St. Jude Survivors

    The healing hands of St. Jude Children's Research Hospital reach beyond the walls of the hospital, across the country, and over the span of years. St. Jude doesn’t forget the children who were successfully treated and released to their home physicians. The journey these children began when they were diagnosed does not end when they get their last treatment. That journey continues into young adulthood, and St. Jude is beside them all the way.

    In 1984, St. Jude established the After Completion of Therapy (ACT) clinic to study the medical, psychological and social needs of survivors of childhood cancer. As the number of children who remain in remission and off therapy increases, more young adults face the prospect of long-term complications of their cancer or its treatment.

    Today, as it follows more than 4,000 survivors who have lived cancer free at least five years since completing therapy, the ACT clinic is the largest such clinic in the U.S. and is widely regarded as the best and most extensive such clinic in the world.

    The mission of the ACT clinic is to improve the quality of life for long-term survivors of childhood cancer. Staff members screen survivors for both physical and emotional difficulties and, if necessary, help them find specialized care. Patients are referred to the clinic if they remain in remission for two or more years after completing therapy, and are evaluated annually at St. Jude until they are 10 years from diagnosis or at least 18 years of age. Once patients reach this milestone, St. Jude continues to contact them annually to follow up and provide support.

    In addition to confirming continued remission, patients attending the ACT clinic receive:

    • Monitoring for late side effects of cancer therapy – Potential adverse physical effects of cancer on specific organs (for instance, the brain, heart, lungs and thyroid gland) that may affect the quality of survival or predispose the survivors to later health risks.

    • Psychological assessments – Evidence of how the “cancer experience” has psychologically impacted patients’ performance in school or the workplace, how they are adjusting emotionally to any physical disabilities caused by the cancer, and how the experience has affected their relationships with family and peers.

    • Ongoing patient health and risk education –Information on health risks that specific cancers and treatments might create later in life, such as second cancers, cardiovascular diseases and other health problems, and promotion of good health practices that minimize risks.

    • Transition to adult care – Assisting transition from pediatric care to adult health care as they get older and leave the clinic. ACT physicians work closely with community physicians to assure they are aware of each survivor’s previous cancer treatment and any associated health risks, and to alert them to the need for performing specific medical evaluations as the survivor ages. Survivors who experience complications related to cancer or to late effects of treatment are invited back to St. Jude for follow-up appointments.

    This dedication to childhood survivors continually pays off as St. Jude researchers identify the long-term triumphs of good clinical care and the sometimes life-threatening complications of the cancer experience.

    In 2003, St. Jude announced one of those triumphs in the prestigious New England Journal of Medicine, when researchers reported that survivors of childhood acute lymphoblastic leukemia (ALL) who have not received radiation treatment as part of their therapy have virtually the same long-term experiences as the general population. Patient who received radiation, however, need long-term monitoring for early diagnosis of second tumors. The study also concluded that the term “cure” for ALL patients should mean 10 or more years of complete remission rather than the almost universally accepted time of five years.

    The ACT clinic’s accomplishments are now an integral part of national guidelines for screening and managing the late effects of survivors of pediatric cancer. Melissa Hudson, MD, director of the ACT Clinic, co-chaired the task force that established the guidelines. These guidelines help physicians promote healthy lifestyles among patients, provide for ongoing monitoring of their heath, facilitate early identification of late effects of therapy and provide timely medical care for late effects.

    The impact of these guidelines will be significant: An estimated 270,000 survivors of childhood cancer live in the U.S., and one in 570 young adults age 20 to 34 is a childhood cancer survivor. Now these survivors can be assured that special plans are in place to help physicians not only respond to their needs, but actually anticipate them. Published in 2004, the guidelines are available at www.survivorshipguidelines.org.

    The founding tenet of St. Jude, that no child should die in the dawn of life, now enjoys broader significance in the ACT Clinic, which insists that no child should be forgotten after treatment is finished.

    One additional way St. Jude supports its patients is through its annual Survivors Day conference, which includes educational workshops, informative lectures and fun events for patients. This year's event, which is expected to attract about 500 people, will occur Saturday, June 4, 2005.

     

    May 2005

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