THE ART OF ONCOLOGY: When the Tumor Is Not the Target Childhood Cancer Survivors in the Dark D. Caprino, T.J. Wiley, L. Massimo From the Department of Pediatric Hematology and Oncology, G. Gaslini Scientific Children's Hospital, Genova, Italy Address reprint requests to Daniela Caprino, MD, Department of Pediatric Hematology and Oncology, G. Gaslini Scientific Children's Hospital, Largo G. Gaslini 5-16148 Genova, Italy; e-mail: danielacaprino@ospedale-gaslini.ge.it Here's the Case In October 2002, the families of 1,360 long-term 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-in-chief 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 non-Hodgkin'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 tedious and difficult, but the combined efforts of the spouses and their interlocutor ultimately made it possible to reconstruct a story by clarifying and piecing together the missing fragments. A 29-year-old man had acute lymphocytic leukemia when he was 3 years old. He successfully completed his university studies in engineering and now enjoys a healthy and active life. He is single. In his account of his life, it became clear that any recollection of the disease—which he had never discussed with his family before the invitation—had been entirely erased. The difficulty thus arose from the need to fill in a part of his life that had been lost. He wished to know the name of his disease, the risk of relapse, and any late effects. However, the realization of having had leukemia came too soon after receiving the invitation to attend the ceremony; he declined, stating that he preferred to get on with his normal life. A 27-year-old woman, now with a PhD in Italian literature, had acute lymphocytic leukemia when she was 2 years old. She holds an interesting job, has many friends, practices several sports, and lives alone. During her encounter with us, she said her parents had never spoken to her about the disease until the invitation arrived. She confessed that she was shocked and confused and that she was unwilling, despite her parents' wishes, to attend the ceremony. She confided that during a recent medical check-up, her doctor had found a thyroid node and had told her that given her previous history, he would have to remove it. This triggered new and even stronger doubts about never clarified events that, in turn, prompted the question of what exactly she had endured. In this case, too, the time between the realization of having had cancer and the invitation to the commemorative event was insufficient, and she declined to attend. She nonetheless asked to continue to chat on the Internet, and the following month she called again to volunteer in the Oncology/Hematology Division. DISCUSSION Health care means more than disease management; diseases can sometimes be cured, lives can be prolonged, and symptoms can be relieved, but a patient may still suffer. Patients who do not fully grasp the nature of their illness cannot know whether symptoms are linked to side effects of therapy or a worsening of their disease, and this may negatively affect their health status. Often, for fear of learning painful truths, patients (or parents, in the case of pediatric patients, who act out of a desire to "protect" the child) dare not seek answers, advice, or explanations. The physician thus has the challenging task (if not the duty) to elicit these doubts and unasked questions through empathic exchange and discussion, in the event that they do not arise spontaneously. Moreover, once the patient-physician relationship has been established, it must be adhered to and cultivated as a mutually undertaken journey throughout the entire course of the disease.1 These distressing situations, arising in long-term childhood cancer survivors, might have been averted had a more open and trusting doctor-patient-family relationship existed during and after the disease. The ability to grasp the plight of a child patient is undoubtedly one of the most demanding tasks that a pediatrician faces and one that demands well honed communication skills. This is particularly true in the case of serious disorders requiring prolonged treatment schedules. It is through careful listening to and evaluation of a child's means of expression—be it dialogue, stories, or drawings—that it becomes easier for the physician to discern both the child's need for more information and the correct time to divulge it.2 The accounts of these patients clearly reveal an anxiety about something unknown that they had endured and that they could not internalize. In contrast, we, as practicing pediatric hemato-oncologists, have seen that children who are told everything about their affliction are, with time, ultimately able to internalize the experience. A telling example is the case of a now 21-year-old woman cured of neuroblastoma at the age of 3 months, who willingly accepted the invitation to speak at the commemorative event as a long-term survivor. Her written reply to our invitation can be summarized in the following: "When I began asking my parents questions about the scars on my body, they hid nothing from me. They told me everything gradually as I grew up so that I could perceive it slowly, rationalizing it only as far as a more mature age would let me. Moments of crisis and fear did arise...a refound sense of ease, though, allowed me to successfully complete my schooling." Our experience has taught us that it is better to speak directly with children than it is to remain silent with the intent to protect them, to dispense with fantasies that are most often worse than reality.2 This act of listening and communication, which demands the involvement of the child and all his or her caregivers, can ultimately lead to a reconciliation of feelings in the patient. In the pediatric setting, parents and the whole family play a pivotal role in this process. Listening to a patient's story is the first step in the physician-patient relationship. Each patient has a new and unique story to tell, and the physician must be able to adapt his or her medical knowledge about the disease to the patient's needs. It is through careful attention to and evaluation of all a child's expressive that a physician may most easily discern both the child's and the parent's need for more information and the correct moment to divulge it. The accounts of the patients reported herein clearly reveal fear of some unknown thing they had endured that they could not internalize. Narrative of illness, as an approach entailing consideration of the physical conditions of a person and his or her psychological and social status, provides a medium for the education of both patients and health care professionals.3–5 The impact and benefit of narrative medicine could only gain from the careful consideration of these situations and relationships, especially those between physicians and parents and between physicians and nurses.6,7 For this reason, it is necessary to contemplate the patient's detailed description of symptoms as a first step. Thereafter, through open dialogue about feelings and symptoms, the physician may discover psychological difficulties or poor quality of life of either the patient or next of kin, even if the patient's physical status is good. These four cancer survivors, at the realization that a momentous part of their lives had been hidden from them, clearly showed signs of distress resulting from a lack of answers to their questions and from relational problems with their parents. They all expressed a sense of relief at being made aware of what had happened to them during their childhood, further claiming that, from then on, they (and their spouses) would be able to lead a fuller, more self-possessed, life. Interpersonal skills, though sometimes difficult to put into practice and certainly requiring flexibility of style, are pivotal to overcoming communication barriers.8 They are, moreover, key to successful patient management. A pediatrician must strive to reason clearly about the child's total health care, a process that naturally encompasses the parent/child relationship.9 This, in turn, entails a complementary knowledge of human beings and of the foundations of psychology. For this reason, we advocate the inclusion of concepts and principles of narrative medicine in pediatric training programs, in addition to the specific study of communication skills, relational aspects, and ethics. The authors indicated no potential conflicts of interest. REFERENCES 1. Varni JW, Katz E: Stress, social support and negative affectivity in children with newly diagnosed cancer: A prospective transactional analysis. Psychooncology 6:267–278, 1997 2. Masera G, Chesler M, Jankovic M, et al: Guidelines for communication of the diagnosis. Med Pediatr Oncol 28:382–385, 1997 3. Eggly S: Physician-patient co-construction of illness narratives in the medical interview. Health Commun 14:339–360, 2002 4. Charon R: Narrative Medicine: A model for empathy, reflection, profession, and trust. JAMA 286:1897–1902, 2001 5. Donnelly WJ: Patients' stories as narrative. JAMA 287:447–448, 2002 6. Neville K: The relationships among uncertainty, social support, and psychological distress in adolescents recently diagnosed with cancer. J Pediatr Oncol Nurs 15:37–46, 1998 7. Widdershoven GA: Care, cure and interpersonal understanding. J Adv Nurs 29:1163–1169, 1999[ 8. Wilkie V: Narrative based medicine essential in communication skill training. BMJ 318:28, 1999 9. Varni JW, Sahler OJ, Katz ER, et al: Maternal problem-solving therapy in pediatric cancer. J Psychosocial Oncol 16:41–71, 1999 Journal of Clinical Oncology, Vol 22, No 13 (July 1), 2004: pp. 2748-2750 Remember we are NOT Doctors and have NO medical training. This site is like an Encylopedia - there are many pages, many links on many topics. Support our work with any size DONATION - see left side of any page - for how to donate. You can help raise awareness of CAM.