Saturday, June 10, 2017

Almost 2 months since top surgery, but mostly about "Cording"

I am healing well and am able to lift normal amounts of weight so doing some carpentry wasn't an issue. The skin on my chest feels a little tight, but not nearly as much as it did a month ago. I recommend doing the exercises that the doctor tells you to do and as frequently as you are supposed to do them if you don't want to be all bent inward!
However, the thing I wanted to discuss in this post is a condition called "cording". Cording is the short and easy name for Axillary Web Syndrome. The weird thing is that no one really knows how or why it happens, but it happens to about 20% of people who have mastectomies, including transgender patients and women being treated for breast cancer.  What happens is connective tissue grows in "cords" from the incision sites in the armpit or on the trunk and forms long strands of stretchy, (but not stretchy enough) "cords" that appear under the skin. They can run all the way from the armpit to the wrist or from the chest incision site to..who knows where. As soon as I heard it doesn't happen to most people I knew that it would happen to me because I'm special. Great...and it DID happen to me. I have cording in my left armpit down to my forearm and from a part of the incision on my chest. The left arm one happened first and I could feel a weird pulling sensation before I could see it under my skin. The cording on my chest happened a few weeks later and was raised under the skin and visible when I raised my arms up over my head. somewhat like in the image below. I pushed on it while it was taut under my skin and I actually felt it tear away from whatever it was adhering to. Ouch, but not incredibly painful. My wife was far more affected than I was. Anyway, I brought it to my surgeon's attention and she referred me to a physical therapist, who I start seeing next week. Since I tore mine I have no images to share but from the web there are some available:


Image result for Axillary Web Syndrome
http://www.mylymphedemalife.com/axillary-web-syndrome-aws-also-known-as-cording/


Axillary Web Syndrome
**Photo taken by Elisabeth Josenhans, Hamburg, Germany
elisabeth-josenhans@hamburg.de

  1. Cording is rarely discussed as a complication by the surgeon; My surgeon didn't mention it.
  2. Some forms of cording may be difficult to see and feel; If you do feel it, you probably won't know what you are experiencing.
  3. Some women do not want to complain to their surgeon; (many people feel that doctors are gods)
  4. There is no recognized comprehensive physical assessment of Cording; Yep
  5. Cording assessment may not be a standard practice in the breast cancer clinic; and
  6. There is very limited research into treatment protocols. I find much disagreement about what it is and why it happens. Treatment?  Not much.
Note: More research and conversations with specialists lead me to believe that cording originates where there are damaged lymph nodes.