More Than Pamphlets Needed to Avert Lymphedema "Aftershock"

As you convey the official diagnosis of breast cancer, very likely your patient has already been on the Internet reading about it. Very likely also, even before the treatment that puts her at risk, she is already dreading lymphedema (LE) of the arms and its consequences: discomfort, disability, and disfigurement.

It's difficult to assess individual risk of lymphedema, because methods of measurement vary, as do risk factors. A prospective study of breast cancer survivors in Australia found that up to 42% showed declines in upper body function between six and 18 months post-surgery. Another study from the University of Missouri school of nursing found that incidence of post-treatment LE ranged from 43% to fully 94%, depending on the criterion for diagnosis. What's more, cases continued to emerge among the study population throughout the five years after treatment.

Which patients deserve your special focus on reducing the risk of LE? The Australian study  found that age over 50, lower income status, mastectomy, and extensive lymph node surgery are important risk factors for LE, as is being treated on the dominant (muscular) side of the body. Also, pre-treatment body mass index >30 appears to be a risk factor (but not post-treatment weight gain).

The critical moment

The time of diagnosis is the moment  to inform a patient that, in order to avoid LE, she should begin appropriate exercises after treatment, under the guidance of a therapistknowledgeable about LE. And she'll need regular reminders after treatment.

It's probably unwise to counsel her to avoid any lifting altogether, according to a recent study in JAMA, which found that with appropriate guidance, upper body exercise does not increase the risk of LE after breast cancer treatment. In fact, to avoid lifting weights may actually increase the risk by weakening upper body muscles.

Along with manual lymphatic drainage, exercise has always been part of complex decongestive therapy, which is the gold standard of treatment for LE. But the evidence is ever stronger that exercise and early physiotherapy can reduce the risk of post-treatment LE developing in the first place. The problem appears to be overcoming the many factors that deter patients from following through on that knowledge.

A study of lymphedema risk-reducing behaviors, published last month in Oncology Nursing Forum, found that even women well-educated about the benefits of exercise were only moderately likely to follow through. The crucial factor predisposing to adherence was "exposing women to lymphedema risk information at the time of ... diagnosis" as well as a "reminder booster" 3 months after surgery.

Lack of time, energy, and support

Sadly, education alone is not likely to be enough to motivate women to undertake the self-care routines necessary to reduce their risk. Jane Armer and coauthors from the University of Missouri School of Nursing have analyzed why women don't follow the recommended self-care programs. The main reasons would not surprise any physician; they come down to emotions, lack of time and energy, and forgetfulness. Hence, at least, the need for regular reminders, and for motivational support.

A more basic problem is the matter of money. Third-party payment for any interventions aimed at reducing LE after breast cancer treatment  (let alone avoiding it) is "very limited," says Armer. Medicare places time limits and excludes items such as compression bandages and support garments. Armer is part of a task force lobbying for legislation to improve Medicare coverage for LE risk-reduction programs, including mandated education about home self-care. Meanwhile, a standard for training programs for providers is in development, and an international best practices document on LE management is being updated.

A Cancer and Leukemia Group B multicenter trial, now under way, will assess whether tailored exercise and counseling programs improve on education as a way to reduce LE risk in breast cancer. So in time, the support you and your staff need to support your breast cancer patients may gradually emerge, and the nationwide boom in breast cancer survivors may not be followed by an aftershock of lymphedema.

Exactly what exercises should be done? Few studies give all of the details (though all have used skilled therapists). The National Lymphedema Network and the Lymphology Association of North America have online directories of exercise therapists skilled in working with LE. A comprehensive review of LE management in breast cancer, available online in full text for free, offers specific guidance on patient education topics as well as details about exercise and strength training regimens.