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Nursing Excellence

The Online Newsletter for Children's Nurses
e-Edition, Issue 10 

Jocelyn Alsdorf

Surviving Childhood Cancer

By Jocelyn Alsdorf, MSN, RN, CPON

We are all very familiar with the face of childhood cancer; their bald heads, pale skin, and courageous grins greet us daily in the hospital corridors. We understand the difficulties faced during treatment and the immediate, visible and profound effect it has on a child’s health. We celebrate their remission and are thankful for the success that pediatric oncology providers have had in treating cancer, where with enhanced therapies and improved methods of supportive care, nearly 80 percent of children treated for cancer will become long-term survivors.1

However, with these improved rates of survival comes acknowledgement that the effects of these therapeutic modalities may persist long after a cancer patient’s hair grows back and the central line is removed. A myriad of research has shown that cancer and its treatment predispose childhood cancer survivors to treatment-related complications, such as neurocognitive disorders, cardiopulmonary dysfunction, endocrinopathies, psychological problems, and secondary malignancies, all of which may significantly impact the physical and social development of the survivor.2 These late complications can lead to lingering health conditions, with 62.3 percent of survivors reporting at least one chronic ailment and 27.5 percent being followed for a severe or life-threatening condition.3 Sadly, most survivors are unaware or undereducated regarding possible late effects and methods of reducing their personal risk, illustrating a huge missed opportunity for mitigation of known comorbities.4

Children’s Oncology Group (COG), the world’s largest, cooperative children’s cancer research partnership, has recognized the impact of this issue. They have created a set of guidelines to address the expanding population of childhood cancer survivors and the profusion of health issues that may occur after treatment for childhood malignancies. The COG late effects guidelines provide algorithms and recommendations for screening and management of medical conditions that may potentially emerge as a result of therapeutic exposures employed during a child’s treatment for cancer. These evidence-based guidelines were created after a panel of experts in the long-term complications associated with pediatric cancer treatment recognized the lack of a model for management of late effects. They came together to capitalize on their collective clinical experience and a growing body of research demonstrating the possible long-term consequences associated with pediatric cancer therapy.

The “COG Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers” are now used in pediatric oncology programs throughout the nation, including our Late Effects/Survivorship Program here at Children's Hospital Central California. Launched in Jan. 2010, the program follows any childhood cancer survivor under age 21 who is at least three years from the end of therapy, regardless of where they were originally treated for cancer. Participants are seen annually in the oncology clinic. Before the initial visit, a complete review of the survivor’s entire childhood cancer treatment history, including cumulative doses of chemotherapy and radiation, any complications or toxicities that occurred during therapy, as well as an assessment of the child’s current state of health is completed. The appointment also includes risk-based diagnostic testing to assess the survivor’s risk for treatment-related medical problems, as well as a focused physical exam. The child’s learning, vocational and social issues are reviewed for signs of possible treatment-related deficiencies. Education on the survivor’s individual risk for late effects, based on the child’s personal medical history and cumulative therapeutic exposures, is provided. Participants are also offered dietary counseling, a psychosocial evaluation, screening schedules for secondary cancer detection, and assistance with planning for the eventual transition to adult care. Referrals to subspecialists are made if problems are detected or further testing is indicated.

After the visit is completed, a treatment summary and specific follow-up plan with individual recommendations for future screenings is prepared for both the patient and any medical providers currently caring for the child. The survivor will return to the clinic on an annual basis until age 21 and then will be transitioned to the adult provider of his/her choice, with an emphasis on maintaining continuity of care and connecting the patient with any special medical services he/she may require as an adult. 

Survivorship Care is a newly emerging science. Though major progress in identification and prevention of the consequent health disparities of cancer treatment has been attained, much work remains to be done. The goal of a program like ours remains two-fold; 1) prevention and early identification of future chronic illness in our current young survivors and 2) contribution to the research focused on abatement of late effects for those yet to be diagnosed with a childhood cancer. As the attention paid to these issues grows, so do the opportunities to contribute to this young field of study. With the addition of a focused oncology late effects/survivorship clinic to its breadth of programs, Children's Hospital Central California has positioned itself as one of the pioneers of childhood cancer survivorship research.

“The ultimate goal of pediatric oncology has been – and remains – to ensure not only the health, but also the psychosocial and economic well-being of children cured of malignant diseases.”
                                                                                     Giulio J. D’Angio, MD5


1 Mariotto A.B., Rowland J.H., Yabroff K.R., Scoppa S, Hachey M, Ries, L. & Feuer E.J. (2009). Long-term survivors of childhood cancers in the United States. Cancer Epidemiology, Biomarkers & Prevention, 18 1033–1040.

2 Shankar S., Robison L., Jenney M., Rockwood, T., Wu, E., Feusner, J., Friedman, D., Kane, R., & Bhatia, S. (2005).Health-Related Quality of Life in Young Survivors of Childhood Cancer Using the Minneapolis-Manchester Quality of Life-Youth Form. Pediatrics, 115(2) 435-442.

3 Oeffinger, K.C., Mertens, A.C., Sklar C.A., Kawashima T., Hudson, M.M., Meadows, A.T., Friedman, D.L., Marina, N., Hobbie, W., Kadan-Lottick, N.S., Schwartz, C.L., Leisenring, W., Robison, L.L. (2006). Chronic health conditions in adult survivors of childhood cancer. NewEngland Journal of Medicine, 355(15), 1572-82.

4 Nathan, P.C., Greenberg, M.L., Ness, K.K., Hudson, M.M., Mertens, A.C., Mahoney, M.C. Gurney, J.G., Donaldson, S.S., Leisenring, W.M., Robison, L.L., Oeffinger, K.C. (2008). Medical care in long-term survivors of childhood cancer: a report from the childhood cancer survivor study. Journal of Clinical Oncology, 26(27), 4401-9.

5 Schwartz, C.L., Hobbie, W.L., Constine, L.S., Ruccione, K.S. (Eds.). (2005) Survivors of Childhood and Adolescent Cancer: A multidisciplinary approach (2nd ed.). St. Louis, Missouri: Mosby-Year Book, Inc.


In This Issue

Becoming The BEST

Evidence, Research and Quality Improvement in Clinical Practices

Intentional Care of the Spirit - A Nurse's Gift to Her Community

A Nursing Career - Challenges in Care for Ourselves

Nephrology and Peritoneal Dialysis Clinical Nursing: What Goes On In Here?

Surviving Childhood Cancer

Necessity is the Mother of Re-Invention

Patient Satisfaction Comments