A study that followed women diagnosed with breast cancer in the ’90s for about a decade found several factors influenced their risk of developing lymphedema. These included age, race, weight, stage of cancer and types of treatment given.

Background and Goals

Lymphedema is a long-term, potential side effect of breast cancer treatment. It happens when extra fluid builds up, causing swelling of the skin on the same side of the body as the breast cancer. It usually appears in the hand, arm or torso.

About 20 percent of women who are treated for breast cancer develop lymphedema. It requires lifelong management and can impact a person’s quality of life.

These researchers set out to take a long-term look at a racially diverse group of women to learn more about when lymphedema develops and how factors like breast cancer and breast cancer treatment, race, age, overall health and lifestyle affect risk of lymphedema.

Design

Researchers used the Health, Eating, Activity, and Lifestyle (HEAL) Study to find women who were diagnosed with early-stage breast cancer between 1995 and 1999.The women lived in New Mexico, Western Washington or Los Angeles County, California.

Of those women, this study included people who

• were between 35 and 64 years old
• had surgery
• submitted complete information about onset of lymphedema; number of lymph nodes, tissues to which breast cancer may spread, that were removed; and body weight
• identified as non-Hispanic white, Hispanic white or black

Of the original group of 1,183 women, 666 were eligible for this study.

Four assessments used over a decade – done 6 months, 30 months, 40 months and 123 months after diagnosis – were part of this study. Participants were asked about lymphedema at the 40-month and 123-month assessments.

Results

During follow-up, 29 percent of women reported having lymphedema. The median time from diagnosis to signs of lymphedema was 10.5 months. However, 45 percent of the women who developed lymphedema did so a year or longer after their diagnosis. Age, race, weight, cancer stage and lymph node removal all had effects on lymphedema risk.

Age

Age did not matter in risk of lymphedema seen within a year of diagnosis. But risk of late-onset lymphedema, in which the condition occurs more than a year after diagnosis, went down as women aged. Women 60-64 years were 41 percent less likely to develop lymphedema than women 35 to 44 years.

Race

Black women were 1.62 times more likely to develop lymphedema than non-Hispanic white women. The study also found that in black women, being treated with chemotherapy or having high blood pressure increased the risk of developing lymphedema. This was not seen in other racial groups.

Weight

Lymphedema risk increased as weight increased. Women who were obese before diagnosis were 1.59 times more likely to develop lymphedema than women who were at a healthy weight before diagnosis.

Cancer Stage

Women with breast cancer that was in situ, meaning it was contained in the ducts of the breast, were 74 percent less likely to develop lymphedema than women with localized breast cancer, found in the breast tissue. Women with regional breast cancer, which spread as far as the nearest lymph nodes, were 1.35 times more likely to develop lymphedema than women with localized breast cancer.

Surgery

Women who had total or modified radical mastectomy, in which the entire affected breast is removed, along with some lymph nodes and possibly the chest wall muscles, were 1.37 times more likely to develop lymphedema than women who had partial mastectomy, in which the tumor and some normal tissue around it is removed.

Lymph Node Removal

A woman’s risk of lymphedema increased by 5 percent for each lymph node removed. Women who had no lymph nodes removed were 83 percent less likely to develop lymphedema than women who had 10 or more lymph nodes removed.

Limitations

The women in this study self-reported their lymphedema status, which could have led to errors. These women were diagnosed in the ’90s, when sentinel lymph node biopsy was used far less than it is today. This type of surgery is linked to fewer cases of lymphedema than another type of lymph node surgery, called axillary lymph node dissection, which would have been the more common surgery when the women in this study were diagnosed. Because of this, the number of cases of lymphedema reported in this study may be higher than the number that would be reported today.

What This Means for You

This study shows that a variety of factors can affect your risk of developing lymphedema. Most of them, like race and age at diagnosis, are not something you can control. But knowing that you’re a member of a group that has a higher risk of developing lymphedema may lead you to become more aware of the condition. It may encourage you to learn about preventing it – and about noticing and treating it, if you do develop it. For more information about lymphedema, read our online overview of lymphedema and our Guide to Understanding Lymphedema and visit the National Lymphedema Network’s website. If you are interested in taking part in clinical trials involving lymphedema, talk to your doctor and visit ClinicalTrials.gov.

These researchers suggest women with a history of breast cancer, especially those who are younger and had more lymph nodes removed, be monitored long-term because of their risk of developing late-onset lymphedema. Their research also suggests that black women are at higher risk of developing lymphedema than white women. Visit our website for more information about breast cancer in African-Americans and in young women.

Togawa, Kayo; Ma, Huiyan; Sullivan-Halley, Jane et al. Risk factors for self-reported arm lymphedema among female breast cancer survivors: a prospective cohort study. Breast Cancer Research. Volume 16, Issue 4, August 22, 2014; doi:10.1186/s13058-014-0414-x.