Your high school mates are picking out prom clothes; you’re stuck in a patient gown. They’re choosing colleges; you’re meeting with your medical team to decide on a chemo regimen.
Such is life for teens with cancer, including the charismatic protagonists of John Green’s wildly popular young adult novel, The Fault in Our Stars.
Billed as the “Love Story” for the Facebook generation, the book made its movie debut June 6 with Shailene Woodley and Ansel Elgort playing Hazel and Augustus, the star-crossed patients who meet at a Cancer Kid Support Group and swiftly fall in love.
The bittersweet (and bitingly funny) tale – which tackles everything from metastasis and mortality to steroid-puffed chipmunk cheeks and the “cancer perks” young patients often receive – has sold millions of copies and may just make osteosarcoma a household word.
But does it come close to capturing what it’s really like for teens living with cancer?
Allison Cisz was diagnosed with brain cancer during her senior year of high school after an MRI revealed an astrocytoma on her brain stem (the tumor was pressing against her nausea pathway, causing her to “throw up every single day for about a year”). Along with a delayed diagnosis and an exhausting battery of tests, Cisz has gone through brain surgery, radiation and is currently five months into a year-long regimen of chemotherapy.
The 20-year-old, now majoring in business at Central Connecticut State University, read TFIOS (as it’s known by Green’s fans) in a single day and despite what some survivors might find to be a less than happy ending, loved the book.
“I thought it was phenomenal,” she said. “Especially for the author not having cancer. He was spot on with how you’re feeling.”
Green was particularly good at capturing the isolation many teen cancer patients feel, she said.
“I find it very, very hard to find people who can relate,” said Cisz, who’s never attended an in-person support group but has connected with a few survivors via the Facebook page, Cancer Fighters. “It’s difficult to talk about with my friends. They don’t know what you’re going through, how you’re feeling, the emotions you’re having. Cancer is one of the hardest things you have to go through and nobody else in my high school had ever had it.”
Like Hazel – and countless other cancer survivors – Cisz has to contend with treatment side effects, in particular neuropathy, a chemo-related condition that causes pain, numbness and tingling in her hands and feet.
When she tries to explain this to her peers, though, they’re confused.
“I’ll say I’m having trouble walking and people are like, ‘Why?’” she said. “They don’t understand how the drugs affect you or what they’re doing. You always hear about cancer, but people don’t know what it’s doing to your body. I think people need more of an eye opener to childhood cancers. They need more of an education about it.”
Green’s book may help with that education. Its narrator, 16-year-old Hazel, has stage 4 thyroid cancer which has metastasized to her lungs, forcing her to use an oxygen tank because, as she puts it, “her lungs suck at being lungs.” Hazel’s love interest, Augustus, is a 17-year-old former high school basketball star who has lost a leg to osteosarcoma (bone cancer) and now wears a prosthetic limb.
Both characters use dark humor and other coping mechanisms – reading, writing, video games and the occasional bit of egg-throwing – to deal with the swath the disease has cut through their lives. They also spend a good deal of time thinking – and speculating – about their own impending mortality.
Green, who based his character Hazel on a terminal thyroid cancer patient he met while working as a student chaplain at a children’s hospital, told USA Today that he was pleased that Fox2000 Pictures kept its commitment “not to water down the film” and “show people with disabilities and illnesses as richly complex people with desires and emotions like anyone else.”
In the movie, Augustus still has a prosthetic leg, just like in the book,and Hazel, her ubiquitous oxygen tank. Isaac, their friend with retinoblastoma, loses his eyes just as Green wrote. And as in the book – and real life – not everybody makes it.
Seattle survivor Milton Wright III hasn’t read the book but the soft-spoken 20-year-old definitely knows the teen cancer terrain.
In and out of hospitals and chemo infusion rooms since he was first diagnosed with acute lymphoblastic leukemia at the age of 8, Wright underwent treatment during grade school, high school and again this year after doctors at Seattle Children’s discovered his leukemia had returned for a third time. Thanks to immunotherapy and a bone marrow transplant, Wright is now cancer-free, but his life has profoundly changed.
Like Cisz and Hazel, he has difficulty finding people his age who “get” the cancer experience or understand the side effects that can come with treatment (along with neuropathy, Wright suffers from cardiomyopathy). And like Augustus, he’s had to set aside athletic pursuits like football and boxing.
“Life is pretty confusing,” said Wright, who at just five months out from a bone marrow transplant is already trying to get back in shape so he can return to modeling. “Every time I’m on a path, something comes up.”
Wright said most of the cancer buddies he made after his diagnosis – and first relapse – have since passed away. But he’s recently made a few new connections via Facebook.
“I friended a girl on Facebook who lives in the Tri-Cities (in south central Washington state) and had never really met anybody her age with cancer,” he said. “And we’re good friends now. We joke a lot and make fun of each other and the things we’re going through – relationships, problems with friends or family or even the health stuff.”
That camaraderie is crucial, said pediatric oncologist and Fred Hutch researcher Dr. Colleen Delaney, who is currently reading TFIOS at the insistence of her tween-age daughter.
“Teens get so set apart from their peers,” she said. “They’re experiencing something they can’t explain to them. And it’s hard to take that life back even if they’re cured. How do you go back to being a normal teenager when you’ve faced death? That’s why I think support groups are helpful, whether it’s in person or through social media.”
Also crucial, said Delaney, is realizing teens with cancer have to traverse a very different emotional path than, say, young children – or even adults -- with cancer.
“When you’re 4 and diagnosed with cancer, your parents realize what you’re going to miss, but you don’t necessarily,” she said. “But teens are facing life-threatening events at a point in their life when they really do realize what they’d be missing. I still have very distinct memories of a teenager I took care of a few years back. She was dying and realized it and told me, ‘I’m not going to go to my senior prom. I’ve never even had sex.’ She understood what she was going to miss out on.”
According to the American Society of Clinical Oncology (ASCO), cancer in children and teens is uncommon, accounting for less than 1 percent of all cancer cases in the U.S. About 10,450 children younger than 15 and 5,330 teens aged 15 to 19 will be diagnosed this year.
Unfortunately, many of those teens will be caught in what Delaney calls a “no man’s land” – too young for hospitals that cater to adults and too old for hospitals that specialize in pediatrics. Cisz said she’s “probably the oldest patient” at the children’s hospital where she receives chemo; Wright – and other young cancer patients – have also found themselves sharing rooms with 3 or 4 year olds.
That age gap is one reason many cancer treatment centers are designing programs and facilities specifically for adolescent and young adult (AYA) patients.
Last spring, Seattle Children’s opened an entire unit dedicated to AYA patients and their medical, physical and psychosocial needs. The 16-bed unit occupies the top floor of the hospital’s new Building Hope facility and features a groundbreaking new AYA oncology program as well as a communal room for Wii tournaments and pizza and movie nights; a gym for patients and families; a rooftop terrace; large patient rooms with personal refrigerators, flat-screen TVs and beds for parents and a host of innovative creative arts programs.
Raging hormones, budding sexuality, a desire to both blend in and stand out, not to mention angst, attitude and heightened self-consciousness – the teen cancer patient population has to balance it all, all while undergoing treatment that can take their hair, alter their bodies and turn the simple act of getting a slightly rebellious tattoo or piercing into a life-threatening event.
“Teens need people they can relate to,” said Delaney. “They might have cancer but they’re also in the middle of hormonal changes and trying to figure out relationships. Plus they’re facing issues like getting a job, going on to college and trying to become a productive member of society.”
Even the treatment needs of teens are unique, she said, pointing to studies that show that for certain types of cancer, teens and young adults do better when they’re treated on pediatric protocols than adult protocols.
While TFIOS gets many things right, some oncologists have criticized it as being unrealistic with regard to both occurrences and outcomes for pediatric cancers, painting too bleak of a picture. According to ASCO, the overall five-year survival rate for children and teens with cancer is 83 percent.
Delaney said some of the cancers portrayed in the book are rare in teen populations but based on what she’s read so far, hasn’t found that problematic.
“That’s not what the book is about,” she said. “The bigger issue is dealing with death as a teenager and what that means.”
Will the wild popularity of “The Fault in Our Stars” help to educate mainstream America about the challenges of teen cancer?
“I hope so,” she said. “But it would also be nice if some of the actors would come and visit patients at pediatric hospitals.”
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has also written extensively about health issues for nbcnews.com, TODAY.com, CNN.com, MSN.com, Columns and several other publications. She also writes the breast cancer blog, doublewhammied.com.Reach her at firstname.lastname@example.org.
Resources for teens and young adults with cancer
Looking to connect with other teens (or young adults) with cancer? Check out the following:
StupidCancer.org: This nonprofit primarily serves the young adult cancer patient aged 18 to 39, but younger teens are welcome to participate in its many programs, including meet-ups, the OMG! Cancer Summit for Young Adults and the weekly Stupid Cancer Show. StupidCancer is also currently raising funds to launch Instapeer, a new free mobile app designed to provide anonymous peer-to-peer support for teens and young adults with cancer.
ThriveThroughCancer.org: This nonprofit, founded by a Pacific Northwest cancer survivor, is designed to help young adults fight cancer, find hope and thrive through events like its annual Chemo-Con and by distributing “Hope Totes,” bags filled with comforting items that appeal to young adults.
Seattle Cancer Care Alliance: Check out their collection of resources for teens with cancer.