Axillary Web Syndrome (cording)

Lojo, hello,

Have you checked out the AWS information at StepUp-SpeakOut? There are links there for therapists to access as well. It's here:

http://www.stepup-speakout.org/Cording_and_Axillar...

Unfortunately it can come back--bummer! Hope this resolves again quickly. And I'm really sorry it raised its ugly head while you were doing a kindness for your neighbor. Hang in there--spring is just around the corner!

Be well,
Binney

Oh yes, Lojo, it hurts like....... you know. :-(

• I have it - showed up fairly soon after surgery (lump and 4 nodes) taken from same area. I can't straighten my arm out, it extends from the surgical site thru arm pit and down inside of arm to wrist. I have had one PT and scheduled for 3 next week. Need it to resolved some in order to start rads. It is horribly painful.

ah! I think I have this - I have a visible cord running under my underarm that I can feel pulling to my elbow. to releive it, we should massage gently? That's what my therapist says though I feel like taking a baseball bat to it? How do we make it go away?

Hi, Princess,

Sorry to hear you're dealing with this! Here's more information about it:

http://www.stepup-speakout.org/Cording_and_Axillar...

Please do keep us posted on how you're doing. Gentle hugs,
Binney

Hi All - I bumped this topic b/c during LE therapy yesterday (I'm going on 2 months straight now for stage 1 LE) my therapist found a cord in between drain scar and right breast. Most likely it runs under my implant but cannot see where it ends, it's buried. The cord reared it's ugly head as a result of MLD moving fluids and reduced swelling. I still have much tightness and pain in trunk, more cords may be discovered. Been reading that cording can lead to lymphedema. I think my body did all it could to prevent LE but w/ the combo of cording and bi lateral breast cellulitis this year, it had no chance. So more therapy. BTW I love my therapist, sounds sick but I'm glad she found the cord, so I know it's not just LE that is causing pain, tightness.

Hi Maria, yikes back to you too for a long term relationship with your therapist I have a sneaky suspicion I will to. Was it your LE therapist who recommended a new implant? How will changing your implant improve cording other maybe the cord is removed during surgery? Different typeor smaller implant? My PS gave me the referral for LE therapy so he is my treating Dr. For this aweful condition which was dx ( truncal and arm) when I started therapy in October. If any reconstruction needs to be done I am very comfortable with my PS. Comedo necrosis Is the most aggressive form of DCIS. Thanks for responding to my post.

So, I have tried to research this. And I hope there are no stupid questions. I had a PBMX. No nodes removed but I have the tightest stringiest muscles from my chest to my armpit. I would have called them cords and then I read this board and saw they have a word for it but it seems to be for women that had nodes removed. Thank you in advance!

jill, I am also dx 2012, July. When I read the threads on BCO, they talk about most being post op and resolved soon after though they can return. My did not develop until a year ago last fall and so about 8 0r 9 months post exchange. I have never liked my Allergen 410 hard and cold implant so nothing to do to with PT suggesting it. He thought it was worthwhile asking the PS as it does appear to extend under the implant and muscle. Calidancer, my PT and I hoped that the work he was doing plus stretching would cause that release or pop but no. What PT does do though is break it down and keep it from increasing in size which did happen last winter when I was away 10 weeks.

jill, so glad to hear that your LE therapist has been able to work on arm/truncal~~how far into the trunk and arm? Sounds like you really have had what I call "cancer takeaways" far beyond your dx and surgeries?

Katydids, yes when was your surgery as it can take time as jill says to figure out what will disappear with the healing process and what will slowly resolve or become perhaps an issue.

BTW, my PT keeps me going in many ways~~before BC, he kept me trekking which is what I kind of do for a hobby~~leads treks in the Himalaya and I had motorcycle injuries from decades ago that eventually gave me some grief just pre BC. I am thankful that not only is he awesome but he is young enough that he can keep me going for a long time! I am also lucky to have insurance that pays for much of it as Canadian insurance does not pay for physio unless you are poor or have extended insurance.

Unrelated, yesterday I had an abdominal CT scan with contrast (nothing to do with BC) and that was less than thrilling as they can't use the right Mx side and difficult to get it in the used up veins on the left. Finally called the IV team and I got the scan.

Hello, I am new to this site and was interested in the posts about AWS. I am 4 weeks out on BMX. I have cording on the left from axilla to the wrist which is quite painful to touch and with some movement. The right side is much better with just some tension in the axilla. I had my first PT session a few days ago with some increased soreness in the left arm even though she was not agressive with mobilization. My question is, what if any specific treatment techniques worked best to help this resolve? And did you develop LE later? Thanks

Sheeprus, there are some PTs that believe they can "massage away" the cording, however, they are wrong. DO NOT let anyone do that to you! They did it to me and it caused lymphedema.

Do ask if they have experience. Some don't even know what it is. I was seeing my pre BC to keep me trekking and we just moved right on to BC physio after each surgery and we were surprised when it appeared last year way after the last surgery which was the T/E removal with implant in~~that was almost two years ago. It was a 1cm in diameter a year ago and when I went away for 10 weeks it went to 10cm, now is twinned but not bigger and I have full ROM. I have never had any sign of L/E and do wear my sleeve when on long flights. I consider myself very lucky in that respect. Yoga helps.

Unbreakable, I don't really have any suggestions about finding a PT because I had no choice, there was only one place here that my insurance covered. But here is the lesson I learned the hard way. Don't let them do anything to you that hurts. The first time I went, the lady was very nice and gentle. She gave me exercises to do at home every day, said to stretch until I can feel the pull, but not to the point of pain. I have been doing these ever since (about 2 years now) and that's what has restored my ROM almost completely, and reduced the pain a good deal. But, the 2nd time I went, I got a different PT and she had the attitude that the cords could be massaged away, or broken up, or something. The LE lady had warned me never let anyone massage that arm, ever again. But this PT gal said she knew all about LE and acted like she knew what she was doing, and I stupidly believed her. Hindsight is 20-20 of course. But I should have stopped her the minute it became painful.

Anyway, long story short, the next morning I woke up with a big puffy swelling right in front of the armpit, and now I get to live with that for the rest of my life. Oh, joy.

Cording worse! In two weeks I have developed the biggest cord so far. It leads right from the armpit right under the pectoral major muscle. Hard to describe but if I lift my arm and put my arm behind my back (ROM still great) it can be seen and felt. Physio was blown away today as it WAS NOT there 2 weeks ago. The one that twinned a few months ago is the same but there is another small small one below that. So now 4 but the big one is crazy. My PT suggested I call my BS who discharged me two years ago after mx and I called and left a message. I am on a wait-list for a reconstruction revision (maybe change implant out) in the spring so will be asking PS if he can do anything. Mysterious if you read what the moderators say on these threads at this point in time. Never a hint of Lymphedema!