About 11% of all breast cancers in the United States are diagnosed in women younger than the age of 45. Young women with breast cancer (YWBC) may experience unique physical and psychosocial problems. Meeting the needs of these young women is often dependent on a patient’s oncology team. There is a lack of data about the experiences of YWBC in our region including whether their needs are met and which resources are available and offered to them.
To explore the unique physical and psychosocial needs of YWBC in our region (Hamilton and Niagara) and to describe what information YWBC receive, and which decisions are made, regarding: fertility, breast reconstruction, mastectomy, sexuality and emotional support.
This study includes women 40 years of age or less who were diagnosed with invasive breast cancer within 12 months. Using a qualitative design, participants attended a 1 hour focus group or a 30 minute interview moderated by the research coordinator, JR. Recordings were transcribed verbatim, with anonymization of any identifying information. Fourteen participants (ages 30 to 40) were included. Co-PI (PR) and JR reviewed the transcripts, complied recurring categories, and discrepancies were resolved via consensus.
Most participants underwent a timely work-up and diagnosis (64%) but some experienced a delay in diagnosis (37%) as they were seen as unlikely to have cancer due to age. A majority of the participants felt they were provided enough information for informed decisions about treatment. However, over one third of the women were not provided any information about social or community supports and a similar proportion also felt that fertility and sexuality issues were not adequately addressed. Over one third planned on having bilateral mastectomy and/or immediate reconstruction, regardless of physician recommendation. The most distressing aspects of the cancer experience included: telling children and parents about the diagnosis; waiting for test results; fear of recurrence; and re-starting life after breast cancer.
Recurring Themes From YWBCRecurring ThemesFG1FG2FG3INT1INT2INT3INT4Initial DiagnosisTimely Diagnosis•• •• • • •••Delay in Diagnosis• •• • • Poorly Communicated• •• • TreatmentUndergoing B/L mastectomy•••• • Undergoing reconstruction•• •• • CommunicationWell informed about Rx plan• • •• • •• •• Not well-informed about Rx plan • ••••Well informed about fertility • Not well-informed about fertility ••• •Needs met re: sexuality • Needs unmet re: sexuality• • •Info provided re: supports• • • •••• Info not provided re: supports • • • • •Supports UtilizedSocial Worker • ••• Community Services• • •••••• None • • • • • FG=Focus Group; INT=Interview
YWBC feel that they are provided with adequate medical information for treatment decision-making. However there is a gap in supports for psychosocial, fertility, and sexuality-related needs. Interventions targeted to address these unmet needs should be evaluated. In the second phase of this study, we will create an instrument to further assess the needs of young women with breast cancer in our region.
Citation Format: Punam Rana, Jonathan Sussman, Jenna Ratcliffe, Margaret Forbes, Mark Levine, Nicole Hodgson. Young women with breast cancer: Needs and experiences [abstract]. In: Proceedings of the Thirty-Seventh Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2014 Dec 9-13; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2015;75(9 Suppl):Abstract nr P1-11-10.