Carlton Robinson is a 6-foot, 205 pound security guard who, up until three years ago, spent most of his spare time sculpting his masculine physique.
Then one day he watched his wife do a self-breast exam and decided to give it a try. That's when he found a little knot -- the size of a swollen mosquito bite -- lodged behind the nipple and areola area of his right breast.
Robinson, now 54, had also noticed that his nipple was swollen, scaly, changing colors and tilting a little to the left. So he went to the emergency room at Midtown Medical Center and then to his primary care physician, who referred him to Dr. Andrew Pippas at the John B. Amos Cancer Center. There Robinson discovered that he had the BRCA2 gene and a malignant tumor in his chest.
"I never in a million years would have thought a man could get breast cancer," said the Cusseta, Ga., resident who works at the Georgia National Fairgrounds & Agricenter in Perry. "I broke down and started crying because when I heard 'breast cancer,' it was like, 'Oh, God, I'm gonna die.'"
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Although such situations are rare, men make up about 1 percent of all invasive breast cancer cases, according to the American Cancer Society. Each year, that amounts to about 2,400 new cases scattered across the country. About 430 men are expected to die from the disease this year.
Dr. Kenneth Smith, director of breast surgery services at the John B. Amos Cancer Center, was Robinson's surgeon. He said he sees on average about one or two male breast cancer cases per year, and several more are referred to the center out of concern about lumps and lesions that turn out to be non-cancerous.
"The most common finding that would make us concerned about breast cancer in a male is a mass deep to the nipple-areola area that's hard and usually painless, and sometimes they'll have bloody nipple drainage," he said. "I'm sure that a lot of men don't pay any attention to that area just because they don't think they should be at risk for getting breast cancer. They may not be at as high a risk as women, but they still have to be aware of changes that occur there and the need to be evaluated."
Smith said boys and girls are born with basically the same amount of breast tissue. It starts as a little bud behind what's called the nipple-areolar complex. When young women reach puberty, the hormones that they produce cause the tissue to blossom.
For men, there's usually not much production of breast tissue, unless there's an estrogen-to-testosterone imbalance, which can be caused by a tumor that's producing estrogen, anti-hormonal therapy for prostate cancer or other factors, Smith said.
Another risk factor for male breast cancer is gynecomastia, which is the development of breast tissue in men. There are also genetic defects that could lead to the disease, like Klinefelter Syndrome, a chromosomal abnormality that affects male physical and cognitive development.
"The other situation where we see breast cancer in men is in the BRCA1 and BRCA2 gene abnormalities," Smith said. "These are genes that are defective and they are passed on from family member to family member."
A family trait
Robinson grew up in a small town near Perry with his parents and six siblings. After graduating from high school, he went straight to the military and spent six years at Fort Benning.
He and his wife, Diane, have been married for 35 years. They have four grown children and 25 grandchildren.
Before Robinson was diagnosed with breast cancer, he said he was just enjoying life. Since he became a security guard at the fairgrounds in 2003, he said it was important that he kept his body in shape. He worked out every day after work, benching about 200 pounds and doing 50 to 75 pushups.
"I liked showing off my muscle tone and stuff like that," he said.
Robinson said his father died from prostate cancer 15 years ago, but he wasn't aware of anyone in his family who had breast cancer. His mother passed two years ago from what he believes was old age. But after receiving his diagnosis three years ago, he learned that his father lost 17 of his family members to breast cancer, and the list included sisters, brothers and nieces.
"Dr. Pippas told me to notify all my siblings about what happened and what was going on with me," he said. "It's a mutated gene in my family tree, and it was on my father's side."
When Robinson informed his siblings of the family trait, two of his sisters and a niece went to their physicians for exams. All three discovered they also had breast cancer. As a result, each sister had a breast removed and his niece had both a double mastectomy and hysterectomy.
"Before that, they didn't have a clue that they had the BRCA2 cancer gene," he said. "My father was the only one in our family who we knew had cancer."
Struggling with image
Robinson said accepting that he had breast cancer wasn't easy.
"I didn't even want to go to the breast doctor because it was all women there. And here I am, one man going to the doctor getting a breast exam," he said. "It was embarrassing, but it was something I had to deal with if I wanted to survive."
For treatment, he had a mastectomy, chemotherapy and radiation. He said Dr. Smith removed his right breast and 14 lymph nodes.
"Now I have one breast and I don't even like taking my shirt off around my wife because I still feel insecure," he said.
But it could have been worse, he said.
"I had a lot of upper body, upper strength, from lifting weights," Robinson said. "And once they removed that part, I still had a chest. I credit that to working out."
Dr. Smith said men tend to be diagnosed at later stages than women because those with breast cancer are so few in number and there's no systematic process for screening them such as annual mammograms. When they discover they have the disease, they have no options beyond having the breasts removed.
"There are some studies looking at breast preservation such as lumpectomies, which is a common operation that we do in women," he said. "The challenge there is because the tissue that develops the breast cancer is sitting right behind the nipple-areolar complex, it's often times difficult to get a good amount of normal tissue between the cancer and the nipple. So you're having to sacrifice the nipple or areolar complex, which sort of defines what the breast is in men."
Smith said men also face lower survival rates than women because of late-stage diagnosis.
"On a stage-by-stage basis they're equal, but the challenge is that you generally see men at a later stage, and therefore their prognosis is not as good as if it had been detected earlier," he said. "But if you compare stage two women to stage two men, they both have an equal survival curve."
Smith said men shouldn't feel self-conscious about having breast cancer, but some have difficulty adjusting to changes after surgery.
"With the loss of breast tissue, it changes the contour of the male patient's chest and reconstruction really hasn't caught up in male patients like it has for female patients in post-mastectomy changes," he said. "It will certainly give you a little different appearance. For people who are into bodybuilding, weight-lifting, those sought of things, it may impact their concept of what their body form should be."
He said what's most important is that men become aware of the risk factors and get evaluated as soon as possible. If they have a family history of breast cancer, whether among male or female relatives, they may be at risk, he said. They should also be checked if they find a persistent mass, a lump or nipple discharge in the breast area.
"The other situation we worry about is what sought of hormonal exposure they've had, which can impact what estrogen levels are in an otherwise normal male body," Smith said. "But the primary message is -- be aware of your body."
Surviving the experience
Robinson, who will celebrate his 55th birthday on Oct. 19, said he stopped chemotherapy about two years ago, and he is now cancer free. He takes 20 milligrams of Tamoxifen to keep the disease from reoccurring. He said chemotherapy reduced his heart to 46 percent strength, so he sees a cardiologist. And he doesn't lift weights the way he used to because of swelling in his right arm and hand.
He has, however, come to grips with his experience and eventually shared his testimony with his church family at St. Phillips C.M.E. Church in Cusseta. He said people couldn't believe that he had breast cancer, but he used it as an opportunity to inform them that it's not just not a woman's disease.
"It got a whole lot easier for me then," he said. "The church congregation was full of men and women. So, I just decided, OK, I'm alive and I'm thankful because I could have been dead."
Now, he just wants to do whatever he can to help other men who might be in his situation.
"It's been a life changing experience for me," he said. "My life did a whole 180 and everything is different now. I'm glad I'm alive and anything I can do to make other people aware of it, I'm willing to do."
MALE BREAST CANCER STATISTICS
About 2,360 new cases of male invasive breast cancer will be diagnosed in the U.S. in 2014.
About 430 of those men will die from breast cancer.
Breast cancer is about 100 times less common among men than women.
The lifetime risk for men is about 1 in 1,000.
The number of cases in men relative to the population has been fairly stable over the last 30 years.
FEMALE BREAST CANCER STATISTICS
Next to skin cancer, breast cancer is the most common cancer among American women.
About 1 in 8 women (12 percent) in the U.S. will develop invasive breast cancer during their lifetime.
Breast cancer is the second leading cause of cancer death in women, exceeded only by lung cancer.
About 232,670 new cases of invasive breast cancer will be diagnosed in women this year.
About 40,000 women will die from breast cancer.
The chance that breast cancer will be responsible for a woman's death is about 1 in 36 (about 3 percent).
Death rates from breast cancer have been declining since about 1989, with larger decreases in women younger than 50.
Today there are more than 2.8 million breast cancer survivors in the United States.
Source: The American Cancer Society