Like most things cancer-related, variety is the spice of life. There never seems to be just one way of doing anything. For example, after a breast cancer diagnosis, some women will have surgery as their first treatment while others may have chemo. Some women will have a lumpectomy; others will have a mastectomy; and others will have a bilateral mastectomy. Some women will have axillary nodes removed, while others won’t. Some women will have immediate breast reconstruction while others will have either delayed reconstruction or no reconstruction at all. Some women will have surgery once and others will have multiple surgeries. The characteristics of your cancer, the medical personnel and facility you use, and the personal decisions you make (for example, a mastectomy versus a double/bilateral mastectomy) will all play factors in your treatment plan.
Although there are many variables, there seems to be a constant with women. One of the most often questions I see posted on breast cancer Facebook groups is, “Will it hurt?”
The answer is…maybe. Just as the breast cancer experience is unique, not everyone will experience the same level of pain or discomfort.
After surgery, especially if there were lymph nodes removed from under one or both arms, there is a tightness that can discourage you from moving freely. If you want to get something off the top shelf of your cupboard, you’ll suddenly think twice about it. If you want to scratch your head, you may tell yourself that it’s not really itchy or you may ask someone to scratch it for you. Shirts with buttons or zippers in the front can become your best friends. Struggling to get a hoodie over your head just after surgery is more pain than it’s worth. I don’t care how warm and cozy the hoodie may be.
Now while you have to make sure that you don’t do too much after surgery, there are exercises that you need to do to get rid of that stiffness and recover the mobility in your arms (shoulder and underarm areas). In fact, I couldn’t even leave the hospital until after I met with a physiotherapist to review the exercises I was supposed to do. There were exercises to do while the drains were in, exercises to do after the drains were out and exercises to do four to six weeks after surgery. I did them regularly and it made a huge difference in how quickly that stiffness went away.
Post-Mastectomy Pain Syndrome
The American Cancer Society’s website describes Pain-Mastectomy Pain Syndrome (PMPS) as follows:
“The classic symptoms of PMPS are pain and tingling in the chest wall, armpit, and/or arm. Pain may also be felt in the shoulder or surgical scar. Other common complaints include: numbness, shooting or prickling pain, or unbearable itching.”
This can be a result of nerve damage that may have occurred during surgery. Report these symptoms to your doctor for possible treatment. You don’t want these symptoms to reduce how much you exercise and use your arms post-surgery.
Although I was offered pain killers to take after my mastectomy, I never had a need to take them. Any discomfort I felt was minimal. I did not have immediate reconstruction. Dianne, a survivor, had a lumpectomy the first time she had cancer and then opted for a mastectomy when her cancer returned eight years later. Since she could not have radiation in the same location as she did during her first encounter with cancer, she opted to have breast reconstruction immediately after having her breast removed. She had the DIEP flap reconstruction, which is sometimes jokingly referred to as a boob job and tummy tuck. Fat is taken from the abdominal area and used to reconstruct a new breast. Each and every blood vessel has to be reattached from one location to another. The blood flow has to be checked regularly or the tissue may die.
When I went to an informational session about breast reconstruction I was told that on the first day I would feel like I got hit by a Mack truck and that I would go home when I felt like I had only been hit by a motorcycle. Since I didn’t meet the criteria for having breast reconstruction, I don’t know if this is true; however, Dianne, who had the surgery, didn’t make it sound quite so bad. “For me the most pain was the tummy tuck. I was not told to wear a belt to keep the area covered and together. My pants would rub on the incision and cause pain that way. The breast not so much. I was able to go home with just extra strength Tylenol.”
Perhaps the Mack truck component had more to do with the amount of anaesthetic needed for six to eight hours of surgery.
Drains 1, Surgical Pain 0
When I asked people about the pain they had from their surgery, most people mentioned their drains as being the biggest pain but not in the physical sense. Everyone hated having multiple foreign objects hanging from their body…the dreaded drains. Go figure. This was the case for Linda. “The drains were my least favourite part of surgery, and after my sixth and final surgery, the drain was left in for two weeks to avoid the possibility of infection.”
Linda’s statement is even more amazing when you learn what Linda has been through.
Linda had expanders inserted during her mastectomy only to find out that she would need chemo and radiation. This meant the expanders were in her body much longer than expected and her skin was too damaged from radiation to handle the weight of the implants that were inserted too soon. This resulted in two emergency surgeries and three additional surgeries. Based on her experience, she now recommends people wait until after all treatment and healing has taken place before having expanders inserted.
So how can anyone possibly think that drains are the most annoying aspect of surgery, especially after having so many surgeries?
My theory is that it has more to do with the purpose associated with surgery versus the purpose of the drains. Breast surgery is a step toward getting rid of cancer. Drains, however, are just a necessary evil associated with surgery. They are not life-saving; in fact, they are life altering. They affect how you sleep. They hinder or make it awkward to move your arm(s). They also stop some women from having a shower, depending on the recommendations of their doctors and healthcare team.
The level of annoyance is directly proportional to the number of days that the drains have to stay in.
I had two drains. One I had for 12 days and the other for 15 days. Ann, who had three drains after her double mastectomy, heard my numbers and responded, “I still have one drain in, can you believe it? So that's 18 days so far. Aaaaarrgghhhh. I am not taking any pride in beating your record. If it's still in on Monday when I see the surgeon, I'm going to ask him to take it out then and there!” Unfortunately, when she went to see the surgeon, she was forced to keep her remaining drain in place until 24 days after it was initially put in. You’ll be happy to know, even after all that time, there still was minimal pain (discomfort) when the drain was removed.
I can’t imagine going 24 days without having a shower. I was glad to have worked out something with my homecare worker so that I could have a shower without risking an infection.
Here are some tips to help with the pain associated with having surgery:
Part 1: The Emotional Pain of Cancer
Part 3: Chemo Pain…cancer’s untold story
Part 4: Radiation…cancer’s sunburn
Part 5: Cancer, the gift that keeps on giving
Over 30-years of writing experience, about 10 years as a cancer survivor, and a lifetime purveyor of wit and laughter.
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