Nurses Surviving Breast Cancer: An exploration of breast cancer diagnosis, reported lymphedema symptoms, and lifestyle status in the Nurses' Health Study Survey

Project Summary/Abstract
Breast cancer-related lymphedema (BCRL) is a side-effect of anticancer treatment. Caused by damage
to the lymphatic system secondary to surgery, chemotherapy, and radiotherapy treatments, protein-rich
lymphatic fluid moves from the lymphatic channels into the surrounding interstitial tissues, causing pain,
swelling, decreased physical function, and emotional distress. Every person treated for breast cancer has a
lifetime risk of developing this condition. Currently, there is no cure for this anticancer treatment sequelae.
Early, timely, and consistent surveillance, diagnosis, and treatment is critical to successful management.
Lifetime treatment involves a two-phase program of lymphedema therapist-guided treatment and personal self-
management activities. As survivors age, support and surveillance needs change with additional comorbidities,
psychosocial changes, and health navigation challenges which complicate lymphedema self-management.
Studies have explored incidence, symptom association factors, and self-management issues in small samples
of breast cancer survivors living with BCRL. To date, no BCRL studies have used a large, longitudinal,
prospective database. The Nurses’ Health Study is a large, national, longitudinal database that explores
reproductive and chronic disease health issues in women. Launched in 1976, researchers sought to examine
reproductive health and chronic illness risk over time. Over 280, 000 professional nurses have responded to
survey questions focused on lifestyle and health status. In 2010, questions developed by our team to address
breast cancer treatment and lymphedema symptoms were added to the biennial survey. From 2010-2017, five
waves of survey data were collected. In this study we seek to 1) explore patterns of incidence of self-reported
BCRL symptoms of limb, breast, or chest heaviness and swelling across race, socioeconomic status, and time
since diagnosis; and 2) examine patterns of associations between self-reported lifestyle- and health-related
factors and BCRL symptoms of limb, breast, or chest heaviness and swelling. Five biennial waves of the
survey data will be analyzed. We will model the association between self-reported lifestyle- and health-related
factors and BCRL symptoms of limb, breast, or chest heaviness and swelling using Generalized Linear Mixed
models across the five biennial waves of data. This study will provide the first rigorous evidence about the
incidence and prevalence and patterns of breast cancer diagnosis and self-reported BCRL symptoms in nurses
who are breast cancer survivors. These findings will help generate future questions about additional factors
that may impact survivorship for nurses living with BCRL and lay the foundation for future research in BCRL
self-management intervention development.

Grant Number: 1R03CA289066-01
NIH Institute/Center: NIH
Principal Investigator: Elizabeth Anderson