Transcription:
Having Kids After Cancer

Dr. John Leonard (Host): Welcome to Weill Cornell Medicine CancerCast: Conversations about New Developments in Medicine, Cancer Care and Research. I'm your host, Dr. John Leonard, and today we will be discussing fertility preservation in people with cancer. My guest today is Dr. Jennifer Levine, a board certified pediatric hematologist oncologist at Weill Cornell Medicine and New York Presbyterian Hospital. She specializes in the treatment of children and adolescents with leukemia. Dr. Levine also directs the team that provides long-term follow-up care for survivors of childhood and adolescent cancers. She has a special interest in the effects of chemotherapy on fertility with a research focus on identifying patients most at risk for impaired fertility so that they can be offered fertility preserving approaches as part of their care. So Jen, thank you for joining us today.

This is such an important topic. We deal with patients all the time and dealing with a new diagnosis of cancer, and they have to focus on trying to get cured, trying to have a good outcome, and as part of it, really one major aspect of this is to make sure in certain age groups for certain people dealing with fertility preservation based on the age of diagnosis. So obviously this is an issue for many different ages, many different patients, both males and females. But I think what we'll focus on today a little bit more is the adolescent young adult population. So maybe if you could just kind of describe who is an adolescent. It's not necessarily intuitive to everybody who's an adolescent young adult, and there are clear definitions there. And then basically maybe just a second or two on the broad needs or special considerations in this population before we get more specifically to fertility.

Dr. Levine: Sure. So there are a couple different ways to think about adolescents and young adults. One way is just by age, so being 15 to 39 when you're diagnosed with a particular cancer. Another way, which becomes important in the area of fertility preservation, is whether or not somebody has gone through puberty, because that impacts what we're able to do for them. And these patients in general are really considered to be different than other patients who have been diagnosed with cancer.

So pediatric patients are really children, and their parents are really driving a lot of their decision making in their care, and older adults are usually engaged in very different activities of life. So they may be retired, they may have already raised a family, and they're just facing very different issues. But adolescents and young adults are really coping with a very different developmental stage. They're thinking about who they want to be, what their job is going to be, who they will marry, or be a partner with, or who they currently are, and what a family might look like. And those issues are just so different than either of the other two groups that they really kind of require special care and thought.

Host: So you have a complexity of life so to speak in that area; the complexity of a cancer diagnosis, and then obviously planning for the future when this may be somebody who was figuring out how they're managing high school, or who they're going to date, or something like that, and now have to think about, "Well, what's going to happen in five or ten or twenty years?" So obviously complicated and having somebody with expertise in that area must be very helpful.

Dr. Levine: Yeah. I think that some of those areas really are so specific, and they might be things that people don't think about asking about if they haven't become familiar with that age group, and understanding what their concerns might be.

Host: So that kind of brings us to the issue of potential infertility from cancer treatment, and all cancer therapies don't have a major impact. But the idea that at a high level- and this is obviously very specific to the age of the person, the nature of the treatment. But for a patient diagnosed with cancer who thinks they may, or doesn't know but is at least thinking about or certainly wants to have a family in the future, what are the kind of high level broad categories of cancers or cancer treatments that would lead to infertility or potentially?

Dr. Levine: So in terms of cancer diagnoses, primarily that's really limited to things where you might have some kind of a surgical intervention or radiation to organs that are related to fertility. So possibly testicular cancer or something that involves the uterus, or specifically the ovaries. In most other instances, it's really the treatment itself. So there's a class of medications called alkylating agents and those are known and have been known for a long time to impact fertility in both males and females. They're used in a wide variety of diagnoses and so there may be a wide variety of individuals for whom that is an issue.

For males more than females, there's a class of medications called platinum that can affect their fertility in the long term. And radiation therapy that involves the reproductive organs in either males or females is also going to affect their fertility. There is sometimes an impact of having radiation to the brain that can affect both males and females because it makes it harder for the body to respond to appropriate signals, but we do think of that a little bit differently and some of the treatments are different, so it's in some ways an easier issue to address.

Host: So is a good rule of thumb for someone diagnosed with a cancer, again of let's just say childbearing potential or interest, that they really should have kind of a consultation with somebody who is expert in this area? Because I know certain medical oncologists who treat the bulk of these patients- the knowledge about what to do, and what the concerns are, and what the data are can be uneven. Some people are very expert in this and some may be less experienced because they don't deal as much with 18-year-olds, for example.

Dr. Levine: Right. So I think it's always really useful to have somebody who specializes in a particular area because their depth of knowledge is going to be increased. And I think when we talk about having fertility conversations, it's really not limited just to individuals who have a potential of not being fertile. I think it's also really important to have conversations with individuals who may still retain their fertility. So it's really important because people may be worried that that's one of the things that's going to affect them, when in fact, it's not. And that may be a really important fear to allay at the beginning.

For adolescents, it may also be really important in terms of how we talk to them about things like contraception during or after chemotherapy as well. So I think these conversations are important across the board regardless of what we think the ultimate outcomes are going to be. For fertility, it's just a really important area that matters a lot to patients and survivors and their families.

And I definitely think, particularly in the cases where we might be considering interventions, that somebody who has a specialty in that area can really provide and help navigate and think through decisions that may be made when a lot of other important factors are happening. And the oncologists and the rest of the treating team may also really be thinking so much about what the treatment strategy needs to be at that time, that it can be really beneficial to separate those things out a little bit.

Host: Okay, so let's walk through a young woman is diagnosed with a cancer. What are the options? I mean, obviously there's going to be a complicated- or there should be a complicated discussion around what the treatments are going to be, what the risks are of that, but let's say for the sake of argument it's a treatment that has some risk of infertility associated with it. What's kind of the process that you would recommend? And what are some of the options that might be available for such a young woman in a general sense?

Dr. Levine: Right. So really I think the first thing is exploring where that person is, what their current family looks like, what some of their goals are. And if their decision is that they want to preserve their fertility, there are really I'd say three main interventions that would be considered, all of which involve freezing for the future. So you can freeze embryos, you can freeze eggs which means they're not yet fertilized but they would be fertilized at a later point in time.

Those are both considered sort of standard of care options because they're used in the general population for other individuals who have issues related to infertility. And then an option that is considered more experimental because it's newer or we have less experience with it, is actually freezing part of the ovary itself, and the way that that is used is by putting it back into someone's body later on. So there is some experience with that, but it's less common overall.

Host: And so I guess what would inform a woman's decision beyond their personal preferences, it's the therapy, it's the presence of a partner. Are there other factors that might figure? Obviously the age is going to affect the risk of infertility after some treatments, other things that would influence that.

Dr. Levine: So I think some of the choices- so some related to treatment or how sick someone is at the time. So that translates into how quickly one might want to start treatment because both embryo and oocyte, or egg freezing, require that you stimulate the ovaries, and that takes at least a couple of weeks, and so you have to be able to have a couple of weeks to not start treatment yet to be able to think about that. Ovarian tissue cryopreservation is really a surgical procedure, it can be done at the same time as other procedures, and so that doesn't require any delay in treatment.

And that's probably the biggest difference between those with the exception of the two being standard care and one being experimental. In terms of considering embryo versus oocyte, some of that has to do with whether you have a partner, whether one is interested in using that partner sperm, or using donor sperm. Some individuals- and I think the more we get into this entire field, we actually do really have to think about things like what happens if you freeze embryos and you are no longer with that partner later on, or things have changed, or your thoughts have changed? How much control do you want to have over what you have frozen.

And so in some instances, women will freeze both embryos and eggs to be able to have some ability to control that. From a technology perspective, neither one is 100% a guarantee that you can use them to have a child in the future. There is more experience with embryo freezing, but oocyte freezing is really catching up in terms of the ability to use that tissue. In general, someone who has leukemia is probably not a good candidate for ovarian tissue freezing in the beginning, because we would be concerned that leukemia might be in that ovarian tissue, and you wouldn't want to re-implant it.

Unfortunately leukemia patients often have more of a need to start therapy earlier also, so I think all of those things come into play, and you mentioned age, which is very important because for women, being 19 is very different than being 35. So if you're 35 and you really think that you want to have more children, you're sort of already closer to menopause in general, and that would increase the need to really think about preserving something, because after therapy you really might not have much of a reproductive window, but a 19-year-old probably has some more flexibility.

Host: So part of these discussions obviously must come into what are the chances? What the chances are? Am I not going to be able to have a child if I want to? What are the chances that this technology or manipulation or whatever is chosen is going to work? Is there a range from certain scenarios? And I get that this is very specific, but are there certain things where you can say, "Yeah this will probably work 80% or 90% of the time, and this will probably only work 10% or 20% of the time, but it's the best we have, so let's try it or maybe not try it because that may not be worth it." I mean, how do those things kind of play out? 

Dr. Levine: So I think A, it's like the million dollar question because that's what everybody wants to know, including physicians, how can we help make these decisions? And I think this is an area where males and females are very different, because for males, the standard of care, because we haven't talked so much about them, is really to sperm bank, which doesn't take very much time, it doesn't require any interventions prior to doing it. It does cost some money, but not a ton of money. There's probably almost no scenario where I wouldn't recommend that a male sperm banks before starting therapy. There are not very many downsides to doing it, if from a health perspective and a financial perspective, it's otherwise okay to move forward with that.

So I think that's kind of important because I think in this instance really your gender matters a whole lot. For females, we are able to make some categorizations in terms of sort of low, intermediate, and high risk. So high risk patients who are going to get radiation directly to their ovaries or uterus, primarily their ovaries, or those who are really going to get high dose alkylating agents. Procarbazine is a medication in particular we worry about, but we don't use so much anymore. So I think that we are able to put people into these low, medium, and high risk categories, and in the end, every intervention probably comes with about a 30% to 40% rate of success from it; much higher for sperm banking than for the female option.

Host: Okay. And I guess another question that comes up, is that you didn't mention is hormonal treatment or hormonal manipulations, short of collection in women of eggs or embryos ultimately. I know we've talked about this. Is this something- because it's easier to do obviously in many ways. Is that something that we know more about?

Dr. Levine: So I think what you're referring to is this category of medications called broader Gonadotropin-releasing hormone. Lupron is a common example. The idea of using these medications- it's an injection, they're given usually about monthly, and there's some idea that you can have sort of shutting down the ovaries so that you maintain function. And this is unfortunately an area where there's not a lot of great definitive data to help answer this with the exception of patients who have been diagnosed with breast cancer. And there are some downsides to the medication in terms of potentially causing menopausal symptoms which can be disruptive or unpleasant to a patient.

So it's an area that we've been very interested in studying more, both because you'd want to do it for everybody if we found it to be helpful, and you would really not want to be doing it if we found it to be something that was just added on that offered no benefit. So I am very hopeful that in the near future this is something we're really going to be studying, but it's definitely an area where I'd say from individual oncologists to institutions to larger groups like the American Society for Clinical Oncology where there really aren't clear guidelines about what should be done.

Host: So one obvious question that a patient who's confronting this is really what's the chance of this working? You've decided to go through a process of either egg freezing or collecting eggs to generate an embryo. Are these the sorts of things that one could say, "Well gee, the chance of this working is 90%. Is the chance of this working 20% of the time reality?" Because I think that that would make a big difference in certain situations and say, "Well, do we bother to try this or are we confident in this?" So how do you kind of look at this recognizing that it's complicated?

Dr. Levine: I think in the very big picture, each of the possibilities are interventions. So embryo, egg, or ovarian tissue freezing all have somewhere around 30% to 40% chance of resulting in a live birth after treatment is completed. It's probably a little bit lower for ovarian. Tissue, the numbers we have probably suggest maybe more like 25% to 30% on smaller numbers of patients. For embryo and oocytes, that number is affected by the age of the person at the time that they are doing the procedure, how many eggs and embryos are actually frozen, and what the success, for example, for eggs are of making embryos after. But probably around that 30% to 40% range of live births is a reasonable estimate.

Host: So what are the main areas of research in this area? 

Dr. Levine: Yeah. So they definitely break down into a number of different categories. So one is related to the risk for becoming infertile or trying to estimate how long a period of time a woman might have, for example, of being able to have a child post-treatment, because we're really not so great at estimating that now. So trying to understand are there things we can check at diagnosis? Are there things in the bloodstream or ultrasounds that we could say to somebody with somewhat more certainty, "This is what we think your risk actually is," or, "This is the amount of time we think you have post-treatment to be able to have a family."

And then on the technology side, there are a lot of really interesting kinds of things happening. So there's obviously the fine tuning of embryo and egg freezing, and that is again something that's applicable, like you mentioned, to the general population. So we talk about these 35% to 40% numbers or those static numbers, have we reached a ceiling, or could you really improve those percentages through technology? And then in some way for cancer patients, I think the Holy Grail is kind of being able to create some way of maturing eggs outside of the body, or creating an external ovary, for example. And so that would really change how we would be able to treat ovarian tissue that was removed from the body. It would remove the issue of whether or not somebody had leukemia. It would give physicians much greater control over how to take eggs, and make them into embryos, and then be able to implant them. And I think all of those areas really are necessary for us to move forward.

Host: What about cost of all of this? My sense is that the technology is- even outside of the cancer fertility preservation area are costly. And certainly when you think about young people- 18-year-olds tend not to have $100,000 sitting around to cover their medical expenses, et cetera. How much does all of this cost? Does insurance cover it? Where can people go if they're in a situation where they don't have the resources to manage this?

Dr. Levine: Right. So overall, insurance really doesn't cover these procedures at the moment. That is changing a little bit. For males, the procedure is much less expensive. It's probably about $500 to $700 the first year, and that includes analyzing a semen analysis to really understand whether the sperm that's going to be stored is going to be viable later, and then actually storing it for a year. And then following it that first year, again probably about $250 to $300 a year just for the storage, and that can vary depending on when somebody makes a decision to use it. All of the other procedures for females probably cost somewhere between $10,000 and $15,000, so it's really quite expensive, and that's a combination of medications that may need to be used, and then surgical procedures. And of course, all of these costs exclude needing to use reproductive technologies later to actually become pregnant.

So there are a number of ways that that cost can be mitigated somewhat. So there are organizations that work to provide free medications, like Live Strong. There are some others specific for breast cancer, and they also negotiate rates with various reproductive endocrinologists or sperm banks so that people who are facing a cancer diagnosis can get discounted rates. So that can definitely help. And there is an effort underway to improve insurance coverage.

So currently Connecticut, Rhode Island, Maryland, Delaware, and Illinois have all passed legislation that some are combined with fertility treatments in the general population, some have aspects that are more specific to cancer. They all relate essentially to private insurance, so nothing that's publicly funded is affected by this at this point. And there are a number of other states that have resolutions or bills that are actually under consideration. So I think we're hopeful that in the next decade or so that that landscape is going to change, but at the moment finances really end up being a concern for patients.

Host: I want to move now to kind of the other side. So let's pretend that we're in a scenario where we have a patient who's been through treatment, they've gone through fertility preservation of one sort or another, they're now in remission, hopefully cured. They want to now have, with their partner let's say, a family. What do you tell patients about how long to wait? What do you tell patients about the risk of the baby, if it's naturally a natural pregnancy? Is the baby more likely to have problems? Is the baby likely to have problems if it comes from assisted technology of some sort or another? What's your general advice to approaching that scenario once patients are ready now to move on to another phase?

Dr. Levine: So I think that the first part of that is the when, and that definitely is a discussion. There are two issues I think that- maybe more than two issues that are related to that. So one is the issue of relapse, which in a sense is a personal decision for somebody, but I think that it is necessary to have a conversation related to, "How would you feel or what would life be like if you as a female became pregnant or sired a pregnancy and there was a recurrence of the cancer?" That's something to be considered. The longer obviously you wait, the less likely that that is as a possibility. I'm not sure what the right answer for that is, and I think it really is a personal decision for individuals. Then the possibility of when can you become pregnant also to some degree depends on what treatments you've had.

So most males will be temporarily infertile after the completion of therapy, regardless of whether they will go on to be permanently infertile. And that's just because most chemotherapy affects making sperm in the short-term. And so it is possible that for a year or maybe even longer, it's not possible to sire a pregnancy and that somebody would have to wait. One way to ascertain that is by doing a semen analysis. For women, it's the same thing. So women's periods may stop during treatment, and it can take up to a year or longer for those periods to resume. And in that time period, they just may not be able to get pregnant. And then once you get to a point where you think, "Okay, well this is a reasonable thing to choose," most of the time unless we have clear evidence that somebody is now infertile, I think we always recommend attempting natural conception. It's definitely a lot cheaper. And then we tell them, "You're not going to wait a year."

Some people might if they hadn't had cancer, but see what happens and then move on to considering assisted reproduction. The data that we have available really suggests that children born to childhood or adolescent or young adult cancer survivors are no different from other children. They remain at risk for some issues that, again, in the general public you could have, but there's no real increased risk for any differences or an increased risk for having cancer. And whether those children are born by natural conception or assisted techniques, there's really no evidence that that also is any different if you're a cancer survivor than what you might have in the general population.

Host: And there are clearly patients who are not able, for whatever circumstances, to avail themselves of fertility preservation; whether it's timing, whether it's knowledge, whether it's financial resources. Anything special you would tell someone who has been through cancer therapy, doesn't have these options from before kind of lined up? Now they want to either father a child or become pregnant. Anything special that you would say to them? I presume you would say, "Well gee, you're probably at greater risk of infertility perhaps, so again, don't wait for years trying naturally before seeking help." Anything else that generally people either can do after the fact, so to speak? Your thoughts on that?

Dr. Levine: So I think for males, we talk about doing a semen analysis, and just trying to understand where things are. There's not much post-treatment that males can do to prevent or augment their fertility, but there is the possibility of having a urologist actually extract sperm, if there is no sperm in like an ejaculate, that could be used for assisted reproduction like IVF. So at the time that they desire a pregnancy, even if they appear to be infertile, there might be that option. For women, I do talk about fertility preservation in the survivorship period.

So if they haven't done anything before, they're not ready to have children, but they seem like they still have fertile potential at the moment or good ovarian reserve, but we don't know how long that's going to last, they can still consider freezing eggs or embryos. And in a way, it's almost easier sometimes. They're not as pressured as they might be at a diagnosis, but I think it's still really important to consider that. So if you're 19 years old and you got treatment where we think, "By 25 or 26, you really could be infertile," and you're telling me you're going to get a PhD in something, then this might be a really good time to freeze some eggs and then that might give you some more options later on.

Host: And then one other question that comes up a lot is, is the cancer going to come back if I get pregnant? Or what are the risks to the mother, if the mother is the patient, of getting pregnant after cancer therapy? Are there any particular rules of thumb that you give in that regard, or to say, "Go to it as long as you want to go ahead."

Dr. Levine: Well, I think the answer to that is definitely different depending on the type of cancer, and at least what our experience is, and how long we think that there's a likelihood for a relapse to occur. There are obviously many women who go on to be mothers after treatment. And again, some of it I think ends up being a personal decision. I think the most important thing is to just really have an honest discussion about what the possibilities are, and what is somebody's comfort level in terms of whether this could occur. But if you're beyond the time period where your oncologist is telling you that there's a risk for recurrence, then I think that's a time where you should really feel comfortable going ahead and making plans for these future events.

Host: What advice do you have as far as talking about this? I can see that this could be for a couple that's let's say newly married. I mean it's obviously a big deal in any scenario in the context of cancer, but that's probably a different and in some ways easier conversation than talking to a 14-year-old about this, or a single person, or having parents involved in these discussions. What sorts of rules of thumb or suggestions do you give? I can imagine that some people might be- I don't want to say bashful, but hesitant to talk about these things. Also religious preferences might enter as well. Any thoughts on that?

Dr. Levine: I mean, I think it goes back to one of your initial questions, which was about someone who sort of specializes in this area, because I think they're important conversations to have, and so part of talking about it is helping people talk about it if they're uncomfortable with the subject matter. For the younger patients, the idea of having a family may be so far from what they're thinking about that you also really need to be prepared to say, "I hear that you're telling me you don't want to talk about this and this doesn't matter to you, but it might matter to you later, and so we really should pay attention to this." And I think that there is an aspect when you're dealing with a couple of trying to mitigate their relationship with one another, that they need to be able to handle this as a couple.

Host: So to wrap up, I think what would probably be a good way to end is just kind of your advice, your most high level advice to either a family or a patient dealing with this on the front end, meaning "I just got a cancer diagnosis, and how do I fit this into my priorities of all the things going on?" And then again get on the back end of, "How do I get help and support for these sorts of issues?"

Dr. Levine: I think the most important message is just that you should be discussing this, and you should be discussing it at diagnosis, you probably should have a conversation during treatment to just think about what's coming next, and to talk about it in survivorship. Because if it's not- and if your healthcare team isn't raising the issue with you, you should raise the issue, because that's how you're going to get the information. And that doesn't mean that you're going to have some kind of an intervention, or make a choice, but it means that you've really thought through what the possibilities are, and considered what's important to you.

Host: And having a team that is expert in this seems to be extremely important. It strikes me that somebody kind of being treated by a solo practitioner somewhere. Obviously that's complicated in cancer therapy, sometimes it's the reality of where people are, and what they have available to them. But this is really one area where you need to have a team with experience and kind of sensitivity to these issues, and options to offer is an essential thing.

Dr. Levine: Yeah, I think there's no doubt that fertility preservation happens when there's a team available to make this happen. I mean, part of it is the talking, part of it is navigating the system, part of it is assisting with finances, and that is something that I think really does require that the infrastructure's in place, people have thought about this, they know how to do it, and it's something that can happen smoothly and doesn't really disrupt moving on to all the things that you need to do in the context of treating your cancer.

Host: Well, thank you. This has been a really great discussion, and I think there are lots of pearls in there for patients and their families, and I think also a message of hope for many people that, despite facing a cancer diagnosis and thinking that they have such a big challenge ahead of them, that ultimately many people go on, and ultimately confront and deal with some of the happier things that come along later. Maybe a little more complicated than the average person in some ways, but nonetheless these issues can take on a great importance and bring people back to kind of the mainstream of what people commonly deal with, and having a family is obviously important to many people, so it's great to be able to offer that.

So I want to invite the audience to download, subscribe, rate, and review CancerCast on Apple Podcasts, Google Play Music, or online at www.WeillCornell.org. We also encourage you to write to us at This email address is being protected from spambots. You need JavaScript enabled to view it. with questions, comments, and topics you'd like us to see covering in more depth in the future. That's it for CancerCast: Conversations about New Developments in Medicine, Cancer Care, and Research. I'm Dr. John Leonard. Thanks for tuning in.