The first study to look at out-of-pocket expenses faced by breast cancer survivors in the United States shows that women with adverse treatment effects, such as chronic lymphedema, carry a particularly large economic burden that has a profound and lasting impact on their financial future.

The study, led by Lorraine T. Dean, ScD, assistant professor, Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland, was published online August 22 inSupportive Care in Cancer.

The mixed-methods study of 129 long-term breast cancer survivors, most of whom had health insurance, showed that women with chronic lymphedema had directly related additional costs that were up to 112% higher than those of women who did not develop lymphedema.

At an average of 12 years after diagnosis, lymphedema had also exacerbated losses in work productivity and long-term earning potential, leaving patients unable to help with their children's education, to retire, or to continue treatment for lymphedema.

Managing breast cancer-related lymphedema presents ongoing challenges, and may require leverage of additional resources through family, credit, or savings, patients with ongoing lymphedema care needs may never recover financially, the authors noted.

Study Details

For the study, 129 breast cancer survivors from Pennsylvania and New Jersey completed a questionnaire about the economic burden of long-term survival between May and September 2015. The survey used 12 items adapted from the Breast Cancer Finances Survey. 

The mean patient age was 63 years, and almost half of the women (46.5%) had been diagnosed with lymphedema. Participants also kept diaries on monthly out-of-pocket expenses during a 12-month period, and 40 participants, both with and without lymphedema, completed in-person qualitative interviews.

Although all patients with breast cancer reported out-of-pocket expenses associated with treatment, those with lymphedema had additional uninsured costs, such as physical therapy, lymphedema specialists, sleeves, and garments.

Long-term Sequelae

Patricia A. Ganz, MD, University of California Los Angeles (UCLA) Fielding School of Public Health, said, "It is a matter of early detection and treatment. We need to be aware of these costs, but the best thing we can do is prevent lymphedema by minimizing treatment to the axillae and make sure patients get helpful physical interventions early on."

Ganz, who is also director of Cancer Prevention and Control Research at Jonsson Comprehensive Cancer Center, noted that lymphedema is associated with being overweight, but the study did not account for other comorbidities, such as diabetes.

"We know that cancer is not over when treatment is over," Ganz told. "I think this study also speaks to cancer survivors experiencing the sequelae of treatment and living with persistent pain and physical limitation. I would suspect that the breast cancer survivors in this study without lymphedema may have had their pain and limitation too."