NASHVILLE, Tenn. -- Although they experienced classic symptoms of post-surgical lymphedema, many breast patients didn't recognize the condition as related to treatment and said they didn't receive any information about it from their healthcare providers, researchers said here.
Among 24 patients who had undergone breast cancer surgery and lymph node dissection, 79% experienced lymphedema symptoms, and "71% ... thought incorrectly that it was normal to feel heaviness, firmness, and tightness in the affected limb," reported Dorothy Pierce, RN, MSN, of Rutgers Cancer Institute of New Jersey/Robert Wood Johnson University Hospital in New Brunswick.
Action Points
- Note that this study was published as an abstract and presented at a conference. These data and conclusions should be considered to be preliminary until published in a peer-reviewed journal.
"Most of my patients don't recognize the symptoms of lymphedema," Pierce told MedPage Today at her poster at the American Association of Nurse Practitioners annual meeting.
"Either the surgeons are not [telling them about lymphedema] or the patient is not listening," added Pierce, who is a nurse practitioner in radiation oncology.
She reported that 16 of the 24 women, all of whom were slated for radiation therapy, said they had received no lymphedema information from their cancer care providers, nor did they know about lymphedema.
"Although the sample size is small, these study results indicate that patients beginning radiation therapy for breast cancer often have not received any lymphedema information from healthcare providers prior to beginning therapy, and that lymphedema knowledge is moderate to poor" Pierce wrote.
Among eight women who said they did receive information about lymphedema, five said it was provided by their radiation oncologist, one was told about the condition by a nurse, one learned of it from a medical oncologist, and one was informed by a physical therapist.
The cross-sectional survey was done in patients in the radiation oncology department at the cancer institute with data collected from April to June 2013.
More than half the study participants were ages 40 to 49, and the majority were Caucasian. Three-fourths reported that they finished high school or had attended college.
The majority of women underwent lumpectomy (63%) and half had one or more lymph nodes removed. Seventy-one percent had adjuvant chemotherapy.
Pierce said ten women reported limb tenderness and nine reported limb swelling, while eight women reported firmness or tightness in the arm. Six women reported numbness in the arm, and five women reported impaired movement in the shoulder or fingers.
Of those who reported lymphedema symptoms, more than half took no action and simply tolerated the condition, Pierce said. Some women reported that they informed their healthcare providers while others said that massage therapy helped alleviate the discomfort. One patient said she slept with her elbow raised on a pillow and also wore a special bra.
All of the nine women who underwent mastectomy -- and also had two to 14 lymph nodes removed -- reported symptoms of lymphedema. Of the 15 women who had lumpectomy with one to seven lymph nodes removed, ten reported at least one symptom of lymphedema.
Pierce said there did not appear to be any correlation between the number of lymph nodes removed and lymphedema symptoms. She also found no significant evidence that body mass index played a role in lymphedema symptoms.
For all patients in the study, knowledge of lymphedema was 11.9 on the 20-point Lymphedema Knowledge Scale, Pierce said.
Because the study was conducted at a single urban center, Pierce cautioned that the results may not be generalizable. She called for more studies in larger patient populations to confirm these results.
She also said she would explore how her department could use these findings to develop a standardized protocol for assessing lymphedema prior to radiotherapy.
Shammy Jacob, NP, of the University of Texas Health System in Houston, pointed out that it may be up to primary care providers to discuss lymphedema with breast cancer patients.
"When we have cancer patients, we usually lose them for the period where they are under treatment by the oncology team," she told MedPage Today. "This interesting study indicates that when these patients return to us in primary care, we will have to ask them about possible lymphedema symptoms."
Disclosures
Pierce and Jacob disclosed no relevant relationships with industry.
Primary Source
American Association of Nurse Practitioners
Source Reference: Pierce D, et al "Lymphedema knowledge and symptoms in breast cancer patients receiving radiation oncology" AANP 2014.