Not for Women Only
Men With Breast Cancer
Oct. 23, 2000 -- John Cope was at a business meeting one Saturday in 1987 when he noticed that his left nipple was rubbing against his shirt and itching continually, "as if I had a mosquito bite."
Later that evening, he pulled off his shirt and realized that the nipple was inverted, instead of protruding slightly as normal. Probing the nipple, he felt something unusual -- "not exactly a lump, more like a hard spot." He called his doctor, got an immediate appointment, and was scheduled for a biopsy. A few days later, he had the results: "Malignant neoplasm of the male left breast." In other words, cancer.
Men with breast cancer account for less than 1% of all cases in the United States, according to the National Cancer Institute. This year, some 1,400 U.S. men will be diagnosed, and 400 will die. Like Cope, they face the problems and isolation of being, as Cope puts it, a guy with a female disease.
Cope's doctor, for instance, had never seen a case of male breast cancer before. All of the books and support groups he found were for women. And a hospital clerk once frowned in confusion when Cope's doctor ordered a CAT scan. "We have no [insurance] code for male breast cancer," she said.
In part because male breast cancer is so rare, men who get it tend to ignore the initial symptoms. A 1998 study of 217 men with breast cancer, published in Cancer, found that they waited an average of more than 10 months before calling a doctor to discuss symptoms. One result: By the time they are diagnosed, 41% of men with breast cancer learn that it has already spread to surrounding tissue, organs, or lymph nodes -- compared to 29% of women. Still, the five-year survival rate for men with breast cancer is quite high -- 81%, compared to 85% for women.
Cope, who was diagnosed with his fourth recurrence of cancer last fall, recounts his unlikely story in a new book, A Warrior's Way. The following is an excerpt:
A Warrior's Way
By John R. Cope
There are moments in life that I will never, ever forget. Good or bad, the details remain rich in memory for a lifetime, always close to the surface: the day President John F. Kennedy was assassinated, the day Martin Luther King was shot. These are milestones in our lives, benchmarks that we recall in minute detail: what we were wearing, the day or time, what the weather was like.
In 1987, I was a training and development manager for a high-technology company in Silicon Valley. I was out of state attending a training program and awaiting the results of a biopsy. The call came about 2:30 pm and I remember the doctor saying, "John, I have your biopsy report in my hand, and I am sorry to tell you that you have cancer." He also went on to say that he would like to do surgery as soon as possible, so the cancer wouldn't spread any further.
I vividly remember sitting by the phone after hanging up, feeling like I had just been run over by a freight train. I grew increasingly numb as my thoughts and feelings flooded through my brain. For the longest time, I didn't move from my chair. My heart was beating as fast as I could ever remember.
My first somewhat rational thoughts were "My God, I have cancer and I am going to die!" The feeling overwhelmed me like nothing I had ever experienced. I felt helpless. I could not control the situation, and nothing would change my reality or reduce my pain. I must have said more than 20 times, "I've got cancer." If I could think it and say it, perhaps I could deal with it.
That evening, some dear friends provided me with love, hugs, laughs, and compassion that allowed me to put this "cancer thing" into perspective, to begin to face the reality and think about the first steps to take.
Males with breast cancer are treated medically the same as women ... almost. Biopsies, surgeries, mastectomies, chemotherapy, radiation ... virtually everything is the same except, perhaps, for the issue of breast reconstruction surgery. Men simply do not have the societal, emotional, or physiological issues and needs with their breasts that women have. Yes, men have breasts, but losing one to a mastectomy has little emotional significance.
My first breast cancer resulted in a traditional mastectomy surgery, with a removal of the left nipple and related tissue, muscles, and so on, leaving a clean but obvious scar. Men often suffer from lack of muscle strength after surgeries like this because most of the chest muscles are removed. Fortunately, I had a superb surgeon who carefully removed the tissue mass without removing unnecessary muscle.
Sitting on my patio the afternoon after my surgery, my friend Larry and I were joking and teasing about my surgery, when it came time to change my bandage. This was my first opportunity to see the results of the surgery. I removed the bandage, and even though I didn't expect to be surprised, I was! My left nipple was gone. There was just a long scar running from where my nipple used to be to my left armpit. I looked very, very, different.
Looking at my chest, I decided I needed a little sign saying "See other side," with an arrow pointing to my remaining nipple. Larry and I began to laugh, and we found comfort in joking about the situation. We were both glad it was just a little physical change in my appearance and not something fatal.
I discovered early in my cancer survivor days that self-effacing humor, a tongue-in-cheek perspective, and a twisted wit made all the physical changes and challenges easier to take. Finding ways to use humor to help yourself and those you love deal with the changes is just one of the keys of making yourself not a victim, but a glorious survivor.
Be a Survivor, Not a Victim
In 1992, during my second battle with cancer, I knew it was going to be a very tough battle. In the first week, my hair began to fall out and in the second week, my beard -- my wonderful beard of 20-plus years -- came out by the handful -- not a pretty sight. Soon, I was totally bald, no eyelashes, eyebrows, leg hair, arm hair, or chest hair. I looked like one of those Mexican hairless dogs -- cute, but looking at me, you'd know there was something terribly wrong.
At work, I was being excluded from meetings on projects lasting longer than a month. I had all the short-term projects, meaning: Give John anything that we think he'll be around to finish. It was not an environment conducive to fighting cancer. People were more interested in bidding on my window office than in how I was doing. At times, I felt invisible. Many people ignored me or pretended I wasn't there. I became numb to their attitudes, but never have I forgotten how it felt.
After about three months of intense chemotherapy, I no longer had the energy to function in a full-time demanding job. I was doing everything possible to make a contribution, but it was becoming more and more difficult. My professional self-confidence was eroding.
I knew I had stepped over the line into chemotherapy trauma one day when I left the office to drive home. I was tired and as I tried to merge into the busy freeway traffic, I realized my brain wasn't functioning fully and my normal reactions were slower. Trucks and cars seemed to zip by at warp speed as I tried to negotiate the short merge lane. I might as well have been driving a snowplow. I made it home safely, but I began to doubt my ability to function successfully in this kind of multiple-task situation.
Hot Flashes -- They're Not Just for Women Anymore
Many female readers will understand. I'm sitting here, minding my own business, when suddenly the "heat creep" begins. Some days, it's like watching a horror movie when the monster's face melts off -- and I can't find the fan to cool down. My face starts to sweat. My body systems begin to scream, "MAYDAY, MAYDAY! MELTDOWN, MELTDOWN! TAKE YOUR EMERGENCY POSITIONS!"
My oncologist offers to prescribe a medication, but the drug has a side effect -- it slows down your thinking. Thanks, Doc, I'll pass. I think slowly enough already.
Over time, I have come to accept my condition, and when I'm tempted to complain, I remember what my friend Karen Wagner told me one evening over dinner. "Get over it, honey, and learn to accept those hot flashes -- all of us women have."
What Do You Say to a Cancer Patient?
"I have cancer" are three of the scariest words anyone can think or say. People who care about you are often fearful -- your cancer or any other life-threatening disease reminds them of a member of their family, a friend they know, or stories they have heard. Some of the stories end positively, some don't.
What do I, as a cancer patient or survivor, need or want from my friends, family and co-workers? The answers are really very simple, but they're not easy to do or to communicate.
During Breast Cancer Awareness week, I was asked to write up a short article for a company newsletter. The subject was about what cancer survivors or patients would like their friends and family to say or do. Here is what I wrote: