Women who feel confident in their abilities and know how to manage stress are more likely to follow the advice of experts on how to reduce their risk of lymphedema.

Lymphedema is an incurable build-up of fluid in the lymph nodes after surgery for breast cancer that can cause swelling and affect range of motion. In severe cases, it can be quite painful. The rate of lymphedema can vary, but as many as half of women will develop the side effect after undergoing surgery to remove breast cancer.

“Lymphedema affects everything you do, whether you’re inside washing dishes, or outside trying to pick up a bag of groceries, your child, or your briefcase,’ said Suzanne M. Miller, PhD, of Fox Chase Cancer Center in Philadelphia. “It’s a very salient condition.”

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There is no treatment for lymphedema, so the best thing women can do is try to reduce their risk of developing it in the first place, says Miller. Avoiding infections, burns, muscle strain, constrictions of their arms, and weight gain can help. Part of the struggle for women is that changing their behavior is a daily reminder of their breast cancer. Miller explained, “Taking precautions requires attending to the fact they had cancer, which makes many women depressed and anxious.”

To investigate what helps women make such dramatic behavior changes, the investigators met 103 women immediately after breast cancer surgery to discuss lymphedema and their attitudes about it. The research team provided the women with materials from the American Cancer Society (ACS) on how to reduce their risk. Then, they checked in with the women later to see how well they had adhered to the advice.

Six months later, only 50% of the women appeared to be diligently following the recommendations. Daily behavior changes, like wearing gloves when doing household chores or using an electric shaver, were the hardest to maintain.

An important factor in the rate of adherence was the women’s attitude. Specifically, women were most likely to take steps to reduce their risk of lymphedema if they felt confident that they could physically follow the recommendations, believed that these behaviors would control their risk, and had strategies to cope with stress. For instance, says Miller, a woman needed to feel confident she wouldn’t forget to put on gloves every time she did housework, and could calm herself down if these permanent changes in behavior created anxiety about being a cancer survivor.

These findings suggest clinicians should provide additional tools to help women adhere to expert advice, suggests Miller, including finding ways to track what they do and reward themselves, seeking out stories of women who are coping with the same challenges, joining support groups, and learning relaxation techniques. Further, clinicians should talk to families so everyone is on board with a woman’s “new normal.”

This research was presented at the ATRC-AACR San Antonio Breast Cancer Symposium, held December 4-8, 2012.