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Breast cancer victim a forgotten man

The 57-year-old says he experienced denial, embarrassment, loneliness and depression after he was diagnosed. Now he wants to speak out.

By LANE DeGREGORY
Published October 20, 2005

[Times photo: Scott Keeler]

Allen C. “Scotty” Scott of Clearwater gets frustrated because groups that focus on breast cancer issues don’t mention the men who have the disease. He was diagnosed in 2003.

CLEARWATER - He hates pink ribbons. You know, the symbol of breast cancer awareness.

This month, Allen C. "Scotty" Scott has been bombarded by pink ribbons: TV newscasters pinning them on their lapels; models sporting them in magazines; giant pink ribbons looming from billboards.

He's tired of reading stories about the march for the cure. He's sick of the sisterhood of support.

He's sympathetic to these women, he says. He understands what they're suffering. But the whole national campaign to raise awareness about breast cancer makes him mad.

"I'm a forgotten person," Scott says from the living room of his Clearwater townhouse. "I have a disease that's really common. But when people talk about it, I'm not ever considered."

At first he couldn't discuss it. Now, he's too scared to stay silent.

That's why he decided to share his story - even though it's kind of embarrassing.

Scott is 57. He's married and has a 10-year-old son. He's tall and big-bellied and has turquoise eyes.

His long, graying hair is pulled into a ponytail.

Scott is proud of his hair. Everyone said he would lose it to the chemo.

He grew up in Boston, cheering the Celtics, playing basketball on his school team. One afternoon in the locker room, his teammates started teasing him about his chest. His left breast was much bigger than the right.

"Man boobie," they called it.

"I was 12. I was humiliated," Scott says. "Boys aren't supposed to have breasts."

He made his mom take him to the doctor.

"Gynecomastia," the doctor called it: a disclike growth under the nipple. It's caused by changes in hormone balance and is common among adolescent boys. "Don't worry," the doctor said. "It will go away."

Scott moved to Florida in 1964. He joined the Air Force, served in Germany during the Vietnam War. Still, the lump was there.

By the time he came back to Pinellas County and started working in pest control and got married, he didn't mind the lump so much. It seemed it had always been part of him.

In March 2003, Scott's wife noticed a pimplelike spot above his left nipple. "It was at about the 10 o'clock position, under my areola." It didn't hurt, so Scott didn't think much about it.

A couple of days later, his wife noticed the pimple had moved. Now it was at the 2 o'clock position. Okay, Scott admitted, that was weird.

Scott's doctor made an appointment for him to see a surgeon at Morton Plant Hospital.

"I wasn't worried that morning. I knew they were going to put me under to do the biopsy, so my wife drove me to the hospital and waited," Scott says. Just after noon, an orderly wheeled him into the operating room. The next thing he remembers is waking up with the surgeon shaking his big toe. The clock said 5, but it was dark outside: 5 a.m. He had been sedated for almost 17 hours.

"What's going on?" he cried.

He couldn't sit up. He felt like someone had sliced him open with a machete. He craned his head to look down at his chest and saw a foot-long incision snaking from his breast bone to beneath his arm pit.

His left breast was gone.

"We've taken out a growth in your chest," the doctor told him. "We had to do a mastectomy. You have breast cancer."

Hurting and confused, Scott struggled to understand. Breast cancer? Men don't get breast cancer.

"Oh yes they do," the doctor said.

For a long time, Scott was in denial. He thought of the ordeal like having a splinter removed: Get it out and you're done.

Then the surgeon sent him to an oncologist who hammered home the truth. Cancer kills. It can come back. Scott would need months of chemotherapy, and still there was no guarantee.

"That's when I realized I'd have to tell people what was going on," Scott says. "It wasn't over with. I couldn't just pretend nothing had happened."

But what would people say? Most men won't even admit they have breasts. How could he explain this to his friends?

He needed numbers. Surely he wasn't the first man to face this. On the Internet he found reams of information about breast cancer - more than he ever wanted to know. But there were few mentions of male breast cancer.

He learned that more than 1,000 men are diagnosed with the disease every year and more than 450 die. And he discovered that gynecomastia, though harmless in initial stages, sometimes can be a warning sign for male breast cancer.

Age and obesity are other factors, because elderly and overweight men often have elevated levels of estrogen. And if women in the family have suffered from breast cancer, men are at a greater risk. Scott lost a female cousin to breast cancer a decade ago.

Lots of people know women who have had breast cancer, but few have ever heard of it in men. When Scott finally told his best friend he had it, his friend looked at him as if he was joking and asked, "Are you sure?"

"My male friends didn't want to talk about it, so other than discussing it with my wife, I pretty much bottled up my emotions," Scott says. "Sometimes, when I was alone, it became overwhelming." He pauses a moment, looks at the ceiling. He closes his eyes and tears eke out the corners. "I guess, sometimes, it's still overwhelming.

"You just feel so alone. Like no one understands."

Scott went to a therapist twice, trying to deal with his depression. The counselor suggested he join a breast cancer support group.

"Are there any men in the group?" Scott wanted to know.

He called around, but couldn't find a single group that had a male member. He didn't think he could relate to all the women, or that they'd understand his isolation and embarrassment. And he didn't want to intrude on their circle of sisterhood.

He logged on to some Internet chat rooms and read some blogs. But he never found another man going through the same ordeal.

"It would've been so much easier if I'd had lung cancer or pancreatic cancer. Those are definitely more socially acceptable," Scott says. "I'm an aberration that no one wants to know about."

From the time women are teenagers, they're taught to inspect their breasts. Mothers, sisters, doctors show them how to search for suspicious lumps. When they turn 40, many women start scheduling regular mammograms, to be sure.

But no one tells men to check their breasts. Often by the time a man acknowledges a growth in his chest, the cancer has spread to other parts of his body.

"Men aren't aware that breast cancer is a precursor to other types of cancer. It's not right that no one lets us know. You don't hear about it on TV or read about it in the paper," Scott says. "So when I see these women, marching for their moms and sisters and friends, I get bitter. They're not marching for me. They're not even sharing the whole story."

Why not?

"The male population is a lot harder for us to approach," says Cheryl Kidd, director of education for the Susan G. Komen Breast Cancer Foundation. "We frequently find men not even admitting they have breasts. They object to that word. So they don't feel like we're talking to them or about them."

Over the last few years, Kidd says, two notable men have come forward to discuss their breast cancer. Richard Roundtree, who played the movie and TV hero Shaft, and former Sen. Edward Brooke of Massachusetts helped raise awareness by discussing their ordeals. But most campaigns about breast cancer still don't target men.

"Male breast cancer is considered a rare disease, and, consequently, it doesn't get the same type of attention as female breast cancer, which affects a much larger segment of the population," says Dr. Len Lichtenfeld, deputy chief medical officer for the American Cancer Society. "Also, male breast cancer just doesn't have the same emotional issues as female breast cancer, which is, perhaps, another reason it doesn't get the same sort of attention."

Lichtenfeld points out that the Cancer Society Web site offers some information.

"But this is just not a common cancer in men," he says. "And one of the realities we face is how we target the focus of our efforts. It's worthy of notice, but not worthy of a strong push like we have to raise awareness about women getting mammographies and doing self-exams."

Still, Scott says, men need to know. After seeing all the pink ribbons again this month, he decided it was time to warn them. If no one else was going to push to raise awareness, he'd have to do it himself.

More than two years have passed since Scott had the mastectomy. It's easier for him to talk about it now. But sometimes he still feels ashamed. When he takes his son to the pool, he won't take off his shirt.

Though doctors often suggest reconstructive surgery for women who have lost a breast, no one has offered Scott that option.

Every month, he still has to visit his oncologist for a checkup. Two months ago, the doctor found cancer in his thyroid. In September, he had that removed too.

"If I hadn't been going in for those screenings, I wouldn't have known about the thyroid cancer," Scott says. "It probably would have spread, unnoticed, and could have killed me."

He knows it sounds ironic, but he believes having breast cancer may have saved his life.

-- Lane DeGregory can be reached at 727 893-8825 or degregory@sptimes.com

- This year, 1,690 men will be diagnosed with breast cancer in the United States (compared with 211,240 women).

- An estimated 460 men will die from breast cancer (compared with 40,410 women).

- One in every 1,000 men has a lifetime risk of getting breast cancer (compared with one in every seven women).

- Breast cancer is increasing in men and women. From 1973 until 1998, there was a 26 percent increase in the number of men diagnosed (compared with a 52 percent increase in women).

- A nurse at the University of Alberta is conducting what she believes is the first North American study on men who have breast cancer. She looked at 125 men, ages 44 to 85, who have the disease and included 20 in her study. At the National Conference for Men's Health in Atlanta this month, she said she found a wide range of reactions among the men: Some felt they couldn't tell anyone, and others became advocates for male breast cancer awareness.

Sources: the American Cancer Society, the Susan G. Komen Breast Cancer Foundation, CBC Health & Science News

[Last modified October 19, 2005, 10:56:02]