Resources and information for parents of children with cancer . . . by parents of children with cancer.

 

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Best resources

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, and updates them periodically. 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: A Practical Guide to Your Future, 3rd ed.

Book by Keene, Hobbie, and Ruccione

Available as a print or ebook.

A must for survivors and for their parents. For more information, visit the publisher's page: Childhood Cancer Guides.

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

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, NCI PDQ

cancer.gov late effects 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.

NCI's Cancer Survivorship Research

dccps.nci.nih.gov/ocs

This NCI webpage lists articles on many topics important to the cancer survivor, inclucing topics specific to childhood cancer survivorship. Among other good links, note the link to the Office of Cancer Survivorship.

Late Effects of Childhood Cancer and Treatment on Medscape/WedMD

emedicine.medscape.com/article/990815-overview

Medscape from WebMD is targeted to health professionals, offering medical information and educational tools. Their coverage of late effects is technical but still readable for the layman. References to journal articles are given.

Beyond the Cure

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.

SurvivorshipCAST

Podcasts

Podcasts on the Leukemia and Lymphoma web site. Also available from iTunes.

Survivor Alert Web site

Survivor Alert

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

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 (#76)

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.

Cancer.net

www.cancer.net

CancerNet is the patient information website of the American Society of Clinical Oncology (ASCO). Navigate to the section on survivorship and then specifically to Childhood Cancer Survivorship for information, additional links, and videos on survivorship.

Lance Armstrong's LiveStrong

LiveStrong

A resource for cancer survivors.

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

Webbugs

Late effects clinic area on the St. Louis Children's Hospital site. Support for families of children off-treatment for cancer. Original 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

youngsurvival.org

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.

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