I often said the surgery part of my cancer treatment was the easiest. Not that there were no problems, but there was less pain than I expected and fewer side effects compared to chemo or radiation. I didn’t know that post-mastectomy pain and complications may come years later. One study found that up to one-half of mastectomy patients report pain three years out from surgery, and one-third reported pain nine years later.
The pain can come from damaged nerves, cut muscles, surgical adhesions, or changes in movement and posture following surgery. I’ve had all of these problems over the years following my radical mastectomy. The nerve damage that gave me creepy feelings along the scar and down the back of my arm got better over time, and I learned to compensate for the muscles I no longer had.
A few years ago, I started having pain along my sternum and collarbone that turned out to be from surgical adhesions. My skin was sticking to my chest wall instead of moving freely. I spent some time with my physical therapist having the adhesions loosened and learning some exercises to keep me limber. She also recommended regular massages. A good massage therapist now works on me once a month.
More recently I developed a new type of pain–sharp, stabbing pains when I moved my arm. Turning the steering wheel while driving was especially bad. I generally have a pretty high pain tolerance, but I was gasping and gritting my teeth when these sudden pains hit. And they were hitting me almost every time I turned or reached with my right arm.
I went to see the doctor when the pain didn’t disappear in a week like a pulled muscle would. She could feel the tight, corded place in my underarm. She was pretty sure that the problem was muscular and sent me to my physical therapist. The doctor said that if it didn’t get better, we would check for possible tumor activity, so I learned that even sixteen years out, my doctors are still vigilant about a cancer recurrence. Fortunately, the physical therapist was able to help me–no worry about a possible tumor under my arm
My therapist explained that she sees women with shoulder problems all the time. After a mastectomy, women tend to hunch over, which extends the back muscles and contracts the chest muscles. Our muscles are supposed to work in balanced pairs. Stretching those back muscles too far can lead to shoulder problems. My back and shoulder muscles have been working especially hard because my chest muscles were removed. My mastectomy was more extensive than most because my surgeon found two tumors on the chest wall and had to take the muscles to get clean margins.
The solution involved lots of massage to loosen up the contracted muscles and adhesions plus exercises to try to get me back in balance. The physical therapist had some nifty gadgets to help this process, but I had to do most of the work with my daily exercises.
How can you avoid post-surgical problems like I have had?
If your doctor is giving you a choice between a mastectomy or lumpectomy and radiation, understand how important your breasts are to balance and movement. I’ve heard women say, "I’m older now, and I don’t really need my breasts any more. I just want to be sure all the cancer is gone."
But for many breast cancer tumors, lumpectomy is just as effective as mastectomy, and some studies are finding that it may be even better in reducing recurrence and mortality. So if you are trying to decide between breast-conserving surgery or a mastectomy, throw the possibility of long-term post-surgical pain and range of motion issues into your assessment of risks and benefits.
Of course, you may be like me and have no choice if you have inflammatory breast cancer or a tumor that is too extensive to be safely treated with a lumpectomy. If you do need a mastectomy, here are some tips that can help you.
Ask for a referral to a physical therapist if you don’t have your range of motion back within three weeks. As soon as your surgeon gives you the OK to start range of motion exercises, do them faithfully. Despite doing my original set of exercises, I wasn’t seeing the progress I needed if I was going to be able to get back to work. I asked for a referral to a physical therapist who added some different exercises to the mix, and I soon had my full range of motion back.
Be vigilant about your posture. Make sure you keep your shoulders back. Don’t hunch over. During the course of the day, do some shoulder rolls and shrugs to both the front and the back to keep your shoulder muscles toned and loose.
Try some massage. In the shower or when you undress at night, lightly move the skin around your scar. You want to keep it limber so that you don’t get adhesions that can affect your movement and/or cause pain.
Consult someone who works with mastectomy patients about long-term exercises. I have had trouble finding exercise teachers who understand some of the issues I have with typical exercises. Although we now know that exercise doesn’t cause lymphedema and can actually help it, mastectomy patients need to be very careful about how much they lift and how many repetitions they do when strength training. I finally found knowledgeable trainers when I participated in a wellness program for cancer patients at my local YMCA. The right kind of regular exercise can reduce potential skeletal/muscular problems.
Go back to the doctor if you develop pain later. You are not a wimp or a whiner if you see your doctor for pain. It needs to be checked out just in case it is an early sign of a cancer recurrence. It probably will turn out to be some sort of issue related to surgical adhesions or your muscles. That is when you need to see a physical therapist to address the problem early before it becomes unmanageable.
A mastectomy can save your life. Don’t hesitate to have one if you need it. If you are in the group of women who have post-mastectomy pain, don’t hesitate to see your doctor and a physical therapist.
Susman, E. Post-Mastectomy Pain Persists for Many Women. May 13, 2013. MedPage Today. Retrieved July 3, 2014 from https://www.medpagetoday.com/MeetingCoverage/APS/39085.
Phyllis Johnson is an inflammatory breast cancer (IBC) survivor diagnosed in 1998. She has written about cancer for HealthCentral since 2007. She serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. Phyllis attends conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. She tweets at @mrsphjohnson.