A pamphlet is not going to cut it.
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Viridiana Hernandez had her life all figured out—or so she thought. She was a semester away from graduating college with a degree in social work from California State University, Los Angeles. Upon graduation, the plan was to go to grad school, find a boyfriend and, hopefully, within a few years, get married and have kids. But in recent months, she’d started feeling inexplicably ill. Hernandez, 23, had gone to the doctor multiple times with no conclusive results. They thought she might be pregnant, they examined her for kidney stones, they suggested she might have acid reflux.
Then, the evening of her graduation celebration—which happened before she was officially done with her senior year—she felt so sick she ended up vomiting all over the silk shoes she’d bought for the occasion. The next day at urgent care, Hernandez says, the doctor downplayed her symptoms once again, but this time she demanded answers.
“I was like, ‘You need to figure out what’s wrong with me,’” Hernandez recalls. “‘I’ve been sick for a really long time.’”
The doctor agreed to send her for an ultrasound. When the results came back, they saw that she had a baseball-sized tumor on her uterus and diagnosed her with ovarian cancer. Hernandez, who had told her boss earlier that day that she’d be back before her lunch break was over, ended up staying in the hospital for two weeks.
Leonard Sender, co-director of the Chan Soon Shiong Institute for Medicine in California and an expert in young adult oncology, says over the years he’s heard “hundreds and hundreds” of stories like this, where young adults with cancer have been dismissed by their primary care doctors. Young adults with cancer are often diagnosed at later stages and mistreated, he adds.
In Acute Lymphoblastic Leukemia (ALL), for example, data shows that young adults who are treated using the pediatric chemotherapy protocol do better than those treated with the adult chemotherapy protocol, but many oncologists are still unaware of this. Another example is breast cancer which, Sender says, is such a different disease in young adults than it is in menopausal women that it’s misleading to call it by the same name.
“Sadly,” Sender says, “most of the time in this country, young adults will be treated for cancer improperly.”
This includes college campus health clinics which, Sender says, “do a horrible job” treating cancer patients. There’s typically no place for undergraduates to receive the treatment they need on campus; there’s little understanding among peers or school therapists about how to help with the trauma of being diagnosed; and student health insurance plans sometimes expire after six months if the student is unable to continue attending classes full time.
Jackie, who declined to give her last name, faced many of these issues when she was diagnosed with thyroid cancer as a junior at New York University. She, much like Hernandez, went to the student health center on campus a full year before her diagnosis after detecting suspicious lumps on her neck. They told her she had hypothyroidism, or an underactive thyroid, and that she could still study abroad, as planned, in Ghana that year.
By the time she returned from her travels, she was feeling ill. She went back to the student health center and, at that point, was diagnosed with cancer and scheduled for surgery. But the doctor at the student health center—where the services were covered by her student health insurance—didn’t tell her that her insurance wouldn’t cover the surgery she had to get at NYU’s medical center just a couple miles away. In fact, she would soon find out, none of her treatment at the school’s medical center would be covered by the insurance plan she was given as an undergraduate.
After her surgery, for example, Jackie had to go through a special type of chemotherapy that involves swallowing radioactive iodine. Typically, patients are quarantined in a hospital during this time as all their bodily secretions—their sweat, urine, saliva—become radioactive and, thus, toxic to anyone who touches it. But her student health insurance didn’t cover the quarantine, so during her winter break, she locked herself in her dorm room for two weeks with little support except for a friend who, in the last few days, sat in the hall talking to her through the door.
Matthew Zachary founded Stupid Cancer to help patients like Jackie address what he says are the extraordinary—and still largely misunderstood—challenges young adults with cancer face. It’s important to understand, he says, that cancer among young adults is not just biologically different, but also psychologically different.
Young adults don’t want a pamphlet, he says, they want to connect in ways that feel relevant to them. This inspired him to recently launch a social network app—which he’s calling “The WhatsApp for Cancer”—to help teenagers and college students with cancer combat one of the primary challenges that comes with diagnosis: social isolation. Other common challenges include professional or educational derailment, financial insecurity, infertility risks, a loss of independence, body image issues, and difficulty talking to friends and partners about the side effects of treatment.
“In my twenties, I’m genetically, anthropologically instructed to be invincible. A sense of mortality doesn’t even kick in until you’re like, 26,” says Zachary, who went through treatment for brain cancer while in college. “Cancer just becomes a part of your life and you have to figure out what that means to you.”
Hernandez and Jackie both describe how their lives—and their perspectives on life—dramatically shifted after their diagnoses. During treatment, they both experienced what’s sometimes called “chemo-fog,” a general exhaustion and cloudiness that makes completing basic tasks difficult. Hernandez recalls being so tired she’d go to Target and be too weak to push her own shopping cart, or she’d forget where she was going while she was driving. Jackie went from being a triathlete who got up with her roommate every day at 5 AM to train, to someone who spent many nights in bed just watching Netflix.
“It’s really hard to tell your roommates, your friends—at six o’clock on a Saturday night—that I just want to be in bed,” Jackie says.
She and Hernandez agree that despite all these challenges, one of the hardest parts of cancer was life after cancer. In many ways, they’re grateful for the lessons they learned during treatment. They find themselves empathizing with others in ways they never could have before. Sender says this is fairly typical and that young adults with cancer ultimately tend to do “remarkably well.” But Hernandez and Jackie also emphasize that the memories of cancer never go away. Their friends and teachers, however, didn’t understand that and just expected them to “go back to normal” once they were in remission.
“To me that is the biggest messaging gap with the general public,” Zachary says. “Being disease free—having cancer no longer in your body—doesn’t free you in any way. Everyone wants a cure, but I think that’s a fabricated word.”
Zachary, Jackie, and Hernandez try to close this messaging gap by sharing their stories of personal transformation. They’ve become active members in the burgeoning young adult cancer community. Together, they hike, they kayak, they surf, they convene at conferences, and they reassure one another that they’ll never be the same—but that’s not necessarily a bad thing.
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