Everyone is stunned when first diagnosed with breast cancer. I was probably more stunned than most. Being a 40-year-old male, breast cancer was somewhere behind being hit by an asteroid on my list of worries.
Early in August of 1996, I noticed a small lump under my left nipple. I wasn’t too concerned — I assumed it was a cyst or abscess that would go away in a week or two. Some three weeks later, I was driving home from work and felt some wetness on my chest. A quick peek inside my shirt revealed that blood was dripping from my nipple. My first reaction was not of worry, but of surprise at the fact that I had a working orifice there.
My second reaction was the gut feeling that the bleeding was related to the lump and that this was not good news. I made an appointment later that week with my family practitioner who said that, although rare, breast cancer does occur in men and that my symptoms merited further investigation. I saw a surgeon later that day and he did a needle biopsy that came back as being suspicious. That led to an excisional biopsy. The pathology report stated that it was malignant—an infiltrating ductal carcinoma—the most common form of breast cancer in both women and men.
In essence, breast cancer is the same disease in men and women. Diagnosis, staging, and treatment are all the same (with the exception that a modified radical mastectomy is the usual surgical intervention, since men have so little breast tissue). And, of course, the psychological issues are different. Losing a breast does not have the same significance for a man as for a woman. On the flip side, men are more likely to go around shirtless. (Over the past ten years I’ve gotten used to being the only single-nippled man at the beach.)
I had my modified radical mastectomy in late August. Sixteen lymph nodes were examined and one was positive for malignancy. The oncologist recommended six months of chemotherapy.
A person’s first round of chemotherapy is an anxiety-producing event of the highest order because you have no internal frame of reference as to what to expect. In my case, actually getting the chemo was rather anticlimactic. It took thirty minutes. They put on a band-aid, and sent me home. Then it was time to wait and see what would happen once the drugs kicked in. It’s an odd window of several hours in which you sit and prepare for bad things to happen. I cleaned my toilet—just in case. Fortunately, my side effects were relatively mild with fatigue being the primary problem. The new anti-nausea medications are wonderful. I never threw up once during all of chemo. Oddly, my dog puked that first night as I waited to be sick. Man’s most empathetic friend.
My lowest point was when I examined the survival statistics. I remember reading a table that provided five and ten-year survival rates for people with different stages of breast cancer. The five-year survival rate for persons with my stage of breast cancer was about 80 percent. Sobering, but reasonably good news. Then I saw the ten-year survival rate. It was closer to 60 percent. My first reaction was that that must have been a misprint. It wasn’t. We’ve all heard that if you survive five years without a recurrence of cancer, you’re home free. But while the five-year benchmark is significant in some cancers, it’s no cause for relief in breast cancer because the cancer can recur ten, fifteen, or twenty years down the line. For the first time, I realized that the five-year survival rates—often lauded in the popular media—weren’t synonymous with cure rates. Living five years doesn’t mean that I’ll live ten years. Shortly after being diagnosed, I opened a fortune cookie and read a message that said, “You have yet to live the best years of your life.” I’m still not sure if I should find that comforting or worrisome.
Whenever I tell someone that I have had breast cancer, there’s an inevitable pause. The news is so completely out of the blue that everyone’s initial reaction is stunned, open-mouthed, silence. I used to think that a person’s jaw dropping open was a figure of speech. I now know otherwise.
I became the first man to be a full-fledged member of the Ithaca Breast Cancer Alliance. Based on statistics, I’m probably not the only man in this area of New York with breast cancer, but men with breast cancer are not likely to wear pink ribbons or join support groups. It’s partly generational—most men with breast cancer are older and just aren’t prone to talk about such personal matters. It’s hard enough for men to discuss prostate cancer, let alone a female disease like breast cancer.
The Internet has been extremely helpful. Shortly after I was diagnosed, I logged on and searched for the keyword breasts. There were three categories of response: pornography, information about breast cancer, and an astounding number of chicken recipes. Eventually, I joined a Breast-Cancer Listserv. For the first time, the notion of a virtual community was not an abstraction. I really do feel a sense of community by sharing with people who have been through the same journey. It’s a wonderful resource because it’s available twenty-four hours a day, which was especially useful when the chemo wreaked havoc with my sleep patterns.
A few weeks after my mastectomy, I went to a department store looking for a new navy blazer. But I was stumped when choosing between single-breasted and double-breasted models. Whichever I chose would be making some sort of statement—perhaps the single-breasted would say that I’m proud of my single-breasted self or the double-breasted would say that I’m still the same, complete person. But chemobrain made my thinking fuzzy, so I bought a sweater to avoid making a statement that I might regret later.
There are certain indignities that happen to a man with breast cancer. I once went to the hospital for some lab work and the lab tech, noting the referral slip, asked, “Is this the correct diagnosis?” I suspect that she doesn’t ask that question to women with breast cancer. And I felt a little odd going to a women’s imaging center for a mammogram.
The radiology tech did note that I had the hairiest chest she’s ever seen in a mammogram room. I think that deserves some sort of award.
Update: December 2006
It’s hard to believe, but twenty percent of my life has now been lived after my cancer diagnosis. What I didn’t expect from cancer is a change of career, but that’s exactly what happened. I’m no longer just a member of the Ithaca Breast Cancer Alliance. Since 2000, I’ve served as the associate director. As far as I know, I’m the only male survivor of breast cancer to work for a breast cancer organization in the United States. While I have a special interest in male breast cancer, the vast majority of my work is with breast cancer more generically.
As often as possible, I attend national breast cancer meetings to be—quite literally —a face at the table. People routinely say, “I knew that men got breast cancer, but you’re the first man with breast cancer I’ve actually met.” I love hearing that because male breast cancer tends to an abstraction to people until they have a face to go with it.
In addition to my work at the Ithaca Breast Cancer Alliance, I assist men and women with all types of cancer at Cayuga Medical Center. Being a man with breast cancer puts me in a fairly unique position to connect with men with cancer (because I’m a guy), and with women with cancer (because I have what’s generally thought of as a woman’s cancer).
I certainly didn’t grow up thinking that, “Someday I hope to work for a breast cancer support organization.” But I do. And I love it.
