Counseling Needed to Allay Fear of Lymphedema in Breast Cancer Survivors

Individualized education and counseling should begin before surgery and continue throughout treatment for breast cancer survivors fearful of developing lymphedema, especially younger patients and those at higher risk after axillary lymph node dissection (ALND), a recent study found.

More than 300 patients undergoing treatment for unilateral breast cancer were screened for lymphedema before and every 3 to 8 months after surgery and asked to fill out questionnaires assessing their fear. Higher preoperative fear score, age younger than 50 at diagnosis, and ALND were significantly associated with higher mean postoperative fear scores. The findings were published in the September issue of Oncology Nursing Forum.

“If and when fear of lymphedema is identified, nurses should evaluate whether that fear generates appropriate proactive behavior to prevent lymphedema or whether it negatively affects the survivor’s physical or mental state,” the authors wrote. “In the latter case, such fear should alert nurses to counsel, educate, reassure, support, and reassess the patient on an ongoing basis.”

The findings indicate that lymphedema-characterized by abnormal accumulation of fluid in the interstitial spaces of the arm, hand, shoulder, breast, or chest wall-is  distressing to many women regardless of whether or not they develop the condition, the authors said. In addition to physical symptoms such as swelling, heaviness and discomfort, and an increased risk of infection, many women experience psychological distress leading to poor body image, lower self-esteem, and increased anxiety.  

The study found that women with higher preoperative fear scores remained fearful after surgery, possibly due to heightened sensitivity from frequent education and screening throughout their treatment or hearing about the experiences of other patients who developed the condition.

Women who underwent ALND had significantly higher mean postoperative fear scores than women who had sentinel lymph node biopsy or no surgery, reflective of the fact that ALND is a commonly known risk factor for lymphedema. Although there is no consistent association between younger age and risk of lymphedema, younger women may be especially concerned about living for many years with a condition that has no definitive cure.

“Because of its difficulty to predict, lack of definitive treatment, and negative impact on quality of life, many survivors fear developing lymphedema,” the authors said.

Those fears lead many women to engage in risk-reducing behaviors that have not been proven effective and could be harmful, they added. For example, many women have been told to avoid strenuous upper-body activity when evidence suggests that upper-body weight exercise may decrease risk of lymphedema and that exercise improves overall quality of life, the authors said.

“Women who limit use of their upper extremities from fear of lymphedema may not only compromise their quality of life, but also expose themselves to the potential consequences of inactivity,” they said. “These include prolonged arm weakness, functional compromise, and weight gain.”

Education starting preoperatively and extending past surgery can help assuage women’s fears and help them develop realistic strategies to improve quality of life. Since patients’ fears persisted past the 2-year mark, the authors recommended meeting with survivors at 24 months post-surgery to re-educate them about the risk of lymphedema and mitigate unnecessary fears.