Advertisement

Journal of Genetic Counseling

, Volume 26, Issue 6, pp 1301–1313 | Cite as

“It was an Emotional Baby”: Previvors’ Family Planning Decision-Making Styles about Hereditary Breast and Ovarian Cancer Risk

  • Marleah Dean
  • Emily A. Rauscher
Original Research

Abstract

Women who test positive for a BRCA genetic mutation are at an increased risk for developing hereditary breast and ovarian cancer and have a 50% chance of passing on their genetic mutation to their children. The purpose of this study was to investigate how women who test positive for a BRCA mutation but have not been diagnosed with cancer make decisions regarding family planning. Analysis of interviews with 20 women revealed they engage in logical and emotional decision-making styles. Although women want to be logical to reduce their hereditary cancer risk, emotions often complicate their decision-making. Women experience fear and worry about a future cancer diagnosis, yet also desire to create a family, particularly having children through natural conception. That is, women negotiate having preventative surgeries in a logical doctor-recommended timeframe but also organize those decisions around emotional desires of motherhood. Overall, this study demonstrates the complex decisions women who test positive for a BRCA mutation must make in regards to genetic testing timing, family planning, and overall quality of life.

Keywords

Hereditary breast and ovarian cancer Decision-making Genetic risk Disease risk Genetic testing Family communication BRCA1, BRCA2 Qualitative research 

Notes

Acknowledgements

We would like to express our gratitude to Facing Our Risk of Cancer Empowered (FORCE) for allowing them to recruit participants. We would also like to thank our participating for being willing to share their family planning experiences with us.

Compliance with Ethical Standards

Conflict of Interest

Authors Marleah Dean, PhD and Emily Rauscher, PhD declare they have no conflict of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.

Animal Studies

This article does not contain any studies with animals performed by any of the authors.

References

  1. Alwan, S., Yee, I. M., Dybalski, M., Guimond, C., Dwosh, E., Greenwood, T. M., et al. (2012). Reproductive decision making after the diagnosis of multiple sclerosis (MS). Multiple Sclerosis Journal, 19(3), 1–8.Google Scholar
  2. Burke, W., Daly, M., Garber, J., Botkin, J., Kahn, M. J. E., Lynch, P., ... & Thomson, E. (1997). Recommendations for follow-up care of individuals with an inherited predisposition to cancer: II. BRCA1 and BRCA2. JAMA, 277(12), 997-1003.Google Scholar
  3. Chan, J. L., Johnson, L. N., Sammel, M. D., DiGiovanni, L., Voong, C., Domchek, S. M., & Gracia, C. R. (2016). Reproductive decision-making in women with BRCA1/2 mutations. Journal of Genetic Counseling, 1–10.Google Scholar
  4. Charles, C., Gafni, A., & Whelan, T. (1999). Decision-making in the physician–patient encounter: revisiting the shared treatment decision-making model. Social Science & Medicine, 49(5), 651–661.CrossRefGoogle Scholar
  5. Chung, K., Donnez, J., Ginsburg, E., & Meirow, D. (2013). Emergency IVF versus ovarian tissue cryopreservation: decision making in fertility preservation for female cancer patients. Fertility and Sterility, 99(6), 1534–1542.CrossRefPubMedGoogle Scholar
  6. Clayman, M. L., Harper, M. M., Quinn, G. P., Reinecke, J., & Shah, S. (2013). Oncofertility resources at NCI-designated comprehensive cancer centers. Journal of the National Comprehensive Cancer Network, 11(12), 1504–1509.CrossRefPubMedPubMedCentralGoogle Scholar
  7. Corbin, J., & Strauss, A. (2007). Basics of qualitative research: techniques and procedures for developing grounded theory (3rd ed.). Thousand Oaks: Sage.Google Scholar
  8. Crockin, S. L. (2005). Legal issues related to parenthood after cancer. Journal of the National Cancer Institute Monographs, 34, 111–113.CrossRefGoogle Scholar
  9. d'Agincourt-Canning, L. (2006). Genetic testing for hereditary breast and ovarian cancer: responsibility and choice. Qualitative Health Research, 16(1), 97–118.CrossRefPubMedGoogle Scholar
  10. de Vries-Kragt, K. (1998). The dilemmas of a carrier of BRCA1 gene mutations. Patient Education and Counseling, 35(1), 75–80.CrossRefPubMedGoogle Scholar
  11. Dean, M. (2016). “It’s not if I get cancer, it’s when I get cancer”: BRCA-positive patients’(un)certain health experiences regarding hereditary breast and ovarian cancer risk. Social Science & Medicine, 163, 21–27.CrossRefGoogle Scholar
  12. Decruyenaere, M., Evers-Kiebooms, G., Boogaerts, A., Cassiman, J. J., Cloostermans, T., Demyttenaere, K., et al. (1996). Prediction of psychological functioning one year after the predictive test for Huntington's disease and impact of the test result on reproductive decision making. Journal of Medical Genetics, 33(9), 737–743.CrossRefPubMedPubMedCentralGoogle Scholar
  13. Dimillo, J., Samson, A., Thériault, A., Lowry, S., Corsini, L., Verma, S., et al. (2013). Living with the BRCA genetic mutation: an uncertain conclusion to an unending process. Psychology, Health & Medicine, 18(2), 125–134.CrossRefGoogle Scholar
  14. Donnelly, L. S., Watson, M., Moynihan, C., Bancroft, E., Evans, D. G. R., Eeles, R., et al. (2013). Reproductive decision-making in young female carriers of a BRCA mutation. Human Reproduction, 28(4), 1006–1012.CrossRefPubMedGoogle Scholar
  15. Downing, C. (2005). Negotiating responsibility: case studies of reproductive decision-making and prenatal genetic testing in families facing Huntington disease. Journal of Genetic Counseling, 14(3), 219–234.CrossRefPubMedGoogle Scholar
  16. Evans D. G., Gaarenstroom K. N, Stirling D, et al. Screening for familial ovarian cancer: Poor survival of BRCA1/2 related cancers. Journal of Medical Genetics 2009; 46(9):593–597.Google Scholar
  17. Fisher, C. L. (2010). Coping with breast cancer across adulthood: emotional support communication in the mother–daughter bond. Journal of Applied Communication Research, 38(4), 386–411.CrossRefGoogle Scholar
  18. Fisher, C. L., Maloney, E., Glogowski, E., Hurley, K., Edgerson, S., Lichtenthal, W. G., et al. (2014). Talking about familial breast cancer risk topics and strategies to enhance mother–daughter interactions. Qualitative Health Research, 24(4), 517–535.CrossRefPubMedGoogle Scholar
  19. Forde, O. H. (1998). Is imposing risk awareness cultural imperialism? Social Science & Medicine, 47(9), 1155–1159.CrossRefGoogle Scholar
  20. Friedman, L. C., & Kramer, R. M. (2005). Reproductive issues for women with BRCA mutations. Journal of the National Cancer Institute Monographs, 34, 83–86.CrossRefGoogle Scholar
  21. Friedman, S., Sutphen, R., & Steligo, K. (2012). Confronting hereditary breast and ovarian cancer: identify your risk, understand your options, change your destiny. New York: John Hopkins University Press.Google Scholar
  22. Geertz, C. (1973). The interpretation of cultures. New York: Basic Books.Google Scholar
  23. Glanz, K., Lewis, F. M., & Rimer, B. K. (2002). Health behavior and health education: theory, research, and practice. San Francisco: Jossey-Bass.Google Scholar
  24. Heritage, J., & Maynard, D. W. (2006). Problems and prospects in the study of physician-patient interaction: 30 years of research. Annual Review of Sociology, 32, 351–374.CrossRefGoogle Scholar
  25. Hesse-Biber, S. (2014). The genetic testing experience of BRCA-positive women: deciding between surveillance and surgery. Qualitative Health Research, 24(6), 773–789.CrossRefPubMedGoogle Scholar
  26. Hesse-Biber, S. N., & Levy, P. (2006). The practice of qualitative research. Thousand Oaks: Sage.Google Scholar
  27. Hoskins, L. M., & Greene, M. H. (2012). Anticipatory loss and early mastectomy for young female BRCA1/2 mutation carriers. Qualitative Health Research, 22(12), 1633.CrossRefPubMedGoogle Scholar
  28. Hoskins, L. M., Roy, K., Peters, J. A., Loud, J. T., & Greene, M. H. (2008). Disclosure of positive BRCA1/2-mutation status in young couples: the journey from uncertainty to bonding through partner support. Families, Systems & Health, 26(3), 296–316.CrossRefGoogle Scholar
  29. Howard, A. F., Balneaves, L. G., & Bottorff, J. L. (2009). Women’s decision making about risk-reducing strategies in the context of hereditary breast and ovarian cancer: a systematic review. Journal of Genetic Counseling, 18(6), 578–597.CrossRefPubMedGoogle Scholar
  30. Howard, A. F., Balneaves, L. G., Bottorff, J. L., & Rodney, P. (2011). Preserving the self: the process of decision making about hereditary breast cancer and ovarian cancer risk reduction. Qualitative Health Research, 21(4), 502–519.CrossRefPubMedGoogle Scholar
  31. Jolie Pitt, A. (2015). Diary of a surgery. The New York Times. Retrieved from http://www.nytimes.com/2015/03/24/opinion/angelina-jolie-pitt-diary-of-a-surgery.html?_r=0.
  32. Klitzman, R., Thorne, D., Williamson, J., Chung, W., & Marder, K. (2007). Decision-making about reproductive choices among individuals at-risk for Huntington's disease. Journal of Genetic Counseling, 16(3), 347–362.CrossRefPubMedGoogle Scholar
  33. Krahn, T. (2009). Preimplantation genetic diagnosis: does age of onset matter (anymore)? Medicine. Health Care and Philosophy, 12(2), 187–202.CrossRefGoogle Scholar
  34. Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Beverly Hills, CA: Sage.Google Scholar
  35. Lindlof, T. R., & Taylor, B. C. (2011). Qualitative communication research methods (3rd ed.). Thousand Oaks, CA: Sage.Google Scholar
  36. Matthews, L. T., Crankshaw, T., Giddy, J., Kaida, A., Smit, J. A., Ware, N. C., & Bangsberg, D. R. (2013). Reproductive decision-making and periconception practices among HIV-positive men and women attending HIV services in Durban, South Africa. AIDS and Behavior, 17(2), 461–470.CrossRefPubMedGoogle Scholar
  37. Mavaddat, N., Peock, S., Frost, D., Ellis, S., Platte, R., Fineberg, E., et al. (2013). Cancer risks for BRCA1 and BRCA2 mutation carriers: results from prospective analysis of EMBRACE. Journal of the National Cancer Institute, 105(11), 812–822.CrossRefPubMedGoogle Scholar
  38. McCullum, M., Bottorff, J. L., Kelly, M., Kieffer, S. A., & Balneaves, L. G. (2007). Time to decide about risk-reducing mastectomy: a case series of BRCA1/2 gene mutation carriers. BMC Women's Health, 7(1), 1.CrossRefGoogle Scholar
  39. Merriam, S. B. (2009). Qualitative research: a guide to design and implementation. San Francisco: Jossey-Bass.Google Scholar
  40. Metcalfe, K., Lynch, H. T., Ghadirian, P., et al. (2004). Contralateral breast cancer in BRCA1 and BRCA2 mutation carriers. Journal of Clinical Oncology, 22(12), 2328–2335.CrossRefPubMedGoogle Scholar
  41. Morgan, M. G., Fischhoff, B., Bostrom, A., & Atman, C. J. (2002). Risk communication: a mental models approach. Cambridge: Cambridge University Press.Google Scholar
  42. Myring, J., Beckett, W., Jassi, R., Roberts, T., Sayers, R., Scotcher, D., & McAllister, M. (2011). Shock, adjust, decide: reproductive decision making in cystic fibrosis (CF) carrier couples—a qualitative study. Journal of Genetic Counseling, 20(4), 404–417.CrossRefPubMedGoogle Scholar
  43. Neville, K. (1998). The relationships among uncertainty, social support, and psychological distress in adolescents recently diagnosed with cancer. Journal of Pediatric Oncology Nursing, 15, 37–46.CrossRefPubMedGoogle Scholar
  44. Noble, R., Bahadur, G., Iqbal, M., & Sanyal, A. (2008). Pandora's box: ethics of PGD for inherited risk of late-onset disorders. Reproductive BioMedicine Online, 17, 55–60.CrossRefPubMedGoogle Scholar
  45. Ormondroyd, E., Donnelly, L., Moynihan, C., Savona, C., Bancroft, E., Evans, D. G., et al. (2012). Attitudes to reproductive genetic testing in women who had a positive BRCA test before having children: a qualitative analysis. European Journal of Human Genetics, 20(1), 4–10.CrossRefPubMedGoogle Scholar
  46. Owen, W. F. (1984). Interpretive themes in relational communication. The Quarterly Journal of Speech, 70, 274–287.CrossRefGoogle Scholar
  47. Pilarski, R. (2009). Risk perception among women at risk for hereditary breast and ovarian cancer. Journal of Genetic Counseling, 18(4), 303–312.CrossRefPubMedGoogle Scholar
  48. Politi, M., & Street Jr., R. L. (2011). Patient-centered communication during collaborative decision-making. In T. L. Thompson, R. Parrott, & J. F. Nussbaum (Eds.), The Routledge handbook of health communication (2nd ed., pp. 399–413). New York: Routledge.Google Scholar
  49. Politi, M. C., Han, P. K., & Col, N. F. (2007). Communicating the uncertainty of harms and benefits of medical interventions. Medical Decision Making, 27, 681–695.CrossRefPubMedGoogle Scholar
  50. Prouix, M., Beaulieu, M. D., Loignon, C., Mayrand, M. H., Maugard, C., Bellavance, N., & Provencher, D. (2009). Experiences and decisions that motivate women at increased risk of breast cancer to participate in an experimental screening program. Journal of Genetic Counseling, 18(2), 160–172.CrossRefGoogle Scholar
  51. Quinn, G. P., Vadaparampil, S. T., Bower, B., Friedman, S., & Keefe, D. L. (2009). Decisions and ethical issues among BRCA carriers and the use of preimplantation genetic diagnosis. Minerva Medica, 100(5), 371–383.PubMedGoogle Scholar
  52. Quinn, G. P., Vadaparampil, S. T., Jacobsen, P. B., Knapp, C., Keefe, D. L., & Bell, G. E. (2010a). Frozen hope: fertility preservation for women with cancer. Journal of Midwifery and Women’s Health, 55(2), 175–180.CrossRefPubMedGoogle Scholar
  53. Quinn, G. P., Vadaparampil, S. T., Tollin, S., Miree, C. A., Murphy, D., Bower, B., & Silva, C. (2010b). BRCA carriers' thoughts on risk management in relation to preimplantation genetic diagnosis and childbearing: when too many choices are just as difficult as none. Fertility and Sterility, 94(6), 2473–2475.CrossRefPubMedGoogle Scholar
  54. Rauscher, E. A., & Durham, W. T. (2015). “As long as You're sure you Don't want any more children”: Men's collective boundary coordination of information about their affirmative vasectomy decision. Communication Studies, 66(2), 186–203.CrossRefGoogle Scholar
  55. Rodney, P., Burgess, M., McPherson, G., & Brown, H. (2004). Our theoretical landscape: a brief history of health care ethics. In J. Storch, P. Rodney, & R. Starzomski (Eds.), Toward a moral horizon: nursing ethics for leadership and practice (pp. 56–97). Toronto: Pearson-Prentice Hall.Google Scholar
  56. Rubin, L. R., Werner-Lin, A., Sagi, M., Cholst, I., Stern, R., Lilienthal, D., & Hurley, K. (2014). ‘the BRCA clock is ticking!’: negotiating medical concerns and reproductive goals in preimplantation genetic diagnosis. Human Fertility, 17(3), 159–164.CrossRefPubMedGoogle Scholar
  57. Schover, L. R. (2009). Patient attitudes toward fertility preservation. Pediatric Blood & Cancer, 53(2), 281–284.CrossRefGoogle Scholar
  58. Smith, K. R., Ellington, L., Chan, A. Y., Croyle, R. T., & Botkin, J. R. (2004). Fertility intentions following testing for a BRCA1 gene mutation. Cancer Epidemiology, Biomarkers and Prevention, 13(5), 733–740.PubMedGoogle Scholar
  59. Staton, A. D., Kurian, A. W., Cobb, K., Mills, M. A., & Ford, J. M. (2008). Cancer risk reduction and reproductive concerns in female BRCA1/2 mutation carriers. Familial Cancer, 7(2), 179–186.CrossRefPubMedGoogle Scholar
  60. Stewart, J. L., Lynn, M. R., & Mishel, M. H. (2010). Psychometric evaluation of a new instrument to measure uncertainty in children and adolescents with cancer. Nursing Research, 59, 119–126.CrossRefPubMedPubMedCentralGoogle Scholar
  61. Vadaparampil, S. T., Quinn, G. P., Knapp, C., Malo, T. L., & Friedman, S. (2009). Factors associated with preimplantation genetic diagnosis acceptance among women concerned about hereditary breast and ovarian cancer. Genetics in Medicine, 11(10), 757–765.CrossRefPubMedGoogle Scholar
  62. Vadaparampil, S. T., Scherr, C. L., Cragun, D., Malo, T. L., & Pal, T. (2015). Pre-test genetic counseling services for hereditary breast and ovarian cancer delivered by non-genetics professionals in the state of Florida. Clinical Genetics, 87(5), 473–477.CrossRefPubMedGoogle Scholar
  63. van Manen, M. (1990). Researching lived experience: human science for action sensitive pedagogy. Albany: Suny Press.Google Scholar
  64. Vogel, V. G., Yeomans, A., & Higgibotham, E. (1993). Clinical management of women at increased risk for breast cancer. Breast Cancer Research and Treatment, 28, 195–210.CrossRefPubMedGoogle Scholar
  65. Wang, C. W., & Hui, E. C. (2009). Ethical, legal and social implications of prenatal and preimplantation genetic testing for cancer susceptibility. Reproductive BioMedicine Online, 19, 23–33.CrossRefPubMedGoogle Scholar
  66. Weber, K. M., Solomon, D. H., & Meyer, B. J. (2013). A qualitative study of breast cancer treatment decisions: evidence for five decision-making styles. Health Communication, 28(4), 408–421.CrossRefPubMedGoogle Scholar
  67. Werner-Lin, A. (2007). Danger zones: risk perceptions of young women from families with hereditary breast and ovarian cancer. Family Process, 46(3), 335–349.CrossRefPubMedGoogle Scholar
  68. Werner-Lin, A. (2008). Beating the biological clock: the compressed family life cycle of young women with BRCA gene alterations. Social Work in Health Care, 47(4), 416–437.CrossRefPubMedGoogle Scholar
  69. Werner-Lin, A., Hoskins, L. M., Doyle, M. H., & Greene, M. H. (2012). ‘Cancer doesn’t have an age’: Genetic testing and cancer risk management in BRCA1/2 mutation-positive women aged 18–24. Health: An Interdisciplinary Journal for the Social Study of Health, Illness & Medicine, 16(6), 636.CrossRefGoogle Scholar
  70. Westin, S. N., Sun, C. C., Lu, K. H., Schmeler, K. M., Soliman, P. T., Lacour, R. A., et al. (2011). Satisfaction with ovarian carcinoma risk-reduction strategies among women at high risk for breast and ovarian carcinoma. Cancer, 117(12), 2659–2667.CrossRefPubMedGoogle Scholar
  71. Woodson, A. H., Muse, K. I., Lin, H., Jackson, M., Mattair, D. N., Schover, L., et al. (2014). Breast cancer, BRCA mutations, and attitudes regarding pregnancy and preimplantation genetic diagnosis. The Oncologist, 19(8), 797–804.CrossRefPubMedPubMedCentralGoogle Scholar

Copyright information

© National Society of Genetic Counselors, Inc. 2017

Authors and Affiliations

  1. 1.Department of CommunicationThe University of South FloridaTampaUSA
  2. 2.Department of CommunicationTexas A&M UniversityCollege StationUSA

Personalised recommendations