Familial Cancer

, Volume 11, Issue 2, pp 215–224 | Cite as

Looking different, feeling different: women’s reactions to risk-reducing breast and ovarian surgery

  • Nina Hallowell
  • Brandi Baylock
  • Louise Heiniger
  • Phyllis N. Butow
  • Deepa Patel
  • Bettina Meiser
  • Christobel Saunders
  • kConFab Psychosocial Group on behalf of the kConFab Investigators
  • Melanie A. Price
Original Article

Abstract

Most studies of quality of life following risk-reducing bilateral salpingo-oophorectomy (RRSO) and mastectomy (RRM) for inherited breast and ovarian cancer susceptibility were conducted before counseling protocols were established and included women at varying times since surgery. This study aimed to overcome these deficiencies and to provide current data on outcomes for this growing group of women. Semi-structured interviews were used to explore the experiences of an Australian cohort of 40 high-risk women 3 years after they underwent RRM and/or RRSO. Data were analyzed using the method of constant comparison. 19/40 women underwent RRSO, 8/40 RRM and 13/40 both procedures. Two themes—looking different and feeling different—captured the psychosocial impact of surgery upon interviewees. All regarded RR surgery as a positive experience and were relieved at having their risks of cancer substantially reduced; however, reducing risk by removing these body parts is not without costs. In addition to relief interviewees also reported experiencing a range of negative emotions and a range of unexpected bodily sensations following surgery and reflected upon both positive and negative changes in their appearance. Women said they had been unprepared for the lack of sensation in reconstructed breasts and/or the severity of menopausal symptoms, which often had a negative impact upon sexuality. At-risk women regard RR surgery as a positive way to manage cancer risk. However, although women who currently undergo RR surgery are informed about its sequelae, few are entirely prepared for the reality of undergoing this procedure. We recommend that women who undergo these procedures should be provided with information supported by psychosocial input before and after RR surgery.

Keywords

BRCA1 and BRCA2 Breast and ovarian cancer Risk-reducing surgery Qualitative Sexuality and body image 

Notes

Acknowledgments

We are very grateful to the all the women who took part this study. We wish to thank Heather Thorne, Eveline Niedermayr, the kConFab research nurses and staff, the heads and staff of the Family Cancer Clinics, the Clinical Follow Up Study (funded 2001-2009 by NHMRC and currently by the National Breast Cancer Foundation and Cancer Australia #628333) and the many families who contribute to kConFab, for their contributions to this resource. kConFab is supported by grants from the National Breast Cancer Foundation, the National Health and Medical Research Council (NHMRC) and by the Queensland Cancer Fund, the Cancer Councils of New South Wales, Victoria, Tasmania and South Australia, and the Cancer Foundation of Western Australia. The kConFab Psychosocial study has been funded by National Health and Medical Research Council (Project Grants 153824, 301930, 457316). NH would like to thank the Leverhulme Trust for its generous support in the form of a Study Abroad Fellowship and The Universities of Sydney (Centre of Medical Psychology and Evidence-based Decision-making (CeMPED), School of Psychology), Melbourne (the Centre for Health and Society) and Adelaide (Department of Psychology) for accommodating her while she was writing this paper. P Butow receives a Principal Research Fellowship from NHMRC; B Meiser receives a Career Development Award from the NHMRC.

References

  1. 1.
    Ford D et al (1998) Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. Am J Hum Genet 62(3):676–689PubMedCrossRefGoogle Scholar
  2. 2.
    Risch HA et al (2006) Population BRCA1 and BRCA2 mutation frequencies and cancer penetrances: a kin-cohort study in Ontario, Canada. J Natl Cancer Inst 98(23):1694–1706PubMedCrossRefGoogle Scholar
  3. 3.
    Metcalfe K et al (2010) Family history of cancer and cancer risks in women with BRCA1 or BRCA2 mutations. J Natl Cancer Inst 102(24):1874–1878PubMedCrossRefGoogle Scholar
  4. 4.
    Hartmann LC et al (2001) Efficacy of bilateral prophylactic mastectomy in BRCA1 and BRCA2 gene mutation carriers. J Natl Cancer Inst 93(21):1633–1637PubMedCrossRefGoogle Scholar
  5. 5.
    Meijers-Heijboer H et al (2003) Use of genetic testing and prophylactic mastectomy and oophorectomy in women with breast or ovarian cancer from families with a BRCA1 or BRCA2 mutation. J Clin Oncol 21(9):1675–1681PubMedCrossRefGoogle Scholar
  6. 6.
    Rebbeck TR et al (2004) Bilateral prophylactic mastectomy reduces breast cancer risk in BRCA1 and BRCA2 mutation carriers: the PROSE study group. J Clin Oncol 22(6):1055–1062PubMedCrossRefGoogle Scholar
  7. 7.
    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):80–87PubMedCrossRefGoogle Scholar
  8. 8.
    Evans DG et al (2009) Screening for familial ovarian cancer: poor survival of BRCA1/2 related cancers. J Med Genet 46(9):593–597PubMedCrossRefGoogle Scholar
  9. 9.
    Maribs Study Group (2005) Screening with magnetic resonance imaging and mammography of a UK population at high familial risk of breast cancer. Lancet 365 (9474): 1848–1848Google Scholar
  10. 10.
    Kriege M et al (2004) Efficacy of MRI and mammography for breast-cancer screening in women with a familial or genetic predisposition. N Engl J Med 351(5):427–437PubMedCrossRefGoogle Scholar
  11. 11.
    Evans DG et al (2009) Risk reducing mastectomy: outcomes in 10 European centres. J Med Genet 46(4):254–258PubMedCrossRefGoogle Scholar
  12. 12.
    Finch A et al (2006) Salpingo-oophorectomy and the risk of ovarian, fallopian tube, and peritoneal cancers in women with a BRCA1 or BRCA2 mutation. J Am Med Assoc 296(2):185–192CrossRefGoogle Scholar
  13. 13.
    Domchek SM et al (2010) Association of risk-reducing surgery in BRCA1 or BRCA2 mutation carriers with cancer risk and mortality. J Am Med Assoc 304(9):967–975CrossRefGoogle Scholar
  14. 14.
    Kurian AW, Sigal BM, Plevritis SK (2010) Survival analysis of cancer risk reduction strategies for BRCA1/2 mutation carriers. J Clin Oncol 28(2):222–231PubMedCrossRefGoogle Scholar
  15. 15.
    Nelson HD, Fu R, Griffin JC, Nygren P, Smith MEB, Humphrey L (2009) Systematic review: comparative effectiveness of medications to reduce risk for primary breast cancer. Ann Intern Med 151(10):703–715PubMedGoogle Scholar
  16. 16.
    Brandberg Y 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):3943–3949PubMedCrossRefGoogle Scholar
  17. 17.
    Dowdy SC, Stefanek M, Hartmann LC (2004) Surgical risk reduction: prophylactic salpingo-oophorectomy and prophylactic mastectomy. Am J Obstet Gynecol 191(4):1113–1123PubMedCrossRefGoogle Scholar
  18. 18.
    Miller SM et al (2010) New strategies in ovarian cancer: uptake and experience of women at high risk of ovarian cancer who are considering risk-reducing salpingo-oophorectomy. Clin Cancer Res 16(21):5094–5106PubMedCrossRefGoogle Scholar
  19. 19.
    Borgen PI, Hill AD, Tran KN, Van Zee KJ, Massie MJ, Payne D, Biggs CG (1998) Patient regrets after bilateral prophylactic mastectomy. Ann Surg Oncol 5(7): 603–606Google Scholar
  20. 20.
    McGaughey A (2006) Body image after bilateral prophylactic mastectomy: an integrative literature review. J Midwifery Womens Health 51(6):e45–e49PubMedCrossRefGoogle Scholar
  21. 21.
    Spear SLMD et al (2008) Prophylactic mastectomy and reconstruction: clinical outcomes and patient satisfaction. Plast Reconstr Surg 122(1):1–9PubMedCrossRefGoogle Scholar
  22. 22.
    Altschuler A et al (2008) Positive, negative, and disparate—women’s differing long-term psychosocial experiences of bilateral or contralateral prophylactic mastectomy. Breast J 14(1):25–32PubMedCrossRefGoogle Scholar
  23. 23.
    Bebbington Hatcher M, Fallowfield LJ (2003) A qualitative study looking at the psychosocial implications of bilateral prophylactic mastectomy. Breast 12(1):1–9PubMedCrossRefGoogle Scholar
  24. 24.
    Bresser PJC et al (2006) Satisfaction with prophylactic mastectomy and breast reconstruction in genetically predisposed women. Plast Reconstr Surg 117(6):1675–1682PubMedCrossRefGoogle Scholar
  25. 25.
    Lodder LN et al (2002) One year follow-up of women opting for presymptomatic testing for BRCA1 and BRCA2: emotional impact of the test outcome and decisions on risk management (surveillance or prophylactic surgery). Breast Cancer Res Treat 73(2):97–112PubMedCrossRefGoogle Scholar
  26. 26.
    Frost MH et al (2000) Long-term satisfaction and psychological and social function following bilateral prophylactic mastectomy. J Am Med Assoc 284(3):319–324CrossRefGoogle Scholar
  27. 27.
    Hallowell N (2000) A qualitative study of the information needs of high-risk women undergoing prophylactic oophorectomy. Psychooncology 9(6):486–495PubMedCrossRefGoogle Scholar
  28. 28.
    Hallowell N, Lawton J (2002) Negotiating present and future selves: managing the risk of hereditary ovarian cancer by prophylactic surgery. Health Interdiscip J Soc Study Health Illn Med 6(4):423–443Google Scholar
  29. 29.
    Bonadies DC, Moyer A, Matloff ET (2011) What I wish I’d known before surgery: BRCA carriers’ perspectives after bilateral salipingo-oophorectomy. Fam Cancer 10(1):79–85CrossRefGoogle Scholar
  30. 30.
    Bresser PJC 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):95–103PubMedCrossRefGoogle Scholar
  31. 31.
    Geiger AMP et al (2007) Quality of life after bilateral prophylactic mastectomy. Ann Surg Oncol 14(2):686–694PubMedCrossRefGoogle Scholar
  32. 32.
    Rolnick SJ et al (2007) What women wish they knew before prophylactic mastectomy. Cancer Nurs 30(4):285–293PubMedCrossRefGoogle Scholar
  33. 33.
    Mann GJ 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): R12 EpubGoogle Scholar
  34. 34.
    Phillips K-A, Butow P, Stewart A, Chang J-H, Weideman P, Price M et al (2005) Predictors of participation in clinical and psychosocial follow up of the kConFab breast cancer family study. Fam Cancer 4:105–113PubMedCrossRefGoogle Scholar
  35. 35.
    Corbin J, Strauss A (1990) Grounded theory research—procedures, canons and evaluative criteria. Z Soziol 19(6):418–427Google Scholar
  36. 36.
    van Oostrom I et al (2003) Long-term psychological impact of carrying a BRCA1/2 mutation and prophylactic surgery: a 5-year follow-up study. J Clin Oncol 21(20):3867–3874PubMedCrossRefGoogle Scholar
  37. 37.
    Finch A 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):163–168PubMedCrossRefGoogle Scholar
  38. 38.
    National Health Medical Research Council of Australia (1999) Guidelines on familial aspects of cancer. Canberra, Australian Cancer NetworkGoogle Scholar
  39. 39.
    Hallowell N et al (2004) High-risk premenopausal women’s experiences of undergoing prophylactic oophorectomy: a descriptive study. Genet Test 8(2):148–156PubMedCrossRefGoogle Scholar
  40. 40.
    Information for Women Considering Prophylactic Removal of the Breast in BRCAs Risk Reducing Mastectomy (2009) Familial Cancer Unit, SA Clinical Genetics Service, SA Pathology, Adelaide SA 5000Google Scholar
  41. 41.
    Rocca WA, Bower JH, Maraganore DM, Ahlskog JE, Grossardt BR, de Andrade M, Melton LJ 3rd (2007) Increased risk of cognitive impairment or dementia in women who underwent oophorectomy before menopause. Neurol 69:1074–1083CrossRefGoogle Scholar
  42. 42.
    Challberg J et al (2011) Menopausal symptoms and bone health in women undertaking risk reducing bilateral salpingo-oophorectomy: significant bone health issues in those not taking HRT. Br J Cancer 105(1):22–27PubMedCrossRefGoogle Scholar
  43. 43.
    Hickey M, Emery LI, Gregson J, Doherty DA, Saunders CM (2010) The multidisciplinary management of menopausal symptoms after breast cancer: a unique model of care. Menopause J North Am Menopause Soc 17(4):727–733Google Scholar

Copyright information

© Springer Science+Business Media B.V. 2011

Authors and Affiliations

  • Nina Hallowell
    • 1
  • Brandi Baylock
    • 2
    • 3
  • Louise Heiniger
    • 2
    • 3
  • Phyllis N. Butow
    • 2
    • 3
  • Deepa Patel
    • 2
    • 3
  • Bettina Meiser
    • 4
  • Christobel Saunders
    • 5
  • kConFab Psychosocial Group on behalf of the kConFab Investigators
  • Melanie A. Price
    • 2
    • 3
  1. 1.Institute of Health and SocietyNewcastle UniversityNewcastle Upon TyneUK
  2. 2.Centre for Medical Psychology and Evidence-based Decision-making (CeMPED)The University of SydneySydneyAustralia
  3. 3.School of PsychologyThe University of SydneySydneyAustralia
  4. 4.Prince of Wales Clinical SchoolUniversity of New South WalesKensingtonAustralia
  5. 5.School of SurgeryQEII Medical CentrePerthAustralia

Personalised recommendations