Lymphedema Q&A with Kathryn H. Schmitz, PhD, MPH

A question & answer session with lymphedema researcher, Kathryn H. Schmitz, PhD, MPH, Assistant Professor, Center for Clinical Epidemiology and Biostatistics.

Q: What is lymphedema?

A: Lymph is a fluid made up of mostly protein, water, white blood cells, and waste. This fluid flows through tissues in the body and into the lymph system, which is made up of lymph nodes and lymph vessels. This system is basically a filter, removing toxins from the tissues, filtering the toxins through the lymph nodes, and ultimately disposing of the toxin via the bloodstream.

Lymphedema is an accumulation of lymphatic fluid in an extremity due to alteration of normal lymphatic flow. The lymphatic drainage can be altered through surgery, radiation therapy, infection, scarring, or direct blockage of the drainage by a tumor. Signs of lymphedema development include slow progression of swelling which typically begins at the far end of your limb (fingers and toes) and then moves up the arm or leg.

Q: Who is at risk for lymphedema?

A: A very small percentage of the population will develop 'idiopathic' lymphedema – that is to say, lymphedema that is of unknown causes. The more common causes of lymphedema are medical conditions and treatments that interfere with the normal structure and functioning of the lymphatic system. For example, breast cancer patients often have lymph nodes removed as part of their treatment. The risk for lymphedema increases with the number of nodes that are removed (regardless of whether the nodes are 'positive' or not). Radiation therapy to the axilla (armpit) can also damage the lymphatic system and lead to lymphedema. Being overweight is another risk factor for developing lymphedema, particularly among cancer survivors who have had lymph system damage as part of their treatment.

Q: Is lymphedema dangerous?

A: Lymphedema can be mild and barely noticeable, or severe and disfiguring. More severe lymphedema is associated with lymphangiosarcoma, a rare form of cancer. Further, extreme lymphedema can lead to limb amputation. These severe conditions can be prevented through appropriate, timely care of less severe lymphedema.

Q: What treatments are available for lymphedema?

A: There are a variety of treatments that are available. Often the treatment will start with an intensive period of daily appointments to a lymphedema therapist for a special kind of massage called 'manual lymphatic drainage', as well as instruction for the self-management activities commonly used for lymphedema. These common self-management strategies include wearing a compression sleeve during waking hours, applying special bandages to compress the affected limb at night, taking good care of your skin, and doing some remedial exercises. Some lymphedema therapists use a pneumatic pump to reduce arm swelling in addition to or instead of the compression garments.

Q: Is there anything a person can do to prevent lymphedema?

A. Yes! The National Lymphedema Network has recently published a list of 18 actions individuals at risk for lymphedema can do to prevent or minimize risk. The list can be accessed at www.lymphnet.org/riskReduction/riskReduction.htm. The list includes advice regarding skin care, activity and lifestyle, avoiding limb constriction, wearing compression garments, and avoiding temperature extremes. Of particular interest to me as an exercise physiologist is the advice to maintain a healthy body weight (obese individuals are at increased risk for lymphedema), and to gradually increase in activity.

Q: Are there clinical trials for people who are at risk for lymphedema?

A: I'm glad you asked that! I have been funded by the National Cancer Institute to conduct the largest clinical trial on lymphedema to date. The Physical Activity and Lymphedema (PAL) Trial will recruit 288 breast cancer survivors 1 - 15 years after their cancer diagnosis. These participants will be randomly assigned to a treatment group or a control group. The treatment group will do gradually progressive strength training twice weekly for 1 year. Both groups will go through all study measurements. At the end of the study, the control group will get to do the same strength training that the treatment group did during the study. The main purpose of the study is to establish the safety of doing upper-body strength training for women with lymphedema and at risk for lymphedema. All participants will receive a free 1-year-membership to a fitness facility, as well as education in strength training and lymphedema. Women with lymphedema in the study will receive 2 free custom-fitted compression garments and free evaluations and care for lymphedema during the study.

Q. What makes you think it will be safe for these women with lymphedema or at risk for lymphedema to do strength training?

A: I did a study at the University of Minnesota (before I moved to Philadelphia ) with 86 women that was a smaller version of the PAL trial. Some of the women in that study had lymphedema at the beginning, others did not. There were no differences in the arm circumference changes (a measure of lymphedema) of women who did strength training than the women who did not do strength training in that smaller study. In fact, lymphedema symptoms got better in the women who did strength training. We also showed that they improved their strength, body fat percentage and their quality of life as well. We anticipate using this larger study to confirm those results.

Q: How can women get involved with your study?

A: This research will take place in the Philadelphia, PA metropolitan area. All participants receive a free one-year membership to a gym/fitness center in the metro region, access to a qualified fitness trainer, access to a physical therapist, and financial compensation. We are looking to recruit women who have been diagnosed 1 – 15 years ago and have had at least 2 lymph nodes removed during treatment. For more information about this study, or to see if you are eligible, please contact Amy Rogerino at 215-898-5112 or e-mail her at [email protected].