I find myself in a new community, with a message to share. I have recently celebrated my 10th anniversary of survival of stage 4 IDC breast cancer. I began developing mild lymphedema in my left arm about two years after finishing my treatment. I had no problems controlling it. Then six years after my treatment ended I began to experience pain and weakness in that arm. After many months and firing one of my Drs. I was diagnosed with delayed radiation plexopathy. " HUH? Never heard of it..whats that? It doesn't happen anymore"....these were all things I thought and heard over a two year period. Many of them by professionals.
So, to enlighten you. Radiation induced or delayed radiation plexopathy is damage of the nerve bundle that feeds the arm. The damage is a combination of demyelinazation of the myeline sheath and scar tissue around the nerve. The result is that the nerve signals are weakened or completely cut off. It is believed that the chances of this happening is approximately one in 10,000; that is one in every 10,000 who receive radiation to the breast area as well as axillary radiation treatment (The underarm =]). What does this have to do with Lymphedema? Well, as the muscles weaken it becomes harder for the body to pump out the lymphatic fluid. Therefore a mild case of lymphedema may develop into an accute case.
At the moment there is a community of about 12 people who have this condition, we meet on breastcancer.org under lymphedema after surgery. The extent of each of our RIBP varies. My own condition took four years to progress to complete paralysis of my arm. I have also recently been diagnosed with Horner's syndrome,(my eye) which is caused by damage to the nerve bundle at the top of my lung. My shoulder hangs about two inches below the socket, and adds about 20- 30 lbs to my weight when it is full. I have severe chronic nerve pain in my arm and upper back. My lymphedema is controlled by manual massage and wrapping, flexitouch sessions and until about a year ago I did a water work out. Water therapy is great for lymphedema control, and I did that until about a year and a half ago, when I was advised to stop by my therapist.
We are all anxious to get the word out to everyone that this condition does exist. And to confer on treatments and solutions.
