Oct. 7, 2009 — -- Taylor Thompson was planning to spend her summer vacation by the pool with friends. Instead, she spent a month becoming very familiar with her hospital in Little Rock, Ark.
It started with a casual mention to her mother that she felt a quarter-sized lump in her right breast. Doctors diagnosed her with breast cancer. She was 13 years old.
"I couldn't tell her, I was just crying," said her mother, Stephanie Anderson, when she learned of Taylor's diagnosis. "I thought, 'How am I going to explain this to my 13-year-old daughter about breast cancer?' When I tried to talk to her, it just would not come out."
The lump Thompson found in her breast was a type of fast-growing, potentially malignant tumor generally found in premenopausal women, not in girls Thompson's age.
In fact, oncologists said finding cancerous breast cells in girls as young as Thompson is akin to being struck by lightning.
And while breast cancer is overwhelming at any age, women who get the disease in their twenties, their teens or younger face a host of unique issues that complicate an already devastating diagnosis.
"They face issues all breast cancer patients face -- dealing with a potentially life-threatening illness, mortality, toxic treatments, breast surgery," said Dr. Ann Partridge, director of the Young Women and Breast Cancer program at the Dana-Farber Cancer Institute in Boston, Mass. "But a person who is young deals with those at an age when they have their own [problems] so these are accentuated."
Breast cancer is the leading cause of cancer deaths among women ages 15-54, according to the National Cancer Institute, but breast cancer in young women -- under age 40 -- is very rare.
The chances of a woman getting breast cancer in her thirties is one in 250. In her twenties it is one in 2,000. The chances decrease the younger a woman is, Partridge said.
"I was kind of scared [of cancer], but not at the time," Thompson said. "I was thinking more about my family than myself... I was just telling myself it was going to be OK."
The prospect of surgery scared Thompson less than whether doctors would be able to remove all of the cancerous tissue during her lumpectomy.
"It's rare that we see invasive breast cancer... in someone so young," said Dr. Ronda Henry-Tillman, a breast oncologist who treated Thompson at the Rockefeller Cancer Institute at the University of Arkansas for Medical Sciences. "This case makes us know that we can't exclude it in younger patients."
Practical Problems Abound for Young Breast Cancer Patients
In May, Elizabeth Bryndza, a 19-year-old sophomore at the College of New Jersey, underwent a bilateral mastectomy to remove both breasts. Two weeks before, she had found a lump of cancerous cells in her right breast.
"I never thought that I wouldn't survive it," said Bryndza, now 20. "I'm still going to be me, and I'll fight as hard as I can."
But there are practical problems that make younger women more vulnerable than older women to the challenges of a breast cancer diagnosis.
Young women are more likely to be treated aggressively for breast cancer than older women because, since they've rarely had regular screenings or mammograms, they are less likely to detect early-stage tumors. Young age is an independent risk factor for recurrent cancer, regardless of a family history of cancer, or a genetic predisposition to have BRCA gene mutations.
And since doctors see so few young women with breast cancer, there is a gap in research about fertility, early-onset menopause and other effects of diagnosis, treatment and outcomes in young women.
Chemotherapy may affect a young woman in many ways, including her ability to have children in the future. But for teenagers, concerns such as body image, sexuality, beauty and peers loom larger.
"At that time, as a teen, you think you're invincible," Bryndza said. "I sort of saw the whole thing as a big inconvenience."
But as Bryndza began chemotherapy following her surgery, her cancer became more than an inconvenience. And while she had the unfailing support of family and friends, Bryndza could not forget how singular her situation was.
"Sometimes I felt so lonely," Bryndza said. "My friends were there for me but they couldn't fully understand what I was going through. Nor could a woman who is double my age who went through breast cancer."
Younger women have two striking disadvantages when it comes to breast cancer diagnosis because of their age.
"If they haven't generally been as tested in life, there is a theory that [younger patients] could be less resilient, if this is their first major challenge," Partridge said. "And they do have more difficulty adjusting to the diagnosis at the time of diagnosis and during follow up."
The Emotional Toll of Breast Cancer
Younger women are more likely to be affected to the point of depression if they feel overwhelmed by the disease. In addition, unlike older breast cancer patients, they generally lack a strong peer support system
"I think when you're older you expect it more... it's not something that's atypical for your peer group," said Bryndza's doctor, Dr. Dawn Hershman, co-director of the breast cancer program at the Herbert Irving Comprehensive Cancer Center, Columbia University Medical Center. "When you're young you feel like you're the only one. Everybody wants to help but no one knows what it's like."
But younger women may not want empathy, craving normality instead. Often, the greatest source of anxiety for a young woman with breast cancer is not the disease -- it's whether their peers will treat them differently. Both Thompson and Bryndza said they felt the most anxious about heading back to school.
"Because she was so young, she did not know exactly what [her condition] was, and that helped her deal with it," Anderson said. "But she was worried about her peers -- if they were going to talk about her as if she had a [contagious] disease... She didn't want a lot of young people to know. I guess because she didn't understand herself what was going on, they might not understand either."
And the intensity of the cancer experience can be too much for some. Bryndza had a boyfriend when she was diagnosed with breast cancer and said he was supportive, but eventually, the stress took a toll on their relationship.
"It was hard because I was such a wreck, emotionally, sometimes," Bryndza said. "I needed to focus on myself and my health and it was hard to be in a relationship when I had to worry about myself."
Anderson said that the only time Thompson became overwhelmed with stress was because her surgery prevented her from participating in summer activities with her friends.
"I wanted to have fun," Thompson said. "But now I feel good."
Feeling Normal Again
Thompson did not need chemotherapy, but her tumor was such that she has a 98 percent chance of recurrence, including the possibility of cancer spreading to her lungs. Although she is recovering well at the moment, Anderson said her daughter is still a little paranoid.
"She's always checking herself," Anderson said.
Bryndza went back to school this fall, taking three classes to be a full-time student, although facing her peers in a wig and chest expanders in preparation for reconstructive surgery in a month was daunting.
"The anxiety was greater than doing it," Bryndza said. "But I wanted to go back to school, take classes and feel normal.
And focusing on beating her breast cancer and getting through difficult chemotherapy overshadowed some of the more superficial aspects of the disease.
"I think everything happened so fast at the beginning that I never had time to think, 'Oh my god, I'm going to have fake breasts!'" Bryndza said. "I just think that I beat cancer and now I get to have nice boobs. I look at it like that, or I won't be able to deal emotionally."