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

What it’s like to be a man with a 'woman’s cancer'
Male breast cancer survivor Dan Roark
Male breast cancer survivor Dan Roark of Bonney Lake, Wash., never suspected that he would be diagnosed with the same type of cancer as his mother. The disease hits about 2,600 men in the U.S. every year. Photo by Robert Hood / Fred Hutch News Service

Editor’s note: This is the second in a two-part series on male breast cancer. Read part one here.

Steve Del Gardo was at the pool when he noticed the stares again. This time it was a group of 12-year-old boys gawking. They weren’t the only ones who had stared that summer, and Del Gardo was getting a bit tired of the attention.

“So when one of them said, ‘Mister, what happened to your nipples?’ I leaned over and asked him, ‘Do you know that game, nipple twister?’” Del Gardo recalled. The boy nodded. “I said, ‘I played that game, and mine fell off.’ The look of horror on his face was priceless.”

The boy’s mother didn’t find Del Gardo’s tall tale particularly precious and stomped over to tell him so — but stopped short when she saw the mastectomy scars carved into both sides of his chest. It wasn’t childhood hijinks that had left him nipple-less. Del Gardo is one of a rare group: men diagnosed with breast cancer.

Cancer feels like a betrayal, a mutiny of the body. Facing an unexpected type of cancer, a cancer they didn’t even consider to be physically possible, leaves some patients feeling doubly shocked and betrayed. Men diagnosed with a disease most people associate exclusively with women can feel confused and isolated.

Del Gardo, who has made male breast cancer outreach and education his mission, estimates that about 98 percent of people who approach him are women, on behalf of men in their lives with breast cancer.

“Men are too afraid to come forward,” he said.

Steve Del Gardo
Steve Del Gardo, of Covington, Kentucky, was diagnosed with stage 2 breast cancer in 2012 after one of his nipples became exceedingly painful. Del Gardo underwent a double mastectomy and chemo. Afterward, he decided to start a nonprofit to help connect male breast cancer patients and raise awareness about the disease. Photo courtesy of Steve del Gardo

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.

Dr. Julie Gralow
Dr. Julie Gralow, a breast cancer oncologist with Seattle Cancer Care Alliance, acknowledged that finding community can be difficult for male breast cancer patients. "I had one patient, many years ago, who was welcomed into a local women’s breast cancer support group." When the patient moved out of state, though,"the next group he tried to join rejected him," she said. "They didn’t want a man joining."

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.

Treatment brings a new normal

Roark, who retired last June from Thomas Jefferson High School in Federal Way, found chemotherapy unexpectedly enervating. It didn’t feel too bad at first, but soon “I’d come home and I didn’t want to move.”

His girlfriend, Deb, provided plenty of nurturing during his surgery, radiation and the chemotherapy that zapped his hair.  

He went back to work part time the first June after his diagnosis, without hair and with little energy. In retrospect, he said, he took on too much. In 2015, one year after his chemotherapy ended, Roark struggled with pins and needles in his feet (a common chemo side effect); unfortunately, the treatment for his neuropathy leaves him foggy-headed and endlessly sleepy.

Del Gardo remembers that treatment was such a whirlwind he hardly had time to digest the knowledge that he had breast cancer. Chemotherapy sapped his strength and decimated his once thick, lustrous hair (though it did grow back wavier than ever).

“It took months for me to embrace the baldness,” Del Gardo said. “I felt like a different person.”

He also encountered side effects from hormonal therapy that he never expected, like hot flashes and joint pain. The whole ordeal left him weak — too weak to fight when his employer let him go midway through treatment. After struggling for 10 minutes to open a Gatorade bottle for his son, Del Gardo has returned to the gym to rebuild his strength.

A lack of breasts doesn’t necessarily shield men from the emotional side effects of mastectomies. Each man who undergoes a mastectomy will feel differently about the outcome. Roark, though not exactly pleased with his mastectomy scar, thinks “it’s easier for a guy. It doesn’t impact my sexuality in my head” as it might for a woman, he said.

Del Gardo is less sanguine: “People are visual creatures. What women want to date a guy with no nipples?”

It took him a good year or two to get over the surgery and now he’s added some tattoos to his chest. But as dire as it sounds, it’s not all bad. Del Gardo relied on his family, friends and sense of humor to get through.

“I like to put humor into the tales [of my breast cancer],” said Del Gardo of his nipple-twister story. “It’s not all doom and gloom.”

In fact, Del Gardo is one man with breast cancer who considers it a blessing.

“I found my true calling and mission [after breast cancer],” he said. “I like to help people and get the word out.”

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Sabrina Richards is a staff writer at Fred Hutchinson Cancer Research Center. She has written about scientific research and the environment for The Scientist and OnEarth Magazine. She has a Ph.D. in immunology from the University of Washington, an M.A. in journalism and an advanced certificate from the Science, Health and Environmental Reporting Program at New York University. Reach her at srichar2@fredhutch.org.

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