Helping ourselves, helping others: the Young Women's Breast Cancer Study (YWS) - a multisite prospective cohort study to advance the understanding of breast cancer diagnosed in women aged 40 years and younger.

TitleHelping ourselves, helping others: the Young Women's Breast Cancer Study (YWS) - a multisite prospective cohort study to advance the understanding of breast cancer diagnosed in women aged 40 years and younger.
Publication TypeJournal Article
Year of Publication2024
AuthorsRosenberg SM, Zheng Y, Ruddy K, Poorvu PD, Snow C, Kirkner GJ, Meyer ME, Tamimi RM, Schapira L, Peppercorn J, Come S, Borges VF, Warner E, Gelber S, Collins L, Winer EP, Partridge AH
JournalBMJ Open
Volume14
Issue6
Paginatione081157
Date Published2024 Jul 01
ISSN2044-6055
KeywordsAdult, Breast Neoplasms, Female, Fertility Preservation, Humans, North America, Patient Reported Outcome Measures, Pregnancy, Prospective Studies, Quality of Life, Stress Disorders, Post-Traumatic, Young Adult
Abstract

PURPOSE: Compared with older women diagnosed with breast cancer, younger women are more likely to die of breast cancer and more likely to suffer psychosocially in both the short-term and long term. The Young Women's Breast Cancer Study (YWS) is a multisite prospective cohort study established to address gaps in our knowledge about this vulnerable and understudied population.

PARTICIPANTS: The YWS enrolled 1302 women newly diagnosed with stages 0-IV breast cancer at age 40 years or younger at 13 academic and community sites in North America between 2006 and 2016. Longitudinal patient-reported outcome data are complemented by clinical data abstraction and biospecimen collection at multiple timepoints.

FINDINGS TO DATE: Key findings related to fertility include that nearly 40% of participants were interested in pregnancy following diagnosis; of those who reported interest, 10% pursued fertility preservation. Overall, approximately 10% of YWS participants became pregnant in the first 5 years after diagnosis; follow-up is ongoing for pregnancies after 5 years. Studies focused on psychosocial outcomes have characterised quality of life, post-traumatic stress and fear of recurrence, with findings detailing the factors associated with the substantial psychosocial burden many young women face during and following active treatment. Multiple studies have leveraged YWS biospecimens, including whole-exome sequencing of tumour analyses that revealed that select somatic alterations occur at different frequencies in young (age≤35) versus older women with luminal A breast cancer, and a study that explored clonal hematopoiesis of indeterminate potential found it to be rare in young survivors.

FUTURE PLANS: With a median follow-up of approximately 10 years, the cohort is just maturing for many relevant long-term outcomes and provides outstanding opportunities to further study and build collaborations to address gaps in our knowledge, with the ultimate objective to improve care and outcomes for young women with breast cancer.

TRIAL REGISTRATION NUMBER: NCT01468246.

DOI10.1136/bmjopen-2023-081157
Alternate JournalBMJ Open
PubMed ID38951008
PubMed Central IDPMC11218027
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