Long-Term Survivors Program

Kathy Ruble, Director

ABOUT SURVIVORSHIP
The overall cure rate for childhood cancer has risen to nearly 80% and there are over 270,000 survivors nationwide.  Promoting and maintaining the health of childhood cancer survivors is the goal of the Survivorship Program at Johns Hopkins.  Most survivors are healthy, but as many as two thirds will have at least one long-term complication from treatment.  The faculty and staff of the Survivorship Program at Johns Hopkins have over a decade of experience in monitoring and treating long-term complications associated with the chemotherapy, radiation, surgery and other treatments used for childhood cancer and non-malignant diseases. Early diagnosis and treatment of long-term complications ensures optimal health outcomes for survivors.  National recommendations suggest all childhood cancer survivors receive oncology specific follow-up care.

Visit the Leukemia Survivors Program

A VISIT TO THE SURVIVORSHIP PROGRAM AT JOHNS HOPKINS
Prior to the first visit, the treatment records are reviewed and a treatment history is developed.  This treatment history includes information on diagnosis, a list of chemotherapy agents (including cumulative doses when appropriate), radiation doses and sites, surgical history and bone marrow transplant details.

Using information from the treatment history, survivorship guidelines and expert clinical experience  are used to develop individual plans of care for each survivor.  These individualized plans of care outline the tests and exams necessary to monitor for long-term complications.

Some examples of follow-up include:
1. Echocardiograms and EKGs are necessary after chemotherapy agents including, but not limited to, Doxorubicin (Adriamycin), Daunorubicin (Daunomycin) and radiation to the chest.  The frequency of these exams are dependent on the total amount of these treatments  and the age of the child at the time of treatment.

2. Laboratory measures of hormones, physical exams and bone age x-rays are important to evaluate growth and development after treatment for childhood cancer.

3. Bone mineral density should be evaluated after treatment with steroids, bone marrow transplant and for patients with abnormal endocrine function to ensure appropriate bone strength and avoid osteoporosis.

Some long-term complications require interventions including medication, which will be prescribed and monitored by the faculty at the Survivorship Program at Johns Hopkins.  Other complications may require additional evaluation by subspecialities such as cardiology, pulmonology, endocrinology etc.  Johns Hopkins Hospital gives survivors access to experts in all areas of childhood healthcare with extensive experience in managing the complications of childhood cancer.

In addition to monitoring and treating  long-term complications, the Survivorship Program at Johns Hopkins  provides information on health promotion activities to decrease the risk for developing complications. Recommendations for diet, exercise and other healthy behaviors will help survivors maintain the best possible physical functioning and quality of life.

HOW TO PARTICIPATE/WHAT TO EXPECT
If you were treated at Johns Hopkins you can call the clinic at 410-955-8751 and ask for an appointment in the Survivorship Program at Johns Hopkins.  Prior to the visit the treatment history will be generated.  At the visit the history will be reviewed and potential long-term complications will be discussed.   In addition, the plan for future tests and follow-up will be outlined (most survivors are seen yearly). 

If you were treated at another institution you may contact Latoya Ludd, Program Coordinator, at 410-502-7555 to assist in obtaining treatment records from the treating institution.   There is no upper age limit to be seen in the Survivorship Program at Johns Hopkins, but in general treatment should have occurred prior to 23 years of age. 

For further questions you may contact Latoya Ludd, Program Coordinator at 410-502-7555 or Kathy Ruble, Program Director at rubleka@jhmi.edu.