Skip to main content

Advertisement

SpringerLink
Log in

Long-term outcomes of risk-reducing surgery in unaffected women at increased familial risk of breast and/or ovarian cancer

  • Original Article
  • Published:
Familial Cancer Aims and scope Submit manuscript

Abstract

This study prospectively investigated long-term psychosocial outcomes for women who opted for risk-reducing mastectomy (RRM) and/or risk-reducing salpingo-oophorectomy (RRSO). Unaffected women from high-risk breast cancer families who had completed baseline questionnaires for an existing study and subsequently underwent RRM and/or RRSO, completed measures of perceived breast and ovarian cancer risk, anxiety, depression, cancer-related anxiety, body image, sexual functioning, menopausal symptoms, use of hormone replacement therapy and decision regret 3 years post-surgery. Outcomes were compared to age- and risk-matched controls. Participants (N = 233) were 17 women who had RRM (39 controls), 38 women who had RRSO (94 controls) and 15 women who had RRM + RRSO (30 controls). Women who underwent RRM and those who underwent RRM + RRSO reported reductions in perceived breast cancer risk and perceived breast and ovarian cancer risk respectively, compared to their respective controls. RRM women reported greater reductions in cancer-related anxiety compared with both controls and RRSO women. RRSO women reported more sexual discomfort than controls and more urogenital menopausal symptoms than controls and RRM only women. No differences in general anxiety, depression or body image were observed. Regret was associated with greater reductions in body image since surgery and more sexual discomfort, although overall regret levels were low. Women who undergo RRM experience psychological benefits associated with reduced breast cancer risk. Although women who undergo RRSO experience some deterioration in sexual and menopausal symptoms, they do not regret their surgery decision. It is vital that women considering these procedures receive detailed information about potential psychosocial consequences.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

Notes

  1. Relative risk of one RRS participant was calculated as 0.83 upon entry to kConFab. This participant is not eligible for predictive testing as no deleterious mutation has been identified in the family. Lower age at first child and older age at menarche are associated with relative risks of less than 1 [25].

References

  1. Ford D, Easton DF, Bishop DT, Narod SA, Goldgar DE, Haites N et al (1994) Risks of cancer in BRCA1-mutation carriers. Lancet 343(8899):692–695. doi:10.1016/s0140-6736(94)91578-4

    Article  CAS  PubMed  Google Scholar 

  2. Ford D, Easton DF, Stratton M, Narod S, Goldgar D, Devilee P et al (1998) Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. Am J Hum Genet 62(3):676–689

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  3. Rebbeck TR, Kauff ND, Domchek SM (2009) Meta-analysis of risk reduction estimates associated with risk-reducing salpingo-oophorectomy in BRCA1 or BRCA2 mutation carriers. J Natl Cancer Inst 101(2):80–87

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  4. Hallowell N (2000) A qualitative study of the information needs of high-risk women undergoing prophylactic oophorectomy. Psycho-Oncology 9(6):486–495

    Article  CAS  PubMed  Google Scholar 

  5. Hurley KE, Miller SM, Costalas JW, Gillespie D, Daly MB (2001) Anxiety/uncertainty reduction as a motivation for interest in prophylactic oophorectomy in women with a family history of ovarian cancer. J Womens Health Gend Based Med 10(2):189–199

    Article  CAS  PubMed  Google Scholar 

  6. Vodermaier A, Bauerfeind I, Nestle-Kramling C (2006) Prophylactic surgery in women at high risk for breast and ovarian cancer. An overview of the international literature on attitudes, uptake and quality of life. Geburtshilfe Frauenheilkd 66(11):1035–1049. doi:10.1055/s-2006-924303

    Article  Google Scholar 

  7. Elit L, Esplen MJ, Butler K, Narod S (2001) Quality of life and psychosexual adjustment after prophylactic oophorectomy for a family history of ovarian cancer. Fam Cancer 1(3–4):149

    Article  CAS  PubMed  Google Scholar 

  8. Metcalfe KA, Narod SA (2002) Breast cancer risk perception among women who have undergone prophylactic bilateral mastectomy. J Natl Cancer Inst 94(20):1564–1569

    Article  PubMed  Google Scholar 

  9. Bresser PJC, Seynaeve C, Van Gool AR, Niermeijer MF, Duivenvoorden HJ, van Dooren S et al (2007) The course of distress in women at increased risk of breast and ovarian cancer due to an (identified) genetic susceptibility who opt for prophylactic mastectomy and/or salpingo-oophorectomy. Eur J Cancer 43(1):95–103. doi:10.1016/j.ejca.2006.09.009

    Article  CAS  PubMed  Google Scholar 

  10. Frost MH, Schaid DJ, Sellers TA, Slezak JM, Arnold PG, Woods JE et al (2000) Long-term satisfaction and psychological and social function following bilateral prophylactic mastectomy. JAMA. J Am Med Assoc 284(3):319–324

    Article  CAS  Google Scholar 

  11. Bresser PJC, Seynaeve C, Van Gool AR, Brekelmans CT, Meijers-Heijboer H, van Geel AN et al (2006) Satisfaction with prophylactic mastectomy and breast reconstruction in genetically predisposed women. Plast Reconstr Surg 117(6):1675–1682. doi:10.1097/01.prs.0000217383.99038.f5

    Article  CAS  PubMed  Google Scholar 

  12. Isern AE, Tengrup I, Loman N, Olsson H, Ringberg A (2008) Aesthetic outcome, patient satisfaction, and health-related quality of life in women at high risk undergoing prophylactic mastectomy and immediate breast reconstruction. J Plast Reconstr Aesthet Surg 61(10):1177–1187. doi:10.1016/j.bjps.2007.08.006

    Article  CAS  PubMed  Google Scholar 

  13. Payne DK, Biggs C, Tran KN, Borgen PI, Massie MJ (2000) Women’s regrets after bilateral prophylactic mastectomy. Ann Surg Oncol 7(2):150–154

    Article  CAS  PubMed  Google Scholar 

  14. Fuller S, Anderson RC (2006) Adjustment issues related to bilateral prophylactic mastectomy in women at elevated risk of developing breast cancer. Plast Surg Nurs 26(2):60–65

    Article  PubMed  Google Scholar 

  15. Gahm J, Wickman M, Brandberg Y (2010) Bilateral prophylactic mastectomy in women with inherited risk of breast cancer—prevalence of pain and discomfort, impact on sexuality, quality of life and feelings of regret two years after surgery. Breast 19(6):462–469. doi:10.1016/j.breast.2010.05.003

    Article  PubMed  Google Scholar 

  16. Robson M, Hensley M, Barakat R, Brown C, Chi D, Poynor E et al (2003) Quality of life in women at risk for ovarian cancer who have undergone risk-reducing oophorectomy. Gynecol Oncol 89(2):281–287

    Article  PubMed  Google Scholar 

  17. Madalinska JB, van Beurden M, Bleiker EMA, Valdimarsdottir HB, Hollenstein J, Massuger LF et al (2006) The impact of hormone replacement therapy on menopausal symptoms in younger high-risk women after prophylactic salpingo-oophorectomy. J Clin Oncol 24(22):3576–3582. doi:10.1200/jco.2005.05.1896

    Article  PubMed  Google Scholar 

  18. Fry A, Busby-Earle C, Rush R, Cull A (2001) Prophylactic oophorectomy versus screening: psychosocial outcomes in women at increased risk of ovarian cancer. Psycho-Oncology 10(3):231–241

    Article  CAS  PubMed  Google Scholar 

  19. Bebbington Hatcher M, Fallowfield L, A’Hern R (2001) The psychosocial impact of bilateral prophylactic mastectomy: Prospective study using questionnaires and semistructured interviews. Br Med J 322(7278):76

    Article  Google Scholar 

  20. Hopwood P, Lee A, Shenton A, Baildam A, Brain A, Lalloo F et al (2000) Clinical follow-up after bilateral risk reducing (‘prophylactic’) mastectomy: mental health and body image outcomes. Psycho-Oncology 9(6):462–472

    Article  CAS  PubMed  Google Scholar 

  21. Brandberg Y, Sandelin K, Erikson S, Jurell G, Liljegren A, Lindblom A et al (2008) Psychological reactions, quality of life, and body image after bilateral prophylactic mastectomy in women at high risk for breast cancer: a prospective 1-year follow-up study. J Clin Oncol 26(24):3943–3949

    Article  PubMed  Google Scholar 

  22. Gopie JP, Mureau MAM, Seynaeve C, ter Kuile MM, Menke-Pluymers MBE, Timman R et al (2013) Body image issues after bilateral prophylactic mastectomy with breast reconstruction in healthy women at risk for hereditary breast cancer. Fam Cancer 12(3):479–487. doi:10.1007/s10689-012-9588-5

    Article  PubMed  Google Scholar 

  23. Finch A, Metcalfe KA, Chiang JK, Elit L, McLaughlin J, Springate C et al (2011) The impact of prophylactic salpingo-oophorectomy on menopausal symptoms and sexual function in women who carry a BRCA mutation. Gynecol Oncol 121(1):163–168

    Article  CAS  PubMed  Google Scholar 

  24. Phillips KA, Butow PN, Stewart AE, Chang JH, Weideman PC, Price MA et al (2005) Predictors of participation in clinical and psychosocial follow-up of the kConFab breast cancer family cohort. Fam Cancer 4(2):105–113. doi:10.1007/s10689-004-6129-x

    Article  PubMed  Google Scholar 

  25. Tyrer J, Duffy SW, Cuzick J (2004) A breast cancer prediction model incorporating familial and personal risk factors. Stat Med 23(7):1111–1130. doi:10.1002/sim.1668

    Article  PubMed  Google Scholar 

  26. Mann GJ, Thorne H, Balleine RL, Butow PN, Clarke CL, Edkins E et al (2006) Analysis of cancer risk and BRCA1 and BRCA2 mutation prevalence in the kConFab familial breast cancer resource. Breast Cancer Res 8(1). doi:10.1186/bcr1377

  27. Price MA, Butow PN, Lo SK, Wilson J (2007) Predictors of cancer worry in unaffected women from high risk breast cancer families: risk perception is not the primary issue. J Genet Couns 16(5):635–644

    Article  PubMed  Google Scholar 

  28. Meiser B, Butow P, Barratt A, Friedlander M, Gattas M, Kirk J et al (1999) Attitudes toward prophylactic oophorectomy and screening utilization in women at increased risk of developing hereditary breast/ovarian cancer. Gynecol Oncol 75(1):122–129

    Article  CAS  PubMed  Google Scholar 

  29. Zigmond AS, Snaith RP (1983) The hospital anxiety and depression scale. Acta Psychiatr Scand 67(6):361–370

    Article  CAS  PubMed  Google Scholar 

  30. Horowitz MJ, Wilner N, Alvarez W (1979) Impact of Event Scale: a measure of subjective stress. Psychosom Med 41(3):209–218

    Article  CAS  PubMed  Google Scholar 

  31. Cash TF (2002) The situational inventory of body-image dysphoria: psychometric evidence and development of a short form. Int J Eat Disord 32(3):362–366. doi:10.1002/eat.10100

    Article  PubMed  Google Scholar 

  32. White CA, Hood C (2012) Body image issues in oncology. In: Cash TF, Smolak L (eds) Body image: a handbook of science, practice, and prevention. Guilford Publications, New York, pp 333–341

  33. Thirlaway K, Fallowfield L, Cuzick J (1996) The sexual activity questionnaire: a measure of women’s sexual functioning. Qual Life Res 5(1):81–90. doi:10.1007/bf00435972

    Article  CAS  PubMed  Google Scholar 

  34. Schneider H, Heinemann L, Rosemeier H-P, Potthoff P, Behre H (2000) The Menopause Rating Scale (MRS): reliability of menopausal complaints. Climacteric 3:59–64

    Article  CAS  PubMed  Google Scholar 

  35. Brehaut JC, O’Connor AM, Wood TJ, Hack TF, Siminoff L, Gordon E et al (2003) Validation of a decision regret scale. Med Decis Mak 23:281–292

    Article  Google Scholar 

  36. Hopwood P, Fletcher I, Lee A, Ghazal SA (2001) A body image scale for use with cancer patients. Eur J Cancer 37(2):189–197. doi:10.1016/s0959-8049(00)00353-1

    Article  CAS  PubMed  Google Scholar 

  37. Fang CY, Cherry C, Devarajan K, Li T, Malick J, Daly MB (2009) A prospective study of quality of life among women undergoing risk-reducing salpingo-oophorectomy versus gynecologic screening for ovarian cancer. Gynecol Oncol 112(3):594–600

    Article  PubMed Central  PubMed  Google Scholar 

  38. den Heijer M, Seynaeve C, Timman R, Duivenvoorden HJ, Vanheusden K, Tilanus-Linthorst M et al (2012) Body image and psychological distress after prophylactic mastectomy and breast reconstruction in genetically predisposed women: a prospective long-term follow-up study. Eur J Cancer 48(9):1263–1268. doi:10.1016/j.ejca.2011.10.020

    Article  Google Scholar 

Download references

Acknowledgments

We wish to thank the many families who contribute to kConFab, Heather Thorne, Eveline Niedermayr, all the kConFab research nurses and staff, the heads and staff of the Family Cancer Clinics, and the Clinical Follow Up Study. kConFab is supported by a grant from the National Breast Cancer Foundation; and was previously supported by the National Health and Medical Research Council (NHMRC); the Queensland Cancer Fund, the Cancer Councils of New South Wales, Victoria, Tasmania and South Australia; and the Cancer Foundation of Western Australia. The Clinical Follow-up study received funding from the National Health and Medical Research Council [NHMRC], the National Breast Cancer Foundation, Cancer Australia, and the National Institutes of Health (USA). Prof Phyllis Butow receives an NHMRC Senior Principal Research Fellowship, and A/Professor Bettina Meiser an NHMRC Career Development Award Level 2.

Author information

Authors and Affiliations

  1. Centre for Medical Psychology and Evidence-Based Decision-Making (CeMPED), School of Psychology, University of Sydney, Level 6 North, Chris O’Brien Lifehouse (C39Z), Sydney, NSW, 2006, Australia

    Louise Heiniger, Phyllis N. Butow, Tracey Bullen, Judy Wilson, Brandi Baylock & Melanie A. Price

  2. Psycho-oncology Cooperative Research Group (PoCoG), University of Sydney, Sydney, NSW, 2006, Australia

    Louise Heiniger, Phyllis N. Butow, Joseph Coll, Tracey Bullen, Judy Wilson, Brandi Baylock & Melanie A. Price

  3. School of Psychology, University of Sydney, Sydney, NSW, 2006, Australia

    Louise Heiniger, Phyllis N. Butow, Joseph Coll, Tracey Bullen, Judy Wilson, Brandi Baylock & Melanie A. Price

  4. School of Population Health, University of Queensland, Brisbane, QLD, Australia

    Joseph Coll

  5. Institute of Child Protection Studies, Australian Catholic University, Canberra, ACT, 2602, Australia

    Tracey Bullen

  6. Psychosocial Research Group, Department of Medical Oncology, Prince of Wales Hospital Randwick, Dickinson 3, Randwick, NSW, 2031, Australia

    Bettina Meiser

  7. Prince of Wales Clinical School, University of New South Wales, Sydney, NSW, 2052, Australia

    Bettina Meiser

Authors
  1. Louise Heiniger
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Phyllis N. Butow
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Joseph Coll
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Tracey Bullen
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Judy Wilson
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Brandi Baylock
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Bettina Meiser
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Melanie A. Price
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Melanie A. Price.

Additional information

On behalf of the kConFab Psychosocial Group.

Appendix

Appendix

The kConFab Psychosocial Group includes the following in addition to the authors listed in the author group: B Bennett and K Tucker, Department of Medical Oncology, Prince of Wales Hospital, Randwick, Australia. S-A McLachlan Department of Oncology and Department of Medicine, St Vincent’s Hospital, Melbourne, Australia; K-A Phillips, Department of Medicine, St Vincent’s Hospital, University of Melbourne, Melbourne, Australia; Division of Cancer Medicine, Peter MacCallum Cancer Centre, Victoria, Australia; School of Population Health, University of Melbourne; CC Tennant, Sydney Medical School (Northern), The University of Sydney, Sydney, Australia.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Heiniger, L., Butow, P.N., Coll, J. et al. Long-term outcomes of risk-reducing surgery in unaffected women at increased familial risk of breast and/or ovarian cancer. Familial Cancer 14, 105–115 (2015). https://doi.org/10.1007/s10689-014-9759-7

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10689-014-9759-7

Keywords

Search

Navigation