The Unique Hell of Getting Cancer as a Young Adult

The Unique Hell of Getting Cancer as a Young Adult

When I got diagnosed with Stage 3b Hodgkin Lymphoma at age 32, it was almost impossible to process. Without a family history or lifestyle risk factors that put cancer on my radar, I stared at the emergency room doctor in utter disbelief when he said the CT scan of my swollen lymph node showed what appeared to be cancer—and lots of it. A few days away from a bucket list trip to Japan, I’d only gone to the emergency room because the antibiotics CityMD prescribed to me when I was sick weren’t working.I didn’t want to be sick in a foreign country. So when the doctor told me of my diagnosis, the  only question I could conjure was: “So Tokyo is a no-go?”

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Around the world, cancer rates in people under 50 are surging, with a recent study in BMJ Oncology showing that new cases for young adults have risen 79% overall over the past three decades. In the U.S. alone, new cancer diagnoses in people under 50 hit 3.26 million, which is a 79% rise since 1990, with the most common types being breast, windpipe, lung, bowel, and stomach. A new feature in the Wall Street Journal highlights the mad dash among doctors and researchers to determine what’s causing this troubling rise. Strangely, overall cancer rates in the U.S. have dropped over the past three decades, while young people—particularly with colorectal cancers—are increasingly diagnosed at late stages. “We need to make it easier for adolescents and young adults to participate in clinical trials to improve outcomes and study the factors contributing to earlier onset cancers so we can develop new cures,” says Julia Glade Bender, MD, co-lead of the Stuart Center for Adolescent and Young Adult (AYA) Cancers at Memorial Sloan Kettering in New York City (where I am currently a patient.)

Doctors suspect that lifestyle factors and environmental elements, from microplastics to ultra-processed foods, could be to blame. But many adults in their 20s and 30s, such as myself, were otherwise healthy before their diagnoses. It felt like all those years of forcing myself to run, eat high-fiber foods, and choke down kombucha were for nothing. 

Cancer is hell at any age, but the challenges facing young adults are especially steep, as the disease disrupts a formative period for building a career, family, and even healthy self-esteem, from body image to gender identity. It’s critical that our approach to treating and supporting these patients reflects the severity of this disruption. In recent years, a growing number of cancer hospitals have developed young adult-specific programming like support groups, information sessions on dating and sexual health, and even mobile apps to help counter social alienation. But there is still a long way to go.

Read more: Why I Stopped Being A “Good” Cancer Patient

Shockingly enough, canceling my trip to Japan was the least of my worries. Beyond the excruciating physical side effects of high-dose chemotherapy and a number of life-threatening complications, cancer pulverized my self-esteem into nothingness, as I watched peers get married and promoted from my bed. Thankfully, after switching to a new hospital, I found support groups that connected me with a community of peers who got it, as well as social workers who work exclusively with young adults and thus recognized many of my biggest challenges, like social isolation, financial strain, the dating nightmare, and hating my bald head.

Perhaps the biggest reason I resented cancer was for disrupting a milestone I’d worked for my whole life: a book launch. (My diagnosis came two months before my first book was published.) Young adulthood is meant to be littered with these kinds of professional and personal benchmarks, many of which are hard enough to accomplish without tumors; dating, for instance, is impossible for me even as a healthy person. Now I have to re-enter the pool older, weaker, and more traumatized? 

“Young adult patients may be trying to assert independence from parents, establish a career or intimate relationship, or even be parents themselves,” says Bender. “Most will be naïve to the medical system or a serious health condition.” And so they require flexible, creative clinicians who can help navigate them “to and through the best available therapy and back to their lives, inevitably ‘changed’ but intact.” Not only do these patients need specialized psychosocial support, but research initiatives should prioritize developing treatments that minimize long-term toxicities.

Given that many young patients haven’t yet built financial stability and are often in some form of debt, organizations like Young Adults Survivors United (YASU) have emerged to support young adult survivors and patients through the financial overwhelm. Stephanie Samolovitch, MSW and founder of YASU, says that there’s still an enormous need for resources supporting young adult cancer patients and survivors.

“Cancer causes a young adult to be dependent again, whether it’s moving back in with parents, getting rides to appointments, or asking for financial help,” says Samolovitch, who was diagnosed with leukemia in 2005, two weeks before her 20th birthday. “Young adults never expect to apply for Medicaid or Social Security Disability during our twenties or thirties, yet cancer doesn’t give us a choice sometimes. That causes stress, shame, depression, and anxiety when trying to navigate the healthcare system.”

Read more: How to Create an Action Plan After a Cancer Diagnosis

When Ana Calderone, a 33-year-old magazine editor, was diagnosed with stage 2 breast cancer at 30, the most challenging part of getting diagnosed so young was “everything.”

“I felt like it set my whole life back, which sounds stupid because I was literally fighting for my life,” she says. “Who cares if I had to delay my wedding a year because I was still getting radiation treatment? But it was really hard at the time. Everything was delayed, and still is.”

During chemo, Calderone’s doctors gave her a shot that she still receives to try and preserve her ovaries, and she’s been able to try IVF twice. She says she had to proactively advocate for those things with her care team. While Calderone is currently cancer free, she still must take medication that has further delayed her plans to build a family. “I’m fairly confident I’d have a child by now if I didn’t get cancer. That’s been the most devastating part,” she says. “My oncologist would consider letting me get pregnant in two more years, which would be 4.5 years post-diagnosis, and even that is still a risk.”

For 32-year-old Megan Koehler, whose son was one and a half when she was diagnosed with Hodgkin Lymphoma, the hardest part “was knowing the world continued on while I spent days in bed,” she says. “My coworkers still worked on projects I was supposed to be part of, and the worst was knowing my son was growing up, learning to speak sentences, and just becoming a toddler without me – or so it felt that way.” 

She remembers crying for most of his second birthday because she was in bed post chemo, feeling devastated that she didn’t have the energy to spend the day with him. During a 50-plus day hospital stay caused by an adverse reaction to a chemotherapy drug, she would Facetime him and cry when he spoke in sentences, because he wasn’t doing that before she was admitted. While she’s grateful for the support she had from her husband and mother, she felt alienated. “I spoke to a few people my age via social media, but no one in person. My center mostly catered to the older generations, so it was somewhat isolating. I did have a great relationship with a few of the infusion nurses who were around my age.”

While oncologists may be rightly focused on saving patients’ lives, there must be more consideration for quality of life during and after treatment – both physical and mental. “More questions need to be asked about their relationships, fertility options, and any mental health concerns or symptoms,” says Samolovitch. From a research perspective, initiatives must expand to pinpoint not only the reason for the rise of cancer in young adults, but find ways to screen and diagnose earlier.

Towards the beginning of my treatment, before I switched hospitals, my oncologist seemed to treat my concerns about self-esteem and hair loss as trivial compared to the real work of saving my life. At my weakest, I had to advocate repeatedly to get accurate information on cold capping, a process of scalp cooling that can preserve most of your hair during chemotherapy, and I had to beg again and again for a social worker to reach out to me, which took weeks. 

It’s a beautiful thing that more young adults with cancer are surviving their illnesses. But that means they’ll have decades of life ahead of them. Providers must do a better job supporting young adult patients through all the collateral damage that comes with cancer and its treatment.  

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