Late Effects

The majority of children diagnosed with cancer will survive. However, survivorship can come with a price in the form of long-term medical, psychosocial, and/or neurocognitive problems due to chemotherapy, radiation, or surgery.

Long Term Follow-up Clinics for Survivors of Childhood Cancer

Children who have been treated for cancer should be seen by specialists in late effects of childhood cancer. A list of late effects clinics is kept on the ped-onc resource center (thanks to Nancy Keene):

Articles on Survivorship

Beating Cancer as a Kid, Only to Fight It Again as an Adult

General Survivorship Links 

Children's Oncology Group Late Effects Guidelines

This site provides a comprehensive PDF document that lists the recommended follow-up for each type of chemotherapy or radiation treatment. Use this document to look up possible late effects of your treatment and take it to your primary care physician to help him/her direct your treatment. The site also provides Health Links for a plethora of health issues, including eye health, dental health, thyroid problems, heart health, etc. The Late Effects Guidelines are updated periodically.
Review 4/07

Institute of Medicine (IOM)

Childhood Cancer Survivorship: Improving Care and Quality of Life (2003)

A report from the Institute of Medicine (IOM). While this report might not help with specific late effects concerns, it covers the myriad issues of childhood cancer survivorship.
Review 4/07

Childhood Cancer Survivorship (National Academies Press site)

Childhood Cancer Survivorship: Improving Care and Quality of Life (2003)
Review 4/07

National Cancer Institute (NCI): Late Effects of Childhood Cancer Therapies

Late effects are discussed by treatment agent and also by body system. Literature references are provided with quick links to PubMed abstracts. The latest updates to this PDQ are conveniently listed.
Review 4/07

Ped-Onc Resource Center

Comprehensive section on survivorship issues, including some original content (late effects to the heart, cognitive late effects, sports pad protectors, avascular necrosis, leukoencephalopathy), a growing bibliography of journal articles with links to PubMed abstracts, the listing of late effects clinics, links to scholarships, and links to pertinent web sites.
Review 4/07

Beyond the Cure

An excellent resource for survivors of childhood cancer presented by the National Children's Cancer Society (NCCS). Partnered with Children's Louis. Current news, discussions of various survivorship issues, survivorship conferences, teleconferences, information on specific late effects. You can build a Personal Profile according to your diagnosis. Beyond the Cure sponsors teleconferences on topics of interest to childhood cancer survivors and their parents.
Review 4/07

Survivor Alert

Survivor Alert is sponsored by A Lion in the House. Survivor Alert offers information on survivorship issues, such as who is at risk, how to get health insurance, how to get your medical records, choosing a healthy lifestyle, and practical matters. It also provides links to studies on childhood cancer survivorship issues.
Review 8/07

Outlook: Life Beyond Childhood Cancer

The focus of Outlook is to address the needs of survivors of childhood cancer and their families. By providing information we hope to give survivors and their families the tools to help them become their own advocate.

LIFE Program at Children's Hospital LA

Long-term, Information Follow-up and Evaluation Program at Childrens Hospital Los Angeles. The LIFE Program is designed to meet the needs of long-term survivors of childhood cancer and their families. With medical advances, many more children and teenagers survive a diagnosis of cancer. The health needs and concerns of survivors differ from patients who are on treatment. Survivors require follow-up by specialists in late effects of cancer treatment. The web site is highly informative, lists long-term care clinics, has survivors' stories, etc. Definitely worth a visit.

Living Beyond the Sword of Damocles: Surviving Childhood Cancer

Brad J. Zebrack, Ph.D., M.S.W. and Lonnie K. Zeltzer, M.D.

As a result of advances in diagnostic and treatment technologies and the coordination of childhood cancer treatment protocols via clinical trials, 3 of every 4 children and adolescents diagnosed and treated for cancer will attain complete remission and cure. In an era in which good health is not just the absence of disease but also the presence of psychological and social well-being, have these advances in pediatric oncology resulted in what van Eys called a "truly cured child"? Furthermore, what about the family? Do we really understand the full impact of having a child, brother or sister diagnosed and treated for cancer? Answers to these questions have the potential to define comprehensive and quality cancer care for this population in that the delivery of health care services must attend to the immediate and long-term health and well-being of childhood cancer survivors and their families.

New England Journal of Medicine Articles, 2006, Full Text Links

Results of the Childhood Cancer Survivor Study (CCSS) were published in several articles in 2006. CCSS followed 14,370 five-year survivors of childhood and adolescent cancer diagnosed between 1970-1986 and a sample of 3,737 sibling controls. (For more information on the Childhood Cancer Survivor Study (CCSS), click here.) The New England Journal of Medicine graciously gave permission to Candlelighters to link to full text versions of the two October 2006 articles. Click on each title to go to the specific article.

Chronic Health Conditions in Adult Survivors of Childhood Cancer. Kevin C. Oeffinger, M.D., Ann C. Mertens, Ph.D., Charles A. Sklar, M.D., Toana Kawashima, M.S., Melissa M. Hudson, M.D., Anna T. Meadows, M.D., Debra L. Friedman, M.D., Neyssa Marina, M.D., Wendy Hobbie, C.P.N.P., Nina S. Kadan-Lottick, M.D., Cindy L. Schwartz, M.D., Wendy Leisenring, Sc.D., Leslie L. Robison, Ph.D., for the Childhood Cancer Survivor Study, NEJM Volume 355:1572-1582, October 12, 2006, Number 15.

The Two-Edged Sword of Curing Childhood Cancer. Philip Rosoff, NEJM Volume 355:1522-1523, October 12, 2006, Number 15.

ACCO Books

Childhood Cancer Survivors: A Practical Guide to Your Future, 3rd ed.

Kathy Ruccione, Nancy Keene, Wendy Hobbie. Covers the issues of long- term survivorship: medical late effects, relationships, overcoming employment or insurance discrimination, maximizing health, follow-up schedules. Available at no cost through American Childhood Cancer Organization