When Nicole Taylor was diagnosed with breast cancer in 2004 she felt isolated from other parents, who would stare at her bald head and missing eyebrows.
“I just couldn’t connect with other moms,” the 34-year-old Seattle mother of two says. “I think they were scared and thought ‘If it can happen to her it can happen to me.’”
Taylor also felt she did not fit in with the mostly older women with breast cancer who didn’t have to grapple with changing diapers while nauseous from chemotherapy or putting their daughter’s hair in a ponytail with hands numb and tingling due to neuropathy.
Less than 10 percent of the breast cancer cases in the United States reported in 2009 were women younger than 45, according to the American Cancer Society.
Dr. Julie Gralow, the director of Breast Medical Oncology at the Seattle Cancer Care Alliance, says women in this age group face unique issues including early menopause, effects on fertility, concerns about body image and financial instability. These problems can make it difficult for them to relate to women their age who haven’t been through cancer treatment or much older survivors of breast cancer.
Taylor eventually found support through the Young Survival Coalition (YSC), an international organization that connects young women with breast cancer to each other and offers age-appropriate resources.
Through the organization, she was able to chat online with other survivors her age and meet with local support groups.
“I finally had a home,” Taylor says. “I knew if I had an off day or an off week I had a place to go where I belonged.”
Mikala (second from left) with four fellow breast cancer survivors. Each of these women was diagnosed before age 25.
Even in remission, young breast cancer survivors can struggle to relate to those around them, Gralow says. Mikala Edwards of Phoenix, Ariz., was diagnosed with breast cancer at just 25 years old. While she is now cancer free, Edwards continues to recover physically and emotionally.
She says that during treatment she went into survival mode.
“All you focus on is the next doctor’s appointment and the next treatment and all of the sudden you’re done and everyone expects you to go back into normal life but nothing is the same. You’re not the same.”
Edwards says she doesn’t feel like other 20-something women.
“I’m not a normal 26 year old,” she says. “I have to get sleep. To me, fun isn’t going out and partying. Life is a lot more complicated.”
Since cancer, every aspect of Edwards’ life has changed, including dating.
“How do you go out to a bar when you’re bald?” Edwards asks. “How do I date a man and be like ‘By the way, I have no nipples’?”
Edwards talks about these, and other concerns with a group of five women she met through YSC. They text each other daily about everything from physical challenges to breast implants.
“They’re in the same place of life as me,” Edwards says. “I don’t think I would be in such a good place if I didn’t have them.”
Breast cancer can also weigh heavily on young relationships, Gralow says.
Rebecca Seago-Coyle of Seattle was diagnosed with breast cancer at age 34, just five years into her marriage.
“It has created a lot of friction in my marriage because we’re young and cancer has interrupted our lives,” Seago-Coyle says.
Coyle and her husband were in the midst of deciding whether they should try to have kids when she was diagnosed. Now, she believes she is post-menopausal.
“We didn’t expect this,” she says. “The door was closing and instead it was slammed shut.”
Many young women with breast cancer also struggle with body image concerns.
Coyle remembers the disappointment she felt when a plastic surgeon showed her pictures of breast reconstruction on a woman in her 60s.
“I still want to look good naked,” Coyle says.
Taylor says about half of the conversations she’s had with other survivors at YSC are about breast reconstruction.
“Your breasts are a part of who you are as a woman and for some that’s hard to come to grips with,” Taylor says.
While topics like this may seem taboo, Gralow says these are the kinds of issues only young breast cancer survivors can relate to.
Young women facing breast cancer can get support for their disease and their age group at the Annual Conference for Young Women Affected by Breast Cancer from Feb. 22 to 24 in Bellevue.