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
PUBLICATION DATE: March 2001
About Patient-Centered Guides
Patient empowerment is at the core of Patient-Centered Guides.
We believe that people are empowered when they have the
knowledge and skills to partner with their doctor or
healthcare provider to get the best medical care possible.
We publish books that contain clear, concise, easy to understand
information about the medical, practical and emotional aspects of
health issues. Our authors are experts in specific
conditions and diseases and are the driving forces behind building
strong and networked communities of patients, families and caregivers.
In addition to our books, we publish information
on the web.
Our site is an extension of our mission
to empower individuals to become informed health-conscious consumers.
Patient-Centered Guides is a division of O'Reilly & Associates,
Inc. O'Reilly is recognized worldwide for its technical books
that fill a void and provide value to people who are experiencing
information pain. O'Reilly publishes books that make a difference
in people's lives.
