Understanding Post-Mastectomy Syndrome

Post-mastectomy syndrome is a condition affecting some women after surgery for breast cancer. This syndrome occurs as nerves begin to regenerate and heal.

One of the unfortunate side effects of mastectomy is a loss of sensation in the chest area. The blood supply and nerves that provide feeling travel through breast tissue therefore, when breasts are removed some nerves will be damaged or cut. When the normal pathway for sensation is disrupted, numbness usually occurs. If you think about nerves like tiny highways traversing the entire body, it makes sense, when the pathway is destroyed, that nerve signals won’t work properly. As those little highways are repaired, some nerve impulses will flow once again and some will have to be re-routed. Some nerves will be permanently damaged and will be unable to supply feeling again. Over time, as nerves have a chance to regenerate, some feeling can return. When this happens, the condition is known as post mastectomy syndrome. It includes symptoms such as swelling of the chest wall, sensitivity to touch, severe itching, restricted range of motion, axillary web syndrome (also called cording, in which ropelike tissue structures form under the skin of the arms) and breast tightness. These symptoms, which can range from mildly annoying to severely restricting, might not be present immediately after surgery but may appear several months to several years later. I was surprised to learn, even after three years post-surgery, these sensations are fairly common in women who’ve experienced bilateral mastectomy after breast cancer.

When I experienced an overwhelming itching sensation one day, I thought I’d come in contact with some allergen and reported it to my breast surgeon. She examined my skin and said it looked like a case of Eczema, but after months of treatment, the itching continued. Next, I began to experience small little zaps similar to an electric shock. They would occur at random times of the day or night. They weren’t necessarily painful but were bothersome. I thought them odd and hoped they’d go away but they persisted for the next few months. On occasion, I’ve also experienced some phantom pains. It’s the strangest thing and has felt like I still had my nipples. As I continued to experience strange sensations in my chest wall, I did some research and found my symptoms were not unique. They were apparently the result of nerve regrowth.

After being numb in my chest area for the past three years, it’s been odd to begin experiencing some feeling again. I definitely haven’t regained all feeling in the area where my breasts once resided but I have regained some. In an effort to discover just how much sensitivity there was in this area, I took a straight pin and began to lightly tap in small quadrants. I found the areas closest to my incision were still completely numb but the further I got away from my incision, the more sensation I could feel.

Since having bilateral mastectomies and lymph node removal in both arms, I have experienced extreme breast area tightness and cording. This uncomfortable feeling is most noticeable when I try to extend my arms or reach to grasp something from a high or low position. There have been times, when I’ve reached to grasp an item, and I’ve had the muscle under my armpit seize up and cause severe pain. It’s been so bad I’ve had to freeze in position and try to get my breath until the muscle relaxes a bit and I can move again.

Remedies for this syndrome include acupuncture, physical therapy, medication for pain, and stretching. I’ve found the only thing that works for me is stretching for the muscle cramps and scratching for the itch. These symptoms will hopefully get better with time but they are frustrating.

Just when I thought I was finally nearing the end of my physical healing process, these crazy sensations began. I guess it’s a small price to pay for a body that’s been severely traumatized. With the amount of trauma my body’s experienced, I’m amazed at how rapidly our bodies can regenerate and heal. Three years seems like a long time for nerves to begin to regrow.

All in all, I’m thankful I’m beginning to get some feeling back. I know it will probably never be normal again, but even a small amount of feeling in my chest is something to be happy about. Doctors can never predict who might experience this syndrome. It’s just nice to know there’s a name for it and I’m not alone.