The unique needs of young cancer survivors are often overlooked
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Four years ago, Lourdes Monge was 25 and had just quit an uninspiring job in New York. The plan was to crash at their sister's 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 Mon-Haye'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.

In many ways, Monhae represents a new generation of cancer survivors. They're younger and have to navigate all of life after treatment. Things like dating, socializing,

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, or 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. Monge 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. Would I want to, you know, form a family with a child, you know, knowing that they might have to see me die young? Yeah.

But 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 fewer people are dying from the disease. How do young survivors navigate life with cancer and its after effects? From NPR, I'm Elsa Chang.

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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 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's 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 and I couldn't. And Spider-Man got to take radiation and he got cool powers and so 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 make it on to 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 shape 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 restricted 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 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 of somebody whose cancer was never going to be as visible on me as it is on the majority of cancer patients. My senior picture, no, it was terrible. My hair started coming back in, but then I was taking so much prednisone, my face got all swollen up. Brendan Harley landed in the hospital in 1995, the night before his SAT exam. He was

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 a stack of 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. 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. To this day, I can't remember. 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 improves the quality of life afterward. And how can I make it so that the next generation...

Meanwhile, back in New York, EJ 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 edited by Diane Weber and Jeanette Woods. Our executive producer is Sammy Yannigan.

It's Consider This from NPR. I'm Elsa Chang. Hi, I'm Laurel Wamsley, and I cover personal finance for NPR. That means I report on some of the questions that might keep you or your loved ones up at night. Like, will I ever be able to buy a home? What about retirement? As interest rates drop, where should I put my money? Economic headlines can be confusing, but NPR is here to help you make sense of them. To support this coverage, please give today at donate.npr.org.

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