Influences on Satisfaction with Reconstructed Breasts and Intimacy in Younger Women Following Bilateral Prophylactic Mastectomy: a Qualitative Analysis

Abstract

Purpose

The aim of this study was to explore the influences on satisfaction with reconstructed breasts and intimacy following bilateral prophylactic mastectomy (BPM) in younger women (< 35) with a strong family history of breast cancer.

Methods

Twenty-six women who had undergone BPM between 1 and6 years ago were recruited from New Zealand and Australia through a genetics clinic, registry, research cohort, and online (Mage = 31). Twenty-three were BRCA mutation carriers. Qualitative interviews guided by interpretative phenomenological analysis were conducted.

Results

Four themes were identified: satisfaction with breasts before surgery, outcome expectations, type of mastectomy, and open communication. Women who liked their breasts pre-BPM appeared less satisfied with their reconstructed breasts post-surgery, and women who disliked their breasts before BPM were more satisfied with their reconstructed breasts. Women with unrealistic expectations concerning the look and feel of reconstructed breasts were often unhappy with their reconstructed breasts and felt they did not meet their expectations. Unrealistic photos of breast reconstruction and satisfactory communication of realistic outcome expectations by surgeons or psychologists also appeared to influence satisfaction. Communication with partners prior to BPM appeared to improve satisfaction with intimacy post-BPM.

Conclusions

The findings suggest that satisfaction with reconstructed breasts for younger women post-BPM appeared to be influenced by realistic outcome expectations and communication with others concerning reconstructed breast appearance and intimacy post-BPM. Implications for practice include discussion of realistic reconstructed breast appearance, referral to a psychologist to discuss sensitive issues, and accurate communication of surgical risks and consequences.

This is a preview of subscription content, access via your institution.

Notes

  1. 1.

    Conversion USA: DDD and UK: E

  2. 2.

    Conversion USA and UK: 34D

References

  1. 1.

    Mavaddat N, Peock S, Frost D, Ellis S, Platte R, Fineberg E, et al. Cancer risks for BRCA1 and BRCA2 mutation carriers: results from prospective analysis of EMBRACE. J Natl Cancer Inst. 2013;105(11):812–22.

    Article  PubMed  CAS  Google Scholar 

  2. 2.

    King M-C, Marks JH, Handell JB. Breast and ovarian cancer risks due to inherited mutationsin BRCA1 and BRCA2. Science. 2003;302(5645):643–6.

    Article  PubMed  CAS  Google Scholar 

  3. 3.

    Metcalfe K, Finch A, Poll A, Horsman D, Kim-Sing C, Scott J, et al. Breast cancer risks in women with a family history of breast or ovarian cancer who have tested negative for a BRCA1 or BRCA2 mutation. Br J Cancer. 2009;100(2):421–5.

    Article  PubMed  CAS  Google Scholar 

  4. 4.

    Cancer Institute NSW. Risk management for an unaffected female BRCA1 mutation carrier 2009 [Available from: https://www.eviq.org.au/Protocol/tabid/66/categoryid/66/id/170/Risk+Management+for+an+Unaffected+Female+BRCA1+Mutation+Carrier.aspx.

  5. 5.

    Collins IM, Milne RL, Weideman PC, McLachlan S-A, Friedlander ML, Hopper JL, et al. Preventing breast and ovarian cancers in high-risk BRCA1 and BRCA2 mutation carriers. Med J Aust. 2013;199(10):680–3.

    Article  PubMed  Google Scholar 

  6. 6.

    Antoniou A, Pharoah PDP, Narod S, Risch HA, Eyfjord JE, Hopper JL, et al. Average risks of breast and ovarian cancer associated with BRCA1 or BRCA2 mutations detected in case series unselected for family history: a combined analysis of 22 studies. Am J Hum Genet. 2003;72(5):1117–30.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  7. 7.

    Ludwig KK, Neuner J, Butler A, Geurts JL, Kong AL. Risk reduction and survival benefit of prophylactic surgery in BRCA mutation carriers, a systematic review. Am J Surg. 2016;212(4):660–9.

    Article  PubMed  Google Scholar 

  8. 8.

    Long J, Evans TG, Bailey D, Lewis MH, Gower-Thomas K, Murray A. Uptake of risk-reducing surgery in BRCA gene carriers in Wales, UK. Breast J. 2017; https://doi.org/10.1111/tbj.12978.

  9. 9.

    Evans DG, Lalloo F, Ashcroft L, Shenton A, Clancy T, Baildam AD, et al. Uptake of risk reducing surgery in unaffected women at high risk of breast and ovarian cancer is risk, age and time dependent. Cancer Epidemiol Biomarkers Prev. 2009;18:2318–24.

    Article  PubMed  Google Scholar 

  10. 10.

    Skytte AB, Gerdes AM, Andersen M, Sunde L, Brøndum-Nielsen K, Waldstrøm M, et al. Risk-reducing mastectomy and salpingo-oophorectomy in unaffected BRCA mutation carriers: uptake and timing. Clin Genet. 2010;77(4):342–9.

    Article  PubMed  CAS  Google Scholar 

  11. 11.

    Tong A, Kelly S, Nusbaum R, Graves K, Peshkin BN, Valdimarsdottir HB, et al. Intentions for risk-reducing surgery among high-risk women referred for BRCA1/BRCA2 genetic counseling. Psycho-Oncology. 2015;24(1):33–9.

    Article  PubMed  Google Scholar 

  12. 12.

    McGaughey A. Body image after bilateral prophylactic mastectomy: an integrative literature review. J Midwifery Women’s Health. 2006;51(6):e45–e9.

    Article  Google Scholar 

  13. 13.

    Brandberg Y, Sandelin K, Erikson S, Jurell G, Liljegren A, Lindblom A, et al. 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. 2008;26(24):3943–9.

    Article  PubMed  Google Scholar 

  14. 14.

    Bresser PJ, Seynaeve C, Van Gool AR, Brekelmans CT, Meijers-Heijboer H, van Geel AN, et al. Satisfaction with prophylactic mastectomy and breast reconstruction in genetically predisposed women. Plast Reconstr Surg. 2006;117(6):1675–82.

    Article  PubMed  CAS  Google Scholar 

  15. 15.

    Gahm J, Wickman M, Brandberg Y. 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. 2010;19(6):462–9.

    Article  PubMed  Google Scholar 

  16. 16.

    Tiggemann M, McCourt A. Body appreciation in adult women: relationships with age and body satisfaction. Body image. 2013;10(4):624–7.

    Article  PubMed  Google Scholar 

  17. 17.

    Tiggemann M, Lynch JE. Body image across the life span in adult women: the role of self-objectification. Dev Psychol. 2001;37(2):243–53.

    Article  PubMed  CAS  Google Scholar 

  18. 18.

    Gopie J, Mureau MM, Seynaeve C, ter Kuile M, Menke-Pluymers ME, Timman R, et al. Body image issues after bilateral prophylactic mastectomy with breast reconstruction in healthy women at risk for hereditary breast cancer. Familial Cancer. 2013;12(3):479–87.

    Article  PubMed  Google Scholar 

  19. 19.

    Razdan SN, Patel V, Jewell S, McCarthy CM. Quality of life among patients after bilateral prophylactic mastectomy: a systematic review of patient-reported outcomes. Qual Life Res. 2016;25(6):1409–21.

    Article  PubMed  Google Scholar 

  20. 20.

    Unukovych D, Johansson H, Brandberg Y. Preoperative psychosocial characteristics may predict body image and sexuality two years after risk-reducing mastectomy: a prospective study. Gland Surgery. 2017;6(1):64–72.

    Article  PubMed  PubMed Central  Google Scholar 

  21. 21.

    den Heijer M, Seynaeve C, Timman R, Duivenvoorden HJ, Vanheusden K, Tilanus-Linthorst M, et al. 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. 2012;48(9):1263–8.

    Article  Google Scholar 

  22. 22.

    Lloyd S, Watson M, Oaker G, Sacks N, Querci della Rovere U, Gui G. Understanding the experience of prophylactic bilateral mastectomy: a qualitative study of ten women. Psycho-Oncology. 2000;9(6):473–85.

    Article  PubMed  CAS  Google Scholar 

  23. 23.

    Metcalfe KA, Cil TD, Semple JL, Li LDX, Bagher S, Zhong T, et al. Long-term psychosocial functioning in women with bilateral prophylactic mastectomy: does preservation of the nipple-areolar complex make a difference? Ann Surg Oncol. 2015;22(10):3324–30.

    Article  PubMed  Google Scholar 

  24. 24.

    Baltzer HL, Alonzo-Proulx O, Mainprize JG, Yaffe MJ, Metcalfe KA, Narod SA, et al. MRI volumetric analysis of breast fibroglandular tissue to assess risk of the spared nipple in BRCA1 and BRCA2 mutation carriers. Ann Surg Oncol. 2014;21(5):1583–8.

    Article  PubMed  Google Scholar 

  25. 25.

    Brandberg Y, Arver B, Johansson H, Wickman M, Sandelin K, Liljegren A. Less correspondence between expectations before and cosmetic results after risk-reducing mastectomy in women who are mutation carriers: a prospective study. Eur J Surg Oncol (EJSO). 2012;38(1):38–43.

    Article  CAS  Google Scholar 

  26. 26.

    Hallowell N, Baylock B, Heiniger L, Butow PN, Patel D, Meiser B, et al. Looking different, feeling different: women’s reactions to risk-reducing breast and ovarian surgery. Familial Cancer. 2012;11(2):215–24.

    Article  PubMed  Google Scholar 

  27. 27.

    Baucom DH, Porter LS, Kirby JS, Gremore TM, Keefe FJ. Psychosocial issues confronting young women with breast cancer. Breast Dis. 2006;23(1):103–13.

    Article  Google Scholar 

  28. 28.

    Fobair P, Stewart SL, Chang S, D’onofrio C, Banks PJ, Bloom JR. Body image and sexual problems in young women with breast cancer. Psycho-Oncology. 2006;15(7):579–94.

    Article  PubMed  Google Scholar 

  29. 29.

    Grogan S, Mechan J. Body image after mastectomy: a thematic analysis of younger women’s written accounts. J Health Psychol. 2017;22(11):1480–90.

    Article  PubMed  Google Scholar 

  30. 30.

    Champion VL, Wagner LI, Monahan PO, Daggy J, Smith L, Cohee A, et al. Comparison of younger and older breast cancer survivors and age-matched controls on specific and overall quality of life domains. Cancer. 2014;120(15):2237–46.

    Article  PubMed  PubMed Central  Google Scholar 

  31. 31.

    Smith JA. Beyond the divide between cognition and discourse: using interpretative phenomenological analysis in health psychology. Psychol Health. 1996;11(2):261–71.

    Article  Google Scholar 

  32. 32.

    Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–57.

    Article  PubMed  Google Scholar 

  33. 33.

    Underhill ML, Lally RM, Kiviniemi MT, Murekeyisoni C, Dickerson SS. Living my family’s story: identifying the lived experience in healthy women at risk for hereditary breast cancer. Cancer Nurs. 2012;35(6):493–504.

    Article  PubMed  PubMed Central  Google Scholar 

  34. 34.

    Glassey R, Ives A, Saunders C, Musiello T. Decision making, psychological wellbeing and psychosocial outcomes for high risk women who choose to undergo bilateral prophylactic mastectomy—a review of the literature. Breast. 2016;28:130–5.

    Article  PubMed  Google Scholar 

  35. 35.

    National Breast and Ovarian Cancer Centre. Advice about familial aspects of breast cancer and epithelial ovarian cancer: a guide for health professionals 2010 [Available from: http://canceraustralia.gov.au/sites/default/files/publications/nbocc-bog-2010-web-a4-printable_504af02a673fd.pdf.

  36. 36.

    Glassey R, O’Connor M, Ives A, Saunders C, O’Sullivan S, Hardcastle SJ, et al. Heightened perception of breast cancer risk in young women at risk of familial breast cancer. Familial Cancer. 2018;17(1):15–22.

    Article  PubMed  Google Scholar 

  37. 37.

    Guest G, Bunce A, Johnson L. How many interviews are enough?: an experiment with data saturation and variability. Field Methods. 2006;18(1):59–82.

    Article  Google Scholar 

  38. 38.

    Hardcastle SJ, Glassey R, Salfinger S, Tan J, Cohen P. Factors influencing participation in health behaviors in endometrial cancer survivors. Psycho-Oncology. 2017;26(8):1099–104.

    Article  PubMed  Google Scholar 

  39. 39.

    van Verschuer VM, Mureau MA, Gopie JP, Vos EL, Verhoef C, Menke-Pluijmers MB, et al. Patient satisfaction and nipple-areola sensitivity after bilateral prophylactic mastectomy and immediate implant breast reconstruction in a high breast cancer risk population: nipple-sparing mastectomy versus skin-sparing mastectomy. Ann Plast Surg. 2016;77(2):145–52.

    Article  PubMed  CAS  Google Scholar 

  40. 40.

    Howard MA, Sisco M, Yao K, Winchester DJ, Barrera E, Warner J, et al. Patient satisfaction with nipple-sparing mastectomy: a prospective study of patient reported outcomes using the BREAST-Q. J Surg Oncol. 2016;114(4):416–22.

    Article  PubMed  PubMed Central  Google Scholar 

  41. 41.

    Braude L, Laidsaar-Powell R, Gilchrist J, Kirsten L, Juraskova I. An exploration of Australian psychologists’ role in assessing women considering risk-reducing or contralateral prophylactic mastectomy. Breast. 2017;32:105–11.

    Article  PubMed  Google Scholar 

Download references

Acknowledgements

We thank the women who participated in this study, Genetic Services of Western Australia for their help in recruitment, and The University of Western Australia who awarded a University Postgraduate Award to a PhD student for this research. This research was supported by Register4 through its members’ participation in research and/or provision of samples and information. We wish to thank Heather Thorne, Eveline Niedermayr, the kConFab research nurses and staff, the staff of the Family Cancer Clinics, and the Clinical Follow Up Study (which received funding from the NHMRC, the National Breast Cancer Foundation, Cancer Australia, and the National Institute of Health (USA)) for their contributions to this resource, and the families who contribute to kConFab. kConFab is supported by a grant from the National Breast Cancer Foundation, and previously 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.

Author information

Affiliations

Authors

Consortia

Corresponding author

Correspondence to Rachael Glassey.

Ethics declarations

Conflict of Interest

The authors declare that they have no conflict of interest.

Appendix A. Interview Schedule

Appendix A. Interview Schedule

Can you please tell me what made you consider a BPM?

Family History/Genetic Testing

  1. 1.

    Can you tell me how your risk of developing BC was calculated and by who? (i.e family history of BC or ovarian cancer).

    • Were you offered and did you have genetic testing before your BPM?

    • If yes, what was your result?

    • Did you see a genetic counsellor or psychologist through this process?

    • What made you decide to be tested?

    • If no, why not? (i.e no living relative to be tested or personal choice).

Risk perception/cancer-related worry

  1. 2.

    Can you explain to me how you felt about your risk of developing breast cancer before your BPM?

    • Can you tell me how you feel now about the risk of BC compared to before your BPM?

    • How do you feel about the risk of BC to others in your family?

Decision making

  1. 3.

    What influenced your decision to undergo a BPM? And was this why you choose to undergo a BPM at a young age or was there something else?

    • How did you make your decision?

    • Who did you seek information from regarding a BPM before making your decision?

Information

  1. 4.

    What were you told about the surgery?

    • Was your BPM surgery what you expected?

    • Did the information you received differ from your experiences of how you felt post BPM? And if so how?

    • In hindsight, what else (if anything) would you have liked to know/have been told before you underwent your BPM?

    • Where would you like information to be available? E.g. online, a leaflet, only from a health professional. How would you like to receive information?

    • Were you asked by any of the health professionals you dealt with in relation to your BPM if you had any questions or if you understood what they were telling you?

    • Were you offered any counselling or psychological consultation throughout your BPM journey? If yes, was this helpful and how? If no, do you think this would have been helpful and how?

    • What types of information would you like to be discussed in counselling/psychological consultation?

    • Would a resource consisting of the most common issues women undergoing BPM surgery face have been helpful for you prior to your BPM?

Reconstruction

  1. 5.

    Have you had reconstruction? And if so what reconstruction did you have and why?

    • Can you tell me what influenced your choice of reconstruction surgery or prosthesis?

    • Can you tell me how you feel about that decision now?

Family/Relationships

  1. 6.

    Can you tell me about your relationship with significant others (such as spouse, children, wider family) post BPM? Has it changed at all or is it as was before your surgery?

    • Do you feel as though your BPM has changed the way others think or feel about you? And if so what makes you think this?

    • Can you describe the impact (if any) your surgery had/has had on your family?

Anxiety/Depression

  1. 7.

    Compared to before surgery how do you feel about your risk of developing BC now?

    • Compared to before surgery do you think you are less anxious?

    • How has your BPM impacted on your wellbeing overall?

Body image/Sexuality/Femininity

  1. 8.

    Can you tell me how comfortable you were with your body before your BPM?

    • Compared to before how you feel about your body after a BPM?

    • Do you feel undergoing your BPM changed the way you think or feel about yourself?

    • Can you tell me how you feel about your femininity after a BPM?

    • How do you feel about your body image since your BPM?

    • How do you feel about your sexuality since your BPM?

  2. 9.

    Compared to before your BPM have your intimate relations/sexual relations changed at all as a result of your BPM?

  3. 10.

    Taking into account all that we have discussed, overall how do you feel about undergoing your BPM?

  4. 11.

    Is there anything else you would like to add or you feel that we haven’t covered and you would like to mention?

Please note: Not all questions in this interview schedule are related to this manuscript. This interview guide was part of a wider study and other papers have been/will be published on other aspects of the study using the other questions.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Glassey, R., O’Connor, M., Ives, A. et al. Influences on Satisfaction with Reconstructed Breasts and Intimacy in Younger Women Following Bilateral Prophylactic Mastectomy: a Qualitative Analysis. Int.J. Behav. Med. 25, 390–398 (2018). https://doi.org/10.1007/s12529-018-9722-3

Download citation

Keywords

  • Body image
  • Intimacy
  • Open communication
  • Young women
  • Prophylactic mastectomy
  • Influencers