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  1. Meera Joseph, MD(c), BESc, BSc*,
  2. Faiza Rab, MBBS, MHSc, MSc*,
  3. Karen Panabaker, MSc, CGC, CCGC and
  4. Jeff Nisker, MD, PhD, FRCSC, FCAHS*
  1. *Department of Obstetrics and Gynaecology, Schulich School of Medicine & Dentistry, The University of Western Ontario; and
  2. Cancer Genetics Program, London Health Sciences Centre, London, Ontario, Canada.
  1. Address correspondence and reprint requests to Jeff Nisker, MD, PhD, FRCSC, FCAHS, London Health Sciences Centre, Victoria Hospital, Room E2-620E, 800 Commissioners Rd East, London, ON N6A 5W9, Canada. E-mail: jeff.nisker{at}lhsc.on.ca.

Abstract

Objective Family physicians in Canada as reported in several studies do not recognize the importance of family history in relation to breast/ovarian cancer and thus Canadian women with strong family histories continue to develop early-onset breast cancer without the knowledge of or ability to make choices regarding increased surveillance or preventative strategies. This study explored the feelings of women who learned about their hereditary risk only after their diagnosis younger than 52 years and who eventually tested positive for a BRCA gene mutation.

Methods Thirty-four such women were mailed an invitation to participate in this research including a letter of information, consent form, and discussion prompts for their written narrative response. Rigorous mixed method analyses were performed using Charmaz-based qualitative analyses as well as quantitative analyses.

Results Thirteen women (38.2%) responded with narratives for qualitative analysis from which 4 themes were coconstructed as follows: I, types of emotions; II, emotional response; III, coping with emotions; and IV, advice to women at similar risk. Women felt they should have learned about their hereditary risk from their family physician and through public education before their diagnosis. Although not experienced at the time of diagnosis, anger, frustration, and regret were experienced after receiving their BRCA results. These emotions arose from our research participants’ lack of opportunity for prior genetic counseling and testing opportunity for genetic counseling and testing.

Conclusions With increased public and physician education, it is hoped that women with significant family histories of breast/ovarian cancer will be identified before diagnosis and given options regarding cancer surveillance and risk reduction strategies.

  • Premenopausal breast cancer
  • BRCA1/2 genes
  • Emotions
  • Feelings

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Footnotes

  • The authors declare no conflicts of interest.

  • This study was funded by Genome Canada and the Ontario Genomics Institute.

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