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This is a list of must-haves for survivors and/or their parents. The three that I consider the most important are listed first (but that's my opinion).
Children's Oncology Group Long Term Follow Up Guideline
COG long-term follow-up guidelines
COG (Childrens Oncology Group) first published this document in 2003. Quite detailed, it 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.
Childhood Cancer Survivors
Book by Keene, Hobbie, and Ruccione
A must for survivors and for their parents. Some of the content of this book is published on the web-based Patient Centered Guides: Childhood Cancer Survivors
Free copies available through the Candlelighters web site.
Childhood Cancer Survivorship: Improving Care and Quality of Life (2003)
Childhood Cancer Survivorship (National Academies Press site)
Childhood Cancer Survivorship (on the Institute of Medicine site, scroll down to the Background Papers to download several PDF papers for the report)
The National Cancer Policy Board (NCPB) and the Institute of Medicine (IOM) wrote this report. Highly recommended. You can view it online, print it one page at a time, or purchase it from the National Academies Press.
Late Effects of Childhood Cancer Therapies, PDQ
On the cancer.gov site. NCI, as usual, has done a thorough treatment of late effects. The listing by body system is useful; I appreciate the literature references with links to PubMed abstracts. Updates to the PDQ are conveniently listed.
Beyond the Cure
An excellent resource for survivors of childhood cancer presented by the N.C.C.S. Partnered with Children's Hospital St. Louis. Current news, discussions of various survivorship issues, survivorship conferences, teleconferences, information on specific late effect. You can build a Personal Profile according to your diagnosis.
Survivor Alert Web site
A project created in association with the film, The 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.
Cancer Survivors Project
http://www.cancersurvivorsproject.org/
The Cancer Survivors Project is an organized, international community of long-term cancer survivors and their friends working together to improve the lives of children and adults after cancer. This page is authored by members of the long-term survivors ACOR list.
Handbook of Cancer Survivorship
Edited by Michael Feuerstein. 504 pp., illustrated. New York, Springer, 2007. $89.95. ISBN 978-0-387-34561-1. This book is written for adult survivors of adult cancers. There is some good information in this book, as reviewed in the NEJM, Volume 356:2552, June 14, 2007, Number 24.
Scottish Intercollegiate Guidelines Network
Long term follow up care of survivors of childhood cancer
A pretty good set of guidelines, worth a visit. Good bibliography.
Childhood Cancer Survivor Study (CCSS)
Childhood Cancer Survivor Study (CCSS)
Currently housed at St. Jude Children's Research Hospital. Survivors of childhood cancer "Long-Term Follow-up Study". This web site does not present a lot of useful information about treatment late effects, instead, it discusses the study and links to some interesting information, plus lists publications. Worth a visit. Participants can update their contact information on the web site.
Childrens Hospital LA
LIFE program at Childrens Hospital, Los Angeles
CHLA launched a survivors' site in Jan 2001. It is specific to survivors and can be of great use to patients and their parents. Editor's note 2/01: the site is highly informative, lists long-term care clinics, has survivors' stories, etc. Definitely worth a visit.
Lance Armstrong's LiveStrong
A resource for cancer survivors.
Outlook Life
Focuses on life beyond childhood cancer.
Long-term Effects of Cancer Treatment, A guide for patients and families.
Margaret Zacharin, Karin Tiedemann, and Maree Sexton, Miranova Publishers, Victoria, Australia, 2001.
This 63 page book has useful information for survivors of childhood cancer. It covers types of cancer treatments, the effect of cancer and its treatment in the brain, deficiencies caused by damage to the pituitary gland and hypothalamus, cancer treatment's effect on specific organs in the body, bone marrow transplantation, sexual function, and general health advice. It also has a treatment summary section to be filled out by the child's doctor or nurse coordinator. This book directs interested readers to in-depth sources of information, such as Childhood Cancer Suvivors (above).
Miranova Publishers (click on featured publications)
Webbugs
Late effects clinic area on the St. Louis Children's Hospital site. Support for families of children off-treatment for cancer. Articles, more, including a survey for parents. (Go to the Patients and Families section and click on the late effects article with survey.)
Young Survival Coalition
Young survivors of breast cancer.
General Disclaimer
These pages are intended for informational purposes only and are not intended to render medical advice. The information provided on Ped Onc Resource Center should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you suspect your child has a health problem, you should consult your health care provider.
contact webmaster/ped-onc home/last updated 7/05