Attitudes predict ability to follow post-treatment advice

These findings suggest that clinicians must do more than just inform women of the ways they should change their behavior, says Suzanne M. Miller, PhD, Professor and Director of the Psychosocial and Biobehavioral Medicine Program at Fox Chase and study author. Doctors and nurses should also provide strategies for women who feel less empowered to make those changes, and have fewer skills for reducing their stress.

"Women are in charge of their future, because there are things they can do to minimize the effects of treatment," says Miller. "If they get into a routine of doing them, it will reduce their stress and vulnerability."

The study, funded by the U.S. Department of Defense, focused on the side effect of surgery known as lymphedema—an incurable build up of fluid in the lymph nodes that can cause swelling and affect range of motion. In more severe cases, it can be quite painful. The rate of lymphedema can vary, but a significant proportion—perhaps as many as half—of women will develop it 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," says Miller. "It's a very salient condition."

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.

"That advice may sound easy to follow, but the reality is quite different," says Miller. To truly follow these recommendations, she says, women have to forever change and monitor their behavior—moisturize the arm on the side of surgery several times per day, use an electric shaver instead of a razor, wear gloves when doing housework or physical activity, avoid tight jewelry or clothes, stop carrying heavy objects, and constantly protect the arm from being jostled or squeezed, for instance. "These changes are going to be very intrusive into a woman's everyday life," says Miller.

Part of the struggle for women is that changing their behavior serves as a daily reminder of their breast cancer, she notes. "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 behavioral changes, Miller and her colleagues met with 103 women immediately after breast cancer surgery to discuss lymphedema and their attitudes about it, and provided materials from the American Cancer Society on how to reduce their risk. They then checked in with women later to see how well they had adhered to the advice.

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

One important factor in the rate of adherence was women's attitude—specifically, women were most likely to take steps to reduce their risk of lymphedema if they felt confident they could physically follow the recommendations, believed 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.

Clinicians also need to talk to families, so everyone is on board with a woman's "new normal,'" says Miller. "Managing a woman's risk of lymphedema requires a shift in the dynamics of her relationships, so the people around her can pitch in and take over some of the tasks she should no longer do."

Reducing the risk of lymphedema involves women taking control of the next phase of their lives, says Miller. "Being a survivor is wonderful, It's great to get to that stage. Managing lymphedema should be seen as managing anything else in life that keeps you healthy, such as weight, or exercise. Lymphedema is something that can generally be helped by simple behaviors."

Provided by Fox Chase Cancer Center