I often joke with my wife that I'm not a lucky person. I can count on one hand the times I've won something. But somehow, I've managed to pull the cancer lottery and get one of the rarest forms of cancer for men.
In November or December of 2008, I started to notice an occasional wet spot on my shirts. For a while, I didn't think much about it. Then I noticed that it was always the same spot. Imagine my confusion when I realized that my right nipple was leaking a clear, serum-like fluid.
Like many men, I rarely consult doctors. I'm on a doctor-prescribed testosterone supplement, but generally I don't get sick, can't remember the last time I had the flu and suffer with a cold for at most a day or two. Typically I forego even aspirin, preferring to deal with a headache or pain on its own terms. Plus I'd been working on losing weight and was feeling healthy, aside from the anomaly with my right nipple. And the seepage wasn't constant — I'd sometimes go days without any — so I ignored it. Then one day, in March of this year, on a whim I gave my man boob a squeeze, and it shot a stream of liquid across the bathroom.
Time to see a doctor. He recommended further testing.
Believe me when I say that there are few things more emasculating than being a man and having to get a mammogram. The waiting room, the exam rooms, even the consultation rooms are all pink. They're festooned in the ubiquitous pink imagery and ribbons of the woman's breast-cancer movement. And here I am, a 5-foot-10, 240-pound, 38-year-old man with a shaved head and tattoos, explaining to the young, gum-snapping female receptionist, "No, it's not a mistake. I'm supposed to be here for a mammogram. And thanks for letting everybody in the waiting room know."
The mammogram was inconclusive. The radiologist was unsure about a spider-web like mass on the right side of my chest. I saw it on the screen, and I remember sitting there, getting that weird feeling that things were bad. They immediately walked me over — shirtless and wearing a paper gown made for a petite woman — to get an ultrasound.
Afterward, I was allowed to get dressed, and I waited expectantly for the radiologist to review the new test. After an eternally long 10 minutes, the technician came back and told me it was fine. I just had some dilated ducts due to excess fat and it was nothing to worry about it.
I breathed a sigh of relief and went home, happy and confident. I was losing weight on a diet and exercise regime I'd worked out with my regular doctor, so I figured that once I lost some more weight, the problem would clear up on its own.
My doctor called two days later. He said the radiologist had recommended a follow-up MRI. "They told me it was fine," I protested. My doctor assured me it most likely was, but they were just being thorough. "If it were me," he said, "I'd do it — although I'm sure you have nothing to worry about."
So I went for the MRI.
At this point, my wife was getting worried and went with me. I reassured her they'd said it was all right. I told her it was just to be safe. I promised her it was nothing.
The day after the MRI, my doctor called back and said I needed to get a biopsy. The mass was still hard to define and they weren't sure what it was, but the best bet was to get a chunk of it. He was still optimistic, but I was starting to get worried.
Two days later, I went to a pre-op appointment with the surgeon my regular doctor had referred me to. As I walked through her door, I saw that she was a surgical oncologist, and I found myself sitting in her office, listening to her matter-of-factly tell me that it was a malignancy.
"You have breast cancer," she said.
All I could focus on was a stupid pink ribbon on her wall.
Male breast cancer accounts for less than 1 percent of all breast-cancer cases. The American Cancer Society estimates that about 1,910 new male breast-cancer cases will be diagnosed in the U.S. in 2009. About 440 will die. The mortality rate is higher for men than women, but that's mostly attributed to the fact that men ignore symptoms or delay treatment because of the stigma attached to what's commonly believed to be a woman's disease.
It mostly occurs in men more than 60 years of age, but factors like a bad liver can cause it to occur earlier. That's most likely how I got it. The low testosterone I mention earlier could be traced back to my liver. My doctor says it's probably genetic, but I suspect it can be attributed to the availability of large quantities of Everclear grain alcohol back in college. My best friend and college roommate is an endocrinologist who matriculated at the Mayo Clinic, and he told me that the lower testosterone may have actually opened the door to increased estrogen.
And increased estrogen opened the door to cancer.
I learned all of this later. But I still have trouble articulating how I felt at the moment I got the news. Numb and indifferent, I suppose. There was a surreal quality to thinking or saying "I have cancer." I wasn't angry. What did I have to be angry about? I don't believe in God, so I couldn't be pissed off at him. Instead of getting angry, or crying, or denying the obvious, I simply nodded and asked the doctor what the next steps were. And it's been like that ever since.
I guess I'm most affected by the fact that I now see my own mortality. I've always seen my life in terms of the things I plan to do. In those short few days between my diagnosis and my surgery, I stopped thinking about things I wanted to do in some far-off future. I found myself suddenly trapped in the swirling, curling chaos of the present. My sense of time was restricted to the upcoming few weeks and everything beyond that was an impenetrable darkness stretched out like a dangerous storm cloud.
Still, my attitude was good. I found myself laughing about it and making cancer jokes. I joked about being worried I'd lose my hair (I have a shaved head). I joked that my fat ass and waistline could use the slimming efficacy of a few rounds of chemo. And things weren't that bad. Even 10 years ago, breast cancer would have been a death sentence. Not so now. Cancer is beatable.
I found myself intentionally turning the wheel of my imagination away from the effect my mortality will have on my two kids. We told them that Daddy needed to have an operation — but the idea of not being there for them the first time they get their hearts broken in high school, or not seeing them off to college, or not attending their weddings, or not being able to kiss the fat bellies of their own babies, was almost more than I could bear.
So I just didn't think about it.
And I found that I needed to be strong for all of the women in my life: my wife, my mother, my sister and even my boss. My wife had a good attitude, although she went through crying fits at the beginning. "It should be me," she said several times, and I assured her she was wrong.
Once the initial shock wore off, she came around to my way of thinking, which was that this was something to be beaten back and bullied into submission.
Within a week I was under the knife. I had a double mastectomy and sentinel lymph-node dissection. We decided on a double mastectomy because I didn't want to have to deal with this on the other side months or years later. And it didn't matter so much to me because, unlike a woman, my breasts weren't part of my sexual identity. In fact, I joked that I was totally getting free beer in bars for the rest of my life. "I'll bet you a beer that I have no nipples!"
I awoke from surgery in excruciating pain. I had underestimated the severity of the surgery and am still healing and convalescing as I write this. I've had a few setbacks, but my oncologist has said that it looks like they got all of the cancer. It was restricted to the tissue in my right breast and not present in my lymph nodes or left breast. In fact, because I'd had a double mastectomy, we removed all potentially cancerous tissue, which means that I won't have to have chemotherapy.
I will have to have a couple-year course of a drug called Tamoxifen, but it is merely a preventative. It looks like the path through the darkest part of the woods is coming to an end. But for the rest of my life, the specter of cancer will hang ominously over me. I'll have to endure lifelong testing and the uncertainty of my medical future. But the path is clearing.
I was lucky. Beating situ ductal breast cancer has given me a new perspective. I was fortunate that my body gave me enough warning signs that I could not ignore, pushing me to see my doctor before the cancer had spread into my pectoral muscles or my lymph nodes. The lymph nodes are the subway system of the body and, had the cancer wound up there, it would have metastasized and spread like, well, cancer. And fortunately, I fought my guy-like instinct of ignoring the problem and hoping it would go away.
And that's my reason for writing this. I feel obligated to spread the word that male breast cancer is a real thing. If you have a man in your life, tell him this story and encourage him to not be a dude. If you love him, tell him to go to the doctor at the first sign of anything weird. Tell him to quit being a tough guy.
If I'd ignored the painless, seemingly insignificant leaking from my nipple — for even a few months — my story could have been completely different. I could be dead.
D. Allen Crowley is an author and poet who lives in Willoughby. His first novel North Coast Gothic: A Grim Fairy Tale, about growing up gothic in Cleveland, was published in 2000. He also publishes a creative blog under the pseudonym of Doctor Zombie.
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