Within the last 30 years, significant progress has been made in the treatment for childhood cancer, and more and more young people are becoming cancer survivors. Sometimes, as these young people grow up, they develop complications related to their cancer treatment. Some people have no complications, but others may develop one or more problems related to their cancer treatment.
Complications can include problems with growth, learning, hearing, vision, the heart, lungs, thyroid gland, reproductive system, digestive tract, kidneys, bones and joints, and second cancers. Many of these complications may not become apparent for years after the treatment. In some cases, preventive measures can be taken to reduce the chances that a complication will occur.
Therefore, continued medical evaluation and follow-up by a team of healthcare professionals knowledgeable about long-term effects of pediatric cancer treatment is expected to be an important addition to routine healthcare for all childhood cancer survivors.
Care is provided by a physician or nurse practitioner who has expertise in childhood cancer and survivorship issues. These professionals work in collaboration with your treatment team and will also communicate with your primary healthcare provider, at your request, if any problems are detected. In addition, referrals are available to specialists or services if needed, based on your individual circumstances.
You will be seen in the long-term follow-up clinic every year. Your medical history and any symptoms you are having will be reviewed with you by the physician or nurse practitioner. You will undergo a physical examination and have screening tests based on the treatment that you received. Additional testing or referrals may be recommended, if needed, based on this evaluation.
The Survivorship Program team members will talk with you about your diagnosis, treatment history, and ways to stay as healthy as possible. You will also receive a written record of your cancer treatment and follow-up recommendations based on your treatment history and specific circumstances. If needed, you will also receive additional information about any treatment-related health problem(s) that you may have, along with recommendations for management of these problems.
A summary of each long-term follow-up visit will be sent to your primary healthcare provider and to your primary treatment team, at your request.
You will be asked to complete several questionnaires as part of the research related to this program. Questions include topics such as your current health status, quality of life, emotional concerns, and cancer treatment. Additional topics include family history, general health, health habits (such as exercise) and general demographic information (such as race and education). Your answers will not only help researchers, they will be used by the Survivorship Program team to assist in determining your ongoing health needs.
Following your visit, the information you provide on the questionnaires, and the results of your evaluation (such as results of blood tests or physical exam findings), will be recorded in a research database. The database is password-protected and secure, and is accessible only to personnel directly involved with this study.
Information entered into the database will eventually be grouped together with information for other patients enrolled in this study and analyzed, so that any significant findings can be reported to the medical community. Individual patient information will not be identified in any of these reports, and any personal information (such as name or date of birth) will be removed before any of this information is released, published or presented at scientific meetings.
The goals of this research are to identify complications of childhood cancer therapy, to develop treatments or preventive measures for these complications, and to develop interventions aimed at improving the quality of life in childhood cancer survivors.
No, the Survivorship Program does not provide primary medical care. Each patient must have his or her own primary healthcare provider, such as a pediatrician, family physician, internist, nurse practitioner or physician assistant, who is available for day-to-day health care needs. The Survivorship Program team is available for telephone consultation with the primary care provider when needed.
For more information, or to determine if you are eligible for the Childhood Cancer Survivorship Program, please contact Claudia Herrera at (626) 471-9220 or email: firstname.lastname@example.org.