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

Mastectomy Scar – Test The Scar Tissue

Mastectomy Scar-Evaluating The Scar TissueBy: Denise Stewart, founder of Breast and Shoulder Rehabilitation and Breast Cancer Occupational Therapist.

Why assess mastectomy scar tissue?

  1. To help communicate your concerns clearly.
  2. To help decide the need for specialized breast cancer rehabilitation services.
  3. To evaluate the effectiveness of protocols used to treat mastectomy scar tissue.
  4. To reduce chronic pain experiences.

There are frequent reports of a higher rate of arm and shoulder dysfunction and pain experienced by women after mastectomy compared to women after breast conserving surgery. There is a sound research hypothesis or clinical question to this finding:

Does reducing abnormal tight /thick scar tissue at the mastectomy site reduce shoulder and arm dysfunction?
Based on my clinical experience, the answer to this question is YES- if the scar tissue is properly assessed and a suitable rehab program undertaken. Let’s look at assessment first.

Are there medical assessments to evaluate the level or degree of mastectomy scarring?
MRI was used to evaluate a group of women with radiotherapy fibrosis after mastectomy in 1994 and no reliable connection was found between MRI findings and the woman’s scar experience. In 2005, the Vancouver Scar scale was tested by a small group of women (59) with breast cancer scars and was compared to a scar self- assessment rating and a pain scale rating.

The recommendations from this research were:

  • The Vancouver scar scale (VSS) is reliable
  • There was agreement between the VSS and patient’s self- assessment rating on scar pliability and colour.
  • Patient satisfaction was linked with the self- assessment rating of scar pliability and pain, but not with the measures of the VSS.

The Vancouver scar scale was then compared to a Patient and Observer Scar Assessment Scale (POSAS) with a small group of women with breast cancer (line) scars. This research suggested that the POSAS was valid, reliable and more comprehensive: it matched better with patient’s ratings.

The POSAS has a rating scale with 2 parts (free download at http://www.posas.org/downloads/):

  1. Patient assessment: a self –assessment.
  2. Observer assessment.

The areas you can rate your scar are:

  • pain and itching
  • color
  • stiffness and thickness
  • irregularity and your overall opinion

If you are looking for a way to measure, compare over time or communicate how your mastectomy scar impacts on you or to ask about treatment options, then the POAS scale may be suitable.

Download the scale, rate your scar and use this in your discussion with your breast cancer team member. If the ratings are high in the specific areas of pain, stiffness and irregularity, there are clear reasons for you to request rehabilitation treatment to improve these experiences.

Is there a more specific self- assessment test for mastectomy scar tissue?
The good news is that patient assessment has been recognized as a bench mark to compare new tests to. I am going to suggest that we increase this benchmark – by increasing self-assessment skills. The self- assessment techniques described below have been used in my clinic for many years and are based on detecting mastectomy scar tissue barriers. The important feature of this test is that the mastectomy scar line and the mastectomy chest scar are evaluated:

  1. Assess the mastectomy chest scar first. Assess the tissue in 4 areas:
    a.  above the mastectomy (surgical) scar line
    b.  below the mastectomy (surgical) scar line
    c.  outside both ends of the mastectomy (surgical) scar line – this will be two separate areas.
  2. Assess the mastectomy (surgical) scar line next.

Mastectomy Assessment
The assessment uses a flat hand to assess the stretch of the soft tissues at any direction and at any depth. The assessment will be able to detect where there is a lack of stretch as you will be able to compare to the stretch in other places on your body.
This self- assessment is safe as long as there are no open wounds.

If you like the concept of being able to assess your mastectomy scar tissue using a “hands on” scar tissue barrier approach, then your next step is to contact your specialist rehabilitation provider to get training in the use of this technique at different levels on the mastectomy chest scar area and the mastectomy (surgical) scar line. It is my experience that this type of testing is not general knowledge and does require training and support to learn the technique at deeper levels. Your therapists will also be able to provide barrier release treatments and instruct you in your home treatment program.

Barrier release techniques are not the only treatments that can be used for tight mastectomy scar tissue. Kinesiotape, low level laser, gentle cupping, yoga and stretches are additional treatments used by breast cancer rehabilitation or exercise specialist service providers.

Next Blog: mastectomy and cording (AWS).

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.

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