I have lymphedema and I'm getting tired of hearing, 'It's not swollen too bad' or 'You can live with a little swelling.' Is there anything I can do to change the widespread ignorance about lymphedema among most healthcare providers? "(Question submitted to a lymphedema website.) Although the question is not directed to me, here is my effort to try to answer these questions."
Still misunderstood and often downplayed, lymphedema awareness is increasing. What is lymphedema, you ask? It can be thought of as a plumbing problem. The body's ability to transport and eliminate fluids is unable to keep up with the amount entering the tissues. This results in overloading the tissues, causing swelling. It is generally recognized by the swelling of an arm or a leg, and it can lead to embarrassing deformity, pain, and an increased risk of serious infections. It is often thought of as a fairly rare condition but in fact it affects about 1% of the population. It is estimated that there are over two million cases of secondary lymphedema in the United States, most because of breast cancer therapy. Another source reports that between 2 and 8 million people in the U.S. have lymphedema.
Researchers disagree on the number of people at risk after treatment for cancer, varying from 5 and 10% (5 to 10 people out of 100 treated) up to 25% or 30%. The variance has to do with many factors including size of the tumor, stage of the cancer, whether radiation was needed over the area of lymph nodes, if chemotherapy was needed and the level of lymph node dissection required. The more extensive the treatment, the higher the risk. Those who underwent the old-fashioned radical mastectomy are in the 25% risk range. Some estimate the risk for those who only need sentinel node biopsy to be less than 1%.
Let's back up, though, and explain what the lymph system is. Usually ignored unless there is a problem, the lymph system is a series of vessels (tubes) and nodes (filters) that transport and remove protein rich fluids out of our bodies. It is a prime player in our immune system, having the cellular memory to recognize "bad guys" and carries white blood cells (lymphocytes) that are important in fighting infections. The vessels parallel the venous (blood) system but where the blood system is two-way, circulating from the heart, out to the tissues and back again, the lymphatic system only leads out toward the large veins at the base of the neck.
Lymphatic vessels have valves built into their walls, moving the fluids in one direction. The vessels contract or pulsate microscopically. There are filaments that anchor the capillaries to the surrounding tissues. As we move our muscles contract and relax, causing pushing and pulling on the vessels (muscle pump). This encourages the initial collectors to open and close, pulling more fluids in by a negative pressure gradient and propelling them along into larger vessels. Respiration also plays a role in lymph flow.
Nodes act as filters removing bacteria, toxins and large dead cells that are too big to be pulled into the blood system. There are between 600 and 700 lymph nodes...