I have lymphedema in both arms. I developed it soon after a bilateral mastectomy 5 years ago. I had seen this swelling before, although I didn't have a name for it. My mother underwent a radical mastectomy in her left breast in the 1970s—the same breast my cancer presented. Her surgeon had scraped all the tissue from the armpit to the middle of her chest down to the bone. The scarring was terrible. My mother's arm swelled to twice its size. With no treatment in those days, I watched her spirit defeated as she realized she would have to live with the pain and heartache for the rest of her life.
I also knew a man who had survived stage 4 melanoma, only to develop severe lymphedema in his arm. He lived on pain medication. He was stubborn and worn-out with seeing doctors, so he tried to manage it himself with Ace bandages. His arm was in terrible shape; heavy as wood, it pulled his shoulder down almost out of joint. His skin was extremely sensitive to the touch, and lymph sometimes oozed through his fingers.
Fearing I might have a genetic predisposition to developing lymphedema, I pleaded with the surgeon, “If the sentinel node is clear, don't take anymore nodes.”
In those first couple of days while I was recovering in the hospital, I would suddenly feel a throbbing knot of pain in the back of my hand just for a few seconds and then it would pass. Then another knot would throb in the shaft of my thumb and go out like a light. These twinkling lights of pain ran up and down my arms for the first day or two. I was terribly worried.
During my first checkup, my surgeon told me that, unfortunately, he felt it necessary to remove 19 lymph nodes from my left armpit and 3 from my right. I was devastated.
For a long time, I was bitter and angry with him. Then I learned that cancer cells travel via the lymphatic system and metastasize in other parts of the body. Finally, I realized my surgeon's sole focus was on making sure that I had the best chance of surviving cancer. After all, the first question we ask upon waking up after surgery is, “Did you get it all?” God knows I will always be grateful to him.
My recovery was emotionally debilitating. With my breasts gone and now lymphedema, I felt trapped in a body I was ashamed of. One of my surgeons found Dr Emily Iker, a physician who specializes in treating lymphedema. Emily is one of the most charming people I have ever known and a true healer.
Twice a week I began manual lymph drainage, followed by 45 minutes with my arm in a sleeve pump to get the swelling under control. Slowly I was able to go 4 to 6 weeks to manage the symptoms. Five years later, thanks to early treatment my arms look normal.
But I still live with the symptoms of lymphedema. I had a serious bout with cellulitis last fall that required hospitalization. Oddly enough, the infection was in the arm where fewer nodes were removed. Being careful about hygiene is the most important aspect of self-care. Untreated cellulitis can lead to sepsis and that is life-threatening.
I have to wear compression sleeves when exercising, when my arms swell in the heat, from stress from overuse, or lifting heavy things. Of course, I wear them while flying. They are hard to put on by myself, but I've gotten better at it.
Dr Iker introduced me to Bill Repicci and the Lymphatic Education and Research Network (LE&RN). I learned that upward of 10 million Americans suffer from lymphedema—more than muscular dystrophy, multiple sclerosis, amyotrophic lateral sclerosis, Parkinson disease, and AIDS combined—an estimated 140 million worldwide. Breast cancer survivors who suffer from secondary lymphedema are the tip of the iceberg. Veterans may suffer from lymphedema due to lymph nodes damaged by their wounds. Primary lymphedema is congenital, with symptoms that appear at birth or decades later without warning.
Dr Stan Rockson of Stanford University told me research revealed that in 4 years of medical school, students spend, in aggregate, between 15 minutes and half an hour on the lymphatic system; therefore, it is not included on most state licensing examinations. This means if you have a swollen limb or swelling in your groin or neck and go to your doctor, often he or she will not have been educated to properly diagnose your lymphedema. They might suggest you put hot compresses on it, which is the worst thing you can do. They might tell you to lose weight. Untreated for years, the swelling gets worse while the psychological and emotional damage profoundly affects your quality of life.
Millions suffer from lymphedema. Others might be suffering not knowing what they have. We need to educate them, so they can educate their doctors. Lymphedema needs to be recognized as a disease that deserves money for research. We need awareness. I am the spokesperson for LE&RN. Please help me spread the word. Go online to lymphaticnetwork.org to see what we are accomplishing and most of all to meet the people behind the numbers—the people who need your help.
Actress and Lymphedema Advocate for LE&RN