Dr. David Spiegel, a physician at Stanford University, is widely known for his studies on the effects of group therapy on outcome in breast cancer patients. Dr. Spiegel believes that patients need to have the three "C's"--communication with others about their disease and the disease process, control in the disease process by being able to make informed decisions about treatment, and caring from those involved in their treatment. Dr. Spiegel feels that the patients who do best are those who have a realistic optimism as to what can and cannot be done for them. This allow patients to express their emotions honestly and to commit to doing whatever it takes to effectively manage their disease within the framework of what is realistically possible. He feels that cancer patients often feel isolated and that support groups provide a common bond that allows for the expression of emotions.
As with cancer, lymphedema patients often feel a sense of frustration and isolation. They often cannot communicate with others about their feelings. Some feel the joy relief from having beaten breast cancer only to find that they have a chronic lymphedema. It is a conflict that many feel but have a difficult time expressing to others, especially their doctors. Many feel they lack control of their disease. There is very little information available and much of what is available may not be reliable. They don't know if their lymphedema is going to progress uncontrollably or remain stable and they don't know what treatments are most effective.
While we don't know whether patients who suffer from lymphedema do better if they are in a support group, we suspect that they will do better and Dr. Spiegel's studies indicate that support groups can be very helpful. We encourage lymphedema sufferers to join or form a local support group. If there is not one available you are invited to join in our online support group lead by Sami Pry a social worker and lymphedema sufferer.