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Creative writing explored as therapy for lymphedema
Thanks to a three-year grant from the American Cancer Society, Sheila Ridner, Ph.D., R.N., assistant professor of Nursing at the Vanderbilt University School of Nursing, and Ingrid Mayer, M.D., assistant Professor of Medicine at the Vanderbilt-Ingram Cancer Center, are testing expressive writing as a way to help alleviate some physical and psychological consequences of stage 2 lymphedema in breast cancer survivors.
“This is an important problem, and it's not going away,” said Ridner. “We have a higher percentage of survivors, which means this is an issue we need to address.”
Lymphedema can also be a serious problem for survivors of prostate cancer, ovarian cancer and melanomas. Hallmarks of stage 2 in breast cancer survivors include constant swelling, physical changes in the limb and, often, a harder and larger affected area.
Despite massage therapy designed to temporarily move fluid through the lymph system, this is a chronic condition that causes discomfort and emotional distress. Typical treatment does not involve psychological interventions.
Ridner and her team are studying, in a randomized, clinical trial, the impact of expressive writing, an activity that she says is very different than keeping a journal or blogging.
Expressive writing is dose-limited to 20-minute sessions, four times during a two-week period. A majority of the subjects participate from home using their own computers, but a few have opted to use traditional pen and paper. Participants share their personal experiences or detail living with lymphedema.
Participants receive an initial physical exam of the arm, symptom assessment, and a volume measurement of their arm.
Assessments are repeated after one, three and six months to gauge any changes.
“Our goal is to give these patients a voice, ” said Ridner. “Losing function in an arm or a leg is not acceptable, particularly among young people, and we want to change attitudes among health care professionals so that just surviving is no longer a good enough outcome.”
The study has recruited 48 of its needed 90 participants so far, and word is spreading. Despite having a requirement that subjects live within a 90-mile radius, the research team has had calls from interested survivors from Georgia, Florida, Ohio, Colorado,
and Indiana. Those involved in the study receive incremental compensation.
They either visit Vanderbilt or are seen in their homes for their initial meeting and complete the remainder of the study from their homes.
For more information on this study, visit www.lymph-study.org.