It begins as a lump.
Maybe it will go away. Maybe it won't.
But you're a man.
You didn't know breast cancer could form and fester under your skin, but it can. For Sean Salo, Matt Gomes, Paul Kirby, Garry Davis and Arnaldo Silva, it did.
Approximately 1 out of every 100 people diagnosed with breast cancer in the U.S. is a man – meaning the risk is small, but far from zero. About 2,300 men will be diagnosed every year, and 500 will die. For comparison, about 255,000 women will face a breast cancer diagnosis in any given year and 42,000 will die.
Dr. Anne Schott, the associate director for clinical research at the University of Michigan Rogel Cancer Center, sees about one man with breast cancer each year on average. It's atypical to screen for it.
"I would say that there is in general, less awareness of breast cancer in men and certainly we don't do mammographic screening for breast cancer in men," says Schott, a medical oncologist who has specialized in breast cancer for 25 years.
But just because there's less awareness and prevalence doesn't mean the disease can't change the course of a single life.
'A bit of a mystery'
Sean Salo felt a lump on his chest in early April. The New York resident was used to little abrasions or swollen tissue under the skin. But this was different: Hard and immovable, in between the size of a pea and a shelled peanut.
One ultrasound and mammogram later, and his radiologist didn't mince words: "This, to me, looks like breast cancer."
A biopsy in May confirmed the suspicion.
He opted to have a bilateral mastectomy to take out his stage 2 cancer and was later prescribed estrogen blocker tamoxifen. The cancer hadn't yet spread to his lymph nodes, meaning he was eligible for a genetic test called Oncotype DX.
The test revealed it was unlikely the breast cancer would recur. For Salo, that meant he could just stick with tamoxifen and avoid post-surgery chemotherapy.
Further genetic testing found he did not carry either of the BRCA gene mutations – the most common hereditary breast and ovarian cancer genes, BRCA1 and BRCA2 – which he was surprised to hear. His mother had breast cancer and survived. His aunt had breast cancer and didn't.
"Good news for my daughters, but at the same time, still a bit of a mystery for me," he says. His genetic counselor suggested he do additional testing given other cancers – stomach, brain and colon – had popped up over time in his family.
"It's frustrating, but at the same time, if me providing this sample that can be tested, if it helps them find something else that allows other people to have early indicators of a predisposition toward cancer, then it's wonderful," he says.
He sought support from the Male Breast Cancer Coalition, a group based in the U.S. but with international membership. He connected with a fellow patient, Matt Gomes, who happened to have the same surgery a few days before him.
"Certainly during our healing, we've been able to compare notes about what we've been going through, what we've been feeling, what our emotional states are," Salo says.
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'Let's not roll the dice again'
Gomes, of Boise, was no stranger to cancer: his mother was diagnosed with leukemia at age 40 when he was 16 years old. Flash forward 20 years to mid-January, and he noticed a small lump on his chest, around his nipple, after a workout. After about two weeks, although it didn't cause him any pain, it had grown noticeably bigger. His previous doctor in Arizona, where he used to live, referred him to a radiologist.
After an ultrasound and mammogram, his radiologist said it looked like a cyst and warned against worrying about it. After Gomes, a pharmacist, explained it had grown over two months, the doctor said to give it six to nine months.
Gomes' pharmaceutical experience had him poring over medical research beyond your average Google search. But it was people's anecdotes that really spoke to him. Every story sounded the same.
"They found a lump. The doctor told them not to worry, male breast cancer is rare, or they didn't even think about male breast cancer, and they didn't get it checked, because they weren't worried about it," he says. But then they ended up with either late-stage cancer, or it spread.
He saw a breast specialist who biopsied the lump, which revealed he had invasive ductal carcinoma, where cancer cells develop in the ducts.
He had a mastectomy done as well as some lymph nodes removed. The recovery process involves tubes coming out of your chest and drains to empty throughout the day. He vented about this with his new friend Salo. Like Salo, he also did not need radiation nor chemotherapy but started taking tamoxifen.
Salo and another male breast cancer patient helped him decide to take the drug after some hesitation. "We were already that small percentage to get it," he says. "Let's not roll the dice again."
Next up for Gomes is breast reconstruction in the coming months. For now, an eerie pain lingers. "There's almost like the ghost pain or tingling or just feels very, very off. It's weird. That's the main side effect that I've noticed from the surgery."
He plans to get tattoos to honor his experience on his chest: the Hulk, who suddenly becomes strong when adversity or anger comes up; and the other a quote from his favorite book "American Gods" by Neil Gaiman: "He was no longer scared of what tomorrow might bring because yesterday has brought it."
'I could have sweat dripping off my nose'
Paul Kirby, 72, taught instrumental music in Paterson, New Jersey, for more than 26 years and was an avid trombone player. A tremor took away his ability to play trombone, so now he's learning electric bass and plays the bass drum with the New Jersey Wind Symphony.
Doctors discovered his breast cancer two years ago by accident. He had open-heart surgery to replace a faulty aortic valve, and his cardiologist gave him a medication with a known side effect: breast enlargement. His left breast started growing and felt tender. He got a mammogram and a biopsy on his right side on the advice of his surgeon.
It turned out to be a small tumor; they performed a mastectomy and removed three lymph nodes.
In addition to the trombone, he enjoys working on cars and fixing things – a hands-on kind of man. His attitude toward cancer was similar: How do we fix this?
He too, started taking tamoxifen, though was concerned after his wife's aunt and a friend of the couple's experienced strokes, a potential side effect. Not to mention he had a family history of the same.
The drug prompts fatigue and hot flashes.
"I could be sitting here talking to you as fine as I am right now," he says. "And in two more minutes, I could have sweat dripping off my nose, dripping off my ear lobes. And once that goes away, I might descend into this cold. I call them cold snaps from supersoaker hot flashes to cold snaps, where it's not the kind of cold where you feel like you want to shiver, if you've been outside in the freezing weather."
To this day, his reflection startles him. Like a tidal wave out of nowhere.
"You get up in the morning and you go into the bathroom and you're reaching for the deodorant in the medicine cabinet that mirrors there and you see a piece of you gone. That can be just disturbing just a little bit. But when you realize that saved your life, it's great."
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'My body responded well to the treatment'
Garry Davis, 58, likes working in the yard and planting trees and flowers.
On Dec. 23 of last year, his wife touched his chest and felt something Davis himself hadn't noticed. He quickly saw the doctor the next day, Christmas Eve. She thought it was breast cancer.
A biopsy revealed that not only was it breast cancer, but it metastasized to his bones. He began chemotherapy in late February or early March, and did so for about six months. Now he takes oral medications and receives occasional injections.
"My body responded well to the treatment and they decided that it was probably best if I come off of chemo for right now because of the long-term effects that chemo would have on my body," he says.
He considers himself blessed. A friend of his had cancer start in his bones, and was in excruciating pain. Davis hasn't experienced much pain at all.
His wife and two children were devastated after learning his cancer metastasized. But their devastation turned into proactivity.
Davis' wife guided him by researching better diet and exercise habits and by reaching out to other people going through cancer treatment.
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'I couldn't even look at my daughter in the face'
Arnaldo Silva, 71, was first diagnosed with breast cancer about 10 years ago. He felt a lump on his right breast while taking a shower. He thought it was just an ingrown hair or pimple, so he let it go for awhile. It grew larger, so he went to his primary doctor. Nothing to worry about – or so he thought.
It kept getting larger. His daughter suggested he get a second opinion.
It was already stage three; he had his breast and 90% of his lymph nodes removed on the right side. Chemo and radiation followed, as well as genetic testing.
He tested positive for the BRCA2 gene, meaning he could have passed it onto his children.
"Male breast cancer is more common in families, particularly with the BRCA2 mutation," Schott says. "Any male who knows that that's part of his history should be aware that breast cancer has a higher incidence in his case or anyone with a family history of male breast cancer."
It's good he got tested: His daughter, 33 at the time, found out she already had cancer. She's since beaten it four times.
Silva and his daughter took on chemo together. He couldn't even look at her – and struggles to tell this story without crying.
"I couldn't even look at my daughter in the face," he says. "I was so depressed and guilty that I passed this on to her." His son tested positive for the gene but fortunately didn't have cancer. He gets tested periodically.
A year later, Silva's cancer returned on his left side and doctors removed his other breast. He still faces stigma when he takes off his shirt – even in medical settings.
Silva has been in remission for nine years and recommends everyone get tested as soon as they find a lump.
"It's not a death sentence," he says. "If you catch it in time, you'll be all right."
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Signs of male breast cancer: What to watch out for
Get tested. If someone in your family has breast cancer, consider genetic testing. According to Schott, directed screening may not be worth it for male breast cancer given how rare it is.
Stay healthy. Being older and overweight or obese puts you at greater risk for breast cancer, as does liver disease.
Check your pecs. It's an easy enough saying to remember – but likely easier said than done for men, given societal norms. "Women are conditioned to check their breasts regularly for any changes, men are conditioned to check their testicles regularly for any changes. I would say for men, just add check your pecs to the regimen," Salo says.
Don't think it can't be you. "There's a lot of rare things out there that happen to people. And you very well could be that small percentage," Gomes says. "And if you are, you better be on the forefront of it. Because by catching it early, I only had to have surgery and then take this oral medication versus radiation, chemotherapy, more surgeries, etc., that could have made it a lot worse."
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This article originally appeared on USA TODAY: Breast cancer in men: Males raise awareness; here are the signs