Mastectomy and Axillary Web Syndrome


Mastectomy & CordingBy: Denise Stewart, founder of Breast and Shoulder Rehabilitation and Breast Cancer Occupational Therapist.

What is Axillary Web Syndrome?
Axillary Web Syndrome is known as AWS or Cording. Cording is easier to say and more accurately describes the problem.

Cording is tightness of normal tissue within the body and occurs predominantly after breast cancer surgery. It mostly develops in the first eight weeks, during the post- surgical healing phase, and sometimes during chemotherapy or after radiotherapy. Is it common? a review in 2014 of 37 studies, identified up to 84% of the women experienced cording after breast cancer surgery.

Initially, the tightness causes significant pain and can stop you from raising your arm or straighten your elbow. The tight tissue is just under the skin and can vary in thickness and presents as:

  • thin strings;
  • rope or cord like; or
  • a really thick band of tissue.

The very thick band which extends into the armpit has as yet not been recognized in the research literature as being typical of cording, however matches perfectly to the location and pain experience of the thinner cording experiences.

The tight tissue extends from the breast / chest area into the arm at varying levels:

  • to the armpit;
  • to the upper inside arm;
  • to the inside elbow;
  • to the inside wrist; and
  • at the trunk.

The tight tissue is thought to be part of the lymph system, which is normally fine, soft and very stretchy vessels, just under the skin. In this area of the body, the lymph system travels from the side of the rib cage across the armpit and then down the inside arm.

Researchers currently offer no clear understanding about how or why cording occurs and surgeons may refer to Cording as “normal”. Therapists experienced in breast cancer rehabilitation do offer an explanation – breast scar tissue that forms during healing attaches to nearby tissues. Initially scar tissue lacks length and stretch and may adhere to structures such as nearby lymph vessels. This can then result in a corresponding reduction in the amount of stretch at these structures.

Cording assessment relies solely on seeing tightness, feeling tightness and the presence of a common pain experience. I believe that this reliance on physical assessment has resulted in many difficulties faced by women experiencing cording:

  1. Cording is rarely discussed as a complication by the surgeon;
  2. Some forms of cording may be difficult to see and feel;
  3. Some women do not want to complain to their surgeon;
  4. There is no recognized comprehensive physical assessment of Cording;
  5. Cording assessment may not be a standard practice in the breast cancer clinic; and
  6. There is very limited research into treatment protocols.

Because of these factors it is important for women, to be aware of what Cording is and how to convey this in the best way to their breast cancer team member so treatment options can be sought.

If the mastectomy scar line and the mastectomy chest scar are tight and lack stretch then it may be difficult to see Cording. In this case the arm may not be able to be raised above shoulder height and the tight band you see may not be Cording, but the pectoral muscle. However Cording is characterised by a common pain experience: pain is felt down the inside arm and may extend even to the wrist, or side trunk, when reaching up high or out to the side. So although it may be difficult to see the tight tissue – the pain and the tightness is real and you should seek specialised rehab services.

Cording can also be difficult to see if there is a generous amount of stretchy skin or fat in the arm pit, trunk and upper arm. The tight band of tissue usually extends and connects to very deep tissue at the side of the breast. Very often this connection to the breast scar tissue is missed because of the depth of the tissue and the impaired feeling in this area after a mastectomy. Yet in this case the telling symptom is the woman feels upper arm tightness and stinging pain down the inside arm or at the trunk during stretches.

The aim of good Cording assessment is to be able to initiate your best recovery plan. If you need help to assess whether you could have Cording, I have published an e book, Cording: self-assessment guide. There are many more photos and steps to help you see, feel and measure the post- surgery tightness and movement restrictions secondary to Cording. More details can be seen at: http://www.breastandshoulder-rehab.com.

Denise Stewart Breast Cancer Occupational TherapistDenise Stewart, founder of Breast and Shoulder Rehabilitation and an Occupational Therapist trained in Australia at University of Queensland. Her career started at a major public hospital, providing rehabilitation to people with very serious and chronic illness and injuries.

Next Blog: Treatments for Cording

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Comments

  1. Interesting. I am 3 years out from my mastectomy, chemo & radiation. No one has ever used this word with me, but I did spend a number of weeks in physical therapy and OT due to loss of range of motion of my right arm, and tightness in my muscles. I’ll have to check out if I have “cords”. The PT & OT definitely helped me.

    Liked by 1 person

  2. Fiona Lyon says:

    Fabulous article Denise!!!!!. Now nearly 5 years post diagnosis for mastectomy and right lymph clearance. Agree that the surgeon showed little interest in the distress or functional implications of this condition”its just scar tissue’ he said. . Although he warned me that I must stretch so that I didn’t become an old lady with a stiff useless arm. The cords appeared overnight within the first week and looked like the spiderwebs in Miss Havisham’s lounge room. It was extremely distressing as I had not been warned about the condition. Hospital nurses were useless. About 4 sessions of physio got me started. As on OT, I donned my therapy hat and I found that an early swimming to be my miracle cure…. both for the cording and lymphoedema. I also continued to stretch, stretch and stretchand stretch. Door frames were my best friends! I still need to stretch. I used flippers to minimise strain and help me swim in a straight line. I went swimming before I started chemo , (as soon as the wounds were healed) then as soon as I had stopped chemo, but still during radiation therapy. The swimming was incredibly effective. My function and self esteem improved likewise. After nearly 3 years I became able to swim backstroke in a straight line, minus flippers. I was able wear sleeveless tops without trace of the cords after about 2 years. No recurrence in Lymphoedema or cellulitis for 3 years. Have recently taken up dragon boating to keep my whole body fit. Thanks for this great article and pictures. ( I wish I had taken pics of my armpit, but it was so distressing I did not want to look).

    Liked by 2 people

    • Brilliant! Thanks Fiona for sharing your specific case – women need to hear about scar tissue, cording and the importance of some form of intervention, in your case swimming, that may need to be done again and again….because that is the way to best manage serious active scar tissue.
      In the next blog I will send a link for the international case study project I launched last year- it offers some great examples of treatment interventions in addition to stretch and outcomes.
      Cheers from Australia!

      Like

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