It was four years after my mastectomy when I noticed something strange.
In 1990, four years after my mastectomy, I had a hangnail on my right hand, the same side as my surgery.
I did what I always had, which was to run the finger under hot water until the little infection was gone. But this time it didn’t go away. The red was gone, but the pain was still there, and when I stuck a needle in it to drain the area, a little bit of pus came out.
So I did what most of us do when we are too busy to go to the doctor, I ignored it, thinking I would show it to my support group and see what they did in this situation. That weekend I was giving a baby shower for a friend and as I was preparing some of the food, I was aware that my hand hurt. Hmm, I thought. That is strange.
No connection to the hang nail registered.
After the baby shower was over, we took friends out to dinner. My hand still hurt, but the ache had moved up to my elbow.
Still, no connection to hang nail registered.
By the next morning, my arm was swollen and red, and I felt terrible. It had been only 48 hours and I knew I was sick.
All of a sudden I remembered what my surgeon had said four years earlier about caring for my arm lest I get a condition called lymphedema, a swelling of the lymph nodes as a result of infection.
The shower was on Saturday and on Sunday night, I called my surgeon who called in a prescription for something really strong and told me to come into the office first thing in the morning.
On Monday morning, I was so sick that I forgot my purse on the way to the docs office. I told my husband I was sick, really sick. When we arrived at her office, she took one look at my arm and said that we were going to walk over to the hospital and get me on antibiotic IV. Whew, I remember just nodding. I was so sick
She told me later that the red was on my chest wall heading for my heart. I was septic and a whole lot more.
I was in the hospital for five days on antibiotic IV, and when it was clear the infection was gone, I was left with a swollen arm — lymphedema.
This time I listened when she told me about lymphedema and how to care for my arm. No needle sticks of any kind, and no gardening and no manicures unless they really know what they are doing.
Lymphedema occurs when the lymph nodes in the armpit are removed, leaving the arm no way to drain bacteria or any other fluid buildup. Cancer moves out of the breast through the lymph system to other parts of the body. So, removing the cluster of nodes in the armpit and examining them for cancer gives the docs a clue how serious the cancer was and where it went. Many women had their nodes removed for no reason when their cancer had not left the breast.
In the 90s, they began using a new procedure called the sentinel node biopsy, which meant removing only the first few nodes in the cluster after it had been identified by a dye that was injected into the arm. This was the procedure I had when I had a mastectomy on the left arm in 2007. It has definitely been good for me since the arm has taken a lot of abuse and never developed an infection.
But the right arm was another matter.
I have been lucky. My arm has not blown up the way it does for many women. Swimming has helped keep it under control. I used some of the options available when it first appeared that now are not recommended.
Lots of information about lymphedema has changed. It used to be recommended we not use the arm, but now it is recommended we do use the arm as a way to move the lymph fluid. Self-massage is recommended. Put your arm over your head and gently apply pressure as you move the hand down the arm in a gentle massage. Logical.
Aside from the physical issues, lymphedema also causes has many emotional issues for those who have it. A person’s ability to perform their job may be impacted as is their self-perception when one arm is always larger than the other. Functional ability such as dressing, performing household tasks and even driving can be affected. There is also a good chance the arm will have pain associated with the swelling.
I tried using the wrapping procedures at night and became really good at the cross over wrapping that kept swelling down. The problem was that I am a very light sleeper and having my arm wrapped to twice its size is not wonderful and definitely impacts quality sleep. I would wake in the morning having taken the wrapping off.
Women with breast cancer are not the only ones who suffer from lymphedema. Those who have undergone gynecologic surgery may lose the lymph nodes in the genital area, causing significant quality of life issues. There were some identified factors concerning why women get lymphedema with obesity and lack of exercise as two of the issues with only some 30 percent of women, according to one study, seeking help to manage the symptoms.
The bottom line is to be aware of your arm and/or upper legs near the genitals. Don’t do anything that can cause an infection and, if you get one, act immediately.