Breast cancer doesn’t just affect women—men can get it too, and many men don’t know that. There is a lack of professional awareness and support due to uninformed care providers. Many doctors don’t even recognize men can get breast cancer and don’t routinely check our breasts during physicals.

When men do get diagnosed, they often feel isolated when they go for check-ups and treatment, since they are usually the only men in the waiting room with breast cancer. Everything at a diagnostic facility is geared towards women. The paperwork only has questions for women (last menstrual cycle, breastfeeding, etc). Everything is pink. From the gowns, to the pictures, to the ribbons that surround us. Even some of the renowned breast cancer organizations give little attention to or acknowledge breast cancer is not just a woman’s disease.

Here is Bill Rotter’s story. Bill of Mequon, WI, ignored the lump he felt in his chest, as many men would, for several weeks. When he finally asked his wife to check it out, she was troubled and insisted he see his primary physician who immediately ordered an exam. At the clinic where he was instructed to go, Bill was greeted by the receptionist who asked if he knew where he was. He assured her he was in the right place, checked in, found a seat, and then anxiously waited and waited. For or over an hour, one by one, technicians called everyone but him. Practically beside himself with frustration, he went back to the receptionist to find out why he hadn’t been called. She informed him that she had a call into his doctor because the order for his exam was only for one side of his chest but he needed both. Bill picked up his cell phone and tried to expedite things—he was sick of waiting. Finally, he heard: “Bill Rotter, next, are you ready for your mammogram?”

Eager to get out of that women’s waiting room, Bill made his way past the pile of fashion magazines, pink-washed walls, and headed to the changing room, normal procedure for the 66.8% of women in the U.S. over the age of 40 who have had a mammogram within the past two years.¹ But on this day, nothing was normal. Not for him. Not for his family. Not even for the technician who told Bill she wasn’t used to scanning men. Positioning him for compression would be tough, she said, since he didn’t have much breast tissue.

The images on Bill’s mammogram were abnormal. A follow-up ultrasound and a needle biopsy to his right breast confirmed what Bill and his family had been dreading: breast cancer. He was, from this day forward, a man with breast cancer.

“Certain gene mutations can carry an increased risk of breast cancer in men,” said Dr. Joseph Russo, a radiologist specializing in breast cancer at St. Luke’s in Bethlehem, PA. “For example, the BRCA2 gene mutation is associated with an increased risk of breast cancer of about 6 in 100 (versus 1 in 1000 normally). BRCA1 mutation can also cause breast cancer in men, but the risk is low (about 1 and 100). Each of their children has a 50% chance of carrying the same gene change and associated increased cancer risk.” A simple blood test can confirm if you’re a carrier.

Bill and his wife knew that the first thing they had to do was tell their kids. Their two adult sons lived out of state. It’s a call no father wants to make. “One of the hardest things I had to do was to call my sons; I would much rather have talked to them face-to-face,” said Bill. “But they were so supportive and comforting.”

It was time for a treatment plan. Bill had been planning for what he thought was the biggest challenge of the year: selling two iconic hardware stores he co-owned for 29 years. Instead, he was now facing something much more daunting—fighting breast cancer. Within days of his diagnosis, he met with a radiologist, oncologist, surgeon, and nurse navigator.

“My oncologist asked me if I was of Ashkenazi Jewish heritage,” said Bill. “I confirmed that I was. The Ashkenazi Jews are from Eastern Europe. The oncologist told me that this increased the chances of me being a carrier of the gene mutation by tenfold.”

Bill felt he had no choice but to take the test, knowing that if he had the BRCA gene, he could have passed it down to his sons. He did and tested positive. Then he set up a meeting with a genetics counselor who started by asking questions about his family history. Bill shared that his father and two uncles passed away from prostate cancer; the counselor determined the BRCA gene was therefore passed down from his father’s side. He had to tell his children, siblings and cousins that they too were at a higher risk for cancer.

Bill chose a mastectomy followed by surgery on his lymph nodes to ensure the cancer had not spread. He went through chemo and radiation for most of 2014. “2014 was a lap around the sun that I’d rather forget,” said Bill. With the support of family and friends, he worked to demystify male breast cancer and create awareness. There was a lot doctors and patients could learn about male breast cancer, which makes up less than 1% of all cases of breast cancer. “I wanted to focus on educating people not only about male breast cancer but about the genetic side of cancer,” said Bill. “People really don’t seem to know that it’s important to understand if you’re predisposed—genetic cancers account for 10% of all cancers. And male breast cancer is just one of those diseases that doesn’t get a lot of attention. I had friends say ‘What do you mean you have breast cancer? Men don’t have breasts!’”

“We always evaluate male patients with extreme caution,” said Russo. “Due to generally decreased awareness compared to women, male breast cancers can often present at a more advanced size and stage. The signs and symptoms of breast cancer in men are similar to women: lump or swelling, skin dimpling, nipple retraction, redness or scaling of the nipple or skin, and nipple discharge.”

Bill has been cancer free since the end of 2014 and has become an advocate for education on genetics and male breast cancer. “I have such a close relationship with my dad,” said Bradley, 25, one of Bill’s sons. “I’m so proud that he’s such a strong advocate for the cause and can help other families.”

How doctors treat patients and plan therapies for diseases like breast cancer is changing. Personalized medicine is becoming a reality. If a doctor understands a patient’s genetic make-up, he can target the disease more precisely. Drug therapy companies are partnering with companies like GE Healthcare to develop smaller batches of drugs targeted at smaller population of people. Therapies are becoming more precise to treat patients like Bill who have unique needs.

Bill is now fully recovered and retired. After recently selling his famous hardware stores in Milwaukee, he enjoys spending time with his family and golfing. “Everyday has a different meaning for me now,” said Bill. “I look at every day that I’m happy to be here and grateful that I’m healthy. Every day is a gift.”