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The untold story of late effects: a qualitative analysis of breast cancer survivors’ emotional responses to late effects

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Abstract

Purpose

Breast cancer survivors are at increased risk of adverse outcomes, called late effects, years after the completion of active treatment. Late effects can significantly impair physical functioning. The current study aimed to explore breast cancer survivors’ experiences of late effects, their emotional responses to existing or potential late effects and their perceived impact.

Methods

A total of 36 women treated for breast cancer in the last 10 years participated in semi-structured telephone interviews. Participant views were sought with respect to knowledge, experience, and perceived longer-term risk. A thematic analysis was conducted.

Results

Four themes emerged from the data: (1) late effects awareness, (2) framing and coping, (3) uncertainty and (4) management. There was a range of emotional responses to late effects; however, many participants reported being unaware of their risk of late effects. Participants conceptualised late effects as any long-term effect of treatment regardless of the time of onset. Women reported living with constant uncertainty and feared cancer recurrence. Many were focused on managing long-term treatment side effects, rather than late effects.

Conclusion

Many women undergo treatment and remain unaware of associated late effect risks. National guidelines recommend patients be informed about late effects; however, the results of this study suggest a gap between policy and practice. Evidence-based interventions are needed to equip women with strategies to physically and emotionally manage late effects.

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Data availability

Interview schedule and participant quotations are provided in Online Resource 1 and Online Resource 3, respectively.

Code availability

Not applicable.

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Acknowledgements

Participants in this research were recruited from Breast Cancer Network Australia’s (BCNA) Review & Survey Group, a national, online group of Australian women affected by breast cancer who are interested in receiving invitations to participate in research. We acknowledge the contribution of the women involved in the Review & Survey Group who participated in this project. We also acknowledge the contribution of Profs. Bobby Zachariae and Birgitte Offersen, Aarhus University, in discussing the need for this project at its inception.

Author information

Authors and Affiliations

  1. School of Psychology, Faculty of Science, The University of Sydney, Sydney, NSW, Australia

    Jodie Rosenberg, Phyllis N. Butow & Joanne M. Shaw

  2. Psycho-Oncology Co-Operative Research Group, School of Psychology, Faculty of Science, The University of Sydney, Sydney, NSW, Australia

    Jodie Rosenberg, Phyllis N. Butow & Joanne M. Shaw

Authors
  1. Jodie Rosenberg
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  2. Phyllis N. Butow
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  3. Joanne M. Shaw
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Contributions

Dr. Shaw and Dr. Butow conceived the presented idea in collaboration with Danish colleagues. Jodie Rosenberg developed the theory, collected the data and performed the analysis under the supervision of Dr. Shaw. All authors discussed the results and contributed to the final manuscript.

Corresponding author

Correspondence to Jodie Rosenberg.

Ethics declarations

Ethics approval

The University of Sydney Human Research Ethics Committee approved the current study, project number 2019/376, on 29 May 2019.

Consent to participate

After reading the PIS, participants consented to the survey by ticking a box on the first page of the Qualtrics survey. Participants consented to participating in a telephone interview by voluntarily providing their contact details on the last page of the online survey. Participants verbally consented before the interview commenced.

Consent for publication

Participants consented to publication by ticking the consent box after reading the following in the PIS, ‘Study findings may be published but you will not be identifiable in these publications’.

Conflict of interest

The authors declare no competing interests.

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Rosenberg, J., Butow, P.N. & Shaw, J.M. The untold story of late effects: a qualitative analysis of breast cancer survivors’ emotional responses to late effects. Support Care Cancer 30, 177–185 (2022). https://doi.org/10.1007/s00520-021-06402-7

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  • DOI: https://doi.org/10.1007/s00520-021-06402-7

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