Cording (Axillary Web Syndrome)

Cording is so painful! I'm sorry you're dealing with it. My timeline was exactly the same as yours. I'd been cautioned that it could happen, so I knew immediately what it was and jumped to treat it right away. I am kind of the DIY type, so I hopped on YouTube and started doing the exercises I saw in a video. I think it was called "flossing"? If I remember correctly, I had to raise my arm up straight and lock out my elbow and then flex my hand. Whatever it was, it wasn't helping. After a few weeks I started PT with a lymphedema specialist, and when I showed her the exercise I'd been doing she was somewhere between unimpressed and horrified. She said that the new thinking was to be gentle, and that I was just further traumatizing myself. It took many sessions of her gentle stretches but she did make it totally go away. I'd had pain through my elbow and almost all the way down to my wrist, and now it's a distant memory. I wish I could tell you exactly what she did and exactly how long it took to go away, but just take my fuzzy memories as proof that it can be a thing of the past that you will forget about! Hang in there!

Hi.  I also had lumpectomy with sentinel node biopsy and had significant tightness in the armpit post surgery.  I started the exercises that were recommended by my physician team post surgery and it was very painful at first.  I did continue the exercises as it does take awhile to heal.  I did eventually have a physical therapist work on it manually with some manual therapy and exercises because it still felt like a rubberband about to snap when I lifted my arm.  The pain eventually subsided for me but I will say even now, 3+ years post surgery sometimes (not always) I lift my right arm and it is still slightly tight in the area but not painful.  I just do a lot of stretching all the time to keep it at bay but I will say having a physical therapist work with you is highly recommended.   My insurance plan covered that and I hope yours does too!  

My sister has terrible cording problems.  Tons on therapy but it didn’t help.  Therapist said that is very unusual though.  I’m nineteen year survivor and never had cording.  Mastectomy and 8 rounds of chemo, no radiation.  I wish you the best.

Thanks you all for your insight, greatly appreciate it. It sounds like PT is definitely in my future. I was just scheduled for my pre radiation treatment scans so PT will be on the back burner.  For now I’ll keep moving to maintain the mobility and range of motion I have in the hopes radiation doesn’t make it worse.  Fingers crossed this rubber band snaps eventually!

Thank you again, grateful to have people to reach out to who understand. 

I personally had to do PT for my cording before radiation. Your arms are above your head during radiation, and I couldn’t have gotten my left arm in place without therapy first. I also couldn’t have postponed the pain relief for another month. You must be a toughie! 😉 You’ll know more when you go to your planning session. 

Decades ago in the dark ages (1992) I had some problems with this after 29 nodes removed with my first round of breast cancer.  Fortunately a very good nurse told me an exercise to do to start with and some massage techniques.  Put a rope or cord over your shower curtain rod (make sure rod is stabilized!) or a door.  In the shower works better I think because you can use the hot shower water to help during the exercise.  Start with arm low and use the cord to help raise it until tight...don't over do it!  Gently raise and lower for about 5- 10 minutes or whatever you can tolerate.  As it loosens, increase the height you can comfortably raise the arm.  In the shower you can also do gentle massage under the hot water spray.  Mine was not just the arm, but also down into side of my torso so the shower worked really well.  Another place I used to stretch it was in my car.  I lived 60 miles from KU.  In the car I would "walk" my fingers/arm up and backward motion on the ceiling as I was driving out in our rural area and no other cars around!  You can also do the "walking" by standing sideways next to a wall and use the wall to do the same thing.  Another simple one is to reach your arms out in front.  Grip your hands together and use the good arm to help raise the other.  As it gets more motion, you can help pull the affected arm upward and over your head.  As always you want to gently stretch it but not hurt it.  It didn't take too long for me to get better.  But I did maintenance "walks" with it for over a year whenever I had the opportunity/time.  We live on 20 acres and I do a lot of manual labor outside which can tax every muscle.  After a day of hard work, I still will "walk the wall" in the hot shower just to stretch it and make sure it's doing ok.  If I have my clothes still on, most medical people can't tell which side/arm I had all this surgery/problems etc on.  Keep believing "I think I can!"  Patience was never a virtue of mine... until kids and breast cancer!  God has seen me through it all.  🙂  Specialists are wonderful people to get you started on the road to recovery.  Good luck!