Thursday, March 22, 2012


It's official.  I have Axillary Web Syndrome. I have a cord in my left armpit.  I can feel it and see it now if I hold my arm up a certain way.  It feels very strange like tiny ropes being pulled in my arm and armpit.  It is the result of some of the vessels being damaged during the sentinel node biopsy. (Sentinel Node Biopsy was the biggest set back of surgery day for which I received the bill of $588 for yesterday--I wonder if they took anything off for waiting over 2 hours for a five minute injection.)  The lymphatic system has been disrupted and now it's trying to restructure itself to find a way for the lymph to drain.  Here's a picture of someone much skinnier than me.  Luckily I have some meat on my bones and mine doesn't stick out like this.   

There is shockingly little information available about it.  Prior to surgery, I heard all about the lymphedema risk, but never this. The few pieces of information that I have found out there all contradicts each other.  One study says that it occurs to 6% of patients, another 40%, another claims that as many as 72% of patients develop it but it's just not well documented because most women think that it's just pain associated with mastectomy and don't notice because they never see the cords pop out.  Some studies say that leads to an increased risk of lymphedema, others disagree.  All studies agree on treatment involving stretching, which I have already started and am doing several times a day. The cord and developing web will go back to normal or pop in weeks or months, but there's no way of knowing how long it will be. However, some women are still bothered by in years following their mastectomy.

As much of a pain as this is, my motto is . . . it's better than cancer.


  1. Oh Renee...I am sorry that you have this complication. I do know that you are a very determined lady and that you will do every instruction to the T, in order to help make this go away. I will pray that it will just be weeks and not longer. But you’re right, better than cancer! You are such a role model to me and so many others. So brave, strong, persistent and beautiful! Thanks to all your pre surgery hard work with Crystal you get to post that you have meat and not flab on your arms!!!!! Let me know if I can do anything to help, even if it’s just a daily call to remind you to do extra stretches. I know I might need that, I doubt you will.


  2. That really stinks! :o( It sounds like you are doing everything you can to make it heal faster. You are right, it is better than cancer! Good luck! I hope it goes away soon! :o)