Axillary web syndrome can happen after breast cancer surgery.  It is a side effect of the surgery particularly if you have had a Sentinel lymph node biopsy (SLNB) or axillary lymph node dissection (ALND).  Health professionals sometimes call it cording.  It can develop within a few days or even take weeks or months after the surgery and can interfere with normal everyday tasks.

What causes Axillary web syndrome?

We are unsure of exactly why axillary web syndrome happens.  It is thought be due to inflammation and scarring of the tissues that surround the lymph vessels, blood vessels and nerves.  This in turn hardens the tissues.  This can then spread down the fibres of the connective tissue and can cause the cords.  

How do I know if I have Axillary web syndrome?

If you have axillary web syndrome you will either see or feel tight, thick rope like structures under the skin of your inner arm/arm pit.  This is why health professionals sometimes use the term cording as it can look like ‘cords’.  There may be one thick cord or several smaller ones.  The pain can be quite severe and deep within the arm pit.  On rare occasions you do not see the cords but will have the sensation of tightness and pain which will tell you they are there.  

You will notice that you can’t lift your arm up high without the pain/tightness which can be very restricting to normal life.  It can be particularly problematic if this happens before or during radiotherapy, as this treatment requires you to be able to lift and hold your arm above your head for prolonged periods of time.  

How to manage Axillary web syndrome?

It is important to keep the shoulder moving as best you can within your pain limits.  This is to prevent any further stiffening of the shoulder joint.  A health care specialist who has dealt with Axillary web syndrome can assist you with advice, exercises and specific hands on massage techniques to relieve the symptoms of Axillary web syndrome.  This best done as soon as you notice you have developed Axillary web syndrome.  The treatment can be sore but it’s an extremely effective way of removing the cords.  The therapist will also be able to give you hints and tips to help ease the pain.

If the pain is particularly bad, then your GP or pharmacist can offer advice with the best medication for you.  Its important that your pain is well controlled so you are able to complete the exercises regularly.  

Consider swimming as this useful at keeping the shoulder moving and reducing pain.

If you notice an increase in size of your arm, wrist or hand it is important to tell your breast cancer nurse as she may refer you to the lymphedema clinic for consideration of a special arm sleeve to help control the swelling, alongside particular drainage massage techniques.  

Thankfully Axillary web syndrome normally resolves its self after a few months with the exercises and therapy sessions.  Its important to continue with the exercises your therapist has shown you to prevent the Axillary web syndrome returning.    

Patient story:

Nicola, 38 years old, Right breast cancer diagnosed Dec 2019, Right Lumpectomy and ANLD surgery Aug/Sept 2020.

‘I first noticed that my right arm was restricted around 6 weeks after my surgery whilst trying to do my exercises.  I also realised that my arm pit wasn’t as smooth as the non-operated side, and that there was a vertical raised ridge.  It felt more tight than pain at first.  It felt like my upper arm was tied to my side and it stopped me from raising my arm.  I googled it and realised it must be Axillary cord syndrome.’

‘I knew Claire had experience with Axillary cord syndrome so booked an appointment and managed to see her the next day.  Claire was calm and talked me through what it was and how was best to treat it.  Claire used a heat pack to warm the area first then did a special type of massage on the cords which was extremely painful, we also heard loud cracks which was the cord breaking – we both celebrated when this happened!  After our first session I had full movement back in my shoulder and was surprised that I didn’t have any bruising after the session.  Claire went through the massage technique with me and she taught my partner how to do it at home, she also gave advice in ways to calm the pain down.’

‘I still do the exercises and massage techniques regularly now as I never want to have the cording come back again!! Thanks again Claire!’

www.macmillian.org.uk

www.breastcancer.org.uk

Smith, C., 2019.  Cording: a treatable complication of breast cancer surgery. British journal of General Practice: 69:395.