Lessons in survival
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 caregivers 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."
Tremendous support can come from family and friends, of course. Salamone's family lives all over the United States, so they took turns staying with her and her husband. When she lost her hair to chemotherapy and her scalp was sensitive, her twin sister came with lotion and massaged her head. Because Alexander needed to deliver her baby early so she could start chemotherapy, her friends immediately gave a baby shower ("Fifty people showed up!" she marvels) and painted the nursery.
"It's hard for some people to admit they need help or to watch people do things for them," says Salamone, "but you should let people in, let them help."
Having a sense of humor
Being able to poke fun at yourself is crucial to good mental health at any time, but it's especially necessary during the rigors of breast-cancer therapy. "I think a sense of humor really helps women cope with the disease," Ganz says. "It helps not to take everything too seriously."
During her treatment, Melendez found comfort in joking with her co-workers at the shop where she groomed dogs. "It wasn't a pity party," she says. "They called me Star Trek-meets-Baywatch because I was bald and had a C-cup breast where my reconstruction [implant] was overinflated."
Alexander used to rub her bald head on her 6-month-old baby's belly. "He'd laugh and laugh," she says. "I think it's great to have photos of me and my son both with bald heads. Not too many moms can say the same thing."
"Humor is so important when you're dealing with cancer," agrees Salamone, who put her wig on her niece and nephews as well as each of her friends and then took pictures of them. "You have to be able to giggle and have a good time."Keeping the faith
For many women dealing with breast cancer, discovering a positive meaning in the experience helps them maintain a better quality of life. In her study, Ganz learned that the young survivors who found the most meaning from having breast cancer were African-Americans.
Melendez was one of those who found a reason of sorts for why she got cancer: "We're all given a wake-up call, and breast cancer was mine," she says. "I was on a destructive path. Not that I was drinking or doing drugs, but I wasn't living for every day, I wasn't appreciating when the sun comes up." Today she keeps a "grateful journal," in which she records such things as waking up to a beautiful day or listening to her daughter sing in the shower.
Altruism is very common among young breast-cancer survivors -- and a very positive response, according to Ganz. "Many volunteer their time for breast-cancer causes, and on a personal level try to help other women experiencing the disease," she says.
As soon as she finished her own chemotherapy, Alexander joined ChemoAngels, a worldwide volunteer organization that offers support to people going through chemo, radiation or other cancer therapies. "They match you with someone in treatment, and you send e-mail, notes, cards or gifts," Alexander says. "Mine is a 6-year-old boy in New Mexico. Being a ChemoAngel has helped tremendously with my own recovery."
Salamone volunteered at Young Survival Coalition right away. "They needed my skills," she says, "and I wanted to make a difference." She notes that women who are still in treatment may not be drawn to volunteering because they have enough going on in their lives. "Having cancer is a full-time job," she says. "But once they move past treatment, many women find fulfillment in getting involved."
Melendez believes that making a difference for someone else is her therapy for recovery. "Doctors ask me to talk to newly diagnosed patients," she says. She also spends time talking up awareness: "If I can get just one woman to have a mammogram, it's enough."
Deciding what's important
For younger women, having breast cancer is often a transforming experience, Ganz says. Many redirect their energies, some change the way they interact with the world, and almost all decide to stop sweating the small stuff.
These days, Alexander devotes herself to her 15-month-old son, Ean. "I never thought I'd be a stay-at-home mom," she says. "Before, I thought about how successful I would be, how much I could earn; but now if I go back to work, it will be part-time. Work just isn't as important to me."
Melendez, diagnosed nine years ago, says having breast cancer has ended her days of being a doormat. She still feels the need to say yes to too many obligations, but now can say no. "I have become more of an individual," she says. "Breast cancer has been my springboard." She's run a charity race, modeled in a fashion show to raise funds for her hospital and flown to Florida to be interviewed on TV about breast cancer. And breast cancer is the reason she's also a stay-at-home mother. In 2001, when Melendez gave birth to her second child, a son, she decided to quit work, raise her children and "do the best I can to help others undergoing the same journey."
Like many survivors, Salamone says she doesn't regret the experience. "Yes, it was rough," she says. "I wouldn't wish it on anyone else. But now I know what's important in life -- and it's not the small stuff."