Teens battling cancer have unique challenges

HACKENSACK, N.J. — Tim Malone was too busy balancing schoolwork, playing snare drum in his high school marching band and making sure his hair was just right to notice he dropped 30 pounds. He also wasn't fazed that his skin had been itchy for six months and he wasn't recovering from a sinus infection.

But the Mahwah teen soon learned that being itchy is a symptom of Hodgkin's lymphoma, and his pale complexion was not just a result of winter in New Jersey.

He was 16 and seriously ill with cancer.

“It was the last thing on my mind — you never think you're going to get cancer,” he said.

Tim is one of the 125 teens between 15 and 19 who are diagnosed with cancer each year in New Jersey. While these cancers are still uncommon, the rate among teens has been steadily rising 2 percent a year for the last 25 years. Equally disturbing, survival rates have not improved.

The lack of progress has spawned new thinking by physicians and researchers, prompting the formation of a new medical specialty, called AYA, to care for adolescents and young adults. Treatment for these patients must combine specialized emotional as well as medical care, according to experts.

“With this group of patients, we must also offer psychological services,” said Dr. Michael Harris, director of Tomorrows Children's Institute at Hackensack University Medical Center. “They are entering a world they never knew about and they need to develop coping strategies that will help them navigate this world.”

Researchers believe a number of conditions have contributed to problems treating young cancer patients. There is a poor understanding of the biology and causes of cancer in this population and few clinical trials. Diagnosis is often delayed in this population.

But with the emphasis on this age group, doctors at the John Theurer Cancer Center at Hackensack said they have had some success with AYA leukemia patients — by giving these patients the regimens they use for younger children rather than those they use on adults.

“We're seeing about 90 percent of acute leukemia patients cured,” Harris said. “And we found we can cut down on the amount of radiation that can cause sterility, infertility or secondary cancers in patients with Hodgkins.

“Diseases behave differently in people of various ages and generally, children are stronger,” Harris said. “With leukemia, for example, we found that our results are far better when most of these young adults are treated with a regimen used for pediatrics. We are able to use a more aggressive chemotherapy and we allow children to have much lower blood counts than we do for adults.”

Researchers are struggling to find out why the number of diseases most prevalent in these patients — lymphomas, sarcomas, acute leukemia, bone tumors, soft-tissue and nervous-system cancers — has been slowly but steadily rising.

Nearly 72,000 AYAs nationwide develop some type of cancer annually, according to the National Cancer Institute, which considers this group to include 15- to 39-year-olds.

“Now that more are being treated with pediatric protocols, I believe we'll see some improvement,” Harris said.

Teens have also suffered from a lack of emotional support.

Jillian Hill, a 13-year-old from Lodi, N.J., was dejected when a classmate said he didn't want to be near her because he thought her brain tumor was contagious.

Treatment for leukemia has left 15-year-old Shaheem Crooks so weak at times he can barely get off the couch. Though he tries to keep a positive outlook, the Teaneck, N.J., resident can't shake the image of his mother fainting to the floor after hearing his diagnosis.

As if the teen years don't come with enough angst about looks and fitting in, Aesha Vyas has had to deal with the damage her cancer did to her jaw.

“Kids will point and ask, 'What happened to your face?' and I tell them I had cancer,” said Aesha, a soft-spoken teen who is going through reconstructive surgery. “They usually don't say anything after that. But it bothers me.”

Harris has long been concerned about how these teen patients fare outside of treatment.

“Getting cancer at that age really puts them in a position where their independence can be lost — and treatment can alter the way they look and they have to face that,” he said.

“Just as they are fighting for their independence, in one fell swoop, a disease sets them back in life in spades,” Harris said. “There's a whole new set of individuals telling them what to do and setting limits for them.”

Hospitals have begun trying to help teens deal with the emotional trauma of cancer by hiring child-life specialists to engage these patients in activities that help them deal with their fears, denial and anger. Creative art sessions, dance movement or music therapy are often offered.

“You need these groups because no one can really understand what it's like unless you've been through it,” Tim said. “Some people look at you differently and only identify you as the kid who had cancer.”

Though many of these teenagers are barely past puberty, they quickly grasp the gravity of their disease and consider their own mortality.

“I thought there was a chance of dying and I was really afraid of leaving my family and friends behind,” said Tim, who was diagnosed in 2010.

“So I just made sure I did everything I wanted to do, like marching in the Memorial Day parade even though my white blood count was down. I'm a snare drummer and I just collapsed on the grass when it was over but I made it through.”

Tim definitely had his bad days, like when he lost his hair from chemotherapy.

“I was a bit of a narcissist and my hair had to be just right,” said Tim, now 18. “But after I lost it I drew a shamrock on my bald head. If you're going to lose your hair, embrace it and have fun.”

Getting so sick inexplicably matures teenagers far beyond their age and yet in some ways stunts their emotional and social growth.

“Going through this type of experience gives them maturity and a depth of understanding of humanity,” said Ellen Goldring, the section chief of the Child Life Services at Hackensack.

“On the other hand, sometimes these kids stop taking their medications or don't listen to doctors' orders because they're teenagers and only thinking of today.”

Sick teens also deal with being teased or losing their friends because of their illness.

“Some of my friends from when we were in kindergarten said they didn't want to be friends anymore,” Jillian said. “You feel bad, but what are you going to do?”

Continuing social and emotional development while undergoing treatment is one of the biggest challenges teenagers face, Hartley said.

“You have to remember they're teenagers and they still have the same needs they always had,” Hartley said. “They might need their parents to help them bathe if they're weak from treatment, but at the same time they want to learn how to drive.”

But this terrible journey can take these patients on paths they never considered.

Aesha now wants to become a doctor.

“I want to be a pediatric oncologist so I can do the same for other kids that they did for me,” she said.

Tim, cancer-free for 11/2 years after undergoing months of chemotherapy and radiation, is trying to decide which university he wants to attend next fall.

Cancer has also altered his career path. When he was young, he wanted to be a doctor. He's had enough of physicians and hospitals and now wants to go into music education.

“When you're going through this, you can't get into the ‘Why me?' thinking,” Tim said. “You just have to believe there was a greater purpose for it all, have faith and keep going.”