"I'm not the stereotypical face of breast cancer," Elissa Thorner says. "I'm young, I'm energetic, and a lot of my friends still go to bars at night. The cancer scene wasn't the scene I thought I'd be getting into." With her bright blue-green eyes, glossy crop of reddish-blond hair, and marathon and yoga-toned body, Thorner looks like she has never had to spend a day in the hospital -- except for the day that she delivered her daughter, Samantha, now 8. But Thorner has been a regular at breast cancer support groups near Baltimore, where she was "the youngest one literally by 40 years," she says. This month, exactly one year after her radiation treatment for estrogen-receptor-positive breast cancer ended, she turned 25.
Though the median age for women diagnosed with breast cancer is 65, more than 240,000 women in the United States age 40 and under are living with breast cancer. Each year in this country, more than 14,000 women 40 years old and younger are diagnosed with breast cancer, says Boston oncologist Ann Partridge, MD, of the Dana-Farber Cancer Institute. Women who get breast cancer in their 20s and 30s face a whole set of medical, emotional, sexual, and career issues that older women with the disease usually don't have to tackle, she says.
Your career is just taking off in your 20s, or you're making your mark in your 30s, when all of a sudden you have to slam on the brakes and go through treatment -- often about as time-consuming as a full-time job and much more physically draining. Or maybe, like Thorner was at 23, you're adding a grueling lineup of radiation-therapy sessions to a schedule already filled with working, writing your master's dissertation, raising a 7-year-old on your own, volunteering at her school one day a week, heading up PTA meetings, training for a marathon, and dating.
"Young women are less likely to be insured than their older counterparts and are more likely to be single," says Alex Exley, director of information resources at the Young Survival Coalition (YSC), a nonprofit, New York City-based organization devoted to young women with breast cancer. If you're in your 20s and 30s and have breast cancer, you often don't have the solid, decades-old network of friends and family nearby that older women have built up over time, either. You're also more likely to be a new mom or hoping to be one soon. "It's such a difficult time for a young mother," oncologist Partridge says. "You're dealing with a new baby and all the emotions and uncertainty around that, then you add in a diagnosis of a potentially life-threatening disease and the treatments associated with that. You're dealing not only with, 'How will I get through this,' but, 'Will I be able to get through this and see my baby grow up?'"
Only 5 percent of women with breast cancer are under the age of 40 -- a statistic that translates to yet another challenge for young women, according to Exley. "Because breast cancer is rare in young women, it can be very isolating," she says. While women in their 50s and older usually know at least one other person their age with breast cancer, many young women know no one else in their shoes. "In support groups, they often hear older women worrying about seeing their grandchildren grow up, while they are wondering if they'll ever find a partner or be able to have children," Exley says. That was the case for Thorner, who wants to be able to have another child so much that she chose not to have chemotherapy or take tamoxifen. Though she was only 23 at the time, her doctors couldn't say with certainty whether or not those treatments would cause permanent menopause, making her infertile. "The problem of fertility was such a big issue for me, and when I brought it up (in her support group) no one wanted to talk about it," Thorner says.
The YSC was created for just that reason. Partridge advises young women with breast cancer to share their "unique and extraordinary needs" with partners, with members of their medical team, and in online communities, such as the one run by the YSC site at www.youngsurvival.org. Living Beyond Breast Cancer at www.lbbc.org is another online community Partridge frequently recommends to patients. "Communicate as much as possible," she urges. "Look for support, whether it's psychosocial, financial, emotional, nursing services, or from friends, and don't be afraid to take it."
Tracie Metzger was a 30-year-old mother of a 2-year-old and an 8-month-old when she was diagnosed with estrogen-receptor-negative breast cancer. She and her husband, Ray (a doctor in the Cincinnati hospital where Metzger was treated), had always wanted a big family. Just six months after chemotherapy, a double mastectomy, breast reconstruction, and chemotherapy-induced menopause ended, Metzger was shocked to find out she was pregnant. Her first feeling was elation. It was followed by stomach-churning panic and fear.
"Am I even allowed to be pregnant?" she remembers thinking. "I wasn't sure what the oncologist would say. Is he going to let me keep this?" Whether or not they should have a baby after breast cancer is a pressing question for many young survivors. According to Andrew Seidman, MD, attending physician at Memorial Sloan-Kettering Cancer Center in New York City, simply becoming pregnant after a diagnosis of breast cancer does not increase the risk of recurrence.
"The studies show that if anything, people who go on to have a pregnancy tend to do better than people who don't," Partridge adds. But she points out that the research could reflect a "healthy mother bias." It could be that mostly self-selected, healthy women decide to have babies after breast cancer, influencing the research outcomes accordingly. Still, there's no clear evidence of harm from pregnancy, she says.
If you've recently delivered a baby and are undergoing chemotherapy for breast cancer, do not breastfeed; your breast milk could have chemotherapy in it, Partridge says. If it's a choice between chemotherapy and breastfeeding, go with chemotherapy, she advises.
"Most women in that situation have high enough risks that the benefits of chemotherapy are high." Many go on to have babies after chemotherapy, and though chemotherapy decreases the number of eggs a woman has, it does not affect the health of the remaining eggs, she says.
How long you should wait before trying to become pregnant depends on the type of breast cancer you were diagnosed with and the treatment you received. Many premenopausal women take tamoxifen for five years to reduce the risk of recurrence of estrogen-receptor-positive breast cancer, and they should not attempt to get pregnant while on the drug, Seidman says. Another reason most physicians encourage women to wait at least five years after diagnosis before trying to get pregnant is that most recurrences happen within the first five years after diagnosis.
If you had chemotherapy for a hormone-receptor-negative tumor, wait two to three years to get through the greatest risk of recurrence before becoming pregnant, Partridge says. "Ultimately, however, it's up to the woman," she says. "There's no black-and-white answer. Each individual has a different situation."
Because Metzger's breast cancer was estrogen-receptor negative and because she and her husband really wanted another child, her oncologist said it would be okay if she carried her baby to term. Though he couldn't say for sure whether all the chemotherapy was out of her system, he thought that after six months it should be. Aside from extra ultrasounds and extra obstetrician visits, Metzger's pregnancy was normal. She named her healthy baby girl Hope.
"She's obviously a very special little girl, with special meaning," says Metzger, who founded www.pinkribbongirls.org to help other young women with breast cancer connect with one another. Two days after Christmas in 2003, she delivered her fourth child, a boy named Jack. "I think God gave me a couple of little thank yous for enduring all that I did with breast cancer," she says.
Taking care of a baby or a young child can be extremely challenging and tiring on its own. Do it while undergoing chemotherapy or enduring the mood swings that come with early menopause, and the demands of motherhood can be overwhelming. "So many times I sit on the floor and cry while doing dishes," says Thorner, who has had to leave the supermarket or a field trip with her daughter's class early because she couldn't physically make it to the end.
Moms battling breast cancer should be sure to ask for help, whether it's driving to school or putting dinner on the table. Know that it's okay if the house isn't as tidy as it was last year, or if you have to watch a movie with your child for your together time instead of playing soccer.
For Thorner and Metzger, breast cancer has been a valuable lesson in helping them slow down. They have learned to love the mundane moments of motherhood, such as packing school lunches and doing laundry, and are listening to their own needs a little more. "I don't have to graduate No. 1 -- I can graduate No. 3," Thorner says. "I don't have to go to every school function of my daughter's, and it really doesn't matter if my house is spotless. It's important to take care of myself."
"Young kids bring normalcy back to your life," says Metzger, who got up at night with sick kids during treatment. "You don't stop being a mom."