According to the American Cancer Society, nearly 200,000 women in the United States will develop breast cancer this year. However, few people realize that half of those women will develop lymphedema, a condition in which significant, persistent and painful swelling occurs, most often in the arm. A team of University of Missouri-Columbia researchers has discovered that women with lymphedema not only experience a much broader array of physical and psychological difficulties than previously reported but were rarely informed by their doctors of the possibility of developing the condition.
"One of the most surprising and significant stressors indicated by almost all the women was the perceived lack of care and concern from many of the health-care providers, particularly the medical doctors," said Puncky Heppner, project leader and chair of MU's department of educational, school and counseling psychology. "Many indicated they were not informed of lymphedema at any time during their medical care for breast cancer, which is alarming because this condition predisposes the women to infection, which can easily become life-threatening."
Heppner and his team conducted interviews with Midwestern, Caucasian women, ranging in age from 47 to 87, with breast cancer and lymphedema. Due to lymphedema, some women had difficulty sleeping, carrying items, exercising, including walking, and fitting comfortably into clothes.
Heppner noted that lymphedema had a psychological impact as well. Women experienced a complete loss of interest in dress and appearance, sexual and interpersonal relations, occupational aspirations and self-esteem.
"This neglect of lymphedema by health care providers has not only meant that women go undiagnosed and fail to receive basic preventive information but also has inhibited the development of effective psychosocial interventions," Heppner said.
When women were aware they had lymphedema, Heppner found, they actively sought information or treatment options and developed and learned physical strategies to manage the condition. They tried to accept their limitations brought on by lymphedema and focused on the positive aspects of their lives in order to cope with their distress.
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