Understanding Post-Mastectomy Syndrome - SHARE Breast Canc...

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Understanding Post-Mastectomy Syndrome


Does anyone here have experience with Post-Mastectomy Syndrome? The article below sheds some more light on the issue. Look forward to reading your thoughts. bit.ly/2u5C0jB

"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."

5 Replies

Interesting article! I'm also experiencing the "electric" zaps and pings, but not yet in my mastectomy area -- it started several years ago in my left thigh where I had a muscle with tumor removed almost seven years ago due to liposarcoma. So I guess this symptom happens whenever a significant area of the body is disturbed. Further, two weeks after my double mastectomy this past May, I started physical therapy for manual lymph massage to try to avoid lymphedema (I already have it in my left thigh) and to regain flexibility of my shoulders. The therapist informed me that not only do I have to exercise to consistently "open" my chest area, but that I also have cording in my dissected axillary area, and advised that if I don't stretch it out through exercises and manual manipulation (when cleared to do so after surgery, of course), that it would be worse after radiation treatments. We worked on these issues for a few weeks before chemo started, and I have virtually my full range of motion and strength back. I'm now in chemo treatment, and will return to physical therapy after radiation to regain any flexibility that I will likely lose. I think the article would have been more helpful if it included the advice of going to physical therapy soon after two weeks post-surgery to stay on top of these issues and avoid suffering through physical limitations years later. By the way--my surgeon did not suggest the physical therapy. I learned about it through a website stepup-speakout.org, which is all about the avoidance and treatment of lymphedema. It's important not to do these exercises in the first two weeks after surgery because, not only do your incisions need to heal, but that's the period of time when the lymph vessels do the most regeneration, and we don't want to disturb that process.

joann86 in reply to Tinydancer1

Hi Tinydancer1, thanks so much for the info! Glad to read you're doing better!

Thank you for sharing this . . . I don't feel so alone!


Oh, the itching!!!!!!


Oh, and yes the electric zaps--like little bouts of torture

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