AYA Patients Face Long-Term Fertility, Cognition Concerns After Cancer

Adolescent and young adult (AYA) patients with cancer can face a range of issues such as cognitive impairments and fertility concerns as a result of both their disease and their treatment history, as Lillian Dugan, director of programs for the Dear Jack Foundation, explained.

“It’s such a struggle because they might not be thinking about some of these long-term effects,” Dugan said.

“They might not be thinking about fertility or ‘What classes am I going to take next semester?’ because they’re just trying to get through day to day.”

As part of the “Speaking Out” video series, Dugan spoke with CURE on behalf of the Dear Jack Foundation, which offers programs intended to improve the quality of life for AYA patients and survivors as well as their families.

Q: What are some of the issues that face young patients as they transition into adult care?

A: I think the biggest piece for our young adults that we see is that they truly are in this weird group there where they’re not little kids, they’re not in pediatrics, and they’re not older adults, which is stereotypically what everyone thinks of when they hear “cancer patient.”

I think some of the biggest issues are the psychosocial issues, and they range from cognitive impairments to fertility. And I think those are the biggest late-onset side effects that we see or those are the biggest complaints, concerns and some of the biggest topics that actually impact their day-today [lives].

They are college students, they’re starting their career, they’re starting new jobs, they’re starting grad school, so the cognitive impairments are a big issue just based on the different types of cancer and the treatments that come about because of what they’re going through. This is what we hear from them. This is what our participants talk about.

Fertility is a huge topic that comes up. A lot of people are wanting to start families. A lot of people are getting married and thinking about having kids and creating families. So they’re really struggling with those two pieces, the cognitive and fertility [concerns].

Q: What resources are available to patients and survivors as they grapple with cognitive and fertility issues as they move along in their life?

A: There have been a lot of great organizations that have come about. Of course, these are the things we hear [about] and then organizations are formed, which is just a wonderful, positive piece to this. And we have quite a few. One of the foundations is Worth the Wait; they do a lot of fertility grants. We’re seeing those organizations come about. It’s expensive, they already have medical bills, some of them have had to take a leave from work. So to have organizations that come into play and say, “We’re going to help you fund this. We’ve been through this. We’re going to walk through it with you” has been amazing to see.

Cognitively, I know there are organizations that help individuals either with college or go through college scholarships. So, there is definitely a financial piece to some of the psychosocial issues and a lot of organizations [are working to] help [with] that.

And then, [there’s] that supportive piece. There are organizations that help participants get through college and then also provide a mentor or some sort of tutoring service so they can get through that. There are organizations like Cancer and Careers that have helped individuals get back into the workforce as well.

Q: How do you think awareness of the psychosocial concerns and other long-term effects has evolved over time?

A: Fortunately and unfortunately, this group [of ] young adults with cancer has been a little bit more pushed into the spotlight just because the statistics are showing there are so many more young adults who are being diagnosed with cancer.

It’s bringing more awareness, which, research-wise, is great because we have this group of individuals who are now being focused on and really being paid attention to within the research field, which is wonderful.

But at the same time, I think it’s just the fact that we’re seeing it more and more, and that so many more young adults are being diagnosed with cancer that now people are paying a little bit more attention to this population.

Q: Are cancer type, cancer stage and treatment regimens all factors in determining the severity and the length of the late effects that these folks face as they get older and move into adulthood?

A: Yes, absolutely, and it just depends on the treatment. I think the treatment is a big piece because a lot of the [chemotherapies] and the radiations have long-term side effects. And that’s why fertility is a big piece in this process, because a lot of these treatments can cause fertility issues.

So these are things you know, day 1, someone, a young adult, a 20-year-old is diagnosed with cancer, their doctors may already be talking to them about, “What can we do for [fertility] preservation?” And for a 50-year-old, they may not be thinking about it, but for someone in their early 20s, it is a genuine concern.

Q: What conversations should these young patients and their families be having with the care teams?

A: I think it’s definitely going to be personal. When starting cancer treatment, the goal of the medical team is to get you through. It’s to create a treatment plan that gets you from whatever stage of cancer you’re at to no cancer, and they’re very good at it, whereas the Dear Jack Foundation and other foundations are really looking at a more integrative picture. The medical team will get you there. We want to make this life better for you while you’re going through this. We want to provide programming and impact you in more positive ways. ... And then, of course, besides your medical team, [it’s about] creating a really important team with family and friends who can advocate on your behalf if you’re feeling like this is too much, or [thinking], “I had chemo today and I cannot advocate for myself today.”

Transcript was edited for clarity and conciseness.

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