22-012710 - Breastfeeding and Breast Cancer Screening Among Carriers of Pathogenic Variants in BRCA 1 and BRCA 2 and Other High Penetrance Genes: Knowledge and Perspectives
Childbearing and nursing may impact approaches to breast cancer screening and prevention; however, little is known about whether women at increased risk of breast cancer receive information about this topic.
Researchers at the Mayo Clinic and McGill University are partnering with the nonprofit organization Facing Our Risk of Cancer Empowered (FORCE) on a survey of women who have inherited mutations in BRCA1, BRCA2 or other genes (including PALB2, ATM, CHEK2, and others) related to increased breast cancer risk. Although we invite all eligible women to participate in this study, we are particularly interested in understanding the needs of women who tested positive for an inherited mutation prior to becoming pregnant and how they made decisions about timing of pregnancy, breastfeeding, breast cancer screening, and risk-reducing surgery. Decisions related to these issues are complex, and for some topics, there has not been enough research for experts to make recommendations or provide evidence-based guidelines for women. For this reason, we want to learn about women's needs for information about how breastfeeding affects cancer risk and options related to breast cancer screening at reproductive ages.
If you agree to participate, you will be asked to complete this survey. No personal identifiable information will be recorded. You do not have to answer any questions you do not want to answer; just leave it blank and move on to the next question. The survey will take about 15 minutes of your time.
There are no known risks to you from taking part in this research study. This study will not make your health better. It is for the benefit of research.
Please understand your participation is voluntary, and you have the right to refuse participation at any time without penalty. Thank you for taking the time to complete this confidential survey. We will use survey responses to help identify gaps in knowledge, develop resources and design future research studies to improve safety and quality of life during reproductive years. Further, your responses will help establish the need for developing new methods for breast cancer screening that are safe, effective, and can be performed while women are pregnant or nursing.
If you have any questions about this research study, you can contact a member of our study team at FLAQHSCS@mayo.edu. If you have any concerns, complaints, or general questions about your rights as a participant, please contact the Mayo Clinic Institutional Review Board (IRB) to speak to someone independent of the research team at (507) 266-4000 or toll free at (866) 273-4681.