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Dr. Jones: When parents are faced with the diagnosis of cancer in a child, they are overwhelmed with the fear of losing their child. Overwhelmed by the medications and the surgery and the testing and the last thing on their mind is thinking about their child as a future adult with hopes and dreams and children of their own. But what are the options for fertility preservation?

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Dr. Jones: Over the last 40 years the survival rate of childhood cancer has gone from 10 percent to almost 90 percent. In years past, our goals in the treatment of childhood cancers were just to get kids past the crisis of diagnosis to survival for five years and now we're thinking about long-term survivorship to adulthood with what a full life means for these children. This means thinking about these kids having kids. These are decisions made often by the parents because the kids are often clueless about having kids.

So, today in The Scope studio we are joined by Dr. Douglas Fair and Dr. Joe Letourneau. Dr. Fair is an oncologist at Primary Children's Hospital and co-director of the Huntsman-Intermountain Adolescent and Young Adult cancer care program. And Dr. Letourneau is a fertility preservation specialist at the University Center for Reproductive Medicine at the University of Utah. And thanks for joining us.

Dr. Fair, how do we approach parents and children about fertility preservation? They got a really sick kid, and they just want their kid to live to Christmas, but we want them to have a whole life.

Dr. Fair: I think you said it well in that. Unfortunately, at the time of diagnosis because of the intensity of a new diagnosis, the workup, the planning, the discussion in referral for fertility preservation can be forgotten or minimized. And I think additionally, fertility preservation counseling is complicated, it's nuanced, it's consequential. And particularly, for women, it can involve an additional procedure, and it can delay the initiation of cancer therapy and, in some cases, particularly for women can be costly.

So, it's a lot to know and it's a lot to talk about. And really it was with my own ignorance that I realized that I in my training, which is not different from other pediatric or adult oncology training, didn't get a lot of understanding about what the fertility preservation process is, not to mention, all of the different nuances of having that conversation with a child, with a teenager or with a parent. So, it really is a really difficult conversation.

And what we are finding out from data and what we can also say by intuition it's a super important conversation that parents really care about and they just sometimes don't know where fertility lies in importance when their child is diagnosed with cancer and it's our job as oncologists to bring that up and to describe that.

Dr. Jones: Right. Well, I remember in my own clinic when I'd see adolescents and I'd be approaching them and when the mother's in the room, the adolescence got her arms crossed and her eyes are rolling even though she's pretty sick. When her mother is out of the room, then I can actually have a conversation with her but it's complicated on this issue even talking about fertility or sex. Are the approaches different depending on the ages? Can you actually do this conversation and have technology for four-year-olds or is it mostly for teenagers?

Dr. Fair: It's a great question. I'll take the conversation piece first and I would just echo your hint that it is tailored to the patient. And that certainly includes age, maturity, but also the family dynamics and where the patient is and how well the patient feels.

And that's where it's just really important to be nimble and to be flexible but knowing that it's a super important topic that even if the parents or the child don't really want to talk about anything, certainly not cancer and not fertility or sometimes awkward things like eggs, testes, ejaculation, fertility preservation. These are really important topics that they will care about in their survivorship. And so I think that's a really important thing to state.

And to your other question about just the technology and what can we do now for patients, we typically break patients down into prepubescent or pubescent. So, meaning patients who have gone through puberty which is usually somewhere between the ages of 12 to 14 when patients go through puberty and then so older or past puberty or before puberty. And I'll let Joe talk a little bit about the options that we have for prepubescent patients.

Dr. Jones: Yeah. Joe, let's talk a little bit about let's say a 12-year-old or 10-year-old boy. So, he hasn't really developed or matured yet. Is there much we can do in that particular situation?

Dr. Letourneau: Well, one of the hallmarks of puberty is the maturation of the sperm and the eggs and the ability for them to eventually create a pregnancy. So, with young children, it can be difficult because we hope in the future that we can mature sperm and eggs from very young gonads but at this point, that remains an experimental process. It seems achievable but at this point, the gametes or the sperms and eggs that we can get from prepubescent children would not be likely to make a pregnancy so it would require a technology that can achieve that maturation outside of the body.

The sperm stem cells and the eggs that we are born with are not necessarily able to create a pregnancy, they don't have a fertilized ability in a sense. And that's a gap in our technology and research that we hope to close particularly for young patients who are prepubescent.

A lot of our focus in counseling is on education. We want people to know that even if there's not a proven treatment now, the door is not closed on family building in many ways. We don't want people to grow up and wonder if they can ever have a partner, wonder if they're good enough, wonder if they'll live a normal life. We want them to know that they have a lot of options, a lot of normal options to build a family. And sometimes that includes considering fertility treatment in the future, sometimes that includes considering donated eggs or sperm in the future, and sometimes it may include considering adoption as a very normal way to build a family.

Dr. Jones: Well, there are somewhere close to 400,000 survivors of childhood cancer living in the U.S. now, and they're trying to live their lives in ways that they now are survivors, hopefully, putting that thing in the past, "Oh, that happened to me in the past." So, that's really encouraging that we're doing so well these days.

The other encouraging bit is that really young kids, their ovaries and their testes are a little bit more resistant to chemotherapy. So, the younger the kids are the more likely they are to actually make it through with some eggs and sperm left. Do I have that right?

Dr. Letourneau: That's correct. A lot of what makes the sperm and egg cells susceptible to chemotherapy is the fact that later in life they, or the supporting cells around them, are rapidly dividing making them susceptible to chemotherapy, which targets rapidly dividing cells. Early in life when they're quiescent or sleeping, chemotherapy is a bit less likely to see them in a way.

Dr. Jones: So, I have some questions, of course, on the larger issues. But what have I not asked you about kids in the program, the oncofertility program for younger patients? Is there often a debate between the mom and the parents or are the kids mostly going along or the kids have questions too?

Dr. Fair: I think what is surprising, at least that I've found anecdotally, is that, well, once you break the barrier of talking about an awkward or difficult topic, families are super happy that you brought up that topic even if we are talking about a patient that doesn't have good fertility preservation options like we're talking about prepubescent males and females. And I think there's a couple of reasons for that and data support that. So, patients have told us in studies, in surveys that after they have been done with their treatment even if they haven't preserved their eggs or sperm, they feel that they were taken much better care by their cancer team if fertility preservation was brought up.

And to emphasize a point that Joe mentioned, just because we can't preserve eggs or sperm before cancer therapy doesn't mean that fertility preservation or oncofertility or thinking about family building is not an important part of their care and in survivorship. And that's again on oncologists to really realize that this is a really important feature of patient survivorship. And so as Joe said, there can be important timing considerations and different physiologic considerations to seeing a fertility specialist like Joe after they've completed therapy to see where exactly where are their fertility preservation options and having that conversation again even if at the beginning before therapy they couldn't preserve.

Dr. Jones: And I think that's been one of the unique things about the Huntsman Cancer Center is trying to look at the patient and the family in a really big way rather than just, "Oh, you have this cancer and you are your cancer." It's "You are this person, you have potentially this future, you are this family." And the Huntsman has done a really great job and the oncofertility consortium and the oncofertility program here has been trying to think big.

Dr. Fair: They really have. They've been incredibly supportive in adolescent and young adult cancer medicine which this falls is a big part of that with survivorship, which fertility preservation and oncofertility is a big part of that and then directly oncofertility. The University of Utah and the Huntsman have really just been super supportive since Joe and I started this program and it's really just been a series of yes, yes, yes that sounds like something that patients would really benefit from. How can we be supportive?

Dr. Jones: I think helping parents and their kids think about these options and providing access to fertility preservation technology is part of our mission. And I thank you both for being here and I thank everyone for listening to The Scope.

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