It all starts as a lump.
Perhaps it’ll go away. Perhaps it will not.
You have cancer – breast cancer.
You’re still a man.
Breast cancer can form underneath your skin and spread. It did for Matt Gomes and Garry Davis, as well as Sean Salo and Arnaldo Silva.
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. There will be approximately 2,300 new cases each year and 500 deaths. Comparatively to that, approximately 255,000 breast cancer cases will occur in any one year for women and 42,000 of them 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. This is a rare way to detect 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.
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“A little mystery”
Sean Salo experienced a lump under his right arm in April. The New York resident was used to little abrasions or swollen tissue under the skin. This was different. It was hard and rigid, roughly the same size as a peanut shell.
One ultrasound and mammogram later, and his radiologist didn’t mince words: “This, to me, looks like breast cancer.”
In May, a biopsy confirmed this suspicion.
He opted to have a bilateral mastectomy to take out his stage 2 cancer and was later prescribed estrogen blocker tamoxifen. His cancer had not spread to his lymph nodes so he was eligible in a genetic test known as Oncotype DX.
It was determined that breast cancer is unlikely to recur after the test. Salo could continue to take tamoxifen after the surgery and not have 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 survived breast cancer. 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.
The Male Breast Cancer Coalition offered support. It is based in the U.S., but has international members. Matt Gomes (a fellow patient), was also connected to him. Matt went through similar surgery just a few days earlier.
“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 stop rolling 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.
The radiologist examined the area and determined that it appeared to be a cyst. He advised against worrying. 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. He was drawn to the stories of others. Each story was unique.
They found a lump. He said that the doctor advised them to not worry because male breast cancer is uncommon. Then they were diagnosed with advanced-stage cancer or the spread of it.
He saw a breast specialist who biopsied the lump, which revealed he had invasive ductal carcinoma, where cancer cells develop in the ducts.
His mastectomy and removal of lymph nodes was also performed. Recovery involves drains that go to the bottom of your stomach and tubes going out from your chest. Salo was his friend and he vented all of this to him. 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. He says, “We had already reached that tiny percentage of people to receive it.” Let’s not again roll the dice.
Gomes’ next task is to perform breast reconstruction within the coming months. For now, an eerie pain lingers. The ghost-like sensation or tingling, or feeling very strange is what it feels like. It’s strange. This is the most noticeable side effect I have noticed since 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.”
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“I could have sucked my sweat off my nose,”
Paul Kirby (72), was an instrumental music teacher in Paterson, New Jersey for over 26 years. He also enjoyed trombone playing. 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.
His breast cancer was discovered by mistake two years ago. 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.
The tumor was small and they did a mastectomy. They also took out three lymph nodes.
In addition to the trombone, he enjoys working on cars and fixing things – a hands-on kind of man. The way he viewed cancer was the same:
He also started to take Tamoxifen. But he was worried about side effects because his aunt and friend who suffered strokes were both on the same medication. He also had a history of similar symptoms in his family.
The drug prompts fatigue and hot flashes.
He adds, “I can be sitting there talking to you as well as right now.” In two minutes I might have my sweaty nose and earlobes. Once that is gone, it’s possible I will descend into the 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.”
Even today, his reflection continues to amaze him. As a torrential flood from nowhere.
When you get up each morning you look for deodorant. It can be quite distressing. When you realise that this saved your life it is great.”
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“My body responded well”
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. The next day was Christmas Eve, and he quickly went to the doctor. He thought it was breast carcinoma.
The biopsy showed that it was breast cancer and had spread to his bones. He started chemotherapy at the end of February, or in March. It lasted for six months. He now takes both oral medication and has occasional injections.
His body was responsive to treatment well and doctors decided it would be best for me to get off chemo now due to long-term effects.
He considers himself blessed. His friend had bone cancer and suffered excruciating pain. Davis has not felt any pain.
After learning that his cancer had spread, his wife and their two young children were heartbroken. However, their grief was turned into action.
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 look at my daughter in her face”
Arnaldo, age 71, was the first person to be diagnosed with breast carcinoma. As he was taking a shower, he noticed a lump at his right breast. 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. He was suggested by his daughter to get another opinion.
He was in stage 3 already. His breasts and 95% of his lymph nodes were removed from the right side. The treatment included chemotherapy and radiation, along with genetic testing.
His test for BRCA2 was positive, which could mean he may have passed the gene on to his children.
“Male breast cancer is more common in families, particularly with the BRCA2 mutation,” Schott says. Anyone with a history of breast cancer should know that it is more common in men who have had the disease.
It was a good thing he had it tested. At 33, his daughter found out that her mother already had breast 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 look at my daughter face-to-face,” he said. “I felt so guilty and depressed that I gave this to my daughter.” He was extremely happy to have escaped cancer after his son was tested positive. 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 is currently in remission and has recommended that everyone be tested immediately they discover a lump.
He said, “It’s no death sentence.” You’ll be fine if you get it caught in time.
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Here are some signs of breast cancer in men: Things to look out for
Have your testConsider genetic testing. Consider genetic testing if you have a family member with breast cancer. According to Schott, directed screening may not be worth it for male breast cancer given how rare it is.
Keep healthy. Being older and overweight or obese puts you at greater risk for breast cancer, as does liver disease.
Make sure you 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.
It can happen, so don’t let it stop you. There are many rare events that can happen to us. Gomes states that it is possible to be part of this small number. It is possible to be in the frontline of cancer if you’re one of them. It was much easier to catch it earlier than it would have been if I had radiation or chemotherapy.
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