Many survivors of childhood cancer can’t remember important facts about their disease. Although most recall their diagnosis, they are hard-pressed to recall details of their chemotherapy, radiation, or surgery, according to a report in the Journal of the American Medical Association (Vol. 287, No. 14: 1832-1839).

Most childhood cancer patients are being cured by modern treatments. Their chance of surviving more than five years is greater than 70%.

But these cures come at a price. All of the treatments can lead to complications down the road, the report said.

For example, a particular chemotherapy drug called doxorubicin (Adriamycin) can cause heart failure. Radiation to a girl's chest can cause breast cancer when she is in her 30s. Chest radiation also causes lung cancer for both sexes, especially in smokers.

If the neck is radiated, the thyroid gland will be damaged. Removing the spleen, which is sometimes done in people with Hodgkin’s disease, makes a person susceptible to lethal infections.

The authors of the new report said that primary care doctors of these survivors need to know about their treatment. Because these people are cured, they have moved on in life. They are no longer seeing the children's cancer specialists who took care of them. They might even have moved away from the city where they were treated.

So how are their new doctors to know of their treatment? Most often, the patients need to be able to tell their doctors.

But how much do they know? That is the question raised by Nina S. Kadan-Lottick, MD, MSPH, University of Minnesota School of Medicine, and colleagues from cancer centers around the US and Canada.

Because most children with cancer are treated in clinical trials at cancer centers, the records of their treatment can be reviewed. Of the 12,000 survivors available to the researchers, 635 were contacted by telephone and asked about their knowledge of their cancer and its treatment. They were all over 18 years old; their average age was 29.

Most knew their diagnosis. Although only 70% knew their exact diagnosis, another 20% knew enough to explain it so any doctor would understand. But when it came to important details about their treatment, many failed.

Only one-third of them knew they had received the heart-damaging drug doxorubicin. Ninety percent knew they had received radiation, but only 70% knew which part of their body. Another 10% thought they had received radiation when they really hadn’t. One-third of survivors who had their spleen removed didn’t know they had that operation.

All this means that the doctors caring for some of these survivors may not be on the lookout for heart failure, or make sure they treat infections vigorously. They may not screen women early enough for breast cancer and warn others of the huge risk of lung cancer they face if they smoke. And if a patient complains of fatigue, a problem with the thyroid gland might not be the doctor's first thought.

The solution, according to Kadan-Lottick, is that the centers where the children were treated give them or their parents summaries of their treatment that they carry with them wherever they go. Perhaps, she adds, in the future "a secure electronic record may be a feasible option."