News & Events

A letter to the American Medical Association (AMA) from Janet G.

Dear Dr. Madara,

In August of 2008, I had symptoms of possible uterine cancer. It was so early in the development of my disease that I was given a choice: wait a few months and test again or have a hysterectomy now. As I was beyond childbearing age and wanting to err on the side of caution, I agreed to surgery. I recovered well enough to join my husband on a tour of Eastern Europe 20 days later. Neither chemotherapy or radiation was even mentioned.

During my annual physical in 2009, I happened to mention to my GP that I had swelling in my left leg. “Lymphodema” was the diagnosis she immediately uttered. I had heard of lymphoma so I held my breath until she explained that lymphodema was different and not life-threatening.

“What to do?” I asked her. She suggested a couple of ideas: physical therapy and compression socks.

I found a wonderful physical therapist who specialized in lymphodema in Reseda (40-minute drive from my Westlake Village home). I drove back and forth for my hour session each day for two weeks. Some improvement occurred, but it was barely noticeable. Since then, that PT has retired, and nobody closer than Santa Monica can be found.

I have heard that walking helps so I spend 40 minutes on a treadmill every single day. I still wear compression socks. I considered surgery, but I realized after interviewing doctors that the cons outweighed the pros if I pursued that option.
During my search for a solution, I have been amazed that so little is known about lymphodema.  A void in the field of research has existed in 2008 and has persisted to this day. 

I am grateful that my swelling is mild and is only slightly uncomfortable. My heart goes out to others who battle with disfigurement. Wearing compression sleeves and socks is uncomfortable in many ways and adds to the stigma. Physical therapy, including wrapping does very little, is time-consuming, and interferes with an active lifestyle. 

I am so grateful that LE&RN exists. Kathy Bates and so many other brave people have “shouted loud enough” to give life to this important cause. Much more needs to be done. In this country, where the impossible becomes possible, I have hope that someday soon, solutions will be found to prevent and significantly improve the symptoms of lymphodema.

With best regards and thanks for all you do,
Janet G.
Westlake Village, CA