October 25, 2006

Survived Breast Cancer and Speaking Out

First they told him it was nothing. Then they told him he was probably going to die. It's been 18 years since Cameron Alden learned he had breast cancer. In recent years, the Suffolk County Legislator from Islip has shared his story of surviving the deadly disease, and the odyssey of frustration and shame he embarked on back in 1986.

"It was misdiagnosed for two years," Alden recalled. An athlete, the then 38-year-old thought he'd simply suffered a particularly hard hit in a game when he first noticed a lump in his breast. When he finally sought treatment, doctors at first also dismissed it as an injury. But as months went by and the lump didn't go away, eventually closer inspection was warranted. Alden was brought in to a room full of doctors and lawyers one day and told he had breast cancer. He underwent a mastectomy and hasn't seen a re-occurrence.

In recent years, Alden's been called upon to share his experiences as a survivor of a cancer that, while rare and striking fewer than 2000 men each year, has a higher death rate than prostate and testicular cancers combined. He was recently among the panelists at a breast cancer symposium hosted by Adelphi University and has visited civic and youth groups to promote awareness. He's been both a sounding board and shoulder for other men stricken with the disease. "We're lucky to have men like Cameron," Susie Roden of the South Fork Breast Health Coalition effused. She extolled the survivor's courage, and willingness to candidly speak about an illness that still carries the additional burden of social stigma.

Alden wasn't always eager to speak about male breast cancer. "For 10 years I couldn't even talk about it," he admitted. "It's only since I got elected that I decided I had to speak out."

According to the Men's Health Network, a nonprofit educational organization, 27% of men diagnosed with breast cancer this year will die from the disease, compared to 19% of women for whom the cancer will be terminal. Social stigma, embarrassment and just plain ignorance often prevent early diagnosis and treatment.

That male patients are in later stages when they finally receive treatment is a fatal irony, considering the cancer is actually easier to detect in men. They have less breast tissue, so changes or tumors are more readily felt and seen. But, like Alden, many men don't think that the lump could be breast cancer. Isn't that supposed to be a women's-only disease? "For me, the stigma was, it was a woman's disease caused by women's hormones," Alden said.

For those men who are diagnosed, treatment is psychologically harrowing. Imagine sitting in a waiting room filled with women in a breast care center, scheduling mammographies, and undergoing treatment most people associate with female patients. "We have them come in and you can just tell they're uncomfortable," Rosen said. Something as simple as undressing for an exam requires a special set-up, as men wait until women patients have left.

It wasn't long ago when women patients were reluctant to discuss their battles with breast cancer. "Now, women are proud to be survivors, but when I was diagnosed, I tried to keep it a secret," Roden recalled. "A man feels today the way we used to feel ten or 15 years ago."

Education will go a long way toward assuaging the stigma. Roden noted that often, when she travels to health fairs, people are surprised to see a pamphlet she distributes about male breast cancer. "They don't know men can get it, too."

Alden feels government has failed to do all it can to promote education. "The burden for getting the word out has been on the coalitions and not-for-profit groups, and that's completely wrong," he said. As a lawmaker, Alden's been a supporter of such awareness campaigns as the annual event lighting the Dennison tower in Hauppauge in pink each October.

But there's much more that needs to be done, for both women and men in terms of education. A fighter against his own illness and more than a little scrappy on the legislative horseshoe, Alden expects to devote more time lobbying for better county breast health and education programs.

Reflecting on a "death sentence" almost 20 years past, overcoming the odds, and his recent inadvertent advocacy role, he mused, "I don't know. Maybe this is my calling. Maybe this is why God left me here."

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