AKRON, N.Y. – Barry Jones of Akron is the one in every 1,000 men who get breast cancer.
And of those very few men, he considers himself one of the lucky ones because it was caught early.
“Most guys don't do breast exams, they've not been told to do breast exams. It's so alien to them,” Jones said in an interview at his home.
It was alien at first to Jones, too, who first noticed a painful lump in his left breast last May.
Not many men will experience pain due to breast tumors, and that symptom may have saved Jones’ life. He underwent two surgeries in 2016, radiation and chemotherapy. He is currently in remission.
Now, Jones' goal is to bring more awareness to male breast cancer, and a key part of that is removing its stigma.
“It's considered a female disease,” Jones said. “For guys to say the word ‘breast’ in a way that doesn't have some sort of sexual connotation or overtones to it is just something that's not done. I mean, men have breasts. Yes, they do.”
Jones is making progress politically. This year, Erie County executive Mark Poloncarz issued a proclamation recognizing the third week in October as one that focuses on male breast cancer. Jones was surprised and proud when he received that proclamation addressed to him in the mail. Similar proclamations recognizing the same week have been signed and sealed elsewhere in the state and around the country.
Jones is in touch with male breast cancer survivors around the world thanks to online groups, and together, they’re hoping to educate more men.
In addition to being more aware, Jones and his wife Fran have also taken up learning about how diet and environmental factors may increase one’s risk for cancer. Jones is thankful that his wife stood by him and helped him throughout his treatments.
“She was the one that would drive me to chemo. She was the one that was there all the time with me,” he said.
Fran Romeo said being a teacher helped her to look at tackling her husband’s cancer like an assignment: She took lots of notes to keep on top of the care Jones needed.
"I knew what he was going through. He felt so alone,” she said.
One in eight women will get breast cancer, compared to the one in 1,000 men. It's certainly rare for men –making up just under 1 percent of breast cancer cases – but as Jones puts it, winning the lottery is rarer.
Jones wants men to know they can get BRCA genetic testing too, they can perform self-breast exams at home, and it’s okay to talk about male breast cancer.
“That’s what I’m working for,” he said.