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COST OF THE CURE: Eighty Percent of the Kids With Cancer Beat the Disease

Posted on: Thursday, 6 April 2006, 09:00 CDT

By Jeremy Olson, Pioneer Press, St. Paul, Minn.

Apr. 6--Doctors never worried much about the long-term health of childhood-cancer survivors, because survival was rare. Time and treatment have changed that outlook.

Consider Justin Kortuem, 25, whose two battles with Hodgkin's disease inspired him to enter the St. Paul Seminary. Or Sonja Johnson, 28, who can barely remember leukemia at age 3, but is studying the disease for her doctorate. Or Carl Lee, who thought he was dead at age 15 when an outdated encyclopedia told him his cancer was fatal. He is 44.

They are part of a new generation of childhood-cancer victims who are living to see careers, weddings and home mortgages. The odds of survival are now almost 80 percent, but even survival has its consequences. Research based at the University of Minnesota shows that 60 percent to 70 percent of these survivors will suffer complications, or late effects, and that the nation's health care system needs to note the risks and medical needs of this growing group.

A new clinic at the University of Minnesota Cancer Center is one approach -- providing in-depth examinations to prevent or catch late effects, which often result from the harsh chemotherapy or radiation that the survivors endured as children.

"When we treat children, we treat them very aggressively," said Dr. Daniel Mulrooney, the clinic director, "because we're treating them for a cure -- for a very long life after cancer."

Lee received radiation for Hodgkin's in the 1970s. He described the process as partially covering up vital organs with lead and then "blasting away."

Now the marketing director of the Minnesota Opera, Lee suspects the exposure caused numerous health problems. Drugs treat a thyroid condition. Surgery replaced a defective heart valve, which probably was damaged by the radiation. A dermatologist removed skin tumors.

Lee beat one known risk: infertility. The St. Paul man has two daughters.

The profile is familiar to the Childhood Cancer Survivor Study, a project based at the U that tracks people diagnosed between 1970 and 1986 with any of eight types of childhood cancer. One in three survivors of Hodgkin's developed the thyroid condition Lee has, and one in four sustained some form of heart problem, according to the study.

Neurological problems are common as well. One in three survivors experiences problems ranging from numbness in fingers and toes to seizures or paralysis.

Oncologists have known of late effects for years, but the U.S. Institute of Medicine reported in 2003 that the nation's health care system was underprepared for the growing number of survivors.

CLINIC HAS FOCUS

The U clinic, among the first in the nation, was formed last year largely as a response to that national report. It accepts patients five years after they are diagnosed, or three years after they receive stem cell transplants as part of their cancer care. Survivors always received this follow-up care, Mulrooney said, but they receive much longer visits and much more attention at a clinic designed around their needs. On Saturday, the clinic will host a free session to help cancer survivors stay healthy longer.

Johnson, the doctoral student from Monticello, has enjoyed what she calls the "best case scenario," with no residual health problems so far. Her treatment lacked radiation and certain medications that can cause the kind of damage that results in late effects. Her clinic visits are comforting, though, especially as she approaches ages at which breast cancer and other disorders become more common in all women.

Lee said he tries not to dwell on the ever-present concern of a new complication. The clinic visits put his mind at ease.

"If there is anything I think about," Lee said, "it's just the unknown nature (of late effects). You just don't know, ultimately, what side effect could creep up at any time in the future."

The expertise of the clinic is a two-way street. Doctors tell the patients what they know about the timing of late effects, but they are learning more the longer the patients participate in the cancer survivor study.

One finding is that the risk of late effectsdoesn't diminish over time, but the type of risk may change.

Some early teen survivors need drugs to initiate puberty, for example, because the cancer treatments disrupt their normal growth cycles. Other known late effects -- such as cardiac problems or skin cancers -- grow more common with age.

The risks also vary by type of cancer. Survivors of central-nervous-system cancers, for example, are two to three times more likely than survivors of other cancers to suffer hearing or vision loss.

Children treated today may not have the same risks, because cancer treatments have improved. Radiation, for example, is provided in much more focused beams, which protects organs surrounding tumors.

Mulrooney said the survivor study likely will be expanded to monitor recent childhood-cancer cases, to determine if risks are diminishing.

Kortuem, at 25, is part of the younger generation of survivors. He beat Hodgkin's at 15 and again at 19. He suffered a heart attack at 21 when playing basketball -- perhaps because of the cancer treatments.

The first diagnosis came from a high school sports physical. He was expecting to be the starting quarterback as a sophomore in St. Michael, Minn. He tried to remain hopeful.

"I put my faith in God the first time," he said. "The second time I was like 'Hey, wasn't that good enough?' "

In the end, Kortuem's faith was strengthened by his survival. He hopes his story can inspire others, but he knows his cancer story isn't necessarily over.

At his scheduled clinic visit this year, doctors discovered some enlarged lymph nodes. It was a possible sign of cancer, but it also may have been related to a cold. His latest appointment this month brought relief. No cancer.

"Everything is going well," he said. "The scans were clear. I'll go back in a year."

Jeremy Olson can be reached at jolson@pioneerpress.com or 651-228-5583.

What: "Beyond the Cure" is a free educational session designed to teach childhood-cancer survivors how to maximize their chances for full and productive lives.

Who: Open to survivors at least 16 years old, their families and health care workers.

When: 8 a.m. to 3 p.m. Saturday

Where: McNamara Alumni Center, University of Minnesota, 200 Oak St. S.E., Minneapolis

Info: Call 1-888-226-2376 to register for the free event or visit www.cancer.umn.edu.

270,000

Childhood-cancer survivors in the U.S., 1997.

79%

Survivors (1991-2000)* who lived five or more years.

56%

Survivors (1974-1976)* who lived five or more years.

Common complications of childhood cancer

Late effects of childhood cancer vary by the type of cancer and treatment. Seizures are far more common among survivors of central-nervous-system cancers. Amputations are more common among bone-cancer survivors. The following are the most common late effects reported in the University of Minnesota's Childhood Cancer Survivor Study, examining 11,481 people.

Type of late effect, percentage of patients in study with this effect

-- Prolonged pain or abnormal sensation, 31.1

-- Hypothyroidism, 11.2

-- Problems with balance, 10.8

-- Chest pain with exertion, 10.4

-- Weakness in the arms or legs, 8.2

-- Seizures, 8.2

-- Chronic cough, 7.4

-- Growth hormone insufficiency, 7.1

-- Amputation or limb loss, 5.4

-- Tremor or movement problems, 4.8)

-- Arrhythmia, 4.6

-- Paralysis, 4.1

-- Blindness, 3.8

-- Cataracts, 3.8

-- Medication needed to initiate puberty, 3.4

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Copyright (c) 2006, Pioneer Press, St. Paul, Minn.

Distributed by Knight Ridder/Tribune Business News.

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Source: Saint Paul Pioneer Press (St. Paul, Minn.)

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