In the past, most survivors of leukemia were on their own after treatment ended. With more long-term survivors, it became apparent that these young men and women often faced complex medical and psychosocial effects from their years of treatment. As a result, many institutions began late effects clinics to provide a multidisciplinary team to monitor and support survivors. The nucleus of the team is usually a nurse coordinator, pediatric oncologist, pediatric nurse practitioner, radiation oncologist, endocrinologist, school liaison, social worker, and psychologist.
The follow-up programs usually include a review of treatments received, counseling regarding potential health risks (or lack thereof), and case-specific diagnostic tests (e.g., hormonal studies or testing for learning disabilities). These follow-up clinics not only provide comprehensive care for long-term survivors, but also participate in research projects that track the effectiveness of and side effects from various clinical trials. In addition, the follow-up clinics act as advocates for survivors at schools, insurance agencies, and employers.
As Grace Powers Monaco, one of the founders of Candlelighters Childhood Cancer Foundation, said:
Life is a hollow gift unless cancer survivors emerge from treatment as competent and worthy individuals, able to obtain insurance, equipped to earn a living, and prepared to participate in a medical surveillance program to "keep" the life they have won.
If your institution does not provide comprehensive, long-term follow-up care, there are several issues that should be addressed at the end of treatment. A discussion of some of these follows.
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