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JNCI Monographs 2001 2001(30):125-129;
© 2001 by Oxford University Press
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Journal of the National Cancer Institute Monographs, No. 30, 125-129, 2001
© 2001 Oxford University Press

Side Effects, Quality-of-Life Issues, and Trade-offs: the Patient Perspective

Amy S. Langer

Correspondence to: Amy S. Langer, M.B.A., National Alliance of Breast Cancer Organizations, 9 East 37th St., New York, NY 10016 (e-mail: alanger{at}nabco.org).

Increasingly effective adjuvant treatments of invasive breast cancer and their widespread use have improved survival rates. Given the timing required by its use, adjuvant therapy requires the patient to absorb complex medical data and make challenging trade-offs shortly after initial diagnosis. However, many women are unprepared or unable to optimize adjuvant treatment decisions while experiencing the shock and dismay that often follow the confirmation of an invasive breast cancer diagnosis. Each woman needs to know the facts and circumstances of her own case and to fully understand the benefits and risks of adjuvant therapy. Only then can she, with her medical team, choose those therapies that will maximize her benefit as a patient and as a survivor in all aspects of her life, over both the short and longer term. To help the patient accomplish these goals, individualized practical knowledge that complements population-based advances in survival is critically needed. Considerable focus, study, and cross-disciplinary collaboration will be required to compile successful, integrated approaches to adjuvant therapy that reflect varying patient contexts and concerns. Other crucial ingredients are the investment of resources in recently established research fields (such as the tracking of psychosocial outcomes and delayed morbidity) and informed guidance from patient advocates. To accelerate patient-centered progress in adjuvant therapy for breast cancer, areas that need attention include targeted public education programs; patient information and informatics; treatment selection and decision-making tools; and interventions and therapies to improve quality of life for patients, survivors, and their families. Underlying all of these efforts should be culturally competent, multigenerational approaches to communicating effectively with diverse patients and family members in multiple clinical and community settings.



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