New Resources for Survivors of Childhood Cancer

by Nancy Keene
Source: Spring/Summer 2007 CCCF Newsletter

More than 270,000 children, teens, and adults in the United States are survivors of childhood cancer. The surgery, radiation, chemotherapy, and stem cell transplants used to cure children and teens of cancer can affect growing bodies and developing minds. If survivors know of these potential problems, they can take steps to identify, cope with, or treat them early if they do develop.Several new tools are available to help survivors better guard their hard-won health: (1) a new edition of Childhood Cancer Survivors written for survivors and families, (2) a 2007 list of comprehensive follow-up clinics, and (3) free access granted by the New England Journal of Medicine (NEJM) to text of recent landmark articles about childhood cancer survivors.

Childhood Cancer Survivors

Childhood Cancer Survivors, written by Nancy Keene, Wendy Hobbie, and Kathy Ruccione, is newly published in a second edition. Twenty-five professionals (pediatric oncologists, nurses, attorneys, educators, social workers) reviewed and helped update the text. Survivors and their families contributed their thoughts, suggestions for resources, and experiences. The updated book charts the territory for survivors by providing state-of-the-art information about:

  • Medical late effects from treatment
  • Emotional aspects of surviving cancer
  • Schedules for follow-up care
  • Challenges in the heath care system
  • Lifestyle choices to maximize health
  • Discrimination in employment or insurance

Stories from more than 100 survivors and parents are woven throughout the text. The book also contains a booklet for survivors to maintain a permanent record of their treatment and follow-up needs.

Authors Nancy Keene, Wendy Hobbie, and Kathy Ruccione are experts in the field of childhood cancer. Keene is the mother of a survivor of childhood leukemia and the author of several books including Childhood Leukemia, Childhood Cancer, Educating the Child with Cancer, and Chemo, Craziness & Comfort. Hobbie is Coordinator of the Long-Term Follow-Up Clinic at the Children's Hospital of Philadelphia and co-author of one of the NEJM articles described below. Ruccione is Co-Director of the HOPE (Hematology-Oncology Psychosocial and Education) Program in the Childrens Center for Cancer and Blood Diseases at Children's Hospital Los Angeles.

Childhood Cancer Survivors, 2nd edition, is one of four books on childhood cancer (Childhood Leukemia 3rd edition, Childhood Cancer 2nd edition, Childhood Brain & Spinal Cord Tumors) maintained by a small nonprofit called Childhood Cancer Guides, founded and run by parents of survivors. To learn more about the organization visit www.childhoodcancerguides.org. To order books, call 1-800-998- 9938 ext. 7073 or e-mail lcrandell@oreilly.com. One way you can help survivors learn about the importance of skilled follow-up is to ask your local public library to include these books in their collections. Many people first look to their local libraries for information they want and need.

The 2007 List of Follow-Up Clinics

Children, adolescents, and adults who survived childhood cancer should be seen by specialists in late effects of treatment. Five years ago, several parents of survivors called the 240 hospitals in the United States and Canada that treat children with cancer to find out what services they provided for survivors. Although all of the hospitals checked children for recurrence of disease, few (only 24) provided comprehensive follow-up services. As a result, the parents made a list of minimal criteria for a basic follow-up clinic, including the following:

  • Has a dedicated time and place for the survivors clinic
  • Meets at least twice a month
  • Is staffed by a doctor with experience in the late effects after treatment for childhood cancer
  • Has a nurse coordinator
  • Provides state-of-the-art screening for the individual's risks of late effects
  • Provides referrals to appropriate specialists
  • Provides wellness education

Every year, Nancy Keene and Patty Feist (Candlelighters board member and web master) update the list by calling clinics currently on the list and by reviewing e-mails from clinics asking to be included. The list was recently updated and now includes 40 institutions. Because staffing and financially supporting these clinics is very difficult, we applaud these institutions for putting comprehensive follow up of survivors of childhood cancer high on their priority lists. The 2007 list of follow-up clinics can be found at www.acor.org/ped-onc/treatment/surclinics.html.

New England Journal of Medicine Articles

In October 2006, the New England Journal of Medicine published two articles about medical issues for children cured of cancer:

  • "Chronic Health Conditions in Adult Survivors of Childhood Cancer" by 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. (NEJM Volume 355:1572-1582, October 12, 2006, Number 15).
  • "The Two-Edged Sword of Curing Childhood Cancer" by Philip Rosoff (NEJM Volume 355:1522-1523, October 12, 2006, Number 15).

These articles described results of The Childhood Cancer Survivor Study, which pooled data from more than 10,000 adult survivors between the ages of 20 and 39 and compared their health to that of their siblings. All of the survivors in the study were treated before 1986. The study concluded that more than 60% of adult survivors of childhood cancer have at least one chronic health problem and 28% have a severe or life-threatening condition. In the group that was thirty or more years post diagnosis, 73% had a chronic health condition and 42% had a severe, disabling, or life-threatening condition. Overall, the survivors were found to be much more likely to have health problems than their siblings.

The study conducted by Dr. Oeffinger and others concluded:

As a group, adult survivors of childhood cancer were eight times as likely as their siblings to have severe or life-threatening chronic health conditions.

  • Health problems increase with time and do not appear to plateau.
  • These findings underscore the necessity of continued follow-up of survivors of childhood cancer, with an emphasis on surveillance for second cancers, coronary artery disease, late-onset cardiomyopathy (heart problem), pulmonary fibrosis (lung problem), and endocrine issues (thyroid issues, weak bones, hormone problems).
  • Follow-up care of survivors should also include advice on the importance of not smoking, adequate physical activity, and proper weight management.

Dr. Rosoff's article discusses the importance of lifelong follow-up and ways to increase the knowledge of physicians and nurses who provide health care to survivors. He concludes, "Patients themselves could be empowered by being furnished with a portable document describing their treatment, its potential late complications, and any types of behavior that could diminish their risk of late effects; ... is clear that the effects of childhood cancer - like those of sickle cell anemia, cystic fibrosis, and many other diseases that begin in childhood - do not end when the patient reaches the magic age of 18 or 21 years. Although the child with cancer may be cured, the effects of treatment are lifelong, and we need to study and treat these late effects."

The New England Journal of Medicine graciously gave permission to the Pediatric Oncology Resource Center to link to full text versions of the two articles, which can be found at www.acor.org/ped-onc/survivors.

If you are a survivor who does not see a health care provider who is an expert in the late effects after childhood cancer, tell him or her about these articles. It could help you get the care you need and deserve.

Thank you to Nancy Keene for the writing of this important article.