What it’s like to be a man with a 'woman’s cancer'

No breasts, no problem?

The focus on breast cancer becomes, all too often, a focus primarily on breasts themselves. Awareness campaigns scream “Save the Tatas!” and feature close-ups of women’s cleavage.

The underlying message seems to be “No tatas — no problem!” But the truth is that breast cancer can strike anyone — people with large breasts, small breasts and seemingly nonexistent breasts.

It’s often forgotten that nipples are a sign that men possess a little breast tissue, and it's even less well known that it can be just enough tissue to ignite a breast tumor. In the U.S., about 2,600 men per year (less than 1 percent of breast cancer patients) discover that, yes, men get breast cancer, too.

Yet the men-plus-breast cancer equation is one that some struggle to master.

Del Gardo, who has passionately agitated to raise awareness of men’s risk of breast cancer after his own diagnosis, saw his surgery to treat his breast cancer — a double mastectomy — changed to a vasectomy in a magazine article.

Let’s be clear: vasectomies make terrible breast cancer treatments.

An unexpected cancer

Dan Roark, a former school counselor in his mid-60s from Bonney Lake, Washington, had seen his mother undergo a brutal battle with breast cancer when he was younger, but he never suspected that he would be diagnosed with the same type of cancer. When he was directed to a clinic for further tests after a suspicious chest X-ray, Roark didn’t realize where exactly he was going until he pulled into the parking lot.

“There was pink neon, a rose,” Roark recalled of the clinic’s façade. “They asked me who I was there to pick up. I said, ‘I have a MANogram appointment!’”

A self-described “extroverted snoop,” Roark was able to watch his biopsy on a monitor. He felt the snap as the tiny wire they inserted snagged a sample — and felt his mood grow gloomier and gloomier as more medical personnel shuffled into the room. The doctors at the clinic couldn’t immediately confirm his diagnosis (that would wait until he’d seen a specialist at the University of Washington) but told him it looked, theoretically, like cancer. It was 2013. Roark had stage 2, grade 3 breast cancer.

Del Gardo, a former computer salesperson from Covington, Kentucky, was diagnosed in 2012 with stage 2 breast cancer. When his left nipple began hurting “like hell,” breast cancer never occurred to him. “I just knew something was wrong. Cancer was so far from my thoughts,” he said.

When diagnosed with such an unexpected cancer, many men — and their doctors — are often incredibly curious as to why and how.

Del Gardo, who has an 11-year-old son, discovered that he has a very mild form of Klinefelter syndrome, meaning he is carrying an extra X chromosome. Other factors that affect the balance between estrogen and testosterone, such as obesity, can also raise men’s breast cancer risk.

When his doctors asked about family history (close family relatives with breast cancer raise men’s risk too), Roark noted that his mother had suffered through breast cancer — but he was adopted. Without a known BRCA mutation or a known family history, his breast cancer retains an aura of mystery.

The invisible man

When he went in for his biopsy, Roark saw that even though he had been instructed to wear his gown open at the front, the female patients wore theirs the other way around.

As he walked down the hall, “People looked away,” he said. “They raised their newspapers.” He felt shunned.

For many men, that feeling of isolation doesn’t end there. A man entering a women’s clinic for treatment can feel like a fish out of water, unlikely to see any other male breast cancer patients.

Dr. Julie Gralow, the Seattle Cancer Care Alliance oncologist who treated Roark, estimates that she has about three male patients at any given time. But the men a male breast cancer patient usually sees are there to support a female family member or friend. Even the medical forms can make male patients feel like they don’t exist.

Del Gardo remembered feeling frustrated as he sat in a Wellness Center for Women filling out medical forms that didn’t have an option to skip questions like “date of last menstrual period” or even note that he'd never menstruated at all. He said he'd prefer wellness centers be renamed to include men and women.

Roark, too, noted disparities, adding that his first mammogram was an awkward struggle. A strapping six-foot-four, Roark’s technician was a “tiny, petite” woman who stood on a milk carton and attempted to squish tissue from his pectoral area between the mammography plates.

“She said, ‘You’re not giving me much to work with!’” he remembered. “I thought, ‘I didn’t ask for this.’”

Finding community

Women with breast cancer generally have no trouble finding a community — either other women in their lives who have lived through the same disease or a breast cancer–centered support group.

But men looking for similar community may not find it so readily.

“I had one patient, many years ago, who was welcomed into a local women’s breast cancer support group,” said Gralow. All well and good — until he moved to a new state. “The next group he tried to join rejected him. They didn’t want a man joining,” she said.

Del Gardo didn’t face rejection from his peers, but he wanted to connect with other men in the same boat, raise awareness of breast cancer in men and help dispel myths.

“Men don’t say we have breasts, we say we have pecs!” he said — and started ProtectThePecs.org to raise funds to support research in male breast cancer. He shared his story with the Male Breast Cancer Coalition as well, adding his voice to the growing chorus online.

Roark was working as a school counselor when he was diagnosed and turned to his coworkers for support and information. “How many guys do you know who’ve had breast cancer? None!” he explained. Not so with the women he knew through work, many of whom met his careful approach — “Can I ask you a personal question?“ — with warmth. Roark quickly adopted 10 “breast” friends who were happy to share their experiences.