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Patient-Centered Guides

October 2000

Follow-up Clinics for Childhood Cancer Survivors Named

SEBASTOPOL, CA - The University of Texas M. D. Anderson Cancer Center, Texas Children's Hospital, Medical University of South Carolina, Roswell Park Cancer Institute, University of Michigan, Memorial Sloan-Kettering, and Children's Healthcare of Atlanta have been named by Nancy Keene, well-known author of books that help families of children with cancer, and her publisher Patient-Centered Guides, as top aftercare centers for childhood cancer survivors in the United States.

"The powerful drugs and radiation used to cure children affect developing minds and growing bodies," said Keene, co-author of Childhood Cancer Survivors: A Practical Guide to Your Future. "250,000 survivors of childhood cancer live in the U.S. and unfortunately, they are often cured and then ignored."

After years of personally answering hundreds of phone calls and emails from desperate survivors searching for doctors who understood their unique needs, Keene decided to act. To help survivors find the services they need, she surveyed over 100 major children's hospitals across the nation to find out which ones provided comprehensive services to children, teens, and adults who are survivors of childhood cancer. The criteria used included:

  • Institution had a clinic specifically designed to treat survivors of childhood cancer.
  • The clinic had a clinic coordinator (usually a nurse practitioner with special interest and skills in treating survivors).
  • Survivors see a physician or nurse practitioner who are educated and experienced in treating the special needs of survivors with childhood cancer.
  • The clinic refers survivors to specialists (endocrinologists, cardiologists, etc) who are experienced in treating the special needs of survivors of childhood cancer.

Some examples of late effects after cure from childhood cancer are:

  • Breast cancer at an early age in female Hodgkin's survivors who received mantle radiation in their teens.
  • Heart disease after treatment with chemotherapy (anthracyclines) or high-dose chest radiation.
  • Learning disabilities in survivors treated with radiation and/or chemotherapy to the brain.
  • Second cancers from chemotherapy drugs or radiation used to cure the first cancer.
  • Symptoms of posttraumatic stress syndrome in survivors and their parents.
  • Infection with the hepatitis C virus in some survivors who received transfusions prior to 1992.

Survivors need experienced help and advice to make the most of their life after cure. "Many of the 250 emails and phone calls we receive weekly are from survivors," said Ruth Hoffman, Executive Director of The Candlelighters Childhood Cancer Foundation. "Survivors need expert follow-up from trained professionals to improve quality of life through early detection and intervention for late effects from treatment. We now send them this list so that they can get the care they deserve."

About Nancy Keene

Nancy Keene is one of the original developers of the Patient-Centered Guides series. She has been involved with the medical world for over two decades, as a caregiver and a patient. In addition, Nancy spent years advocating for and supporting her young daughter through intensive treatment for acute leukemia. Nancy's previous books on childhood cancer are Childhood Leukemia: A Guide for Patients, Families & Caregivers, now in its second edition, and Childhood Cancer: A Parent's Guide to Solid Tumor Cancers, with Honna Janes-Hodder. Her other books include Working with Your Doctor: Getting the Healthcare You Deserve and Your Child in the Hospital, 2nd Edition.

Nancy spends considerable time talking with parents of children newly diagnosed with cancer and is a tireless advocate of children's medical rights. She frequently speaks at conferences and hospitals and was one of the first three advocates appointed to the Children's Cancer Group (2,800 doctors and researchers who design pediatric clinical trials for the US and Canada).

Childhood Cancer Survivors: A Practical Guide to Your Future
by Nancy Keene, Wendy Hobbie & Kathy Ruccione
$27.95, 482 pages, paperback
ISBN: 1-596592-460-6

About Patient-Centered Guides

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