Some child cancer survivors face long-term physical, emotional challenges

By Naseem S. Miller Orlando Sentinel

When Ben Watson, 14, had trouble breathing, his doctors suspected he had pneumonia and put him on a couple of rounds of antibiotics.

One day, his pain got so bad that his parents took him to the emergency room, where his diagnosis changed: it was non-Hodgkin lymphoma. His mother collapsed on the floor.

"It was like a ton of bricks hit you," said Ben's dad, Barry Watson of Orlando.

Now 19, Watson is cancer-free but still has routine medical checkups and sees several specialists.

He's among the growing number of young cancer survivors, thanks to advancements in therapies and treatments. There are nearly 400,000 adult survivors of childhood cancer in the United States, and that number is only expected to increase.

While many young cancer survivors go on to live healthy, productive lives, others are left with physical and emotional side effects that linger years after the cancer is gone.

Long-term care of these survivors is still lacking, experts say, especially when it comes to addressing their psychological and emotional needs.

"We don't do enough to prepare people to survive," said Lori Wiener, co-director of the behavioral health core in the pediatric oncology branch of National Cancer Institute.

"Your friends may be different, you whole social network may have moved on. … We need to do more before treatment and to be able to prepare people for life after cancer," Wiener said.

Whitney Goldstein, 18, was diagnosed with a rare T-cell lymphoma when she was 8 years old. She went through two-and-a-half years of chemotherapy and radiation before she was declared cancer-free.

She says that cancer has made her more appreciative of things.

"You move on from obstacles a little easier than others do," she said on a recent afternoon at her parents' Lake Mary home. "Even in my social circles now, I'm almost on a different page. I'm more mature and look to the future and I see things differently when I interact with people," said Goldstein, who will soon start UCF to study nursing and is still involved with many events and activities of her pediatric hospital, Arnold Palmer Hospital for Children.

But she's starting to notice the effects of her treatments.

"Things like not being able to process things as well as other kids can, and having issues with my physical activity," she said. "Even with driving, distance and depth perception is becoming an issue. That's something that's affected me all these years later, and I don't think it's something people realize."

Goldstein has also been seeing a therapist since she was diagnosed. After spending most of the third grade at home with her parents, she had separation anxiety, she said. "[Therapy] has helped a lot with that, and it's given me someone who's objective to talk to."

Unlike adults, adolescents and young adults are less likely to join in-person support groups. Some join online groups, but many would rather move on and leave the cancer chapter behind. They start a new phase of their lives, at the same time knowingly or unknowingly carrying some of the burden of their childhood cancer with them.

"While it's a generation of information-seekers and technology-users, I don't know what's the level of awareness for somebody who had cancer when they were 10 years old and now they're 25, realizing that some of the anxiety and depression that they may be feeling at their age may be attributed to that cancer experience," said Gwendolyn P. Quinn of Moffitt Cancer Center in Tampa.

Experts say also that neuropsychological assessment for young cancer survivors — evaluating memory, attention, emotional function and motor skills — is sorely lacking.

"What we really strive to do is to train all types of providers … why [the survivors'] medical history can be important for their psychosocial history," said Quinn. "But we have many psychologists tell us, particularly those on college campuses, that they just don't have the training and the knowledge about what survivors of pediatric cancers need."

Many insurance, public or private, don't cover hours-long neuropsychological testing, experts say.

"And from the philanthropy end, people would rather give $100 to help a child buy a medicine, but if you ask for a few hundred dollars for psychological testing, they probably won't," said Michael Westerveld, director of the pediatric neuropsychology department at Florida Hospital for Children. "Because they don't understand the scope of the problem."

The lack of resources to deal with problems years after children are declared cancer-free could be an even bigger issue in years to come.

"Everyone is worried about the silver tsunami of our baby boomers and what they're going to be experiencing, but we have that, plus the second wave is all these adult survivors of childhood cancer in larger and larger numbers," said Rebecca Kirch, director of quality of life and survivorship at the American Cancer Society.

Ben Watson, who survived non-Hodgkin lymphoma, doesn't let thoughts of cancer take over. He now attends UCF and has a foundation, the Benji Watson Cancer Foundation, to provide financial help to families who have kids with cancer.

"It's always something that's on your mind, but it's not something that you think about constantly. You can't live your life in fear of what might happen," he said.

His parents still get stressed when it's time for Ben to go for a checkup.

"I really try to watch him and not sweat the small stuff," said his dad, Barry. "You want something to worry about? Go up to the hospital and watch 30 kids fight cancer."

nmiller@tribune.com or 407-420-5158.