WASHINGTON (The Boston Globe) -- Michael Samuelson could hardly believe it when he learned that the man who did his taxes had breast cancer. So, as Samuelson walked from his accountant's office, he instinctively felt his own breast. A lump behind his left nipple felt unusually hard. Despite the initial doubts of doctors, Samuelson learned that he, too, had breast cancer - and it nearly killed him.

"Guys don't like to think we have breasts," the 54-year-old Samuelson said three years after having a radical mastectomy that saved his life. "We have "pecs.' "

The 8-inch scar that runs diagonally along Samuelson's left pectoral area is, in some ways, a metaphor for a fault line in American medicine. The death rate for women with breast cancer has been dropping dramatically for the last 20 years due to one of the most successful health-awareness campaigns in history. But the death rate for men is essentially unchanged during that time and may have climbed slightly, due to lack of education and, some say, a massive misconception that the disease only afflicts women.

Now, just as a group of female breast cancer advocates banded together to help publicize the disease among women 20 years ago, a disparate group of male survivors, including Samuelson, actor Richard Roundtree, and a retired physician, are simultaneously working together to put what one calls "a touch of blue" in the pink ribbon given to those who have beaten the disease. A stream of anecdotal information - not backed up yet by any scientific study - has led these survivors to believe that male breast cancer often goes undiagnosed and is more common than generally believed. So, Samuelson and the other survivors are hoping to change the way the world views breast cancer by talking publicly about a disease that most men have preferred to keep secret.

But any effort to re-educate Americans about breast cancer is bound to be daunting. Anyone reading the widely distributed American Medical Association's "Family Medical Guide" or many similar health books would find no clue that breast cancer strikes men. (The AMA said in response to a question that there was no room to mention that the disease affects men but said it might revise the next edition.) The government recommends mammograms only for women and often conducts breast cancer studies only on women.

All of this leaves thousands of men who have breast cancer - which kills at least 400 men per year, compared to 40,000 women - in a sort of medical black hole. When Samuelson was given tamoxifen for treatment, no doctor could tell him whether it affected men differently from women.

Yet, in treating male breast cancer as a sort of asterisk, some wonder whether the government and pharmaceutical companies are missing an extraordinary research opportunity that may not only reveal whether there is a unique cause of male breast cancer, but also might provide vital clues to curing breast cancer in women. Samuelson was found to have a very advanced form of breast cancer that usually results in premature death, yet he today is in excellent health, having recovered enough to climb mountains and run marathons.

Dr. Sandra M. Swain, a specialist in breast cancer at the National Cancer Institute who is one of the few who has studied male breast cancer, said one intriguing study found that 85 percent of male breast cancer patients have "estrogen receptors" in their tumors, a slightly higher rate than among women. Women have much more estrogen than men, and breast cancer tumors with these "estrogen receptors" grow in part because they are stimulated by estrogen in the individual. "No one really knows why" this rate of estrogen receptors occurs in men who have breast cancer, Swain said, but it is the sort of tantalizing clue that has drawn increasing attention from scientists.

Dr. Eric Winer, a specialist at the Dana Farber Cancer Institute, said: "In general, the risk factors for female breast cancer other than heredity are all things that relate to hormones, going through puberty early, going through menopause late, taking hormone replacement therapy, not having children. But in men none of that is relevant."

Again, it is the "black hole" problem: There are not enough men with breast cancer to do a large clinical study, so the men with breast cancer must deal with an aspect of the disease that remains largely a mystery.

For many men, the idea of having an exam for breast cancer is embarrassing - even emasculating.

Actor Richard Roundtree, who epitomized macho in the movie "Shaft," knew nothing about male breast cancer when he felt a lump the size of a pencil eraser in his left breast. When his doctor told him he had breast cancer, he said, "I felt he was questioning my manhood."

After surgery left him with no left pectoral, he feared the stigma of having breast cancer would end his career. So he kept his disease secret for seven years. In 1999, when he was in Alaska filming a scene for a television show, the director told him take off his shirt for a fight scene. Roundtree, whose disease was still a secret at that point, protested that it was too cold. Finally, the following year, Roundtree announced his disease and has tried to publicize it but he said results have been mixed.

"I can't tell you how frustrating it has been," Roundtree said. "There is very little documentation about men. I try to get (advocacy groups) to add this to their promotional literature and they are always saying, "We're working on it.' "

Indeed, it was 20 years ago that the Susan G. Komen Breast Cancer Foundation was organized to promote awareness and treatment of breast cancer because the disease received relatively little public discussion at the time. The educational effort has paid off: The reporting of female breast cancer has soared while the death rate has dropped from 33.1 per 100,000 women in 1990 to 27 deaths per 100,000 women in 1999. At the same time, however, federal reports show the male death rate has remained steady at .3 per 100,000 men.

Now, at a time when advocates for male breast cancer patients are starting to seek more publicity, Komen officials said they are going beyond the information posted on their Web site and hope to publish more information for men.

"We are more and more beginning to include that message in our educational materials," said Susan Brown, a registered nurse who works with the foundation. She and other specialists said breast cancer among men may be more common than publicly reported because many men either don't know they have the disease or don't reveal it.

"Not only don't men have any idea they can get breast cancer, but if they have the suspicion, they repress that anyway," said Mark Goldstein, 69, who calls himself a 15-year "conqueror" of breast cancer and runs regularly in fund-raising races alongside many women. "Men do not socialize diseases very well. One of our defective genes is the macho gene, and we very often fail to acknowledge that we can be a candidate for a disease, let alone a "woman's disease.' "

The diagnosis is often a shock even to the best-informed patients. Dr. Don Cameron, 72, said he found the lump because of another symptom - his breast had swelled in a condition called gynecomastia, which is much more common than breast cancer. It was only upon examining his swelled breast that he found a lump that turned out to be breast cancer.

"My message is that men can get it and they can tell their doctor about it; they can examine their own breast, particularly around the nipple," Cameron said. In addition to a tiny lump in the breast, other early signs of breast cancer include a bloody discharge from the nipple or an inverted nipple. The Komen Foundation stated that the biggest risk factors for men are a family history of breast cancer, either among women or men, chest exposure to radiation, and several rare genetic conditions.

If any man should have been aware of the danger of male breast cancer, it was Samuelson. In 1977, he founded the National Center for Health Promotion, a health management company that focuses on disease prevention through the promotion of nutrition, exercise, smoking cessation and other measures. But if his encounter with his accountant hadn't prompted him to do a self-exam, he said, "I probably wouldn't be talking to you."

Copyright 2002 The Boston Globe. All rights reserved.