Lessons in survival: breast cancer changes everything. Here's what it taught three young women

Shape, Oct, 2004 by Mary Ellen Strote

It was a Friday evening in Newtown, Pa., and Dina Melendez, mother of then-2-year-old Nicole, was getting ready for a night out when she felt a lump in her breast. Her gynecologist suggested waiting to see if the lump dissipated before doing a mammogram, but Melendez immediately scheduled one on her own. Soon afterward she was diagnosed with cancer and underwent a mastectomy, chemotherapy and breast reconstruction. Her doctors told her to put on hold any plans for having another baby. Melendez was 28.

Public-relations executive Jeannine Salamone of Alexandria, Va., was staying at a hotel in Cleveland when she discovered her breast cancer while doing a self-exam in the shower. After testing positive for a genetic mutation that increased her risk of recurrence, she had a lumpectomy--and seven months later chose a double mastectomy and reconstructive surgery, accepting that she'd be unable to breast-feed if she and her husband decided to become parents. Salamone was 30.

Angie Alexander, a 26-weeks-pregnant mortgage-loan consultant in Indianapolis, was watching television in bed when her husband saw the lump, which she hadn't noticed because her breasts were so enlarged from pregnancy. Soon diagnosed with breast cancer, Alexander had a lumpectomy, then delivered her baby at 34 weeks so she could begin chemotherapy, which sent her into early menopause. Then she received a pink slip from her employer for not returning to work soon enough from maternity leave. Alexander was also 30.

Each of these women emerged successfully from treatment. But each was typical of a young survivor of breast cancer in that the familiar terrain of her former life became unrecognizable, her expectations for her future replaced with a new sense of vulnerability. "You no longer live in a bubble, thinking that because you're young nothing can happen to you," says Salamone, now a co-chair of the Young Survival Coalition (YSC), a nonprofit organization dedicated to raising awareness about young women (those 40 and under) and breast cancer, and one of the women profiled in Shape's October 2003 Health column on young women with the disease. "Life never goes back to the way it was," she says. "You don't think about things the same way you did before. You develop a new 'normal.'"

The 'why me?' factor

Approximately 11,000 women under the age of 40 will be diagnosed with breast cancer this year, says the YSC. And the younger a woman is, the more obstacles to diagnosis and recovery she's likely to encounter: Doctors may dismiss her symptoms because she's too young to fit the breast-cancer "profile." Mammography is less effective because youthful breast tissue is dense and therefore more difficult for radiologists to read. Treatment undercuts her burgeoning work, family and social life. Her cancer is more likely to be aggressive, and the therapies she undergoes often can result in sexual dysfunction and loss of fertility.

Even the end of treatment provides little relief. Researchers at the University of California, Los Angeles (UCLA), have found that among younger breast-cancer survivors, those between 25 and 34 are more likely than older women to experience persistent psychological distress and loss of energy. "Their excess fatigue is probably a combination of the drugs used in treatment and feelings of sadness or depression from having cancer at such a young age," says Patricia Ganz, M.D., director of the division of cancer prevention and control research at UCLA's Jonsson Comprehensive Cancer Center and author of the study.

Or, as Beth Leibson-Hawkins writes in I'm Too Young to Have Breast Cancer!, published this month by LifeLine Press: "The 'why me?' factor is far greater at 25 than at 50." But a more useful question than "Why me?" is "How do I cope?" Here's what got Melendez, Salamone and Alexander through the hard times--and what they want you to know about facing a health crisis, or any challenge in your life, for that matter.

Getting the best care

"Healing is harder without supportive doctors," Melendez says. Her breast surgeon immediately earned her patient's trust by sending her for a second opinion. "She wanted to be sure I was satisfied," Melendez explains. "She wanted me to be well-informed. And my doctor hugged me at every visit. During treatment you see your care-givers daily, and when they really love you, it's an awesome experience."

Ganz agrees a good relationship with doctors is crucial for the younger breast-cancer patient. "Simply being told by your physician that the fatigue and mental distress are common can be reassuring," she says. "And, of course, there are things we can do for such post-treatment symptoms as night sweats or pain during intercourse. If a young woman sees that her doctor is not understanding, she needs to find someone who is."

Knowing where to go for support

For young women with breast cancer, it's often difficult to find other women confronting similar issues. "They had a breast-cancer group in my area," says Melendez, "but the youngest member was 45. I was still working on having a family; everyone else had teenagers."