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



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.


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.


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.


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.

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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.

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Corresponding author

Correspondence to Rachael Glassey.

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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?


  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?


  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?


  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?


  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.

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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).

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