This morning I finally got an appointment with a physical therapist to find out what that pull in my arm is and what is causing the swelling. I’ve been losing sleep, literally, because I was sure it was lymphedema. Lymphedema is the swelling of the arms or legs. It can occur after a mastectomy along with axillary lymph node dissection or a after a sentinal node biopsy. Because I had cancer in two of my 12 lymph nodes, they were removed at the time of my mastectomy. Getting lymphedema is a fear of mine because once you have it, you have it forever. There is no cure, just maintenance. I’m convinced that I already have a mild form of lymphedema in my right foot (it has always swelled up and doctors can’t explain why) so to have to deal with it in another extremity seemed just too overwhelming.
Part of the purpose of seeing this particular therapist was to get evaluated for lymphedema but when I asked the therapist what she thought she said, “Well, I can’t diagnose you. A doctor needs to do that.” Excuse me? I found that really frustrating because I didn’t really get an answer but, here is what I learned.
I have been diagnosed with axillary web syndrome which is also known as cording. Cording can occur in women who have had a mastectomy. When you develop cording you can literally feel a cord underneath your skin. Mine feels like a guitar string. It is not a muscle. According to the therapist, no one knows exactly what it is, why it happens or what to do about it. It does have something to do with the lymphatic system (although I wrote to my surgeon who says it has to do with the tendons but I’ve read several articles that say differently). Cords are painful and tight, like a pulled muscle and it restricts your range of motion. For example, I have a hard time straightening my elbow or reaching too far right now.
There isn’t a lot of research on axillary web syndrome but I found this case study and this one when doing my research. The first one was published in 2009 and the second in 2007 so, I don’t know what information is still current. This is what was said about axillary web syndrome in the second article, Treatment of Axillary Web Syndrome: A Case Report Using Manual Techniques. “The surgeon postulated that when lymph nodes are removed, the adjacent lymph vessels, which are now non-functional, become fibrosed. They can attach to the axilla or chest via scar tissue. These hardened lymph vessels become apparent when the patient lifts her arm and stretches the tissue. Inflexibility in the lymph vessel can lead to significant pain and avoidance of movement. Adaptive postures can then lead to a loss of arm range of motion.”
Treatment, for now will include weekly appointments with the physical therapist. I have two stretches to do, twice a day. I will be learning lymphatic massage to help reduce swelling.
As for the question of lymphedema, the therapist says there is cause for concern when one arm is 2 centimeters or more larger than the opposite arm. There is definite swelling in my right arm, which I knew about. In one area it is exactly 2 centimeters bigger than my other arm. However, we don’t know what size my arm was before I developed this problem so it’s very possible that there is a difference in size between my two arms to begin with. Also, cording can cause swelling in the affected area.
I left the office today with some answers, which is really good and can be dealt with but I haven’t been given full reassurance that I do not have lymphedema. I am also confused and frustrated by the fact that measuring the arm is not part of standard care before and after a mastectomy. If developing side effects such as cording or lymphedema is possible, shouldn’t we have a baseline in order to properly diagnose?
Has anyone else dealt with axillary web syndrome? What was your experience? How can we let our surgeons know that preemptive screening can be helpful for future diagnosis?