"The good news is, the world is a very different place today than it was 6 years ago if you're a young woman with breast cancer."

At age 39, Randi Rosenberg is relishing a role she never thought she'd play: that of new mom.

"I never thought in a million years that a baby was in my future, not just from a personal level, but from a medical level, too," says Rosenberg, a breast cancer survivor.

More than 6 years after her diagnosis, her 3-month-old daughter, Alexandra Marais, is living, cooing, gurgling proof of the old adage, "Never say 'never.'"

It's a lesson Rosenberg has learned more than once, most painfully at the time of her cancer diagnosis.

She was just 32 when she got the terrible news in 1998. But the diagnosis came a full year later than it might have.

The tumor had actually been found the year before, felt during a routine gynecological exam. But because Rosenberg was so young, the doctor wrote it off to the lumpiness typical of young breasts and did not refer her for a mammogram.

"My first thought when she said to me, 'Don't worry, you're too young [for breast cancer],' was, 'Yeah, of course I'm too young,'" Rosenberg recalls. "And I didn't give it another thought, which is what most young women would do. It's just not on our radar screen."

Some months later, during a physical with another doctor, Rosenberg pointed out the lump, which had grown noticeably. Concerned, that doctor sent her for an immediate mammogram. When it came back clear, she recommended a sonogram. Rosenberg, juggling her work as a marketing consultant and an active social life, didn't get around to it for 6 months.

When at last she had the ultrasound, it showed something suspicious. A core biopsy confirmed the diagnosis: stage 2 invasive breast cancer.

"When I was told it was actually breast cancer, I was furious," Rosenberg says. "I felt discriminated against, that because I was a young woman, I was discounted."

She channeled that anger into activism. With other young women who had been through breast cancer, she helped create the Young Survival Coalition (YSC), a non-profit advocacy group dedicated to the specific needs and concerns of young women with this disease. Rosenberg is president, a volunteer position.

"All of the anger and frustration that I felt when I was navigating my own breast cancer journey really lit a fire in me," Rosenberg says. "I believe with every cell of my body that this work needs to get done and that's what keeps me going."

Breast cancer is considered rare in younger women; only about 5% of cases occur in women under 40. Still, more than 215,000 women in the US are expected to get invasive breast cancer in 2004, which means about 11,000 of those cases will occur in women under 40.

The Young Survival Coalition works to increase the amount of research done on breast cancer in younger women, and to provide age-appropriate resources and support for these women during and after treatment.

The organization lobbies researchers and legislators and collaborates with other cancer-fighting groups, including the American Cancer Society. YSC members volunteer with ACS Reach to Recovery programs across the country, and the group has worked with the Manhattan/Bronx office of ACS to develop a book and video for young breast cancer survivors called "You Are Not Alone."

"The good news is, the world is a very different place today than it was 6 years ago if you're a young woman with breast cancer," Rosenberg says. "It required a loud voice saying these are very real issues."

Advocacy wasn't the only outlet Rosenberg found to help cope with her breast cancer diagnosis. During treatment -- surgical removal of the cancerous lump, chemotherapy, 6 weeks of radiation, then the drug tamoxifen -- she enrolled in a clinical trial studying sentinel lymph node biopsy.

"From a very early point in this process I decided I wanted to be involved in research whenever possible," Rosenberg says. "I really believe that in order for the status quo to change, you need to participate in research and only then will people who come behind you find a better world."

One avenue she did not pursue, however, was genetic testing.

This type of testing looks for mutations in the BRCA1 and BRCA2 genes; women with mutations are more likely to develop breast and ovarian cancer than women with normal genes. If a woman knows she carries the mutation, she can take steps to reduce her risk of getting cancer. Some women in this situation choose to be screened more frequently, while others opt to have their breasts and/or ovaries removed as a precaution (prophylactic mastectomy and prophylactic oophorectomy, respectively).

Although Rosenberg had no family history of breast or ovarian cancer, her oncologist suggested she consider genetic counseling and testing because she was so young at diagnosis and of Ashkenazi Jewish heritage. Both of those factors made her more likely to carry a mutation.

Despite that, Rosenberg decided against it.

"I really didn't believe that whether I had a mutation would impact my behavior any differently," she says. "I was already having twice-yearly surveillance with mammograms, sonograms, and MRI [magnetic resonance imaging]. I had already been taking tamoxifen. Prophylactic mastectomy and oophorectomy were not something I was interested in."

Rosenberg knows, though, that her decision wouldn't necessarily be the right one for other women in her situation.

"The most important thing to underscore with genetic counseling and testing is that it's an intimately personal decision," she says. "What someone else does, given the same prognosis and diagnosis, may be totally different."

Editor's Note: Randi Rosenberg and other women discuss their decisions about genetic testing in a Discovery Health Channel program airing October 28 and October 31, 2004.