I am a 58-year-old male and have secondary lymphedema in my right leg due to the removal of a lymph node and follow-up radiation after being diagnosed with prostate cancer and lymphoma. I live in Central Pennsylvania, and there are very few doctors with any knowledge of lymphedema treatment in this area. I finally found a lymphedema clinic, but I had to wait several weeks until I could begin treatment. I was in extreme discomfort during those weeks and until the swelling was reduced. While the clinic was successful in getting my swelling down to a bearable level, I have been frustrated by the lack of medical knowledge among the local doctors. The technicians in the clinic were helpful, but they were not doctors, and I still have many unanswered questions.
I will say that my health insurance company, Highmark, has been very good about paying for treatment, including a sequential pump for circulating the lymph fluid.
After receiving excellent care for my various cancers, it amazes me that there is so little knowledge about a relatively common after-effect of cancer treatment. While at least most of the discomfort relating to my lymphedema has been relieved, thanks to the massage, sequential pump one hour per day and a compression stocking 12 hours per day, I still have reduced use of my right leg and frequent pain while walking in my foot, which no one seems to know what to do about. It would be nice to have someone who can help with this and other issues relating to my leg, since it has been made clear to me that lymphedema is not curable.
