Most of us cancer patients know by now there are many side effects from all types of cancer treatment and many will consider themselves “lucky” if they have only experienced mild side effects when treatment had finished. Oh the joys! This blog will specifically focus on those who have had breast surgery for breast cancer. Most of us having this type of surgery have either an axillary clearance or a sentinel node biopsy alongside our surgery. For some, usually weeks after surgery a condition called Axillary Web Syndrome (AWS) may occur. Other terms for this condition are “cording” or “lymphatic cording”. There seems to be a lack of information or education for patients on the subject and it only seems that when the symptoms occur that a patient becomes aware of it. Most of us are familiar with Lymphoedema because we are given a lot of information preoperatively and postoperatively in the hospital so that when discharged we are aware of what precautions to take to reduce our risk of developing symptoms. It is quite obvious when Lymphoedema occurs with the onset of heavy, swollen limbs but the nature of Axillary Cording can cause a lot of pain, discomfort and reduction in full range of movement, all symptoms someone would expect in the aftermath of surgery. Ignorance of this condition may therefore prevent someone from seeking medical advice until later.
What is it?
Axillary Web Syndrome was initially described as a complication of axillary clearance and more recently after some cases of sentinel node biopsy. It is when thick or thin rope like cords can be seen in the axilla and in some cases can stretch all the way down the arm as far as the hand. It is not known exactly what causes it but there seems to be some evidence of a lymphatic origin and some suggest that it is a fibrosis of the lymph vessels. Others think that there may be some venous fibrosing also. The risk factors seem to include people of a younger age, those with a low body mass index and those who had a greater number of lymph nodes removed. It can occur within a few weeks of surgery and resolves with appropriate treatment. Now however, some are suggesting that if not managed correctly that it may persist for a number of years after surgery. My initial surgery was in 1999 and I also had an axillary clearance at the time which was the standard treatment then. I had problems on and off with axillary cording which were resolved with some therapy. In 2013 I had a sentinel node biopsy to check if any remaining nodes were present, which seemed to cause a flare up again. I still get symptoms periodically which is either resolved with self-management or I may require some physiotherapy. Lymphnet.org and Breastcancer.org give more comprehensive information on the condition. It is also worth noting that it does not seem to be a risk factor for developing Lymphoedema.
As with most medical cases, early recognition of symptoms and prompt referral are necessary to improve outcomes. The good news is that it can be managed well especially if identified sooner rather than later. From what I have researched most physiotherapists that specialise in Lymphoedema also treat this condition. Non-steroidal anti-inflammatory pain killers like Ibuprofen can help with pain. Treatment involves a variety of therapies such as the application of moist heat to the cord, stretching and gentle massage or manipulation of the cord, myofascial release and home exercises.
My physiotherapist recognised the cording and worked on it for a series of visits and showed me how to manage it at home. A combination of Manual Lymph Drainage and mobilisation of the cord over a few visits improved the range of movement of my shoulder and allowed the cord to “soften”. In some cases some have felt a “snapping” sensation with immediate relief and improved range of movement. There seems to be no standard treatment for this condition as each individual requires a unique treatment plan, therefore a combination of some or all of the above may be chosen. For me I continue stretching and strengthening exercises when I practice yoga and pilates and go for physiotherapy when the symptoms worsen.
People need to be educated in order to recognise the symptoms early and receive prompt attention. Perhaps a good time to discuss Axillary Web Syndrome with patients is when health care professionals are giving advice about the risks of Lymphoedema as the post operative exercises seem to benefit both conditions.
More research is needed to identify exactly what causes AWS and it would be useful to have more up to date evidence of how long this condition can affect people. Perhaps I am just a statistical anomaly! Seriously though, with the correct information available to health care professionals, better care plans and hopefully quality of life issues will improve for people undergoing surgery to the axilla.
Has anyone else had similar issues with cording ?
If so, how did you manage your symptoms?
daLuz C.M. et al (2017) Management of Axillary Web Syndrome after Breast Cancer. Evidence Based Practice. RBGO-Gynaecology and Obstetrics.
Heather, A., Kochler, L., Todd, M. (2017) Venturing out on a limb. The American Journal of Medicine. Elsevier Inc 002-934311.
Smoot, B. et al (2016) Predictors of Altered Upper Extremity Function During The First Year After Breast Cancer. American Journal of Physical Medicine & Rehabilitation. 95(9):639-655.
Wariss B.R. et al (2017) Axillary Web Syndrome is not a risk factor for lymphoedema after ten years of follow-up. Support Cancer Care. 25(2):466-470.