LONG TERM FOLLOW-UP CLINICS FOR SURVIVORS OF CHILDHOOD CANCER
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. 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
- Comprehensive Follow-Up Programs: A Necessity not a Luxury
- Who Benefits from Surveillance Imaging? (Journal of Clinical Oncology Editorial)
- Eunice Kennedy Shriver National Institute of Child Health and Human Development(1)
- Bone Health after Childhood Cancer
- Cognitive Late Effects in Leukemia Survivors
- Cognitive Late Effects To The Brain
- Late Effects to the Heart: Anthracyclines and Radiation
- Late Effects of Treatment to the Teeth
- Late Effects to the Thyroid Gland
- Second Malignancies?
- Hepatitis C
- The Problem of Pain in Childhood Cancer Survivors
- Stories from Adult and Child Survivors Who Have Suffered with Chronic Pain
- New Resources for Survivors of Childhood Cancer
- Suicidal Thoughts and Attempts in Adult Survivors of Childhood Cancer Survivors
- Health-Related Outcomes for Hodgkin Disease Survivors
GENERAL SURVIVORSHIP LINKS
Childhood Cancer Survivorship (National Academies Press site) Childhood Cancer Survivorship: Improving Care and Quality of Life (2003)
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.
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.
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.
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.
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 the ACCO permission 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.
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