Effects of Childhood Cancer Can Linger Long After Disease Is Gone

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Jan. 17, 2001 -- Twenty-five-year-old Matthew McKee might have dreamed at one time of playing for a professional sports team. But 10 years ago, when he was an athletic teenager playing four high school sports, that dream was cut short when he was diagnosed with Hodgkin's disease.

"I grew up very athletic and sports-minded," McKee says. "After the diagnosis was made, I tried to keep up with my sports, but I had to give it up. The chemotherapy wiped me out, and I'd come home vomiting."

A year later, the Hodgkin's reappeared and McKee, his doctors, and parents decided the best course of treatment was a bone marrow transplant. He tells WebMD that he tends to "block out" a lot of what happened during the treatment and his recovery. But he remembers it as a lonely time. He was in isolation at the hospital for 30 days and for almost half of that only fully suited medical personnel could be in the room. After that, visitors still had to be garbed in medical scrubs and masks.


Returning home didn't lift many of the restrictions. He was tutored for a semester and could only leave the house for doctors' appointments and he had to wear a surgical mask for those ventures.

"I was so susceptible to infection we were even told I couldn't eat anything that anyone from outside the family brought for us," he recalls.

Now coordinator of season ticket operations for the Dallas Stars hockey team and the Texas Rangers baseball team, McKee is married, fully recovered, and looks forward to visits with his doctors at Cook Children's Medical Center in Fort Worth.

He has no fears of returning disease or any physical side effects from the traumatic illness and treatment, other than some arthritis-like changes in a hip that might be linked to chemotherapy. "I'm confident that I'm healthy," McKee says. "The first couple of years when I'd go back for my checkups, it was in the back of my mind that they might find something. But now I don't think about it." Not all childhood cancer survivors share McKee's confident attitude and outlook, however.


According to a study recently published in the Journal of Clinical Oncology, one-fifth of the 78 childhood cancer survivors that were surveyed have symptoms consistent with posttraumatic stress disorder, a condition often associated with postwar phenomena that includes persistently re-experiencing the traumatic event emotionally or physically, feeling emotionally numb, and avoiding reminders of the event.

The researchers, from the Children's Hospital of Philadelphia at the University of Pennsylvania, the Children's Hospital at Strong in Rochester, N.Y., UCLA, and the Children's Hospital of Los Angeles, write that some of those who experience this problem may tend to be anxious about other things also. In addition, they may not have received all the counseling necessary to deal with long-term effects of cancer and treatment.

McKee and the medical team at Cook Children's know the importance of talking about how the illness and treatment may impact their lives. McKee says that other childhood cancer survivors talked with him about what to expect when he was dealing with it and it helped him cope. A few years after his transplant, McKee began volunteering his time to counsel others and continues to do so.


As evidenced by McKee's experience, Cook Children's has always diligently provided emotional and medical care for its childhood cancer survivors -- even into their 30s. Recently, they expanded that effort by launching the Life After Cancer Program with the help of cyclist and cancer survivor Lance Armstrong and his foundation.

"Once we realize a child will survive, than we have to look at what their long-term care will be," says Jeffrey Murray, MD, pediatric oncologist and medical director of the program. "We have to get any issues they may have out on the table and discuss them."

Under the program, pediatric doctors in all specialties are available for consultation, along with nurses, a psychologist, and a social worker. The program will do baseline neuropsychological testing when children are diagnosed so doctors can monitor them for any learning problems during treatment, follow-up, and recovery.

"A lot of the patients do have fatigue and many have sociopsychological problems, maybe even posttraumatic stress syndrome," says Lisa Bashore, MS, RN, CPNP, director of the Life After Cancer Program. She says dealing with cancer, treatment, and recovery often is more difficult for teenagers than for the younger children.


"Adolescence is a very difficult time for anyone. They want to be independent and away from their parents with their friends," Bashore tells WebMD. "But for kids with cancer, it's even more difficult because they are facing isolation and restrictions."

McKee says that he was old enough to understand the consequences of Hodgkin's and the transplant, and he trusted the doctors. "It made me realize they knew what they were doing."

But some older youngsters have more emotional problems because they are aware of what's happening to them, Murray and Bashore say. The authors of the Journal of Clinical Oncology paper echo this. They say in earlier studies they found a much lower rate -- 4.5% -- of posttraumatic stress disorder in cancer survivors aged 8 to 19. They believe this may be because younger children aren't aware of their own mortality and often don't realize the seriousness of the disease. The average age of the young adults in the current study was 25.


The researchers warn that if young cancer survivors are too anxious about their future, they may stop seeking the medical and psychological care they need. The authors advise that healthcare professionals honestly discuss long-term effects and establish a caring relationship with young adult survivors to support their development.

This is certainly the aim of the Cook Children's program, although Murray says they are still learning. "It will take years for our specialty to refocus on survivors," he says. "We have spent the last 20 years focused on the cure; now we're dealing with our success."

According to McKee, they already are doing a good job. "I go in once a year for a checkup. It's not that I have to go in, but that I like to go in," he says, adding that they give him emotional support and he looks forward to seeing the doctors and nurses. "I don't know what I'll do if I have to go to a regular adult hospital."

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