At age 16, Jordan Little was pushing himself physically in swimming, soccer and track when his knee began to hurt. A local orthopedic surgeon performed an MRI to confirm his suspicion that Jordan had a torn meniscus. Instead, the test revealed abnormal spots on his bones that led to a very different diagnosis: The teenager had acute lymphoblastic leukemia.
“It was one of those moments that was almost like a dream,” he says. “It didn’t kick in until I had my first chemo treatment. Then it really hit me, watching that fluid drain into my body.”
Now three years into remission and a second-year osteopathic medical student at DMU, Little and his mother, Carina Little, were among the panelists at the University’s Katie Miller Young Adult Cancer Conference on May 1. Themed “Mental Health and Survivorship,” the conference was attended by more than 130 health care providers, students and care givers who explored the challenges of cancer among people ages 15 to 39.
More than 72,000 adolescents ages 15 to 19 and 60,000 people ages 20 to 39 are diagnosed with cancer each year in the United States. It’s the leading cause of death from disease among females in this age group and is second only to heart disease among males. Survival rates for cancer in young adults have not changed much in recent decades, unlike the improvements seen in many cancers in children and older adults. That’s because too often, symptoms or warning signs are ignored or dismissed due to the age of the patient.
“Cancer is never expected, but it’s particularly surprising and unexpected among young adults,” said keynote speaker Heather Soyer, Psy.D., a psychologist with Blank Children’s Psychological Services in Des Moines. “Cancer is not always detected as quickly as in other age groups.”
The conference, sponsored by DMU’s continuing medical education program, is named in memory of Katherine Miller, known as “Katie” by her DMU classmates, who was beloved for her kindness, determination and compassion. She succumbed to colon cancer in 2005 at age 26, just six months after being diagnosed. Her family generously supports the conference to honor Katie and other young adult cancer victims and survivors as well as to generate awareness, discussions and research on the disease.
“The conference focuses on young adults, because so little is known about cancer in that population. It’s a problem for people Katie’s age in detecting it or having anybody believe you even have a problem,” says her father, Richard Miller, who attended this year’s conference. “As much of a huge loss [her death] was to us and to the medical profession, she’s helping bring attention to that.”
While cancer is never easy, it can be a particularly complicated experience for young people as they transition to adulthood. Its unique challenges for teens and young adults include reduced independence, self/body image issues, social isolation, dating and sexual health problems, and interruptions in college and career aspirations.
For Jordan Little, having cancer rattled his identity. Before his diagnosis, he was driven in sports and school. “Deep down I had this need to perform, the need to be the best,” he says. “Then something came along that shook it all up. All those things that had built my identity up were gone.”
He turned to his family, his faith community and to others with cancer. “Having cancer was the lens through which I learned who I was and who I could be,” he says. “Cancer is why I chose a career in medicine. I saw what was missing and wanted to be that advocate for the whole person. Moments were rare when the doctors could sit and ask me, ‘What are you learning in school? How was your track meet?’ We need to understand the patient is a person outside the hospital.
“Being compassionate literally means to suffer with someone,” he adds. “I want to go on these journeys with my patients as a compassionate health care provider.”
Conference panelists were asked about the link between young adult cancer and burnout among health care providers who treat difficult cases.
“When I got my diagnosis, I didn’t want to feel anything, and that’s such a dangerous thing to do,” Little says. “That’s where burnout comes from. Let yourself feel something. If you need to cry, cry. If you need to laugh, laugh.”
He also suggested people change their mindset toward cancer.
“You often see people approach cancer as a battle. That has the connotation there will be a winner, and there will be a loser,” he says.
“Instead, I imagined my cancer as a dance, with all this pushing and pulling. When you look at it as a dance rather than a battle, there is no loser.”