Michael Singer (@Bronxborn409) was diagnosed with male breast cancer back in 2010 to his complete surprise. “I had never heard of it back then,” he said during a recent conversation; “I had just lost my sister to metastatic breast cancer and no one ever told me that it might run in the family and that I should get checked. I never even knew men could get breast cancer.”
It was only a couple of years after his sister passed away that Michael felt a lump under his nipple. “At the time, I didn’t want to tell my wife because I was embarrassed,” he recalled; “I went and got a physical, but I was too embarrassed to tell the doctor.” Because of the stigma that it’s only a women’s disease and the general lack of awareness, it’s not uncommon for men to avoid the subject. Many don’t get checked early on, allowing the cancer to metastasize and grow more dangerous.
“My wife was upset that I didn’t tell the doctor,” Michael continued, “but the office caught something in my bloodwork. It turned out I was diabetic, so I went back for another appointment and that’s when I told the doctor. They sent me immediately for a biopsy. Ten days later, we went to get the results and that’s when he said, ‘Mr Singer, I’m sorry to tell you that you have breast cancer.’”
Michael was in disbelief.
“I didn’t even think this was possible,” he remembered; “I said to my wife: ‘What the hell is this guy talking about?’” Leaving the office, all Michael could think about was his sister and how she had died within a year after her diagnosis. Assuming he had the same window, Michael started thinking about his finances, wanting to leave his wife in a good position should his prognosis worsen. He got a mastectomy a week later.
After the surgery, he asked his wife not to tell anyone, still embarrassed by the diagnosis and the potential stigma surrounding it. “I was living in the closet,” he said; “When I got home, I immediately began searching the internet, but there was nothing online about male breast cancer. It wasn’t until I saw a special on Katie Couric about male breast cancer that I found the confidence to start talking openly about it.”
The 2014 special featured a young man named Bret Miller and veteran actor Richard Roundtree, famous for his role as John Shaft in the 1970s. “I had an epiphany watching that show,” Michael recalled; “My head just exploded. I mean if Shaft had male breast cancer, then why am I so embarrassed about it?”
Feeling empowered by the episode, Michael began thinking about the future. He was a retired government employee, but in his previous career he had been a manager, giving presentations on HR issues and other government services for 169 employees. “Being retired at this point, I decided to devote my time to getting the word out,” Michael explained; “Advocacy for men with breast cancer is really missing. We’re only 1%, but by the time most guys get diagnosed they’re fighting for their lives.”
Part of his continued advocacy efforts centers around better patient data, which has thus far stunted research into male breast cancer treatment. When Michael was still undergoing treatment, he spoke to the head of the therapy company about the potential side effects of continual usage. “I was on hormone therapy and you wanna come off the drug as soon as you can because there are some terrible side effects,” Michael stated; “There was a test for women to see if continuing the therapy was still beneficial, but there wasn’t one for men, so I asked why not? He told me the company didn’t have any male breast cancer cohorts to study.”
As we touched on in a previous Ciitizen blog, researchers can develop new treatment plans by analyzing how therapies have worked for similar patients in the past. Rather than subject male breast cancer patients to numerous trials that may or may not prove effective, physicians could use data from patients like Michael to hone in on what has worked previously and avoid the burden of experimental treatments.
There is still much to be learned about different types of male breast cancer, which is why Ciitizen has teamed up with Michael and the Male Breast Cancer Coalition to help patients gather their health data and share it for further research. “To be able to track the efficacy of these therapies for men…it would be a game changer,” Michael recently stated; “It’s a potential lifesaver for men that are on hormone therapy. The research that could come out of it could be amazing.”
To this day, Michael uses Ciitizen to organize his data and keep his records accessible while on the go. “I travel a lot, and there’s a 30% recurrence rate for men like myself, so I feel like I’m always walking on eggshells,” he explained; “Having that data available anywhere in the world—my scans, my blood tests, my biopsy; it’s great. The hospital I had my surgery at isn’t even open anymore, so it’s not like I can call and ask for my data today.”