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Survivor Issues: Directory of Information on this Ped-Onc site
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.
Time-sensitive announcements:
Free sessions for young adult survivors at Camp Mak-A-Dream:
- The Young Adult Conference (YAC), June 2-8, is for 18-40 year olds diagnosed with cancer
- The Heads Up Conference (HUC), June 11-17, is for young adult brain tumor survivors
- more information at Camp Mak-A-Dream
Beyond the Cure web conferences, March 2013:
- Session 2: Progress in the treatment of Late Effects
Date: Tuesday, March 26, 2013 2-3-pm CT
Speaker: Daniel A. Mulrooney, MD, MS - Session 3: Fertility Issues; Options and Preservation
Date: Thursday, March 28, 2013 2-3 pm CT
Speaker: Laura Detti, MD
Special announcement:
The new Edition of a classic by Nancy Keene, Wendy Hobbie, and Kathy Ruccione: Childhood Cancer Survivors: A Practical Guide to Your Future is now available in bookstores and from online booksellers. Click on the image for more details.
Best resources
COG Long-Term Followup Guidelines
More web sites and printed materials for survivors' and for their parents.
Important NEJM survivorship articles:
The New England Journal of Medicine graciously gave permission to the Ped-Onc Resource Center to link to full text versions of two important 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.
Online Lay Articles
We have gathered quite a few articles that are published online on general survivors' late effects issues:
Bibliography of Journal Articles on Late Effects
On this ped-onc site: Bibliography: Late Effects
Follow-up Programs for Survivors of Childhood Cancer
Children who have been treated for cancer should be seen by specialists in late effects of childhood cancer. A good article on this topic is in the Fall 2002 the Candlelighters Newsletter on the ACCO web site: Comprehensive Follow-Up Programs: A Necessity not a Luxury. We keep a list of late effects clinics (thanks to Nancy Keene) on this ped-onc site:
Cognitive Late Effects of Treatment, and Education
A section of this ped-onc web site that contains both original material and links to articles on cognitive late effects of treatment for childhood cancer:
Employment for Survivors of Cancer
In 2012, a website came online that helps survivors of cancer find jobs. Check Jobs for Survivors for more information.
Specific Late Effects
For each of the topics below (and for any that are not listed below), also check the selected health links offered on survivorshipguidelines.org.
Late Effects to the Heart The late effects of chemo and radiation on the heart. A section on this Ped-Onc Website.
Leukoencephalopathy Leukoencephalopathy, or also called multifocal demyelinating disease, is the destruction of the myelin sheaths that cover nerve fibers. The link takes you to a section on the topic on this Ped-Onc Website.
Secondary Cancers. Survivors are at some risk for secondary malignancies. Besides the article below, check the Survivorship Guidelines and also the bibliography of journal articles on survivorship issues on this Ped-Onc Website. (Search the bibliography for "second".)
- Second Malignancies? by Nancy Keene and Kevin Oeffinger M.D. in the Spring 2000 Candlelighters Newsletter on the ACCO web site
Sports-pads protection Some survivors with only one kidney. The link takes you to a section on how some parents have dealt with this issue. On this Ped-Onc Website.
Late Effects to the Teeth Late effects of chemotherapy and radiation treatment on teeth. The link takes you to a section on the topic on this Ped-Onc Website.
Obesity The survivors' bibliography on this Ped-Onc Website includes quite a few articles on obesity post-treatment. Search the page for "obesity".
Asplenia Some survivors do not have a spleen and must take certain precautions. The link takes you to a section on the topic on this Ped-Onc Website.
Bone Health
- Avascular necrosis on this Ped-Onc Website
- Bone Health after Childhood Cancer Spring 2002 Candlelighters Newsletter on the ACCO web site
Peripheral Neuropathy Chemotherapy-induced Peripheral Neuropathy, an article in the NCI Cancer Bulletin, February 23, 2010, Volume 7 / Number 4, by Brittany Moya del Pino. The link takes you to a full-text article written in lay terms.
Pain The Problem of Pain in Childhood Cancer Survivors, article in the Fall 2005 Candlelighters/ACCO Newsletter.
Thyroid
- Late Effects to the Thyroid Gland in the Spring 2001 Candlelighters Newsletter (on the ACCO site)
- The Journal of Clinical Endocrinology & Metabolism site: Diagnosis of Hidden Central Hypothyroidism in Survivors of Childhood Cancer
Fertility Preservation of fertility for both males and females.
Suicidal Thoughts and Attempts in Adult Survivors of Childhood Cancer Survivors Article in the Fall/Winter 2007 CCCF Newsletter.
Disabilities
- The Americans With Disabilities Act by Mary Helmreich in the Fall 1999 Candlelighters Newsletter
Hepatitis C
- Hepatitis C in the Fall 1999 Candlelighters Newsletter on the ACCO web site or read it on this ped-onc site
Late Effect to the GI Tract
A lay article in UCSF news, 2011
College Scholarships
One of the most extensive listing of scholarships for survivors of childhood cancer:
Blog(s)
Currently, only one:
- Surviving surviving Angie, a 30-something survivor of Metastatic Ewings Sarcoma, keeps a readable and informative blog on the issues of long-term survivorship.
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.
4YOUth. This list is for preteens, teens, and young adults who had cancer. Posts to the list are private and confidential i.e., they will not be publicly available outside the list as it is essential that the kids feel safe in posting. In order to subscribe, go to the 4YOUth link and click on "Join the list". If you have any questions, please contact the administrators at 4YOUth-request@acor.org.
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.
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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