In 1971, there were less than 3 million cancer survivors living in the United States. In 2004, there were almost 11 million. As these numbers increase, and cancer survivors age and experience the late effects of treatments, new health challenges are faced that “everyday” doctors may not be familiar with. Cancer survivors are often in a position to need to advocate for their health needs in a different way than others.
Cancer Survivorship - Childhood Cancer
- Childhood Survivor Health Clinic Link to childhood survivor health clinics. Survivors of childhood cancer may visit these clinics (no cost) for screenings for late effects. Clinics are listed by state. Adult clinics are also listed at the Livestrong site. In Southern California UCLA has both an adult and childhood cancer survivor clinic.
- Children’s Oncology Group -Guidelines for the care of survivor’s of childhood cancer, download-able for primary care physicians if survivors do not live near a survivorship clinic. Guidelines per type of cancer treatment, late effects possible, symptoms, treatment, and screening necessary. It was in the 70′s and early 80′s that cancer began to be treatable, and children who had these treatments are now getting older and having the late effects. It is this model that the adult guidelines will be based on.
- Cancer Survivorship This is the CDC page on cancer survivorship, on the main page there is also a link to the Spanish translation of the site. Additionally there are resources for primary care physicians who will be dealing with the 10 million cancer survivors and the late effects they face.
- NCI – also has a summary of this article and a list of articles and studies that have been published from this long term/longitudinal study.
- Cancer Survivors Project – 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 is a private organization, founded by cancer survivors experiencing the late effects of treatment even before the research was published. There are many resources to research articles, books, and medical-care guidelines provided here.
Research Articles
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. This is the link to the full text article that the New England Journal of Medicine published in 10/2006 on the Late Effects of Childhood Cancer. (link is to full article)
The Two-Edged Sword of Curing Childhood Cancer , Philip M. Rosoff, MD. New England Journal of Medicine, October, 2006. (link is to full article)
St Jude Long Term Follow Up Study – The Childhood Cancer Survivor Study (CCSS). St. Jude coordinates this on-going long term study. Not an article exactly, but the study on which many of the research is built.
- Dr. Ganz is a UCLA researcher and heads the Adult survivorship clinic there. This book is written for nurses, social workers, mental health professionals and medical providers of service for long term survivors.
Wendy Hobbie & Kathleen Ruccione have been published extensively over the years in the field of childhood cancer survivorship. They- and the other authors have written this book about a multidisciplinary approach to the care of survivors managing late effects. Given recent research, I am sure newer information will be coming out, by these author
Book written for survivors.
