Consider This from NPR - The unique needs of young cancer survivors are often overlooked

Episode Date: December 11, 2024

One of the triumphs of modern medicine is that children diagnosed with cancer today have an 85 percent chance of surviving at least five years.That is up from a rate of about 50 percent a generation ago.But survival brings new challenges.NPR's Yuki Noguchi reports on the unique needs of young people as part of the series, Life After Diagnosis.For sponsor-free episodes of Consider This, sign up for Consider This+ via Apple Podcasts or at plus.npr.org. Email us at [e-mail] more about sponsor message choices: podcastchoices.com/adchoicesNPR Privacy Policy

Four years ago, Lourdes Monge was 25 and had just quit an uninspiring job in New York. The plan was to crash at their sisters in Philadelphia while plotting a new career in teaching. Instead, I found cancer in my body. Monge was devastated. An agonizing series of tests and scans revealed that cancer had spread from breast to lung. But the oncologist explained that an advanced diagnosis was no longer a death sentence. She even told me to try to ignore the fact that it was stage four, which is a little hard to ignore. Today, thanks to revolutionary

changes in cancer care, treatments are much more effective than they were a generation ago. That said, undergoing these treatments threw Monje's life into turmoil, physically and emotionally. Life, for me, it felt infinite. And I think that's something that a lot of us have when we're young, is that life feels like it's going to go on for a long time. I spent a lot of time mourning that I don't have this carefreeness about life anymore. That, I think, has been one of the harder emotional changes. In many ways, Monje represents a new generation of cancer survivors.

They're younger and have to navigate all of life after treatment. Things like dating, sex, child rearing. Alison Silberman is CEO of Stupid Cancer. That's a support group for young adults. And she says cancer historically didn't affect many young adults, so they have often been overlooked in both cancer research and support. And because they're younger, with more life to live, their needs are greater and more complex.

When we think about all the things that are happening in your life at that time, you know, you're graduating from high school, going to college, you're starting a career, starting a family. Having a cancer diagnosis has such a significant impact on that. It can have an impact on your fertility, on your body image. For Lourdes Monge, new and experimental drugs have minimized their cancer four years on, but lots of big life questions are still sorting themselves out from when and how to get back into dating to when or

if to start a family. Monje says being non-binary made the infertility from treatment a little easier to accept, but... I see how people struggle who do have kids and have the same diagnosis. I still really, you know, go back and forth a lot. What I want to, you know, form a family with a child, you know, knowing that they might have to see me die young. Yet cancer also made things like time with family more precious. It makes me savor those good little moments so much more. It makes me feel so much happier with my life than I was before.

On paper, quote unquote, I have less than I used to, but the value of my life feels so much more. Consider this. The landscape of cancer is shifting. Cancer rates are rising among young people, but technological advances in detection and treatment mean four people are dying from the disease. How do young survivors navigate life with cancer and its after effects? From NPR, I'm Elsa Chang. 52 years ago, the federal government launched a program to support the poorest elderly and disabled Americans. But an NPR investigation has discovered a very different reality.

They come to me and say, you owe $20,000. How a program designed to help the most vulnerable is trapping them in poverty. Listen now on the Sunday story from the Up First podcast. It's Consider This from NPR. One of the triumphs of modern medicine is that children diagnosed with cancer today have an 85% chance of surviving at least five years. That is up from a rate of about 50% a generation ago. But survival brings with it new challenges. NPR's Yuki Noguchi has this story as part of her series called Life After Diagnosis. She takes it from here. E.J. Beck, at age 10, looked like a bookish Tinkerbell with soft brown hair and inquisitive

almond eyes. Always a little bit of an old soul. That's when a thyroid cancer began bulging from her tiny neck. It took her joyful school routines and replaced them with a difficult surgery, followed by harrowing radiation treatment in an isolation chamber. These big guys in hazmat suits approach you and they've got this like metal container. And you're like, wait, it's so toxic that you guys can't even be in the room with it. Why am I putting that into my body?

The pill from that hissing container made her so sick and radioactive, she remained without human contact for many, many days. Beck, with her parents, had decided not to tell friends, teachers, or even her two younger sisters about her illness. They hoped it would help her slip back into normal life eventually. But in the moment, it made the isolation more intense. She spent that lonely eternity rereading the Harry Potter series and drawing on a picture of Spider-Man posted to the window.

I was so jealous because Spider-Man could just leave the hospital when I couldn't. And Spider-Man got to take radiation and he got cool powers and I got sick and sad and lonely and tired. Today Beck is 23 but still lives in the shadow of that experience, quite literally in one sense. Her apartment is within earshot of constant sirens near the New York City hospital where she received treatment. Beck says cancer forged her into who she is. It also left her feeling scholastically, socially, and emotionally out of step with peers for

years. It takes a really long time to feel like you're falling into sync with everybody else, even if you would make it onto college and you're in college with everyone else. You kind of feel like you're marching to a slightly different beat and you're trying really hard to keep up. These are some of the less discussed after effects of outliving cancer. The loss of routine, identity, and peer support, not to mention the cognitive and physical impacts of treatment, deeply shaped survivorship.

Patients often feel forgotten when treatment ends, and research shows the knock-on effects from mental health to financial challenges can persist for decades. Doctors and parents tend to focus, understandably, on the medical demands of pediatric cancer. But Julia Gomez says for kids, the loss of normalcy of school hits harder. It's quite devastating. Gomez is an education coordinator at NYU Langone's medical system. It's a new type of job at select cancer centers to help young patients remain connected to school. Gomez helps parents navigate dizzying bureaucracies so students can receive home tutoring, for example.

He needs new evaluations that those are completed. If they need an IEP, that gets done. Even if kids can remain in school, they often feel marked. EJ Beck, for example, continued attending class through periods of treatment. But her restrictive diet meant she couldn't eat school lunch. I had this girl, I'll never forget it. She'd come up to me and say, you're really bullying everyone else

because you're so skinny and you're dieting. So you're saying that the you're dieting, so you're saying that the rest of us are fat. Beck swallowed her explanation to keep her cancer secret. Once people know, they never look at you the same way. Still, Beck felt lucky. She didn't lose her hair. She could conceal her cancer.

I had the privilege as somebody whose cancer was never going to be as visible on me as it is on the majority of cancer patients. My senior picture, now it was terrible. My hair started coming back in, but then I was taking so much Pregnazon, my face got all swollen up. Brendan Harley landed in the hospital in 1995, the night before his SAT exam. He was diagnosed with acute leukemia at 17. I had to call my date for the junior prom, which was the next weekend, and say, sorry,

I'm not going to be there. And I was then gone. Gone for a full year. This was before cell phones and social media, so Harley's isolation felt complete. I was effectively living in a bubble at home. My middle brother would carry my homework into school and bring back to stacker homework for me to work on. I'd have a tutor that showed up once a week and we would sit masked and gloved on different sides of the room and talk. Bald and

tired, Harley studied frantically from his hospital bed, clinging to schoolwork like it was a handhold on life. And then I got out and went right to take my exams in June and I couldn't remember any of the things I was studying because of all the chemotherapy. But says Harley, returning home after feeling so vulnerable made him more determined to live. When driving down my street, I was like, there's green everywhere. And I know there's always been green everywhere,

but it was like I saw it for the first time. I made it back, right? To this day, I can't forget. Three decades later, Harley's cancer-free and the father of two. He's also a biomedical engineer at the University of Illinois fighting cancer on a different front. He makes models of tumors to help design treatments that better target cancers and also improve the quality of life afterward. And how can I make it so that the next generation goes through something different? Meanwhile, back in New York,

E.J. Beck is also exacting her revenge on cancer. This fall, she started medical school at the teaching hospital where she'd received treatment at age 10. To walk through the doors of the hospital, to me, I almost feel like I can see the younger version of myself standing next to me in such a different place in her life to be here. I mean, I can't even tell you how emotional I got when I was accepted to NYU. Cancer stole much of her childhood, she says, but it also set her on a mission to give

back to a field that's given her so much. This episode was produced by Claire Schneider and Brianna Scott. It was Consider This from NPR. I'm Elsa Chang.