Most studies of breast cancer survivors have been conducted within the first two years after treatment. Few studies have examined the long-term sequelae of breast cancer diagnosis and treatment. Kornblith and colleagues present data from a 20-year follow-up of breast cancer survivors.

The authors identified 194 women who had been treated for early-stage breast cancer and participated in a trial of adjuvant chemotherapy regimens that closed enrollment in 1980. A total of 153 women (79 percent) were available for follow-up. Trial participants who declined to be interviewed were more likely to be black, older, and older at the time of diagnosis. Interviewees were mailed a packet of survey instruments to complete before the telephone interview. These surveys included screening questions for post-traumatic stress disorder, other psychiatric illnesses, quality of life, nausea and vomiting, sexual dysfunction, employment and insurance difficulties, social support, and use of mental health services.

Clinically significant psychologic distress, defined as a score greater than 1.5 standard deviations above the mean for assessment of cancer-related psychologic, sexual, or socioeconomic difficulties, was present in 5 percent of patients at 20 years of follow-up. Post-traumatic stress disorder was the most commonly reported psychiatric illness, affecting 15 percent of patients. Sexual problems that patients attributed to breast cancer treatment were detected in 29 percent of the women. Patients who were younger at the time of diagnosis were not more likely to report feeling sexually unattractive or to have other sexual problems. Employment difficulties related to breast cancer treatment were reported by 13 percent of patients, and 26 percent reported insurance difficulties such as denial of life insurance and a feeling that they could not change jobs for fear of losing health coverage. The most common physical problems reported 20 years after treatment were lymphedema (39 percent) and numbness of hands, chest, or feet (33 percent). Women with post-traumatic stress disorder were more likely to have residual physical symptoms.