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SHEILA RIDNER, PHD, RN

Cancer is an insidious group of diseases that affect far too many of us, our friends and our family members. The American Cancer Society projects 1,444,920 new cases will be diagnosed this year across the country, and 28,440 patients will hear those difficult words for the first time: “You have cancer.”

The good news is that survivor rates are up to 66 percent in the last few years. Research and medical minds are hard at work to squelch the nation’s number two killer. There is a huge educational campaign spreading facts about how diet, exercise and regular checkups can help stop cancer in its tracks.

But, far too few people know about one of cancer’s dirtiest little secrets – lymphedema.

Many cancer treatments require removal of lymph nodes or radiation and in doing so can unbalance the body’s natural drainage system. So a breast cancer survivor may mysteriously notice swelling in her arm. A head and neck cancer survivor might notice an area on his neck that seems asymmetrical. Since most people and even many physicians do not know about lymphedema, these conditions can go undiagnosed for long periods of time.

People who feel lucky to have survived cancer often feel betrayed by having to deal with this chronic, painful and embarrassing condition for the rest of their lives.

If they are diagnosed in the early stages, patients get therapeutic massages or wear special garments to help keep the limb compressed. The next stage develops into more discomfort and a hardening of the limb. In the worst cases, the lymphedema develops into elephantitus.

Thanks to a three-year grant by the American Cancer Society, Vanderbilt University School of Nursing and Vanderbilt-Ingram Cancer Center are testing expressive writing as a way to help alleviate some physical and psychological consequences of Stage Two lymphedema in breast cancer survivors. This work may result in identifying an effective, no-cost treatment of lymphedema patients.

Lymphedema can also be a serious problem for survivors of prostate cancer, ovarian cancer, and melanomas. Hallmarks of Stage Two 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.

Using a randomized clinical trial, the research team is studying the impact of expressive writing, an activity that is very different than journaling. 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 opt 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. The study has recruited 52 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.

Unfortunately, there is no known cure for lymphedema so this work is focused on the patient as a whole and what, if any, impact expressive writing has on their quality of life and morale in dealing with this condition. The goal is to give these patients a voice, which is something they have not had in the past.

While “survivor” is wonderful, we researchers and healthcare professionals also need to realize that surviving is no longer a good enough outcome. We need to help our patients restore their lives, and expressive writing might play a part.

For more information, visit www.lymphstudy.org.



An assistant professor of nursing, Sheila Ridner has spent her research career focused on various aspects of lymphedema. www.nursing.vanderbilt.edu



March 2008

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