Lifelong implications of childhood cancer

Sheryl Gay Stolberg

New York Times


In the late 1960s, fewer than one-third of cancer patients under age 15 lived for five years past their date of diagnosis, the point at which experts consider them cured. Today, survival is not the exception but the rule. Roughly three-quarters of all children currently being treated for cancer are expected to reach the five-year mark.

And as oncologists continue to refine their methods, the population of childhood cancer survivors, estimated at 250,000, is rapidly growing; the National Cancer Institute estimates that by the year 2000, one in 900 people between the ages of 16 and 44 will be a survivor of childhood cancer.

Nearly 30 years after former President Nixon declared war on cancer, this turnabout is often cited as evidence that a cure is within reach. But as the first large wave of child-hood cancer survivors reaches its 20s and 30s, the word "cured" is a misnomer for many. Though some, particularly those treated more recently, glide through life virtually unscathed, others are finding that the two staples of cancer treatment, chemotherapy and radiation, can bring with them health problems: heart, lung and kidney dysfunction, memory loss, infertility and even second cancers.


Insurance hard to find

And as they leave their parents’ homes to grapple with college, careers and relationships, they face an array of social difficulties, as well, from awkwardness in dating to difficulty finding jobs to an obstacle that can seem as insurmountable as cancer itself: finding health insurance.

Daniel Fiduccia, a disability-rights consultant in California who works with survivors of childhood cancer, said, "The single biggest part of my job is explaining to people why they are not going to get health insurance or what will happen when they lose it."


As a wave of young cancer survivors grow up, ‘cured’ is a misnomer for many.

"These kids are able to walk and talk and look like the average American," Fiduccia said, "but I’m getting more and more calls about kids who were treated more than 10 years ago for cancer who are now living at home with their parents and are unemployed. This is not like falling off your bike and breaking your arm and once the cast is off, that’s it."

It is estimated that about half of all children cured of cancer experience moderate to severe medical problems years after their treatment. In the lexicon of cancer survival, these are known as "late effects". Dr. Philip Steuber, a pediatric oncologist, uses another name: "the cost of cure."

Because so few children survived cancer decades ago, doctors are only just beginning to comprehend how high those costs can be. Experts know quite a bit about late effects in the first decade after treatment, but less about the second decade and very little after that. The issues are complicated; childhood cancer is really an array of more than a dozen different diseases, each with its course of treatment and side effects.

Patients with Hodgkin’s disease, for example, sometimes require radiation to the chest; girls who receive this therapy are at high risk for breast cancer later in life. Patients with brain tumors almost invariably need radiation to the head; often, their intellect is impaired, causing problems at school and at work. Doxorubicin, a mainstay drug of chemotherapy, can cause heart damage, and another anti-cancer agent, cisplatinum, can harm the kidneys.


Tracking patients

Much of today’s research revolves around devising new treatments to minimize late effects, so that children treated today may have fewer problems than their predecessors. To that end, Dr. Leslie Robison, a pediatric cancer expert at the University of Minnesota, is supervising a study of 15,000 childhood cancer survivors.

The nationwide study, paid for by the National Cancer Institute, involves 26 institutions and more than 100 researchers tracking patients treated between 1970 and 1986.

"During the late 1960s, 1970s and 1980s there was very aggressive attention and remarkable success in treating childhood cancer," Robison said. "Now we are putting the focus on looking at the survivors. We need to know what are the long-term adverse effects of having had cancer as a child, not just what happens in the first 10 years after they are treated, but what potentially could happen 30, 40 and 50 years down the line."


Source: New York Times, Jan. 3, 1999