Helping Ourselves, Helping Others: The Young Women's Breast Cancer Study
This is a longitudinal cohort study of young women with breast cancer. Over a 6-year
period, the investigators aim to identify over 1,600 women age 40 and younger with newly
diagnosed breast cancer from academic and community health care institutions. It is
anticipated that 1,300 of these women will agree to participate in an observational study.
Patient surveys, medical record review, and blood and tissue collection will be utilized.
Women will be surveyed every 6 months for the first 3 years after diagnosis, then yearly
thereafter for an additional 7 years (for a total follow-up of 10 year following diagnosis).
The study will investigate short and long-term disease and treatment issues, and
psychosocial concerns at baseline and in follow-up among a cohort of young women (age 40 or
younger) newly diagnosed with breast cancer. The investigators aim to characterize the
population of young women at diagnosis and in follow-up regarding disease and psychosocial
outcomes (e.g., presentation and disease characteristics, treatment patterns and quality of
care, short and long-term side effects, and psychosocial concerns including fertility,
sexual functioning, and menopausal issues). The investigators will also collect tumor and
blood specimens to characterize the tumors, and bank for future studies including molecular
evaluations of disease characteristics, genetic variability and hormonal levels in blood.
Ultimately, the investigators aim to develop predictors of outcome, and identify areas that
may be amenable to intervention.
Observational Model: Cohort, Time Perspective: Prospective
Identify a cohort of young women (age 40 or younger) newly diagnosed with breast cancer
Characterize the population of young women at diagnosis and in follow-up regarding disease and psychosocial outcomes (e.g., presentation and disease characteristics including evaluating women with metastatic disease, reported frequency and factors associated with genetic testing, treatment patterns and quality of care, short and long-term side effects, and psychosocial concerns including fertility, sexual functioning, and menopausal issues).
Lidia Schapira, MD
Massachusetts General Hospital
United States: Institutional Review Board
|University of Colorado Cancer Center||Denver, Colorado 80262|
|Cape Cod Hospital||Hyannis, Massachusetts 02601|
|Dana-Farber Cancer Institute||Boston, Massachusetts 02115|
|Massachusetts General Hospital||Boston, Massachusetts 02114-2617|
|Lowell General Hospital||Lowell, Massachusetts 01854|
|Newton-Wellesley Hospital||Newton, Massachusetts 02462|
|Beth-Israel Deaconess Medical Center||Boston, Massachusetts|