Young adults traditionally aren’t the face of cancer. But people between the ages of 15 and 39 are diagnosed with cancer at a rate six times higher than children, according to the National Cancer Institute.
In the third part of our three-part series on cancer, we talk with some young people who are stepping up to be a voice for a group of cancer patients that sometimes go overlooked.
“I was in the shower when I found it,” Brittany Beitel, who lives in Hilliard, recalls. It was last April when Beitel found a lump in her breast. “I didn’t really think anything of it.”
And why would she? Beitel was 26 years old with no family history of breast cancer. But at the insistence of friends, she saw her gynecologist who tried to reassure her it was probably nothing.
We’ll come back to Beitel’s story in a bit. But first, a surprising fact: Cancer survival rates have made great strides since the early ‘90s, except for young adults.
“It’s one of the disturbing pieces of information in cancer,” said Dr. Joseph Flynn, human pathology director, Ohio State University James Cancer Hospital.
Flynn said 25- to 35-year-olds have the worst cancer mortality rates of any age group.
“Actually, survival’s worse than what it was in the past,” he noted.
Like all age groups, survival rates vary depending on the cancer type, but take ALL, a type of leukemia, for instance. Fifteen- to 39-year-olds diagnosed with this cancer have a 49 percent 5-year survival rate. That compares to an 82 percent survival rate in younger children, according to a 2011 report by the Journal of Adolescent and Young Adult Oncology.
Decades ago, researchers separated pediatric cancer care from adult treatment. But only in recent years has the medical community personalized care for 15- to 39-year-olds, or the group doctors call AYA, adolescents and young adults.
“We really did a pretty poor job of recognizing that until recently,” said Dr. Nick Yeager, Nationwide Children’s oncologist.
Yeager said there are numerous reasons for this age group’s lower survival rates.
“Delayed diagnosis is one,” he said.
OSU’s Dr. Flynn noted personality also plays a role.
“That age group, they’re indestructible,” Flynn said. “So those are typically patients who are diagnosed later because they would be avoiding going to the doctor because I’m fine, I’m young and healthy, whereas an older person may be more apt to go to the doctor.”
And young people often lack health insurance, which keeps them from seeing a doctor regularly.
But cancer experts say the young adult gap goes beyond late diagnosis.
Treating patients in their late teens and early 20’s and 30’s can be difficult. Some cancer patients fair better with pediatric doses, while others have success with adult regimens.
But even then, Yeager said young adults often don’t respond to treatment as well as older adults or children with the same disease.
“So we question whether something biologically might be a little bit different from other diseases,” Yeager said.
For instance, Dr. Flynn said, they see different types of lymphoma in young people. A Breast cancer in young women is often different and sometimes more aggressive.
Back in Hilliard, Brittany Beitel said despite all signs pointing to nothing serious with the lump in her breast, her gynecologist ordered an ultrasound anyway.
“They did a biopsy that day,” Beitel said.
Two days later, Beitel received a phone call from her doctor.
“She was just, like, kind of beating around the bush. And I knew it was not good, obviously. And she was, like, ‘I’m sorry. It came back malignant.’”
Beitel had Stage IIB breast cancer. The disease had spread to one of her lymph nodes.
Two weeks later, Beitel had her left breast removed. Seventh months later, she finished up all her chemotherapy and radiation treatments. And so far, so good.
Since her diagnosis, Beitel has taken up the cause for a cure. She urges women, particularly young women, to do monthly self-exams. She has more than 7,200 followers on her Facebook blog, Beitel Strong. And Beitel pulls no punches, posting poignant pictures of her mastectomy scar and radiation burns.
“I was just trying to be an advocate for other people,” Beitel said. “If you find something, go get it checked out…Half the doctors probably think it’s nothing given your age, no family history…You have to be your own advocate.”
Matthew Zachary runs a charity called Stupid Cancer. It supports young adult cancer advocacy and research.
Back in 1996, Zachary went to the doctor after he lost the ability to play piano with his left hand. It took doctors months to correctly diagnose him.
Zachary said when he underwent treatment, cancer programs were tailored to patients who were, as he puts it, 6 or 60. But he said that’s changing, and so is the way doctors approach the unique considerations young cancer patients face such as fertility, education and career.
“From a service care gap perspective, yes, hospitals, clinics, patient support communities were not equipped or didn’t have the awareness to have age-appropriate care. But now they do, which is exciting,” Zachary said.
And researchers are opening up more clinical trials to young adults. They are looking for better ways to treat their cancers. But doctors we talked to say it likely will be years before there is significant improvement in young-adult cancer-survival rates.