If you think breast cancer is something that only women get, Edward J. Wilson has a tattoo he'd like you to see.
Wilson, a 56-year-old Seattle airline pilot, isn't shy about the life-like nipple tattoo on his left breast. While that might seem like a strange choice for a tattoo, for Wilson it replaces the nipple he lost when he had a mastectomy to remove a cancerous growth in June of 2000.
"You're always running up against the attitude that only women can get it," Wilson said of breast cancer. "Before one of my chemo sessions I was in the waiting room with my wife and one of the women there remarked how it was real nice her husband was there to support her. My wife laughed and said, 'He's the one that's messed up.'"
Wilson tells the story with a chuckle today, but he wasn't laughing nine years ago when he first felt the hardness under his left nipple. His doctor told him it was likely a condition called gynecomastia, an enlargement of male breast tissue common in teenage boys, but performed a biopsy to be sure.
The diagnosis revealed infiltrating ductal carcinoma, the most common type of breast cancer. When the doctor told Wilson he may need a mastectomy, he remembers just "fogging up."
"He started rattling these things off, but I just didn't comprehend what was happening," Wilson said. "I asked him what would happen if we just held off. He said, 'Man, this thing will kill you.'"
Raising Awareness The American Cancer Society estimates that in 2009 about 1,910 new cases of invasive breast cancer will be diagnosed among men in the United States and about 440 men will die from the disease.
Although male breast cancer accounts for only 1 percent of all breast cancer cases in the U.S., the incidence rate among males increased annually between 1975 and 2004. Because male breast cancer is so rare, delayed diagnosis often results in the disease proving more deadly for men.
Perhaps nobody knows that more than Nancy Nick, a Vero Beach, Fla., resident who started the John W. Nick Foundation 14 years ago in honor of father, John Nick, who died in 1991 from misdiagnosed breast cancer at the age of 58. The foundation, whose board counts Wilson among its members, is the nation's only charitable foundation focused on raising awareness of male breast cancer.
"I lost my father to male breast cancer because there wasn't sufficient awareness about how this disease impacts men," Nick said. "There is a tremendous need to increase male breast cancer awareness efforts across the country."
Awareness is growing, but it is doing so at too slow a pace, she said. That's why Nick and the foundation applauded an American Medical Association policy statement issued this past summer that recognizes breast cancer as a condition that affects men as well as women and urges support for the expansion of education and awareness efforts about the risks, signs and symptoms of male breast cancer.
A Lonely Time Wilson said he might have heard something about men getting breast cancer too, but before his diagnosis it wasn't something he thought about. He said his treatment was a "lonely time" because he didn't know where to turn for more information or to meet other men in the same situation.
The first male breast cancer survivor he had contact with was Richard Roundtree, the actor best known for his role as "Shaft," who was diagnosed in 1993 and underwent a double mastectomy and chemotherapy.
He reached out to Roundtree, who he has talked with several times on the phone and exchanged e-mails with, in an attempt to get more information about male breast cancer. That search was hard at times as information about male breast cancer was, and still can be, hard to come by.
"Today's world is a lot more savvy, but 10 years when it comes to cancer is a long time," he said.
A pilot for Alaska Airlines currently on a leave of absence, one of the first times Wilson shared his story was in an airline pilots magazine. As soon as the article appeared he started receiving calls from pilot buddies who were starting self-examine themselves. One Canadian pilot got in touch with him to say a doctor had brushed off a similar lump in his breast as harmless. Immediately after reading Wilson's story he went back to that doctor and demanded the growth, which ended up being benign, be removed.
Wilson said that kind of awareness is exactly what he hopes to accomplish by telling his story.
He's also pushing for a centralized national database for men who are fighting breast cancer so that they can get answers to their questions and find out about symptoms and side effects of different cancer medications, something he calls his "No. 1 goal."
Fighting The Same Enemy
Wilson's treatment consisted of 12 weeks of chemotherapy using two drugs, followed by 12 weeks with a different drug, in three-week intervals. His tests revealed he is estrogen receptor-positive, which means the hormone estrogen can cause the cancer to grow. Like the 85 percent of all male breast cancer patients who are positive for this hormone, Wilson is continuing with hormone therapy to help block the effects of estrogen in his body.
He said his prognosis remains bright, but he realizes that things could always change.
"Once you've had it, you're always going to have it," he said. "You're always looking behind you to make sure it's not chasing you down again."
Wilson said dealing with the disease and his own mortality was an emotional, eye-opening experience for him and his family. He remembers seeing a commercial with a female breast cancer survivor talking about worries of missing out on her children's lives if she were to die.
"Dads think about those things too," he said. "Nobody ever thinks a guy will have those feelings, but we do. It's a very real and very emotional thing."
However, he said he refused to let the disease get him down and vows to just enjoy life one day at a time. He recalls receiving a call from a Chicago man referred to him after calling the Nick Foundation. The man was diagnosed as Stage 4 and was "scared to death," he said.