Childhood Cancer Survivors in the Dark

Abstract

In October 2002, the families of 1,360 longterm survivors of childhood leukemia or cancer were invited to a gala dinner commemorating the 30th anniversary of the Unit of Pediatric Hematology and Oncology of the Giannina Gaslini Children’s Hospital and Research Institute (Genova, Italy). The invitation was confidential and made no mention of past disease. Among the many families who answered, four long-term survivors declined, primarily because they had never known they had ever had cancer or did not remember. Confused about their health status and wanting to learn more about the disease they had endured, these four survivors asked to meet with the pediatrician-inchief who had cared for them more than 25 years ago. We report our findings on the experiences and distress of these four adults, who only recently learned they had cancer in early childhood. These cases provide telling examples of situations that might have been prevented if reflective communication had transpired among the patient, family, and caregivers during the original illness. The four individuals had learned from their parents only recently that they had a severe debilitating disease during early childhood and that they had to undergo regular follow-up for the following 5 years. None of them knew the exact diagnosis or name of the disease. Here are the details of each person’s story. A 36-year-old woman had abdominal Hodgkin’s lymphoma when she was 8 years old. She earned her college degree and is now a high school teacher. She was accompanied to the meeting by her husband. They concurred that theirs was a “perfect marriage.” They said the woman’s sterility was not a problem for either of them and that they had forgone adopting a child. The invitation to the gala aroused the woman’s suspicion about her past as a child patient and motivated her to request clarification. The account of her experience and the memory of some particulars, such as radiotherapy and intravenous chemotherapy sessions, together with her teaching background, induced a process of internalization and an awareness through which she reached the conclusion that she had indeed suffered from cancer early in her life. Her husband’s presence during the encounter was conducive to this realization, which both reached simultaneously. At the end of the meeting, they said they were glad to know about her past disease and to have discovered that her sterility was a late effect of the treatment. A 35-year-old woman had nonHodgkin’s lymphoma when she was 6 years old. She studied with no difficulties until age 19, when she married. She had two healthy children. When she received the invitation to the ceremony, her husband was astonished and then angry, convinced that she knew all about her disease but had, out of a lack of trust in him, hidden everything from him. During the couple’s meeting with us, she adamantly vowed she had known nothing about her disease. Dialogue was difficult at the outset of the conversation, due to each person’s unyielding stand. The compelling request for assistance was driven, above all, by the need to re-establish the trust that the couple seemed to have lost. The recollection of events occurring 25 years earlier proved From the Department of Pediatric Hematology and Oncology, G. Gaslini Scientific Children’s Hospital, Genova, Italy.