Lymphedema-Related Distress Tied to Poor Mental and Physical Health

Breast Cancer News
October 21, 2014
Erin Rowley, Writer and Content Coordinator
Reviewed By: 
Lori B. Ranallo, RN, MSN, ARNP-BC, CBCN

Researchers suggest healthcare providers take note of the connection between distress caused by lymphedema and poor mental and physical health and use this information to help women with breast cancer.

Background and Goals

Lymphedema happens when extra lymph fluid builds up and causes tissues under the skin of the hand, arm, breast or torso to swell, on the same side as the breast cancer. Doctors say the chance of getting lymphedema after breast cancer treatment ranges from about 5 to 30 percent.

Past studies have found that women living with breast cancer-related lymphedema have a lower quality of life. The researchers in this study focused on their physical health and their mental health – their emotional wellness and levels of stress and depression. 

The Women’s Healthy Eating and Living (WHEL) study was created to see the effects of a plant-based diet on breast cancer recurrence and death. But it also asked women about lymphedema. This study team used that data to focus on the mental and physical health of women with breast cancer-related lymphedema.


The WHEL study enrolled 3,088 women, all of whom were within 4 years of an early-stage breast cancer diagnosis. Over the years of the study, the women filled out surveys about different aspects of their health. This included the Center for Epidemiologic Studies Depression Scale screening form (CES-Dsf), which is used to measure depression symptoms. 

For this analysis of the data, surveys given at the 4-year point of the study were used, along with phone interviews about lymphedema, which were offered to 2,971 of the women shortly after the 4-year point.


Of the 2,971 participants who were called about lymphedema, 83 percent self-reported their lymphedema status. A total of 28.5 percent of those women reported being diagnosed with lymphedema or having arm/hand swelling. These women were asked about their symptoms. Of the 671 women who answered that question,

  • 71.7 percent had at least one symptom at the time
  • 44.2 percent had four or more symptoms at the time

The women were also asked how much lymphedema distressed or bothered them. Of the 685 who answered, 48.9 percent noted some lymphedema-related distress.

The more lymphedema symptoms a woman had, the more likely she was to report having lymphedema-related distress. Of the 118 who had at least seven symptoms, 73.7 reported at least moderate distress because of lymphedema.

One analysis found that:

  • Of those with no lymphedema, 37.1 percent reported poor physical health, 37.7 reported poor mental health and 12.2 percent reported higher symptoms of depression
  • Of those with lymphedema, but no distress, 44.7 percent reported poor physical health, 41.2 percent reported poor mental health and 12.8 percent reported elevated symptoms of depression
  • Of those with lymphedema-related distress, 50.8 percent reported poor physical health, 52.1 percent reported poor mental health and 17.6 percent reported elevated symptoms of depression·

Another analysis found that compared to women who did not have lymphedema, women with lymphedema-related distress were

  • 50 percent more likely to report poor physical health
  • 73 percent more likely to report poor mental health

Lymphedema-related distress was significantly associated with more depression symptoms in the first analysis, but when CES-Dsf scores were looked at, the team found that the level of physical activity had a greater impact on depression.


The women in WHEL were mostly white and well educated. They also volunteered to be put on a strict diet. For these reasons, WHEL results may not hold true for all people. The study was also dependent on correct self-reporting by participants.

What This Means for You

If you have lymphedema and it’s causing you distress that is affecting your mental and physical health, this study shows that your feelings are shared by many others. These researchers suggest that this information be used by doctors and therapists as they counsel women who have developed lymphedema after breast cancer.

For more information about lymphedema, read our  Guide to Understanding Lymphedema.

Dominick, Sally A.; Natarajan, Loki; Pierce, John P. et al.  The Psychosocial Impact of Lymphedema-Related Distress Among Breast Cancer Survivors in the WHEL StudyPsycho-Oncology. Volume 23, Issue 9, pages 1049–1056, September 2014; doi: 10.1002/pon.3510.

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