I experienced cording after my mastectomy. It's the one side effect I wasn't prepared for.

• After learning I had breast cancer, I had a double mastectomy in January at the age of 34.
• In the first few weeks of recovery, something felt wrong in my right arm. 
• It felt like there was a tight rubber band underneath my skin. I learned I had cording.

This past December, I found out I had a form of breast cancer called ductal carcinoma in situ, or DCIS, in my right breast. I have the BRCA2 gene mutation, and after 10 years of preventive screenings, the timeline for the mastectomy I'd been planning on getting in my early 40s was sped up, and the surgery would no longer be preventive. I was 34 and the surgery would be to remove already-existing cancer.

It all happened so quickly. One day, I was getting a routine preventive mammogram, then suddenly, I was getting a biopsy, and a week later, I got a call telling me I had cancer. There was a lot of information to process at once. I had to decide between a lumpectomy and a mastectomy (I chose the latter). Next, I had to decide whether to get a unilateral or bilateral mastectomy. Then, I had to choose both a breast and plastic surgeon. My head was spinning, and it was hard to believe it was real.

While explaining my upcoming surgery and risks, my breast surgeon mentioned that she'd be removing one lymph node from the same side they'd found cancer to see if it had spread to the lymphatic system. I was told that when lymph nodes are removed, there's a risk of lymphedema, swelling due to a buildup of lymph fluid in the body, and something called cording, which wasn't really explained. I simply nodded, and we scheduled my surgery for January.

I had never had major surgery before — just a tonsillectomy at age 7 and my wisdom teeth removed at 14 — so I had no real frame of reference for how I'd handle a double mastectomy. No matter what my doctors told me about pain scales or potential complications, no matter how much I read about the experiences of others, there was nothing that could truly prepare me — especially when I experienced cording, something that's understudied and often overlooked.

I didn't realize I had cording at first

When I woke up after my surgery, I was shocked that my chest was fairly numb. I was sore on my sides where the tubes for my drains were coming out, and both arms were sore — especially my right one — though I assumed that was normal. Nurses were in and out of the room, checking with my partner and me to ensure we had what we needed, and I had a fitful night of sleep. In the morning, my plastic surgeon checked my incisions before the physical therapist showed me some stretches, and we were sent home.

I had expected that my mobility would be limited after surgery, but as I did my stretches, the discrepancy in the range of motion between my left and right arm became obvious. Something felt wrong; my right arm felt tight, like a dried-out rubber band was running under my skin between my armpit and thumb, and I couldn't extend my arm fully. I could also see lines underneath my arm in some places, at a bend in my elbow and under my armpit. It was unsettling.

When I went to the doctor for my two-week follow-up, I described what I was experiencing and showed her a tight, rope-like structure underneath my armpit; she told me it was cording and stretches would help. I was supposed to find a physical therapist a few weeks after surgery as part of my recovery, and I started searching for one who specialized in breast-cancer rehabilitation or mentioned cording on their site; it took hours of searching and multiple phone calls before I found someone.

What is cording after mastectomy?

In all my years working as a health editor and getting preventive breast-cancer care, I had never heard of cording or axillary web syndrome; neither had anyone in my family or any of my friends.
It's actually a common condition experienced by up to 86% of patients following breast-cancer surgery that includes the removal of one or more lymph nodes. It can develop a few weeks after surgery but can also occur months — or even years — later.

With cording, patients develop one or more ropelike structures that extend from the armpit (the site of the removed lymph node, or nodes) down the arm; they may only be a few inches long or they can go down to the wrist or hand. Some people also experience cording that extends from the armpit down their chest or trunk.

The cords can be thin or thick, and you can often see them underneath the skin, especially when the arm is extended, which can be painful. Cording can be treated with physical therapy; patients often find stretching and massage can help decrease pain and increase mobility.

Some people who experience axillary web syndrome find that after a few weeks or months of proper treatment, it resolves entirely and never comes back, while others — including myself — find some relief only to experience frustrating flare-ups, often without knowing why. I have multiple cords extending down my arm through my wrist and hand, and from my armpit across my chest to my mastectomy scar.

It's hard to describe how much cording has affected my life over the last nine months. When it first felt like my cording was nearly resolved through stretching and massage a few months after starting physical therapy in February, I felt hopeful for the first time since my diagnosis; it seemed like I'd finally be able to start doing the things I had missed doing from before my life got thrown off course.

Then, one day in May, I woke up in pain again; throughout the day, the pain increased steadily, until it was more acute than what I'd experienced immediately after I woke up from surgery. I had new cords, and there was no obvious reason. My physical therapist and doctors were stumped, and I was discouraged; I went from planning my return to the gym to having trouble holding a half-full Brita pitcher with my right arm again.

Physical therapy and stretching helped relieve my pain again over a few months, only to have another sudden flare-up. Because they don't know exactly what causes it initially — or what can cause a flare-up — I am always anxious that I will wake up in pain.

Though this part of my recovery has taken longer than I hoped it would — and at times, has reduced me to a puddle of frustrated tears — I'm still thankful for my health. Getting a double mastectomy removed the cancer I had and lowered my risk of developing cancer in the future; that's something that can never be taken away from me.