Carie Capossela, here with her two children, was diagnosed with breast cancer in 2001 at age 33.
By and large, breast cancer is not thought of as a young woman’s disease. After all, 95 percent of women with breast cancer are over age 40.
But every year, 10,000 women age 40 and younger in the U.S. alone learn that breast cancer can and does affect women their age, and it brings with it an additional layer of challenges.
“We know from research and clinical experience that younger women have a harder time with a breast cancer diagnosis than older women,” says Ann Partridge, MD, director of Dana-Farber’s Program for Young Women with Breast Cancer and clinical director of the Breast Oncology Program.
“They have parenting and work responsibilities that are not easily handled by someone else. They may be trying to start a family or trying to date. All of those things are hard enough without a breast cancer diagnosis thrown on top of it. Most young people don’t have to deal with a life-threatening illness.”
Carie Capossela did. In 2001, Capossela was diagnosed with breast cancer at age 33, when she was busy caring for two toddlers.
“I felt very disconnected from the other women in the waiting room who were at a different stage of life and obviously facing very different issues,” she says. “My biggest fear was that my children would grow up without a mother.”
Beyond the psychological and emotional issues that accompany a breast cancer diagnosis, the nature and treatment of the disease itself can also be different for younger women.
Unlike post-menopausal women, they may be concerned with preserving fertility, which can affect treatment choices. Young women aren’t routinely screened for breast cancer unless they have a family history of the disease, so they are often diagnosed at a later stage.
The disease also tends to be more complex in young patients, and the risk of a recurrence of cancer is heightened. As a result, “young women tend to be treated more aggressively,” says Dr. Partridge.
To provide more specialized care and research, Dana-Farber’s Program for Young Women with Breast Cancer was established in 2005.
“We help organize resources such as fertility services, genetic screening, and psychological counseling for young women to address their unique concerns. We want to be certain there are no missing pieces in care,” says Eric Winer, MD, director of the Breast Oncology Center in Dana-Farber’s Women’s Cancers Program.
Working with the Lance Armstrong Foundation Adult Survivorship Program at Dana-Farber, Dr. Partridge has also developed an evening series for young survivors, featuring speakers such as Geralyn Lucas, author of Why I Wore Lipstick to My Mastectomy.
“Young women definitely feel more comfortable here and appreciate the extra services,” says Dr. Partridge. One of the services offered is the opportunity to meet fellow patients through in-person and telephone support groups.
“It was critically important for me to connect with other young women who were going through the experience,” says Capossela. “That’s what pulled me through.”
Capossela and her husband, Rob Adler, were instrumental in establishing the program for young women.
“Like many Dana-Farber patients, I wanted to give back,” Capossela says. “As soon as Dr. Winer told me that they were planning the program, I knew I wanted to be actively involved in creating it. I want every young woman to have the exceptional care I had.”
Today, Capossela continues to contribute as a member of the program’s steering committee.
A year after the program for young women started, Drs. Partridge and Winer launched “Helping Ourselves, Helping Others: The Young Women’s Breast Cancer Study,” a multicenter study to investigate both the biology of breast cancer and the experiences of young women who have the disease.
It is the largest and most comprehensive prospective cohort study focused on young women with breast cancer.
A “cohort” study follows a group of participants over a number of years. Participants answer periodic surveys about their health and quality of life and allow researchers to review their medical records and study their tumor specimens.
While recent research has uncovered some of the genetic underpinnings of breast cancer, scientists still know little about how the disease differs between women young and old.
Even if a younger and older patient have genetically identical breast tumors, other factors – such as hormonal factors, immune system health, or metabolic rate – could influence how the disease behaves, and, in some cases, how it is treated.
“We don’t know if age still plays a role if you have the same exact type of cancer in a 60-year-old and a 35-year-old,” says Dr. Winer. “If you control for biology, does age still matter in terms of prognosis and appropriate treatment?”
One critical area under study is the time it takes for younger women to be diagnosed with breast cancer.
“Delay in diagnosis plagues young women,” says Dr. Winer. “Sometimes they don’t realize they might have cancer, and they put off seeing a doctor. In other cases, their providers may reassure them that it couldn’t be cancer because of their age.”
Working with Dana-Farber’s Kathryn Ruddy, MD, MPH, Dr. Partridge is studying the differences in time frame of diagnosis. Based on data from the first 222 women who enrolled in the cohort study, researchers found that about 80 percent of the women detected a breast abnormality themselves and were promptly diagnosed.
However, nearly 25 percent of the women delayed seeking medical attention for more than 30 days. Similarly, after seeking medical attention, 25 percent of the women experienced a delay in diagnosis of more than 30 days.
Drs. Ruddy and Partridge presented the preliminary findings at the annual meeting of the American Society of Clinical Oncology (ASCO) in May 2009. The researchers have subsequently compared the data to delays found among older women. The results will be published in a journal article later this year.
Drs. Partridge and Ruddy are also using cohort resources to examine how the body uses, or metabolizes, the drug tamoxifen in 160 pre-menopausal breast cancer patients.
Tamoxifen is the most common therapy for women whose breast cancer is fueled by the hormone estrogen. By blocking estrogen receptors on cancer cells, tamoxifen prevents the hormone from stimulating tumor growth.
The effectiveness of this therapy appears to depend on how well a woman metabolizes tamoxifen, which patients often take for several years following treatment, in an effort to prevent recurrence of the cancer.
However, tamoxifen occasionally doesn’t have much effect on younger women’s tumors.
“We are trying to figure out if this is due to inadequate hormonal therapy or if it is related to a difference in the cancer,” says Dr. Partridge.
The goal of the study is to determine whether the data might identify a subset of young women who might benefit from an alternative hormonal therapy that would be more effective and decrease the risk of recurrence.
As researchers continue to gather data and results from studies involving younger women, they hope to maintain a steady stream of new discoveries that will help uncover new details and answers to questions that often go unaddressed in younger patients with cancer.
Through the process, clinicians and researchers are optimistic that this work may help develop more effective, personalized care, guiding more young women through the challenges of diagnosis, treatment, and longterm survivorship.
