Viva la Vida Teens with cancer learn life lessons early
By Kate Nolan To read the complete story, pick up a copy of this month’s Generation Health, available now.
 Heather Bongiolatti wishes she could run, but her joints don't work. She wishes she could go to college, and someday have a family; be a mother. The losses have stacked up since 2002, when Bongiolatti was diagnosed on her second day of high school with stage IV non-Hodgkin lymphoma. Bongiolatti is a founding member of a teen cancer group started in 2007 by the Wellness Community of Arizona. The organization supports cancer patients and their families and the teen group was an acknowledgement that cancer care for teenagers may require a different approach. Just how different isn't clear, since researchers tend to overlook the teenage cohort when it comes to launching cancer studies and drug trials. About 11,000 new teen cases of cancer are diagnosed each year in the United States. The number is low compared to, say, the 180,000 new breast cancer cases each year in all age groups, but it represents a sudden reversal for teens. Up to age 10, cancer is nearly nonexistent in children. For unknown reasons, cases becomes more evident in the teens. A third of all cancers diagnosed before age 20 occur after age 15, says Dr. Archie Bleyer, director of Aflac/CureSearch Adolescent and Young Adult Cancer Research and research director at St. Charles Regional Cancer Center in Bend, Ore. Bleyer, who spoke at a recent symposium the Wellness Community arranged to explore the unique challenges facing teens with cancer, pointed to an alarming drop in cancer survival rates between ages 15 to 25, a greater drop than at any other age (although the vast majority of teens with cancer do survive). The age group is also the segment of the population least likely to have medical insurance, and least likely to be diagnosed early. Ironically, we don't know whether late diagnosis affects survival rates—it hasn't been studied. "As cancer science improves, the least progress has been made in this population. It has the fewest clinical trials. This is the national challenge," says Bleyer, who is a founding member of Lance Armstrong's LiveStrong group. Bleyer proposes closing the gap by raising awareness of teenage cancer and advocating for more clinical trials.
THE NEW NORMAL For teenagers who have cancer, closing the gap also means making up for the loss of a key chapter in their lives. Just when the normal maturation process starts driving kids to experiment and assert their independence, the disease takes them captive. Whatever boundaries they may have considered testing are obscured by a phalanx of medical professionals and family on whom they've become dependent for survival. Their friends, baffled or afraid, often fade. The touchstones of adolescence get short shrift. Jobs, extra-curricular activities, dating and driving are postponed, the casualties of fatigue, chemo-brain or countless other cancer by-products. The teens are forced to cultivate other focuses.
THE CRUSADE Those who survive—and most do—seem forever changed and intent on helping those who follow them. Christian Urrea was diagnosed at 17 with sarcoma of the prostate. “It was scary. I thought it was a death sentence, an old man's diagnosis," Urrea, now 18, says. He underwent chemo, radiation and multiple surgeries, completing treatment in November. The world looks different to him now. “I found great peace with my church,” says Urrea. “It's created a spirituality for me. Cancer had to strike me to make me see the value of that. Now that I've gone through this horrible experience, I've learned so much. I try to visit teenagers with cancer as much as I can.” Once a budding zoologist, Urrea is now starting a foundation and teaming up with a radio station to help teenagers get through cancer. It's a path also trod by Branden Lombardi, whose foundation helped fund the Wellness Community's symposium on teen cancer. "When I was in chemo, I saw old people sitting around watching soap operas. They looked so unhappy. I brought my Nintendo and they started paying attention. So I brought games for them, and threw my energies into fundraising for patient amenities," he says. Now the Branden Lombardi Foundation is in its eleventh year. Heather Bongiolatti volunteers with the Wellness Community's teen group and now sees herself working with teens with cancer as a career choice, because it has so dominated her life. The cancer teens' desires to stay involved with cancer treatment dovetails with a comment by Marcia Soldavini, a social worker at Phoenix Children's Hospital. "Kids who have cancer want to help. They want the facts. But they want to help. They don't always know, though, how to advocate for themselves."
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