By Rose Holland
Approximately three months after I completed breast cancer treatment, I experienced axillary web syndrome (AWS), more commonly known as cording. Axillary web syndrome is considered one of the most common side effects of breast cancer treatment and yet it is one of the least studied.
Luckily, I was aware of this potential side effect because at my cancer center in La Crosse, I met with a physical therapist as a part of my treatment. The therapist not only discussed ways to try to prevent side effects, but also identified symptoms to watch for, including swelling for potential lymphedema and the tight feeling and rope-like tendrils that occur with cording.
It was about three months after I completed my radiation that I experienced AWS. This was, in a big way, my reality check. I had breezed through my treatment of surgery and radiation with a positive attitude. It all went so quickly that I never felt the feelings. I never really took it in that I was experiencing cancer. When I was officially diagnosed with AWS it all hit like a ton of bricks. I think I cried twice before that, once at my diagnosis and once when I was told I had to wait for my Oncotype score to determine if I would have chemo. I have cried multiple times about my AWS, but it has been more about the reality that I experienced cancer, and I have side effects.
What is AWS? AWS most commonly occurs in the shoulder, arm and/or wrist on the side of body where the cancer occurred. It is commonly called cording because you can see and/or feel string- or cord-like bands. In addition to cording, you may feel pain, tightness and/or difficulty moving your arm. It can extend beyond the shoulder and arm to the ribs and breast. One of the biggest concerns is limited arm movement due to the cords. The cause of cording is not yet understood. It normally occurs within three months of surgery but can occur up to five years after treatment. Mine is mainly in my breast and includes my arms, ribs and at times my shoulder. I do not have severe limitation in my arm movement. It can be painful at times, but in my experience, it is more uncomfortable than painful.
How common is AWS? It is believed AWS occurs in over 35% of patients (Harris, 2018). Da Luz et. al (2017) noted that those with breast surgery and sentinel lymph node biopsy had an occurrence of AWS from 11.7 to 20% and those with axillary lymph node dissection from 38 to 72%. Even though it is the most common side effect, there have not been many studies on AWS.
How is AWS diagnosed? Most often AWS is first noticed by the patient. Because I knew what to look for, I was able to get an appointment with my surgeon within a week of my first occurrence. She confirmed my self-diagnosis and referred me to physical therapy.
What is the treatment? Treatments vary and can include manual therapy, exercise therapy and/or other interventions. All of the articles I read agree that an approach including multiple treatments works best.
Manual therapy includes lymphatic drainage, cord manipulation or stretching of the cord, soft tissue manipulation and scar manipulation.
Exercise therapy includes stretching, mobilization exercise, resistance training and endurance training.
Other interventions include heat, laser, compression garments, pneumatic pumps, Kinesio tape and hydrotherapy.
I went to a physical therapist when I lived in La Crosse. She used the manual therapy of stretching of the cord, lymphatic drainage and scar manipulation as well as exercise therapy that included stretching and mobilization exercises. She also recommended a compression sleeve and gauntlet when exercising, taking long flights or doing repetitive motions such as raking. I now receive continued treatment in Eagle River with an occupational therapist. She uses slightly different techniques and has me wearing a compression sleeve and gauntlet daily to keep the AWS better controlled in my arm. This therapist uses lymphatic drainage, a different type of cord manipulation and more soft tissue manipulation. I still do the same stretching exercises and have additional lymphatic exercises that I perform daily.
Is AWS related to lymphedema? Studies disagree if those with AWS are more likely to develop lymphedema. Some small studies indicate that those with AWS are much more likely to develop lymphedema, but larger studies are needed. I do have some lymphedema, but it is fairly controlled and usually reduced within a day or two.
What is the prognosis? For most patients, symptoms are relieved within three to six months. Of course this is not always the case. AWS will continue for some patients, usually with decreased symptoms after one to two years. I am one of the patients who continues to have AWS beyond six months. It is now a year and a half later and I continue to deal with AWS daily. My body seems to love making these cords and continues to do so. I am lucky that my insurance covers continued occupational therapy appointments, which help keep it controlled and especially manage flare ups. My flare ups are usually caused by overdoing things, which this summer included working overhead with my hands to put up a large tarp, helping build a deck and raking. High humidity can also create flare ups. When this occurs, I do some additional rounds of my home exercises.
What should you do? If you suspect you have AWS, reach out to your treatment team. Request a referral for an occupational or physical therapist who is certified in treating lymphedema. While AWS is not lymphedema, those who are trained in lymphedema are also knowledgeable about treating AWS. My occupational therapist mentioned that some doctors are unaware of AWS as a side effect of treatment. She has seen patients who were over a year out from initial cancer treatment and dealing with this syndrome whose doctors were unaware. Please let other survivors and doctors know about AWS so that timely treatment can be obtained.
Advocating for the future. Even though AWS is one of the most common side effects of breast cancer treatment, it is the least studied. Much more is known about lymphedema. There is no systematic study to identify the frequency of AWS over time nor the best treatments for it. Additionally, many physicians, including some oncologists, are unaware of AWS. Awareness of the syndrome and treatment methods could greatly benefit those who suffer from AWS and help them receive treatment quickly.
You can help bring awareness by making sure your physician and oncologist know about this common side effect as well as where they can refer a patient for treatment. If you feel you may have AWS, please get a referral to an occupational or physical therapist who is trained in managing lymphedema.
References:
Da Luz, C. M, Deitos, J., Siqueira, T. C., Palú, M., & Heck, A. P. F. (2017). Management of Axillary Web Syndrome after Breast Cancer: Evidence-Based Practice. Revista brasileira de ginecologia e obstetrícia, 39(11), 632–639.
González-Rubino, J.B., Vinolo-Gil, M.J., & Martín-Valero, R. (2023). Effectiveness of physical therapy in axillary web syndrome after breast cancer: a systematic review and meta-analysis. Supportive care in cancer, 31(5), 257. https://doi.org/10.1007/s00520-023-07666-x. Erratum in: Supportive care in cancer, 32(12), 784. https://doi.org/10.1007/s00520-024-08993-3.
Harris, S. R. (2018). Axillary Web Syndrome in Breast Cancer: A Prevalent But Under-Recognized Postoperative Complication. Breast care (Basel, Switzerland), 13(2), 132–135. https://doi.org/10.1159/000485023
Lippi, L., de Sire, A., Losco, L., Mezian, K., Folli, A., Ivanova, M., Zattoni, L., Moalli, S., Ammendolia, A., Alfano, C., Fusco, N., & Invernizzi, M. (2022). Axillary Web Syndrome in Breast Cancer Women: What Is the Optimal Rehabilitation Strategy after Surgery? A Systematic Review. Journal of clinical medicine, 11(13), 3839. https://doi.org/10.3390/jcm11133839
Rose Holland joined WBCC in 2024. She was born in Wisconsin and has a Doctorate of Education degree from University of Wisconsin–Stevens Point, a Master of Theology from St. Norbert College in De Pere, and a Bachelor of Business Administration from the University of Wisconsin–Milwaukee. Her career focused on advocating for military families and providing career development opportunities in the workplace. She was a military spouse for over 30 years and has lived in seven states and Italy, retiring in Wisconsin. She has a family history of breast cancer with her grandmother, aunt and cousin having had breast cancer. She was diagnosed in October 2022 and completed treatment in January 2023.