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

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Survivor Issues

Thankfully, 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.


The first two are my favorites.

Children's Oncology Group Long Term Follow Up Guidelines

COG Long-Term Followup 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 edition, 2012
Childhood Cancer Guides

Print book (or e-book) by Nancy Keene, Wendy Hobbie, and Kathy Ruccione is available in bookstores and from online booksellers. A fantastic, comprehensive, readable resource for childhood cancer survivors and their parents.

Also see: Childhood Cancer Survivors Facebook page for important and current updates on survivorship issues.

Online Support Groups

Ped-Onc Survivors The PED-ONC SURVIVORS listserv discusses all aspects of survivorship. This discussion group provides an opportunity for parents and family members of childhood/adolescent cancer survivors to share ideas, information and support. Parents, siblings and survivors of childhood/adolescent cancer face unique challenges. The effects and consequences of a life threatening illness on family, siblings and marriage are many. Some parents may find that these concerns do not abate post-treatment. Parents and survivors may face social challenges (school, insurance and eventually employment), some will have emotional challenges (depression and anxiety post treatment), and some parents will be concerned about late effects and ongoing health problems related to treatment. This discussion group addresses the unique needs of parents, the family and survivors.

Long-Term Survivors Long-Term Survivors Long-term survivors of cancer face unique problems. Most will face social challenges (insurance and employment), some will have emotional challenges, and some will have ongoing health problems related to treatment. This discussion group addresses the unique needs of this group.

Follow-up Programs for Survivors of Childhood Cancer

Survivors' Clinics (on this ped-onc website)

Children who have been treated for cancer should be seen by specialists in late effects of childhood cancer.

College Scholarships

College scholarships for survivors

One of the most extensive listing of scholarships for survivors of childhood cancer.

Bibliography of Journal Articles on Late Effects

Bibliography: Late Effect (on this ped-onc website)

I keep an extensive bibliogarphy of late effects with links to pubmed abstracts and full text if possible.

Childhood Cancer Survivorship: Improving Care and Quality of Life

Childhood Cancer Survivorship (National Academies Press site, 2003)

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 late effects PDQ

On the 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.

NCI's Office of Cancer Survivorship

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

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

An excellent resource for main of childhood cancer presented by the N.C.C.S. Partnered with Children's Hospital St. Louis. Survivors' stories, survivorship conferences, and information on specific late effects.

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.

St. Jude Children's Research Hospital

Survivors of childhood cancer "Long-Term Follow-up Study" website. Latest results, publications, newsletters, and links to resources.

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.

© copyright 1998-2018 by Patty Feist

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