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Joleystub's avatar
Joleystub
Member
3 months ago

Cording/axillary web syndrome

Hi everyone, it's been a long time since my last post and so much seems to have happened in my life in that time.

After having a lumpectomy and axillary lymph node removal on the right side, July 2024, I undertook chemo and radiation.  Since then it's been medication  treatment with Letrozole (hormone lowering) and Verzenio (cancer blocking).

I've undertaken some gym working, focussing on weights to build bone strength but still have residual side effects from all the treatments.

I've been to my lymphatic physio yesterday and she informs me that I have axillary web syndrome which is travelling from my affected breast down the fascia of my ribs.  Quite painful! And after her massage (sounds nice, but wasn't! 😩) I was wondering how many of you might have had the same?  Do you have any tips that could help me please?

It's lovely to reconnect again and hope to hear your story.

☺️ Jo

11 Replies

  • HiJoleystub​ My physio gave me exercises to repeat daily and then she checked in on me once a month applying laser or massage as needed. 
    But my cording was mild and it’s possible more frequent visits might be needed in your case. 

  • Hi Joleystub​ 

    I have had lumpectomy and axillary clearance in Nov 23, chemo and radiation.  I've found qigong has helped me with cording.  I had physio and lymphoedema massage earlier on. The qigong virtually got rid of most of my cording,  one of my lymphoedema ladies was quite amazed by it. I do it every day. Not sureif it might help you or not. I'm trying to wean out of the lymphoedema sleeve again after one unsuccessful attempt.  Off for a reading tomorrow... fingers crossed! 

  • The Breast Cancer Physio. ( Qld) has a helpful playlist of several  videos on her you tube channel https://youtube.com/playlist?list=PLjQRo6uAU0yVeIGbeS8-XGH-Sn6d12ydu&si=LXDSlO76UKP1RK2f

    Aslo use the search tool ( only on desktop  you tube viewer)  for cording within the you tube channels of  :-

    OncoPelvic PT, https://www.youtube.com/@oncopelvicpt

    Cancer Rehab PT, https://www.youtube.com/@CancerRehabPT

    Breast Cancer Rehab https://www.youtube.com/@breast-cancer-rehab

    It is also called axillary web syndrome. 

    Yes it is important to do the massage/get the special firm massage on the cord ,  i have heard it can really hurt, but the sooner you get on top of it the better,  it can take a while to fully resolve, some people get it and others don't, it can also increase your risk for lymphodema, so i hope your rehab therapist is also well versed and watching for that and helping you learn as you go.

    Great your a gym junkie, hope you know  you now need a Longer warm up and longer cool down, slow incriments in your weight lifting, no sudden intense sessions or you may get a sudden increase in fluid more than your body can process and get a fat arm ,even if wearing a proflyatic sleeve . If you have a break from gym for a holiday , then start back slower and lower  and build up the increase agian. Exercise physiologists who do cancer rehab and lymphodema are great at helping fine tune and refine your workouts with you to minimise risk.

    eg Peak Health Gymea. Sydney.

    Hopefully if your aussie your in a pre lymphoedema screening program too. 

     

    • Joleystub's avatar
      Joleystub
      Member

      Thank you Kristen.  Very good information!  My Physio is on holiday at the moment and even though I got relief from my massage on Thursday, it WAS painful.  I will look at the resources you have listed and hold out until I see her again in a couple of weeks.😃 

  • HiJoleystub​ likewise I have had cording (mild compared to yours) initially under the armpit and then down the side of my ribs.
    My surgery was 24 months ago.
    The cording and range of movement improved after seeing a bc specialist physio but I still have sensitivity in that area. In addition to practicing the stretches I was given the physio also used a laser. 
    I do yoga and find that the stretching and twisting really helps. 
    I take Letrozole and I think my feet and ankles are more affected by this (they get stiff and especially at night feel achey. 
    Wishing you relief soon!! 

    • I've been thinking about giving Yoga a go so thankyou for the prompt.  Letrozole does that to me as well. :(  

    • Katie46's avatar
      Katie46
      Member

      Hi Tri​ I think the Letrozole makes the muscles at the top of my legs/hips tight and uncomfortable when I first stand up if I've been sitting too long, but they losen out almost immediately when I start walking, and no pain or discomfort once I get moving. My feet and ankles are totally fine. The range of side effects from person to person is bizarre.

      • Joleystub's avatar
        Joleystub
        Member

        So many different side effects.  I was so hopeful after my chemo and radiation had finished that I would have none of the side effects but I guess that's not to be.

        Onward and upward 😅

  • Hi Joleystub, I had a lumpectomy, sentinel nodes removed, chemo and radiation. I've had some issues with my shoulder and tightness under my right arm and across my chest. I had an ultrasound and was diagnosed with inflamed muscles around the shoulder. I've had some fairly painful sessions with a physio, but it helped free up a lot of movement. I have exercises to do, but my range of movement still isn't 100% and I still feel some stiffness under my arm and across my chest, but not anywhere as painful and restricted as it was. I was a bit slack with my exercises recently, so I need to get back to those. I think the Letrozole and abemaciclib/versenzo also cause stiff muscles, particularly if I've been sitting for a while.

    • Joleystub's avatar
      Joleystub
      Member

      Oh the medication leaves us with terrible side effects.  How often are you going to a physio for treatment?

      I got relief on Thursday but now have to wait a couple of weeks.