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Treatments That Saved Kids' Lives Haunt Them As Adults

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Knight Ridder Newspapers


FORT WORTH, Texas - Mike Orlie came to despise the leg.

Saving it had seemed the right thing to do when he was diagnosed with bone cancer at 16. Amputation was just too final.

"We felt that if doctors could salvage his leg, we had to try it," said Orlie's mother, Norma.

So, in 1987, doctors removed Orlie's right knee and a portion of his upper tibia, the long, thick bone between the ankle and knee, and replaced the bone with a straight titanium rod.

Over the next nine years, he found himself living a nightmare.

He was in constant pain. And he felt different, knowing that he couldn't watch a movie unless a right-hand aisle seat was available, or sit in the bleachers for a football game unless he could prop his leg between the strangers sitting in front of him.

"I would look at that leg and just hate it," said Orlie, 32, of Arlington, Texas. "I would look at it and think about all the things I missed out on."

When the bone above the rod broke in a 1996 car accident - the second break since the surgery - Orlie knew he couldn't take it any longer. He told doctors to amputate.

"It was the best decision I ever made," he said.

The battle against childhood cancer has been one of the medical community's most impressive success stories, with a survival rate of nearly 80 percent compared with 25 percent in the 1960s. But as survivors continue to celebrate that success years later, researchers are beginning to see long-term effects of the treatments that saved so many lives.

Years after beating the disease, nearly half of the nation's 270,000 childhood cancer survivors have at least one fairly significant health problem - second cancers, heart disease, depression, infertility - caused by chemotherapy, radiation or other treatments, according to estimates in a study released this fall.

The Childhood Cancer Survivor Study, funded by the National Cancer Institute, examined nearly 10,000 survivors at the University of Texas Southwestern Medical Center at Dallas and 25 other institutions.

"Radiation and chemotherapy did a great job of curing the cancer, and without the treatment we'd have nothing to talk about in terms of survivorship," said Dr. Kevin Oeffinger, a family practitioner and professor at University of Texas Southwestern, which is among the leaders in studying the effects of childhood cancer. "But with the cure, there is some cost, and that is different from survivor to survivor."

Researchers for the study hope the information can be used to better understand the delayed effects of treatment and to better assess patients' follow-up needs.

Others are also getting involved. The Children's Oncology Group, a national organization dedicated to research, has developed guidelines to help family physicians screen patients with a history of childhood cancers.

For many survivors, most of whom were treated between 1970 and 1986, the long-term effects of treatment emerged just when they were on their way to a "normal" life.

When Orlie should have been savoring the freedom of college, he found himself tied down by medical checkups and the anxiety that the cancer might return.

He spent a year on crutches after he broke his leg walking to classes at Texas Christian University. Depression set in as the psychological gap between Orlie and his classmates widened; there was no escaping the constant reminder that he was different.

"With leukemia, you go on with life, and nobody can really tell," he said. "But basically, I had a crippled leg. It made me feel very isolated; it made me feel like less than a person."

Depression occurring years after recovery is not unusual, the survivor study found. Almost 20 percent of those in the study suffered psychological distress. Women were more likely than men to experience problems, with 60 percent more likely to suffer from anxiety as a result of their cancer experience.

April Langingham was a 17-year-old senior at Colleyville Heritage High School in Colleyville in North Texas when she learned that the pain in her leg was caused by osteosarcoma, a bone cancer that affects about 900 youngsters a year.

After limb-saving surgery, she underwent chemotherapy that dragged on through her senior year. She lost her hair, had trouble eating and needed a wheelchair to get around.

Her weight plunged to 85 pounds. Still, she was able to attend her senior prom and she walked across the stage at her graduation.

Now 23 and working as an administrative assistant in nearby Weatherford, Langingham said she is often anxious about everyday things. An unexpected pain or bump can send her straight to the doctor's office.

"My fear factor is much higher than I think it would be if this had not happened," she said. "I realized that the stuff you hear on the news can happen to you."

She believes that cancer forced her to grow up fast and left her with mental and physical scars. During those oh-so-self-conscious teen years, she was terrified of losing her leg.

"I have extra insecurities about my body image," Langingham said. "I think I'll feel different forever."

She has mixed feelings about her experiences. Although she is grateful to be alive, she is well aware how difficult the treatment can be.

"I have a fear of going through it again," she said.

She used to worry that no man would love a cancer survivor with scars that zig-zagged down her leg. Now that she is engaged, she worries that she won't be able to have children because fertility is often affected by treatments.

Orlie has fears too.

"I'm probably a little bit more of a hypochondriac," he said. "There have been several times when I went to the doctor for chest pains and it turned out to be just stress."

The damaging effects of chemotherapy and radiation are seen in people of all ages, but the problems are often magnified in children, whose bodies are still growing, said Dr. George Buchanan, a pediatrics professor at University of Texas Southwestern.

"Survivors can carry huge scars and burdens from treatment," he said. "They range from serious to more subtle, which can still have an impact."

Chemotherapy can cause heart problems, including congestive heart failure, and can lead to lung disease and hypertension. Other cancer treatments may cause premature menopause, infertility and obesity.

The knowledge that a patient is a cancer survivor allows doctors to watch for problems that might be related to early treatments, said Oeffinger, who also leads the University of Texas Southwestern's After Cancer Experience, or ACE, Young Adults Program.

The program follows cancer survivors throughout their lifetime. It is one of the few in the country to follow patients after they outgrow their pediatricians.

More than half of patients go on with their lives without receiving specialized care after cancer. As a result, long-term effects are often overlooked because doctors assume they're treating a typical healthy young adult.

"If a 25-year-old female complains of shortness of breath or chest discomfort, a doctor is likely to think it's anxiety or she's under too much pressure, without recognizing she's at risk for heart problems," Oeffinger said.

The medical community has made changes in cancer treatment over the years, based on what doctors have seen in survivors.

In the 1980s, doctors used radiation rather than chemotherapy to treat cancer in the central nervous system. In the 1990s, they discovered the disastrous long-term effects of the treatment.

"If we did radiation to the brain, it decreased the risk for someone relapsing," Buchanan said. But the doses caused a big problem: The patient's IQ dropped by as much as 40 points.

Doctors still don't know whether similar problems lie ahead in the next decade or more, Buchanan said.

Orlie believes that his parents made the right decision 16 years ago because it gave him a choice. Life has improved since his leg was amputated and he was fitted with a prosthesis.

Some of the confidence he lost as a student at Arlington, Texas' Lamar High School returned when he was able to run again. He has participated in national competitions for disabled athletes.

At the time of their son's diagnosis, Norma Orlie said that she and her husband never imagined what was ahead.

"Cancer was such a nasty word, and we didn't know what to expect," she said. "We had such a great fear of what the year of treatment would hold, we didn't look down the road that far."

Despite doctors' predictions that chemotherapy would damage his fertility, Mike Orlie has two children. He works as a pharmaceutical salesman. His fear that cancer could return has not disappeared, but it's no longer constant.

Overall, survivors may be depressed, anxious or fearful, but they are coping fairly well, Oeffinger said.

"I think less and less about cancer as time goes on," Orlie said. "Mostly, I just feel grateful."


(c) 2003, Fort Worth Star-Telegram. Distributed by Knight Ridder/Tribune News Service.

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