ways. Right? Like it's so hard to be forced to think that far ahead and try to make the right decisions for your kids and not even knowing really what the future holds, obviously. So I appreciate you acknowledging that. One thing I wanted to touch on is the difference between, um, fertility preservation for men and women. So for men, you know, it's a lot simpler to harvest sperm than it is to harvest eggs. And I think—I think that's something worth acknowledging because, you know, if you're looking at it from a financial perspective and a time perspective and just a process, I guess you could say, you know, it's a lot simpler for a man to move forward with preserving his fertility in that way. And for a woman, um, to have to go through, you know, several weeks or months of shots and then having a procedure to harvest the eggs. And then hopefully some of them are, you know, viable. And it's just it's a lot more of an ordeal.

Kayla 17:53

 Yeah that part is frustrating to just once again feel like it's not fair to women. Like just biologically women have a disadvantage in this area because honestly, men could go out the next day after their cancer diagnosis and preserve their fertility. And like you said, for women it's weeks, if not months of a process and it's a lot more painful and invasive. Which is such a bummer. So that's kind of the basics of fertility preservation. I also wanted to touch on the fact that, you know, these things get really complex. Some women might not have viable eggs afterward, but technically be able to carry a pregnancy. Like if they did preserve their eggs, maybe they could carry them later; or if they wanted to adopt an embryo and have it implanted. Alternatively, some women might have viable eggs, but their cancer might have affected their uterus or cervix. And so they can't carry, but they have the eggs. Um, and, you know, I would think, again, that's just a way that it's another layer of complexity for women that, uh, for men is just not there. They either have the sperm to make children or they don't. So. I guess I say that to be, I guess positive because I want people to know, like it's not an all or nothing situation. Um, this is a super complicated topic. And so when we talk about compromised fertility, it doesn't just mean one thing. So it's really important to talk to your own doctor about: “Are we talking about my egg supply? Are we talking about, you know, my uterus? Like, what are we talking about here?” Because I think that's different based on your treatment. And another thing I wanted to cover, because it's happening kind of right as we're recording, is the recent ruling in Alabama on IVF. IVF is in-vitro fertilization. It's been around a couple of decades now. And in case you don't know exactly what it is, it's when embryos—so a united sperm and egg are combined and raised into an embryo outside of the uterus and then implanted in hope that they take and become a viable pregnancy. This has been used, you know, like I said, for years now, throughout the United States and the world, there's different regulations in different countries. But this is an option for people who, for a variety of reasons, have fertility concerns related or unrelated to cancer. And you know, by the time this episode airs, the ruling in Alabama might have changed or, you know, different results may have occurred. But as it stands right now, as we're recording, the embryos created as a part of IVF have been ruled to be children by law by the Alabama Supreme Court. That sounds… Well, first of all, it should sound complicated to everyone. Um, I would hope it does. Because if reproductive health is anything, it's complicated. Um, for those who lean pro-life, that might sound like a win, you know? Hooray! Like, life at conception is being acknowledged. But I just invite us all to consider the complexity of what this will mean in practice. My understanding is that basically, IVF is not available right now in Alabama because all of the IVF fertility clinics are panicking. Like these embryos that we, you know, cryogenically freeze and care for are considered children. What does that mean? Do we need 24/7 babysitters? Do they have rights under law as far as like, you know, can their parents claim them on tax forms? Can we be charged with child neglect or abuse? Like there are so many complicated questions about these embryos that are in these little petri dishes and who have now been decided to be children. So I'm really curious how that's going to play out. I guess I just wanted to hold space for that and again, shine a light on how complicated this is. And I just think… I want to encourage everyone to think a step or two deeper when we talk about reproductive health. I think we've been taught to kind of pick a pro-life or pro-choice camp and stay there. And I think there's a lot of gray area. And for the different types of people affected by decisions like this. So like a lot of cancer patients use IVF as a way to have children once they recover. And it's like, things like this complicate that process for people who've already gone through so much. So yeah, I just wanted to remind everybody that this is complicated and we can all listen and hold space when we discuss these topics, rather than assume the intent of someone else. So moving beyond fertility, we also wanted to talk about menopause and premature menopause. Do you want to talk about that, Ella? 

Ella 23:45

Yeah so, prior to being thrust into the cancer world, I had no idea that cancer and cancer treatment and the drugs that are used and whatnot can lead to a basically premature onset of menopause for women. So, you know, there's certain drugs that either stop your menstrual cycle for a variety of reasons or, yeah, basically force the body into a sort of menopause. And I think what's really interesting then is there's a lot of effects for the rest of your life. So one of the factors in this is that if you're prematurely forced into menopause and your menstrual cycle is either paused or stopped entirely, is that, you may have to be on other medications to supplement those hormones that your body is not naturally producing anymore. Um, and again, I just think this is something that really isn't talked about very much or acknowledged. Um, so I think, you know, we for sure wanted to touch on that because it's something that some cancer survivors have to deal with.

Kayla 25:08

 Yeah. I think even more than fertility, this menopause piece is not talked about. Obviously in older cancer patients, it's sort of a moot point because they were either approaching menopause or already there. And it's this age group, this adolescent/young adult group, um, that this is getting overlooked in. First of all, menopause is not well studied in general, like outside of cancer. Most of women's health has been neglected for decades, and we're finally starting to see more studies actually focused on women and like women's health. But it’s slow progress. So first of all, we don't have the sort of robust well of information we have about other topics that are specific to men, which we can get on a tangent about, but I won't get on my soapbox. And then you add cancer into the mix and it's even more complicated. But I'm hoping we're seeing a little bit of progress in this area. I know, Ella, since you sort of graduated from the children's hospital, they've since established like a young adult focus, like a young adult clinic that tackles some of these issues. Because I've heard of patients, you know, who literally were never even told that this was going to happen to them. Um, and if they were, it was sort of as an aside, which is how you felt like your fertility conversation was sort of an aside. And I get it, like these doctors have gone to school for so many years and they stay up on all the current studies because like, cancer is their specialty. But you have to treat the whole person, not just the cancer cell. And so that means weighing, how old is this person? Like, you know, are they going to need estrogen replacement because otherwise their bones are going to start falling apart before they're 40? Like things like that. So I just think—I think Suleika Jaouad in her book “Between Two Kingdoms” mentioned this as well, which was one of the first like public or well-known cancer survivors I've heard talk about it in this age group; that experience of like premature menopause, like, in your 20s and what that means and how it's kind of not really addressed in the cancer world. So I think that shocks people almost more than the fertility issues, like some people don't think of the fertility issues. But then once you mention it, they're like, “Oh, I guess that makes sense. Like you've been, you know, getting poison or whatever in your veins.” But a lot of people are like, “Wait, menopause, like, for young people?” So again, a woman-specific issue, just like we were saying earlier with the harvesting of the eggs. This is so much more complicated for women. But I wanted to just put that menopause piece out there because it's so not well known.

Ella 28:16

 Thanks so much for sticking with us this episode. I know this might have been hard for some to listen to. Honestly, it was a little bit hard to record because it's—it's a hard truth. It's a hard topic. So again, we just appreciate all of you listening. Next week we will be talking about life milestones and how cancer potentially can overshadow those in the future. So thanks so much for hanging with us and we'll talk to you next week.

Kayla Crum
Previous

Episode 44: Forever Overshadowed?
Next

Episode 42: Ongoing Side Effects