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Complicated history: What happens when cancer survivors grow up?

Increasing numbers of adult patients are survivors of childhood cancers. For many, the health risks remain.

By Susan J. Landers, amednews staff. July 7, 2003.

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The high survival rate of children with cancer is one of medicine's greatest success stories. Before the 1970s, childhood cancers such as leukemia or brain tumors were considered almost certain death sentences. Today the vast number of young patients diagnosed will be cured.

The impact of these childhood experiences on patients' lives, both in terms of the cancers and their treatments, often echo through primary care physician offices, where thousands of adults with this background go for regular health care. Many have very special needs.

Sometimes these medical needs are aftereffects of the cancer itself; other times they're caused by the treatment. Organs can take a pounding when oncologists pull out all the stops to attack a child's cancer, and secondary cancers can occur years later.

Consider these examples: An adult patient who was treated years before for Hodgkin's disease should be screened for breast cancer much earlier because she received radiation in areas with healthy breast tissue. Other risks are heart disease after chemotherapy or high-dose chest radiation and learning disabilities after radiation or chemotherapy to the brain. Symptoms of posttraumatic stress disorder have been seen in survivors and their parents. Patients who received blood transfusions before July 1992 might have been infected with hepatitis C.

"The function of ... fairly aggressive therapy is there is almost always some kind of chronic or late effect that we worry about," says Julia Rowland, PhD, director of the National Cancer Institute's Office of Cancer Survivorship.

Exam room example

Janice Hillman, MD, an internist in Radnor, Pa., specializes in treating adolescents and young adults who are transitioning from pediatric problems to more adult concerns. She starts seeing patients when they are about 12, shepherding them through puberty and keeping an eye on their emotional and physical development.

Her approach is a good fit for childhood cancer survivors, and her practice includes about three dozen of them. Several are in their 20s and 30s now. "I had my first patient get married this year, and she's hoping to start a family in a couple of years," Dr. Hillman said.

Although she treats them much as she treats her other patients, Dr. Hillman acknowledged that their well-being requires additional attention. "I don't try to be an oncologist," she said. "[But] I do try to keep up with what the long-term effects are in terms of secondary cancers that come up and the effects of radiation and chemotherapy on their various organ systems."

She checks these patients a little more closely than she does other patients of the same age. Annual blood and urine checks are in order for her 20-something survivors, where they might not be for other patients.

Most of these patients were referred to her by Anna Meadows, MD, a professor of pediatrics at the University of Pennsylvania School of Medicine, who treated them at the Children's Hospital of Philadelphia. They usually arrive in Dr. Hillman's office with a comprehensive summary of their former condition and treatment. It makes a huge difference in the confidence with which Dr. Hillman can proceed.

If the patient doesn't arrive with documented treatment, "the primary care physician can ask for a summary in terms of: 'guide me a little, hold my hand a bit,' " she said. Physicians should consult the patients' oncologists, for example, about how often the patient should have a pulmonary function test or an echocardiogram.

Meanwhile, Dr. Meadows welcomes the willingness of physicians such as Dr. Hillman to provide the necessary level of ongoing care to these adults. "For 30 years we've been trying to catch the ear of the primary care physician," Dr. Meadows said, adding that she would much rather have former patients seen in a community setting. "We don't want them to continue to come to a pediatric institution to see the babies with the IV poles who are crying and bald. That's not part of what we do."

What she does do is cure children. "We know we can cure three out of four children with cancer, and that translates to about one-quarter of a million such individuals in the U.S. now."

Detective work necessary

It is important to know what the treatment was to determine what to monitor for, but gathering this information is not always easy. All too often patients don't even know they had cancer.

That's not surprising, since cancer usually is detected within the first several years of a child's life, said Leslie L. Robison, PhD, professor of pediatrics at the University of Minnesota Cancer Center in Minneapolis.

In addition, not all primary care doctors have patients who are referred by specialists such as Dr. Meadows and arrive with detailed medical histories. And patients are not always the most reliable sources of information about past treatments.

If the patient doesn't arrive with past treatment information, physicians must be "very keen" in taking a medical history to determine that a patient had been treated for cancer, Dr. Robison explained. "If there is a suggestion that they had a serious disease as a child, cancer might be one of the things they had."

In determining treatment received for childhood cancer, information may be available from the treating hospital, although the relevant records may have to be retrieved from archives. Contacting the oncology or hematology department might produce the same results, Dr. Robison said.

Knowing how old the child was when treated could help. "Many of the risks are very much age-dependent," he said. There are also different risks for men and women.

The National Cancer Institute's Office of Cancer Survivorship is urging the medical community to develop standardized documents, Dr. Rowland said. Patients could be provided with a permanent record indicating, for example, whether they received radiation and, if so, how much, the type of machine and target site. That record then could be presented to a treating physician.

New resources are in the making for physicians. The Children's Oncology Group, a national consortium of cancer treatment centers and teaching hospitals, is completing a set of guidelines to help physicians keep track of the possible risks of earlier treatment. The guidelines are expected to be available on the group's Web site by the end of the year.

Such resources could prove useful, as childhood cancer survivors are not a homogeneous group, noted Kevin Oeffinger, MD, a professor of family practice and community medicine at the University of Texas Southwestern Medical Center in Dallas. "We might have one leukemia, one brain tumor and one Hodgkin's disease, and one patient may have been treated in the 1970s and another in the 1990s, and all have very different risks."

The Institute of Medicine also is planning to release a book on childhood cancer survivorship sometime soon, said Roger Herdman, MD, director of the National Cancer Policy Board. The book will be one of a series drafted by the cancer board, and ordering information will be available on the IOM Web site.

Counseling patients on healthy living in general becomes even more crucial for those who have been treated for cancer. Avoiding other known cancer risks, such as smoking or workplace hazards, are especially important for cancer survivors known to be at risk for a subsequent cancer. And some patients may be more diligent in adhering to such tenets of healthy living than others who believe they have already survived the worst of what life has to offer.

Even if patients know they had cancer as children, many choose to disregard it. There's an "I don't want to think about it, I don't want to address it, what's done is done mind-set," Dr. Oeffinger said.

Fertility issues also are likely to surface among young adult survivors. Dr. Hillman tries to address the topic early on. She discusses whether to look into sperm or egg banking immediately, so a patient is prepared if something happens down the road.

Physicians are paying more attention to emotional issues. "There's a lot of research going on now in terms of problems with self-esteem, anxiety and posttraumatic stress disorder," Dr. Hillman said.

One new study did uncover some good news: Children of survivors don't appear to be more likely to develop cancer than do other children. The study appeared in the May 13 New England Journal of Medicine.

Much information is coming from the Childhood Cancer Survivor Study funded by the National Cancer Institute and based at the University of Minnesota.

The study recently launched a project to collect DNA from many of the 20,000 survivors participating in the study. The DNA will be used to study genes that might influence late complications of cancer chemotherapy, such as effects on the heart, lungs and bones.

Many of the findings from the survivor study point to the need for education, said Dr. Robison, who works on the project. And the education must be balanced to make survivors aware of risks without overemphasizing their vulnerability. "It's a fine line," he said.

Treatment of childhood cancer survivors clearly is something primary care physicians should inquire about, Dr. Rowland said.

"We do know that second cancers and late complications of treatments are responsible for about a quarter of the deaths among pediatric cancer survivors," she said. "So it's not as though it's trivial."

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