I’m standing bare-chested and goose-fleshed in the half light of a small room, undergoing a mammogram that’s not proving easy for either the X-ray tech or me.
No doubt these things are never easy, for anyone, any time, but this is different. When a woman undergoes a mammogram, there’s usually breast tissue to mash between the glass plates. When I undergo one, there’s little more than an unobliging fold of what feels like mostly skin for the tech to coax forth from my bony chest.
“We don’t get many men in here,” she tells me.
I hug the machine so enough of me can be squished between the glass, but 15 minutes later the radiologist requests a do-over. There’s something there. Wonderful. The tech takes a new X-ray, then asks me to wait in a spartan, curtained-off stall smaller than a Walmart fitting room, there to wonder if the claim my father’s legacy has on me is about to come due, in a dreary medical building in Buffalo, NY.
How did I get here? The story begins with a sideways nipple, Dad’s left. My stepmother, Margaret, called it to his attention as they stood at their double bathroom sinks preparing to go to work in Lexington one June day in 1997. “How long has that been that way?” Margaret said. “Oh, my God,” Dad said, “there’s a lump there.”
After that first blip of alarm, my father’s attitude toward the half-inch mass settled into “‘How do we fix this?’” mode, my stepmother recalled. My dad was Bob Kaiser, after all, an engineer who solved problems such as how to climate-control a peanut butter-making operation.
The situation in which Dad found himself in June 1997 was stickier than a peanut butter factory, though. A life-or-death sense of urgency informed everyone’s response. After the discovery in the bathroom, there would be a same-day trip to see Dad’s general practitioner, John Baldwin of Lexington, who himself would make my father an appointment with a surgeon; a hurry-up biopsy several days later; a pathologist hunched over a light microscope moments after that; and a surgeon performing a mastectomy the same day as the biopsy.
The more than 2,600 new cases of men’s breast cancer annually may not move the needle, nor may the 500 deaths from it. But a single diagnosis can send it spinning.
‘The trouble with pink’
For decades, men with breast cancer have had to overcome more than a disease. They’ve also had to contend with National Breast Cancer Awareness Month. October’s rosy color palette, detractors say, creates the impression the disease is the exclusive province of women.
So lacking in awareness of men’s breast cancer are we as a society, the relative few who know a men get the disease and therefore can keep an eye out for it often have discovered men’s breast cancer the hard way, through a loved one’s diagnosis.
A study published in the American Journal of Nursing in 2010 found eight out of every 10 participants were unaware men’s breast cancer exists. That’s surprising only because the number wasn’t 10 out of 10. Everyone I told about my father after his diagnosis was astonished to hear a man could get breast cancer. I, too, was surprised. Was Dad? Margaret thinks not, but he does seem to have been caught off guard. It was Margaret, after all, who read about breast cancer, stayed vigilant for it, knew a weird nipple when she saw one, and called Dad’s attention to it. On his own, my father would have noticed the oddity on his chest – when, exactly?
I don’t know the answer to that, but I know this: The more time accrues, the more is lost. Today, almost 25 years after Dad didn’t notice his lump, men across the country still are overlooking anomalies in their own breasts, and it costs many of them dearly. “I’ve seen many men who notice a lump in their breast and initially write it off, waiting until it gets bigger and wasting valuable time, because breast cancer is thought of as exclusive to women,” said Michael Zeidman, a breast cancer specialist at Mount Sinai Hospital in New York City. A study of male breast cancer found the average time between first symptom and diagnosis was 19 months.
Whether our collective ignorance is despite the best efforts of Breast Cancer Awareness Month or precisely because of it is a point of debate. Since its inception in 1985, BCAM has done immeasurable good; studies have shown it has led to an increase in the detection of breast cancer. But awareness month also has drawn its share of critics, who have a name for the way well-intentioned advocates and profiteering opportunists alike paint the disease in a color overwhelmingly linked to women: “pink-washing.”
“The trouble with pink,” said breast cancer survivor, activist, and blogger Nancy Stordahl, “is that it’s pink.”
‘More people understand now’
Owen Toale, 73, of Medina, NY, didn’t know about men’s breast cancer until he himself was diagnosed with the disease – nor did many people he told. “People were shocked,” said Toale, who was treated at Roswell Park Comprehensive Cancer Center, in Buffalo. “‘Who are you kidding?’ they’d say.”
Things are changing now, thanks to the intensifying efforts of men’s breast cancer advocacy campaigns such as the Men’s Breast Cancer Consortium and the Male Breast Cancer Coalition, most of which seem to be led by women. Breast Cancer Haven even pitches in, turning its pink social media channels blue during Men’s Health Week, in June. “More people understand now,” Toale said.
One reason men’s breast cancer gets obscured is that it is obscure. This year, 2,600 men are expected to be diagnosed with it, and that amounts to only one percent of all breast cancer cases. Toale, who like my dad had his wife to thank for pointing out to him the lump in his breast, felt out of place in support groups. “I was the only male in the room,” he said.
But this year, for the first time, a sitting U.S. president’s Breast Cancer Awareness Month proclamation specifically mentioned men. “We stand with the courageous women and men who have been diagnosed with breast cancer and honor those who have lost their battle to this terrible disease,” President Joe Biden said last month.
“We’ve seen the change firsthand,” Male Breast Cancer Coalition founder Cheri Ambrose said, “with men now being included in clinical trials and research and men being included in the labeling of breast cancer drugs.”
Lucky you, lucky me
On Dad’s way to work in Lexington the morning of the sideways nipple, he phoned Baldwin and made an appointment. The doctor would see him that day.
For Baldwin as well as my dad, men’s breast cancer was uncharted territory. Though Baldwin had sent some men for biopsies, all had come back negative, so thus far he had seen no men’s breast cancer cases as a doctor. After my dad, he would go the rest of his 50-year medical career without seeing another. But just to be on the safe side, Baldwin said, he was referring Dad to a surgeon ASAP.
Days later, Margaret accompanied Dad to a Lexington hospital for the biopsy, which was to be followed immediately by a mastectomy if necessary, she recalled. Peering through a microscope at the tissue sample from the biopsy, the pathologist saw one man’s fate.
It’s funny. The words “lucky” and “fortunate” are used a lot in cancer cases. Because I undergo an annual mammogram, I’ll almost certainly know if breast cancer is hunting me before I see the whites of its eyes, so I’m lucky, right? Lucky by the grace of the cautionary tales that are the lives and deaths of everyone in the house where I grew up— my mom, who died of breast cancer, my sister, who succumbed to ovarian cancer, and my father? Lucky by the terrible grace of others’ tears?
Dad, too, was lucky, I guess. It’s fortunate we caught it when we did, the surgeon told Margaret.
‘The only male in the room’
Re-entering the world after his mastectomy, Dad joined the ranks of America’s invisible men – those with breast cancer who walk among us unseen either because of our unawareness or their reticence to say they have a woman’s disease. “They like to say they have chest cancer.” said Linda Holden of Burlingame, California, who served as caregiver to her husband, Bob Holden, for 17 years until he died of metastatic breast cancer in 2020.
For the sake of other men who might benefit from self-exams, survivor Sean Salo, 50, who lives outside New York City, willed himself to get over his reticence and call his breast cancer what it was.
“Learning more about it and those who were affected by it through the team at Memorial Sloan Kettering Cancer Center and through … the Male Breast Cancer Coalition, I became much more comfortable telling my story,” Salo said.
Among other things, the uncommon nature of men’s breast cancer affects what’s spent diagnosing it, some say. “It comes down to a cost issue,” Holden said. With a biopsy costing thousands of dollars, many doctors play the odds, first ruling out more likely diseases, she said. Holden bases this on a confrontation she had with doctors about their first diagnosing her husband with overdeveloped breasts.
Two years later, in 2003, Bob Holden was diagnosed with Stage 4 breast cancer that had spread to his bones.
What does breast cancer cost? More to treat than any other kind of cancer, according to the Centers for Disease Control.
Even greater is breast cancer’s human toll. Twelve years after Dad’s breast cancer diagnosis, when he and Margaret were living the retired life in Florida, he got himself scheduled for knee surgery and underwent the usual battery of pre-op tests. One of those tests was a chest X-ray. When Dad’s doctor received the results, he phoned my father and asked him to come in. Had Dad experienced any chest pains or shortness of breath? the doctor asked. The chest X-ray showed spots on his lungs.
“That took the air right out of me, probably both of us,” Margaret said. “The breast cancer had returned.”
Less than a month before Dad died, he and Margaret returned home at twilight one day, and the light inside the house was a dusky gloaming Dad couldn’t bear. He suggested they turn on the lighted Christmas houses. “He loved to see them,” Margaret said.
“He also loved the prisms from the crystals hanging in the windows when the low December sun caught them. ‘The rainbows,’ he called them.”
Dad died in January 2010.
Fade to white
That would be the end of the story if stories like this ended, but they reverberate through the ages.
My mammogram, in March 2021, turned out okay. The white stuff the radiologist saw on the X-ray was nothing more than a web of glandular ducts tangled like spaghetti behind the nipple. How lucky was that? And yet it was my left nipple, just like Dad, so I felt at once fortunate and cursed. Was this a warning I’d be wise to heed? This and the wakeup call about men’s breast cancer that was Dad’s final gift to me?
I decided to schedule the genetic counseling and screening my doctor had been urging me to undergo but that I’d so far been too chicken to follow through on. I owed it to my children. I owed it to my parents. To protect the living and honor the dead.
“How did Dad feel about pink?” I asked Margaret one recent fall day.
“He had no problem with pink,” she said. “I can’t remember a pink shirt or tie, but not because he disliked it. He had a pretty floral tie with pink flowers on it.”
A few days later, she messaged me with a photo. “I just happened to look at my outside door and see this at the top,” she wrote. “Bob put it there more than eleven years ago.” It was a decal bearing the words “Fight Against Breast Cancer” and “National Breast Cancer Research Center.” In the center was the iconic pink-ribbon image, only it was almost completely faded by time and the Florida sun, and, in the softening autumn light, it looked a ghostly white.
Robert L. Kaiser is a Lexington native and a longtime journalist whose stories have appeared in the Chicago Tribune, Chicago Tribune Magazine, the Washington Post, the Los Angeles Times, and several other publications. Now a resident of Buffalo, NY, he soon will return to his home state as a member of the faculty at Western Kentucky University’s School of Media.