Education a MUST!
Authored by Anonymous

I hear so much about lymphedema in the arms following treatment for breast cancer, but little about lower limb problems. I had a radical hysterectomy in '92 and about six months later my right leg suddenly swelled from the foot to the knee. It gradually went down over a period of several days, but the ankle continued to swell intermittently and gave me trouble. I never heard the word lymphedema mentioned until I underwent a mastectomy in '96. Fortunately, I did not have to have lymph node removal or any chemotherapy or radiation. Last spring my right leg really started to swell. I attributed it to the weather and the stress I was under as my father was dying of cancer. I was use to humid weather causing problems with swelling and looked forward to winter. But the leg continued to swell. I finally equated what was happening to my leg with the little I was told about lymphedema when I had the mastectomy. So I went on the Internet and found the site for the National Lymphedema Foundation. Help at last. I contacted a therapist about an hour's drive away and after an oncologist verified that there was no reoccurrence of cancer, began treatments.

The aggravating thing is that, when I asked the therapist what would have happened had I been educated about the possibility of lymphedema and knew what to watch for, would I be in the condition I now am. He said that if we had started treatment when I first started having swelling, that he would have taught me self lymph drainage and put me into a compression garment and there is a good likelihood that it would not have progressed to the stage it has. Now I have to bandage every night, do lymph drainage once a day, wear a compression garment all day and do special exercises while bandaged. I'm also supposed to get in at least 20 minutes of exercise--walking, swimming or such---every day. If I manage all that in addition to working all day I still have to roll the bandages each night. Lymphedema has taken over my life. It tells me how far I can drive, how long I can sit, how long I can be on my feet---it's a pain in more ways than one.

I realize now that the condition was worsening before the swelling became so much more obvious. But I didn't know the warning signs and symptoms. That makes me angry. There is no excuse for not telling a patient all the side effects of any treatment, and lymphedema is definitely a possible, if not probable, side effect of many cancer treatments. Before I found help, I was almost crippled by the swelling. I don't cry easily, but I went home from work in so much pain each night that I felt like screaming. And I was scared. I didn't know what was happening. And I didn't know the proper way to care for the leg. Now I'm very careful about nicks, bumps and bruises. If a cat walks into a room I'm in the first thing I ask is if it is de-clawed. If not, I make sure it keeps its distance. As I said, it's taken over my life.

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