Kenneth Todd Nelson never could have imagined a doctor's appointment for sinus problems would become a fateful moment. At the end of the visit, the doctor asked Nelson if anything else was going on with his body. Nelson happened to mention a small bump on his chest that he thought was an inconsequential ingrown hair.
That moment saved Nelson's life.
The "bump" was breast cancer, and within weeks, doctors started an aggressive treatment plan of chemotherapy and radiation. Nelson, then 33, faced physical and mental challenges over the next three to four months of grueling treatment, but he came out on the other side cancer-free.
Today, at age 37, Nelson remembers the thoughts running through his head when something seemingly innocuous turned into a diagnosis for a disease he knew little about.
"You don't think it's anything because you're like, 'OK, I'm going to be fine,' and then you hear that you have breast cancer," said Nelson, an actor and the owner of Financial Wellness Inc. in New York City. "It's something that takes a moment to process because it's kind of hard to believe, and then you're like, 'Wait a minute, are you sure?' Then you kind of start believing it. Then you're like, 'OK, I'm here at the doctor's office, so it must be real.'
'The message to men is not to ignore new masses in their breasts.'
"It was a state of just silence, and then I think fear creeped up, and then you get scared," he said.
Those feelings turned to loneliness and isolation during chemo, when Nelson didn't see many other men receiving treatment for breast cancer.
That's because male breast cancer is rare, representing 0.5 percent to 1 percent of all breast cancer cases diagnosed each year, and less than 0.5 percent of all cancers in men, said Steve Lo, M.D., an oncologist at Stamford Health in Connecticut.
Lo also serves as chairman of the medical advisory board for the Breast Cancer Alliance, a Connecticut-based organization that funds cancer research and education. The BCA tries to increase recognition of the male side of the disease through events such as a recent livestream webinar titled, "What You Need to Know About Male Breast Cancer."
The facts about male breast cancer
What do men need to know about breast cancer?
"The message to men is not to ignore new masses in their breasts," Lo said.
A bump or lump, like the one Nelson found, may be the only sign of breast cancer that a man sees or feels. Lo said the most common symptom is a painless, hard mass near the nipple.
Family history—Nelson's grandmother died of breast cancer—can also offer a clue. Lo said other risk factors include advancing age, an estrogen/androgen imbalance and inherited mutations of genes such as BRCA, the breast cancer gene, and others. Most people probably associate BRCA genetic testing with women, but the same gene mutation can increase the risk of breast cancer in men. One study reported 14 percent of male breast cancer patients have a BRCA2 mutation.
Most people probably associate BRCA genetic testing with women, but the same gene mutation can increase the risk of breast cancer in men.
Lo said several medical conditions and lifestyle factors can increase the risk of male breast cancer because they cause a higher estrogen state. These include hormone therapies that contain estrogen, liver disease, obesity, marijuana use, thyroid disease, testicular injury or disease, and Klinefelter syndrome, a genetic condition in males born with an extra X chromosome.
Despite all these possible influences, Lo said a vast majority of male breast cancer cases have no risk factors. In other words, male breast cancer doesn't have to be part of your family history or genes, and it doesn't necessarily strike a particular age group. While male breast cancer is most often diagnosed in men in their 60s, Nelson was just 33, and he has met other survivors who were diagnosed in their 20s.
"That's something that they need to start educating men on and to do self-examinations, as well, because a lot of times, you don't think a man can be affected by it in general, but also [not] a young guy or younger men," Nelson said.
What are the treatment options?
Treatment for male breast cancer is very similar to treatment for female breast cancer, Lo said. The options include chemotherapy, radiation, hormonal therapy and surgery, either a lumpectomy or a mastectomy.
As with female breast cancer cases, treatment of male breast cancer can be successful if it is detected early. Unfortunately, men tend to have a worse prognosis compared with women. Lo said the risk of death from breast cancer is 40 percent higher for males than females, based on a study by the Surveillance, Epidemiology and End Results (SEER) Program, a source for cancer statistics. He believes the disparity probably reflects a delay in diagnosis, which can occur because of a lack of screening, such as mammograms, and other guidelines encouraged for women.
"However, I wouldn't advocate screening for men, because male breast cancer is rare and, as a result, the benefit of screening in men will be very low and outweighed by the downsides of screening, which include possible false positives resulting in unnecessary biopsies, and it is also not cost-effective in screening of rare diseases," he said.
Male breast cancer primarily tends to be diagnosed late due to a lack of awareness of the disease. While awareness campaigns for female breast cancer are highly successful, they sometimes drown out messages about male breast cancer.
"Because male breast cancer is rare, we do not hear about it or personally know of anyone who had it," Lo said. "We need to make a special effort to mention male breast cancer when we are promoting awareness of female breast cancer."
Raising awareness of male breast cancer
Organizations such as the Breast Cancer Alliance are dedicated to getting the word out about male breast cancer.
"We have been committed to sharing men's stories over the years, whether at our annual luncheon, on social media or in our newsletters," said Yonni Wattenmaker, executive director of the BCA. "We will continue to do so to try to fill the void."
She said the recent webinar was intended to reach people who may be surprised to learn men can get breast cancer. Men who have survived or are living with breast cancer shared their stories, as well.
Wattenmaker said the lack of awareness about male breast cancer really comes down to a simple numbers game: A woman's lifetime risk of developing breast cancer is 1 in 8; a man's risk is 1 in 833.
"As such, when people think of breast cancer, and the color pink with which it is associated, they think of women," Wattenmaker said. "It is educational programs like this [webinar] that will broaden understanding and encourage men, or the women in the men's lives, to make sure they are diligent about this aspect of their health."
Nelson also advocates for awareness and support through organizations such as the Male Breast Cancer Global Alliance. He urges men to set aside any stereotypes about being "strong" and instead be vulnerable enough to go to a doctor regularly, perform self-examinations, consider genetic testing to learn about possible gene mutations, and include the people closest to you in the cancer conversation.
"There's strength in knowing the truth," he said.
As an actor, Nelson is a storyteller, and he encourages men to share breast cancer stories, which may benefit both men and women.
"Telling your story can actually save a man's life, or anyone's life," he said. "The reality is breast cancer does not discriminate based upon your age or your gender."
Nelson said he's healthy these days and more vigilant about taking care of his body.
"If I see something, I say something. I don't want to ever take the risk of not saying anything," he said. "And I think, ultimately, that's what I want to say to people: If you see something, say something, because early detection saved my life."