Getting Cancer as a Young Adult
15 yr old Danielle Steele from Lorain Ohio hadn’t been feeling well—she was sluggish, ached all over--and her mom Debra Weese took her in to see their pediatrician. "Well I knew that I wasn’t normal because I didn’t really eat much. I was like feeling pain all over my body and I was never really active, and I kind of like stopped making friends," says Steele. She withdrew from the world, adds Weese.
Her doctor sent her to a blood specialist who chalked it up to anemia—depression--pneumonia. "He kept telling her like oh you’re depressed, you’re too skinny, you don’t eat good enough. We messed around with him for two years and then finally I told her pediatrician, I said he’s not doing anything for us. There’s something going on with all the body aches and pain she was complaining about all the time," says Weese.
Steele was referred to University Hospitals Rainbow Babies and Children’s Hospital last April, where they quickly diagnosed her with stage 4 Hodgkin’s Lymphoma. It’d been invading her body for several years. "It was spread through her body. It was in her lungs, it was all in her bones, and everything," says Weese.
This kind of delay in diagnosis is just one of the many challenges young adults with cancer face. People just aren’t looking for it.
Pediatric oncologist Dr. John Letterio from Rainbow Babies who specializes in young adult cancer says there’s a bias, "Not just on the part of the patient, I mean if you are 20 the last thing you think you’re going to have is cancer so if you have pain and you have symptoms, it’s rare for someone in that age group to think they have cancer," he says.
It’s a challenge too for family doctors because cancer is primarily a disease of the aging. Only a small percent--some 80,000 new cases--crop up each year among 15 to 30 yr olds. But those young adults are often caught in a no-man’s land between pediatric and adult oncology.
Letterio says a patient once told him she was either in a waiting room where most of the magazines were Highlights or in a waiting room where all the magazines were AARP. He says this is an age group with unique needs and that a cancer diagnosis multiplies their stressors. "How does that affect things like your sexuality, your relationship with your peers, what will other people think of you--all those things create a very risky experience for a young adult who is facing a diagnosis like cancer," he says.
For Danielle Steele, cancer treatment sidelined her for a while. "I couldn’t go back to school and join senior committee or go to dances and I watched it on facebook. And it was hard," she says.
She worries about her ability to have kids later in life. Fertility preservation is a big concern for women and men in this age group because of the toxic effects of chemo. And survivors need to be closely monitored for years after treatment, because they’re at a greater risk of the disease coming back.
Letterio and others in the emerging field of AYA--or “adolescent and young adult” cancer--say more science is needed into how cancer and cancer treatments work in the bodies of young adults.
Survival rates for this age group haven’t budged in decades, whereas rates for kids and adults over 50 have seen more improvement. "There’s a recognition now that we have somehow failed this age group. We haven’t thought of them as being unique in any way. We have to be smarter. We have to develop drugs that are based on the biology of the disease that we see in this age group," he says.
Danielle Steele was declared cancer-free in November. She’s on track to graduate this summer, with honors, and wants to work for the FBI. "I’ve kind of experienced how short life is so it’s kind of put my whole life into perspective," she says.
Now, she’s getting back to the important stuff of the teen years. "I plan to get a tattoo soon," she says, with a wink to her mother.