BOSTON—Many patients are unaware of their risk of cancer-related lymphedema, and oncology nurses can be instrumental in raising consciousness about this debilitating adverse effect. Of breast cancer survivors, 22% to 66% develop lymphedema, said Jane Armer, PhD, RN, FAAN, Sinclair School of Nursing, University of Missouri, in her poster presentation. Approximately 15% of nonbreast cancer patients also develop lymphedema. This chronic condition is optimally managed by a lymphedema therapist.
Armer and colleagues with the American Lymphedema Framework Project (AFLP) surveyed 419 lymphedema therapists in 46 states and found that only 2% were nurses. Most were physical (48%) or occupational (33%) therapists, with anywhere from 1 day to 135 hours of training in lymphedema management. Complete decongestive therapy (CDT) remains the gold standard of care for lymphedema, but patients can also learn other techniques for reducing their risk and managing symptoms—if they know about them.
The Need for Education
Women with lymphedema feel neglected by the healthcare system, discovered Mei R. Fu, PhD, RN, ACNS-BC, assistant professor of nursing at New York University, who presented 2 posters on lymphedema. Fu believes simply discussing lymphedema risks and prevention with patients improves outcomes because it improves their mental outlook.
Her team enrolled 136 breast cancer patients (median age, 54 years) who had an average of 12 lymph nodes removed; 1 patient had no lymph nodes removed. Half were mastectomy patients, and all had unilateral lymph node surgery. Three-quarters were white.
At enrollment, 40% were found to have mild lymphedema and 10% had severe lymphedema. Yet, none had received a diagnosis. This patient population was highly educated, with 44% having a graduate degree. “This tells us even with this highly educated, high middle class population, there is a struggle. What about our minorities, our lower socioeconomic income population?” Fu asked.
Slightly more than half (53%) of patients had some information on lymphedema, mostly from pamphlets provided by the American Cancer Society. “The second source, I am proud of this, are nurses,” said Fu. However, 53% said their nurse never told them how to protect themselves from lymphedema, and 47% received no information from anyone.
Those who had some information, such as “don’t use blood pressure readers on that arm” and “no injections,” reported significantly fewer lymphedema symptoms than those who had no information (2.5 vs 4, respectively). They took at least 10 protective measures compared with 7 for uninformed patients.
“Most doctors and nurses don’t know how to educate this population,” said Fu. “We need to have specialized training for nurses who are going to do the risk-reduction education; maybe not 135 hours, but a 1-day course, talking about the physiology of lymphedema and what you should do.”
Women with a body mass index (BMI) ≥25 had a higher rate of lymphedema than women with a BMI <25 (27.4% vs 16.7%, respectively), in a study by Marybeth Singer, NP, Tufts Medical Center, Boston, Massachusetts, and colleagues who assessed the effect of BMI on lymphedema risk in 399 women with unilateral breast cancer.
Although most surgeons say sentinel lymph node (SNL) biopsy is less likely to cause lymphedema than axillary lymph node dissection, Singer said 50% of lymphedema sufferers in the BMI ≥25 group had undergone SNL biopsy. Overall, 12 patients with no lymph nodes removed developed lymphedema, of which 10 were in the BMI ≥25 group. “We don’t think of those patients of being at risk,” Singer observed.
“We need to look at what role heart disease, diabetes, or other proinflammatory conditions might play in the underlying biology of lymphedema,” she said, adding that genetics should also be considered.
The researchers agreed that nurses are in the optimal position to talk to patients about lymphedema and counsel them on the benefits of lifestyle changes, such as weight loss and exercise. Patients who are not educated sometimes take treatment into their own hands, increasing the damage. Fu did a longitudinal study examining the behaviors of 13 Chinese-American breast cancer survivors with undiagnosed lymphedema. After hearing that massage might help, some sought heat massage or vigorous Thai massages, which exacerbated their lymphedema.
Secondary lymphedema seriously compromises quality of life, and Singer said, “Many patients don’t seek treatment until they’ve had edema for sometime—meaning months or years.” Fu observed this in her study, with 1 woman suffering from undiagnosed lymphedema for 8 years.
Armer recommended downloading guidelines on evaluating patients for lymphedema from the AFLP website (www.alfp.org). Updated guidelines will be available in June.