Bob Riter was 40 years old when he was diagnosed with breast cancer.
He noticed a lump the size of a pencil eraser under his left nipple but at first, wasn't particularly alarmed. When, two weeks later, his nipple began to bleed, Riter says he still felt surprise more than anything else.
"I didn't know it was an orifice," he said, chuckling in a phone interview. "I was mainly shocked."
Shock is a major part of a breast cancer diagnosis for many men, who are surprised to learn that they can even get the disease. The National Cancer Institute estimates that in 2010, nearly 2,000 cases of male breast cancer were diagnosed in the U.S., and though that represents only a fraction of the 200,000 total new cases last year, male breast cancer resulted in nearly 400 deaths. It also left many patients and survivors feeling isolated and embarrassed.
In many ways, breast cancer is similar in both men and women -- a tumor develops in the cells of the breast. Though the cause is unknown, men who have a mutation in the BRCA2 gene as well as those who have Klinefelter syndrome -- a condition where men have an extra X chromosome -- are at greater risk.
Treatment and diagnosis of breast cancer in men is generally similar to that of women. This is a blessing for many medical practitioners, who can draw upon their knowledge about treating women to help their male patients.
But some researchers lament the lack of information particular to males.
"We don't know much about how to treat men specifically," said Dr. Kathryn Ruddy of the Dana-Farber Cancer Institute. "Every treatment we do comes with the caveat that we're extrapolating from data in women."
Ruddy -- who is currently conducting an online survey aimed at learning more about the anxieties, sources of support and symptoms of male breast cancer patients and survivors -- explained that to date, no comprehensive clinical trials about breast cancer in men have been conducted. Between the low incidence rate and the challenges of finding willing participants, funding is difficult, as is simply finding and maintaining a large enough patient pool. Ruddy hopes that studies looking specifically at issues including the potential sexual side effects of certain hormone based treatments will one day be possible.
For Riter, treatment and diagnosis consisted of an initial consultation with his family doctor, followed by a biopsy and then a mastectomy. The 55-year-old, who says he has long been cancer-free, continues to go for annual mammograms.
"I think that many people are surprised to hear that men can have mammograms," said Susan Brown, director of health education with Susan G. Komen For The Cure, adding that many men also experience feelings of embarrassment when at imaging centers that typically cater to women.
"There's the whole awkwardness of the procedure itself," Brown said. "And then there's the idea that it's difficult for many men to even imagine having a mammogram. It's tough."
For his part, Riter says he was not uncomfortable being open with people about having what was widely considered to be a woman's disease, but says he did have to get used to their reactions.
"I remember thinking that the old saying that you've seen someone's jaw drop open was just a saying," he said, "but when I told people I had breast cancer, I would literally see it happen."
He also mentions cringe-worthy moments, like struggling with how to answer the question of whether he was pre- or post-menopausal on a diagnosis tree, as well as having to assure lab techs that the "breast cancer" typed on his diagnosis line was not a mistake.
Many survivors, like Riter, are able to find solace in support groups.
He attended regular meetings at an area support group, where after some initial raised eyebrows, the women accepted him, recognizing that they were dealing with many of the same issues. He also found comfort in men's online forums and support groups, which have multiplied since his diagnosis in 1996. Indeed, while Riter says he has only actually met three or four other men who have had breast cancer in person, he has connected with many more online. His goal in those conversations is always to provide support and comfort, so more men will be open about their diagnosis.
"There is still this sense of embarrassment that's there for many men, that this is a woman's disease," Riter said. "I always say that under the microscope, breast cancer is breast cancer. It doesn't make a difference if you're a man or a woman."