At 46 years old, Oliver Bogler's reaction to a suspicious lump in his chest might seem typical for a man. He ignored it for three to four months, maybe longer. "I couldn't really imagine I would have this disease," Bogler says. But when he finally "grew up" and went to the doctor, he was pretty quickly diagnosed with invasive breast cancer.
Now what's interesting here is that Bogler is a cancer biologist who regularly works with cancer cells, as senior vice president of academic affairs at the University of Texas MD Anderson Cancer Center in Houston. Even so, he figured the lump was a benign swelling of breast tissue.
He had good reason to think so. Breast cancer is rare among men. Only 1 percent of all breast cancer cases are in men. Still, that means about 2,600 men receive a diagnosis of breast cancer every year.
But men typically don't think they are at risk, says Dr. Sharon Giordano, an oncologist who also works at the MD Anderson Cancer Center. "Men don't think of themselves as having breasts," Giordano says. "They don't realize that all men have some residual breast tissue." So it's not unusual to see male patients like Bogler who come to her with more advanced breast cancer than the typical female patient.
This could be one reason why men have a lower life expectancy after a breast cancer diagnosis. According to a study published in 2012, in the Annals of Surgical Oncology, men with early breast cancer had a 74 percent survival rate five years after their diagnosis compared to women, whose survival rate was 83 percent.
And men not only can get breast cancer, they can also inherit the BRCA1 and 2 genetic mutations that place them at greater risk. Like women, they can pass that mutation on to their children, who have a 50 percent chance of inheriting a parent's mutation.
Once men are diagnosed, their treatment is pretty much the same as it is for women — typically surgery to remove the cancer followed by chemotherapy, radiation and hormone suppressing medication like tamoxifen.
That was the case for Bogler, but with one big difference — he had a mastectomy. Most women choose lumpectomies followed by radiation. This is often not an option for men, Giordano says, because their tumors are most commonly right behind the nipple, where there's not a lot of breast tissue to remove.
Unlike women, most men don't have reconstructive surgery. That's probably because they don't even know it's an option, says Giordano. A lot of male patients would probably be interested in having nipple reconstructive surgery, Giordano says, "So when they are out swimming, or playing basketball and have their shirt off, the surgical changes aren't quite so obvious."
And because breast cancer is so much more common among women, men with the disease can experience something of a "gender misfit." Bogler wrote about his experience in a personal blog he called Entering a World of Pink. Breast cancer clinics are often decorated in lots of pink, and support systems are designed with women in mind. Giordano recalls one male patient who, after a biopsy, was given a pink floral ice pack that came with instructions to "place it inside your bra."
When Edward Smith was diagnosed about four years ago, he went online to look for information and emotional support. The first couple of chat rooms he joined were not helpful, he says, when the participants found out he was a man. "They weren't outright nasty or anything, but you could just feel that they were pulling back in terms of the conversation that was going on at the time," he says.
Eventually Smith found a site that was welcoming — Living Beyond Breast Cancer. The women in this group were helpful, compassionate and willing to talk, Smith says. This was important because he was feeling a bit uncomfortable at work. Colleagues were just "stupefied," he says, "because most people have never encountered a male who had breast cancer."
The website recently published a guide for men, which Smith found particularly helpful. The medical information isn't so different from women, says Jean Sachs, executive director of Living Beyond Breast Cancer, but the experience is very different. "It's hard to get men to talk about it," she says. The guide provides a list of men, including Smith, who are willing to talk to other men about their experience.
It's also important, Sachs says, for men who test positive for the BRACA genetic mutations to understand that they can pass those mutations on to their children, which may encourage newly diagnosed patients to get tested.
The lack of awareness, even among doctors, oncologist Giordano says, means less money for needed research to figure out how breast cancer in men differs from women especially when it comes to life saving treatment. Treatments for men are based on evidence from research trials with women. Giordano's now heading up research to better understand the biology of the disease in men and to try to figure out the most effective hormone therapy for men with breast cancer.
RENEE MONTAGNE, HOST:
First though, this look at breast cancer in men. It's rare. Only about 1 percent of all breast cancer patients are men. Still, that means every year, about 2,600 men are diagnosed with the disease. NPR's Patti Neighmond reports.
PATTI NEIGHMOND, BYLINE: At 46 years old, Oliver Bogler's reaction to a suspicious lump in his chest seems typical for a man.
OLIVER BOGLER: I ignored it for three, four months, maybe a little bit longer.
NEIGHMOND: Ignored it, even though he's a cancer biologist. He figured the lump was a benign swelling of breast tissue.
BOGLER: It took me a while to grow up and go see my primary care doctor, who then quickly referred me. And I had a biopsy and was diagnosed with invasive breast cancer fairly quickly.
NEIGHMOND: This sent Bogler on a personal journey he would make public in a blog called Entering A World Of Pink.
BOGLER: I called it Entering The World Of Pink because that's kind of how it feels when you're a man who's diagnosed with breast cancer.
MONTAGNE: At the MD Anderson Cancer Center in Houston, oncologist Sharon Giordano specializes in men with breast cancer. She says by the time patients like Bogler finally get diagnosed, the disease is more advanced than it is for most women.
SHARON GIORDANO: I've had many patients tell me that they had no idea that they were at risk for breast cancer or even could get breast cancer. Men don't typically think about themselves as having breasts and so really don't have even an awareness that all men have some residual breast tissue.
NEIGHMOND: And like women, men can inherit a gene, BRCA, that puts them at greater risk. Once men are diagnosed, the treatment's pretty much the same as it is for women - surgery to remove the cancer, followed by chemotherapy, radiation and hormone suppressing medication, like Tamoxifen. That's what happened with Oliver Bogler, with one big difference. Most women have lumpectomies followed by radiation. For men, the tumors are commonly right behind the nipple, which means a mastectomy. That's what Bogler had. And most men don't have reconstruction - probably, says Giordano, because they don't even know it's an option.
GIORDANO: When brought up, I think a lot of male patients are interested in having nipple reconstruction to the chest wall so that if they're - you know, if they're swimming, if they're out playing basketball and have their shirt off, that the surgical changes aren't quite so obvious. And they don't have to constantly answer questions about it.
NEIGHMOND: And during diagnosis and treatment, men can experience something of a gender misfit. Because breast cancer is so much more common among women, breast centers are often decorated in pink - lots of pink.
GIORDANO: I had a patient who told me that he had gone in for a breast biopsy. And this particular patient had a great sense of humor and was laughing about it. But what was given to him, which was the supply for everybody, was a pink, floral icepack. And the instructions were to place inside your bra.
NEIGHMOND: This misfit goes way beyond the medical office. When Edward Smith (ph) was diagnosed about four years ago, he did what lots of people do. He went online looking for sites to give him emotional support.
EDWARD SMITH: The first couple that I looked at, when I identified myself as a male, people kind of pulled back a little bit. They weren't outright nasty or anything. But you could just feel that they were pulling back in terms of the conversation that was going on at the time.
NEIGHMOND: Eventually, Smith found a site that was welcoming, which was important, he says, because while his family was important, colleagues at work just seemed confused.
SMITH: They were just stupefied. They just weren't sure that they were really hearing the right thing because most people have never encountered a male that's had breast cancer.
NEIGHMOND: The lack of awareness about men and breast cancer, even among some doctors, says oncologist Giordano, means less money for needed research to figure out how breast cancer in men differs from women, especially when it comes to life-saving treatment.
GIORDANO: To me, the most pressing question is, you know, what is the best hormonal treatment for a man with breast cancer? Should we be giving them Tamoxifen like we give to women? Or are there other treatments that might be more effective in men? And we just don't know the answer to that.
NEIGHMOND: Giordano's now doing research to try to find out some answers, investigating the effectiveness of hormone treatments for men with breast cancer. Patti Neighmond, NPR News. Transcript provided by NPR, Copyright NPR.