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Nobody Warned Me About Lymphedema


Male breast cancer survivor Khevin Barnes asked a lot of questions — but he forgot to ask this one.

Many men who are diagnosed with breast cancer have stories in common. A majority of us didn’t know that cancer of the male breast was even possible. And despite vigorous efforts to educate men, the rarity of the disease (only about 1 percent of breast cancers are found in males) makes this an arduous task.

So when I found out that I had breast cancer, I did what most men and women do: I dug through the internet and made a list of questions I wanted to ask my surgeon before I was wheeled into the operating room.

My mastectomy went as well as I had hoped, with sentinel node surgery finding no indication of cancer in the primary lymph node involved. That and a second node were biopsied, and I was officially stamped with the moniker “invasive ductal carcinoma grade 3” and sent home. Grade 3 indicates a very aggressive, fast-growing cancer.

Pain meds eased my surgical distress, but within a few days I became aware of a discomfort that didn’t emanate from my surgical scar. I had a pouch of fluid under my chest wall, just under the armpit, that was a bit disconcerting and felt as though it was pressed against my lung or ribs and actually made breathing uncomfortable. There was even a bit of anxiety connected to it. I had a draining device implanted in my chest that was filling up with fluid, but due to the risk of infection, it was removed after a few days. The fluid buildup however, did not quit.

And that was when I first heard the word “lymphedema” used to describe my plight.

So once a week, I would visit my surgeon who would remind me that the nerves under my arm had been severed and I should expect to be numb for a very long time — if not forever. I still have no feeling there, 2 1/2 years later.

She would reach for the syringe with that very long needle attached. I would get wide-eyed and squirm on the table and like the faithful friend that she was, she would laugh and remind me again that I wasn’t capable of feeling pain from the procedure. And sure enough, I had no sense of when it began or ended, but the minute the needle was removed, she would announce with a good deal of satisfaction that the amount of lymphatic fluid in the syringe was significantly less than what she had removed the week before.

Nevertheless, each time that little balloon in my breast filled up, I experienced the unpleasant thoughts and feelings that came with it, and I actually began to look forward to my weekly visit to remove the fluid and the tightness in my chest. After eight weeks, my surgeon proclaimed that my body was able to absorb the offending fluid, and the weekly draining came to an end.

So here’s what I learned in my brief encounter with lymphedema as it relates to breast cancer.

Firstly, it was the pressure in my chest and not the healing scar that reminded me every day that my breast was gone. And it was that unwelcomed and unsettling liquid intruder in my body that kept me awake at night and gave each day a dose of uncertainty.

Breast cancer survivors who have a sentinel node biopsy as I did are about four times less likely to develop lymphedema than those who have an axillary dissection, according to the Susan G. Komen Foundation. Most studies show that one year after breast surgery, fewer than 5 percent of female breast cancer survivors who have a sentinel node biopsy have lymphedema compared to 10 to 20 percent of women who receive axillary dissection.

As you might expect, there are no conclusive studies of lymphedema in male breast cancer survivors. But the bottom line is the fewer lymph nodes removed, the better the chance of limited or no lymphedema to follow.

The human body is a remarkable machine that heals impressively from repeated cycles of abuse. Our cancer scars and knee replacements, organ transplants and pace makers, chemotherapies and surgical procedures soften and diminish over time. But lymphedema reminds us daily that something is amiss as it appears and recedes like the tide.

Fortunately, new methods of dealing with the discomfort of lymphedema are available now, like exercise, massage, compression garments, diet, relaxation, laughter programs and more.

The Lymphedema Support Network in England reports: “Lymphedema cannot be cured but, with appropriate treatment, its major symptoms, namely swelling and the risk of infection (cellulitis) can be improved and controlled. Skin and underlying tissues will also improve, function/mobility of the limb should increase and the psychological effects will be minimized.”

Those of us who live as breast cancer survivors soon learn to take any hint of serenity in our day as cause for celebration. And like the tide, our symptoms may surge and depart. Our task then becomes not so much a battle of resistance, but a daily practice of riding the wave.


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