The unique needs of young cancer survivors are often overlooked

Summary

Podcast Summary: Consider This from NPR
Episode Title: The Unique Needs of Young Cancer Survivors Are Often Overlooked
Release Date: December 11, 2024
Host: Ailsa Chang
Duration: Approximately 12 minutes

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Introduction: A New Generation of Cancer Survivors

The episode opens with the poignant story of Lourdes Monhey, a 25-year-old who faced a life-altering cancer diagnosis just as she was attempting to transition into a new career in teaching. Her journey underscores the evolving landscape of cancer treatment and survivorship among young adults.

Lourdes Monhey [00:13]: "Instead, I found cancer in my body."

Despite her initial devastation upon learning that her breast cancer had metastasized to her lungs, advancements in cancer care provided hope and extended her life beyond what was once considered possible.

Lourdes Monhey [00:32]: "She even told me to try to ignore the fact that it was stage four, which is a little hard to ignore today."

Challenges Faced by Young Survivors

Monhey's experience highlights the significant physical and emotional turmoil that accompanies modern cancer treatments. She reflects on the loss of youth and carefree living, which many young survivors grapple with post-treatment.

Lourdes Monhey [00:50]: "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."

Overlooked Needs in Cancer Care

Alison Silberman, CEO of Stupid Cancer—a support group for young adults with cancer—emphasizes that historically, cancer research and support systems have not adequately addressed the unique needs of younger populations. Young survivors often face complex life decisions related to dating, sexuality, and family planning that differ significantly from those of older adults.

Alison Silberman [01:42]: "Having a cancer diagnosis has such a significant impact on that. It can have an impact on your fertility, on your body image."

Navigating Post-Treatment Life

Monhey's journey, now four years post-diagnosis, illustrates the ongoing challenges survivors face, such as re-entering the dating scene and making decisions about starting a family. She candidly discusses the emotional struggles tied to infertility resulting from her treatment.

Lourdes Monhey [02:20]: "But I see how people struggle who do have kids and have the same diagnosis. I still really really go back and forth a lot."

However, cancer has also deepened her appreciation for time spent with family, reshaping her perspective on life’s value.

Lourdes Monhey [02:38]: "It makes me savor those good little moments so much more."

Personal Stories: E.J. Beck and Brendan Harley

The episode delves into personal narratives that highlight the long-term impacts of childhood cancer survivorship.

E.J. Beck's Story

Diagnosed with thyroid cancer at age 10, E.J. Beck endured intense treatments that led to prolonged isolation and challenges in reconnecting with peers.

E.J. Beck [05:18]: "I was so jealous because Spider man could just leave the hospital and I could, and Spider man got to take radiation and he got cool powers, and instead I got sick and sad and lonely and tired."

Her experience underscores the social and emotional hurdles faced by young survivors, including feelings of being out of sync with their peers.

E.J. Beck [06:39]: "Even if you, like, 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 beam and you're trying really hard to keep up."

Today, Beck is channeling her experiences into a career in medicine, aiming to give back to the field that supported her through her darkest times.

E.J. Beck [10:28]: "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... it set her on a mission to give back to a field that's given her so much."

Brendan Harley's Story

Brendan Harley was diagnosed with acute leukemia at 17, right before his SAT exams and junior prom. His treatment in the pre-social media era led to complete isolation, exacerbating the psychological toll of his illness.

Brendan Harley [09:13]: "I was effectively living in a bubble at home."

Despite the severe side effects of chemotherapy, including memory loss, Harley emerged from his battle with cancer determined to enhance future cancer treatments and improve survivor quality of life.

Brendan Harley [10:23]: "And how can I make it so that the next generation goes through something different?"

Support Systems and Long-Term Impact

Julia Gomez, an education coordinator at NYU Langone's medical system, plays a crucial role in helping young cancer patients stay connected to their education during treatment. Her work addresses the profound loss of normalcy that pediatric cancer patients often experience.

Alison Silberman [07:29]: "It's quite devastating."

The stories of Beck and Harley illustrate the enduring effects of cancer survivorship, including disrupted education, social isolation, and altered personal identities. These challenges persist long after medical treatments conclude, highlighting the need for comprehensive support systems.

Conclusion: Moving Forward

The episode concludes by showcasing the resilience of young cancer survivors like E.J. Beck and Brendan Harley, who have transformed their traumatic experiences into drives for personal and professional growth. Their narratives emphasize the importance of tailored support and continued advancements in cancer care to address the unique needs of young survivors.

Ailsa Chang [02:53]: "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."

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Notable Quotes:

• Lourdes Monhey [00:32]: "She even told me to try to ignore the fact that it was stage four, which is a little hard to ignore today."

• Alison Silberman [01:42]: "Having a cancer diagnosis has such a significant impact on that. It can have an impact on your fertility, on your body image."

• E.J. Beck [05:18]: "I was so jealous because Spider man could just leave the hospital and I could..."

• Brendan Harley [10:04]: "I made it back, right to this day, I can't remember. I can't forget."

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Key Takeaways

• Advancements in Treatment: Modern cancer treatments have significantly improved survival rates, especially among young adults.

• Unique Challenges: Young cancer survivors face distinct challenges related to personal development, education, and social integration that are often overlooked.

• Importance of Support Systems: Comprehensive support, including educational assistance and mental health services, is crucial for helping young survivors navigate life post-treatment.

• Long-Term Impact: The effects of cancer extend far beyond physical health, influencing emotional well-being and life trajectories for years to come.

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End of Summary

Transcript

[Ailsa Chang]

Four years ago, Lourdes Monhey 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.

[Lourdes Monhey]

Instead, I found cancer in my body.

[Ailsa Chang]

Monhe 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.

[Lourdes Monhey]

She even told me to try to ignore the fact that it was stage four, which is a little hard to ignore today.

[Ailsa Chang]

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 he's life into turmoil, physically and emotionally.

[Lourdes Monhey]

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.

[Ailsa Chang]

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

[Alison Silberman]

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.

[Ailsa Chang]

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. Mon he says being non binary made the infertility from treatment a little easier to accept.

[Lourdes Monhey]

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?

[Ailsa Chang]

Yet cancer also made things like time with family more precious.

[Lourdes Monhey]

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.

[Ailsa Chang]

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 aftereffects? From npr, I'm Ailsa Chang.

[Laurel Wamsley]

This message comes from NPR sponsor the Capital One Venture X card. Earn unlimited 2x miles on everything you buy, plus get access to a $300 annual credit for bookings through Capital One Travel. What's in your wallet terms? Apply details atcapital1.com this message comes from Carvana. Whether you need weeks to research the perfect car or know exactly what you want, Carvana makes car buying easy. Choose from Carvana's massive inventory using customizable search tools. However you buy, buy your car with Carvana.

[Ailsa Chang]

From the online Trends that dominated 2024 on the spectrum of brat to demure.

[Laurel Wamsley]

Where are you right now?

[Ailsa Chang]

To spicy TikTok viral reads these romance fantasy books about dragons. NPR kept you up to speed on.

[Yuki Noguchi]

Pop culture all year long.

[Ailsa Chang]

Give back to the news source that just hits different by donating [e-mail] and thank you. 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]

E.J.

[Yuki Noguchi]

Beck, at age 10, looked like a bookish Tinkerbell with soft brown hair and inquisitive almond eyes, always a little bit.

[E.J. Beck]

Of an old soul.

[Yuki Noguchi]

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.

[E.J. Beck]

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?

[Yuki Noguchi]

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.

[E.J. Beck]

I was so jealous because Spider man could just leave the hospital and I could, and Spider man got to take radiation and he got cool powers, and instead I got sick and sad and lonely and tired.

[Yuki Noguchi]

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.

[E.J. Beck]

It takes a really long time to feel like you're falling into sync with everybody else. Even if you, like, 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 beam and you're trying really hard to keep up.

[Yuki Noguchi]

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.

[Alison Silberman]

It's quite devastating.

[Yuki Noguchi]

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.

[Alison Silberman]

For example, she or he needs new evaluations that those are completed if they need an IEP that gets done a 500.

[Yuki Noguchi]

Even if kids can remain in school, they often feel marked. E.J. beck, for example, continued attending class through periods of treatment, but her restrictive diet meant she couldn't eat school lunch.

[E.J. Beck]

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.

[Yuki Noguchi]

Beck swallowed her explanation to keep her cancer secret.

[E.J. Beck]

Once people know, they never look at you the same way.

[Yuki Noguchi]

Still, Beck felt lucky she didn't lose her hair. She could conceal her cancer.

[E.J. Beck]

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.

[Brendan Harley]

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.

[Yuki Noguchi]

Brendan Harley landed in the hospital in 1995. The night before his SAT exam, he was diagnosed with acute leukemia.

[Brendan Harley]

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.

[Yuki Noguchi]

And I was then gone, gone for a full year. This was before cell phones and social media, so Harley's isolation felt complete.

[Brendan Harley]

I was effectively living in a bubble at home. My middle brother would carry my homework into school and bring back the 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.

[Yuki Noguchi]

Bald and tired, Harley studied frantically from his hospital bed, clinging to schoolwork like it was a handhold on life.

[Brendan Harley]

And then I got out and went right to take my exams in June, and I couldn't remember any things I was studying because of all the chemotherapy.

[Yuki Noguchi]

But says Harley, returning home after feeling so vulnerable made him more determined to live.

[Brendan Harley]

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 remember. I can't forget.

[Yuki Noguchi]

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.

[Brendan Harley]

And how can I make it so that the next generation goes through something different?

[Yuki Noguchi]

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.

[E.J. Beck]

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.

[Yuki Noguchi]

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.

[Ailsa Chang]

This episode was produced by Claire Schneider and Brianna Scott. It was edited by Diane Weber and Jeanette Wood. Our executive producer is Sami Yenigun. It's consider this from npr. I'm Ailsa Chang.

[Marielle Segarra]

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 [e-mail].

[Alison Silberman]

Hi, it's Marielle Segarra from Life. Kid. There's a first time for everything, including giving to npr. Whether you're a brand new listener or a longtime fan, please join the community of NPR Network supporters today. Make your [e-mail] and thank you.

[Yuki Noguchi]

Want to hear this podcast without sponsor breaks? Amazon prime members can listen to Consider this sponsor free through Amazon Music. Or you can also support NPR's vital journalism and get consider this [e-mail] that's plus.NPR.org.