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Exploring the experience of recurrence with advanced cancer for people who perceived themselves to be cancer free: a grounded theory study

Abstract

Purpose

Advances in cancer treatment have led to longer cancer-free periods and overall survival. This study aimed to understand patients’ experiences of transitioning out of a state of believing to be cancer free into incurable recurrence with advanced disease.

Methods

Using constructivist grounded theory with in-depth interviews patients (n = 15) with solid tumors from a major US cancer center participated. Theoretical sampling enabled concepts to be developed until theme saturation. Constant comparative analysis used initial and focused coding to develop themes and concepts to describe this specific period from extended time cancer free and transition to advanced incurable disease.

Results

Three interrelated concepts were identified: reluctant acceptance, seeking survival through continuous treatment, and hope in the face of an uncertain future. A conceptual model of the experience was developed encompassing anger and sadness, at initial recurrence, to reluctant acceptance, and, finally, a cycle of seeking continuous treatment to prolong life leading to a sense of hope in the face of an uncertain future.

Conclusion

The cycle between treatment and hope creates a state of personal equilibrium, which provides insights into the importance of treatment for this population. This study provides direction for future research to understand the expectations of people experiencing advanced cancer recurrence.

Implications for cancer survivors

Many cancer survivors live with advanced cancer. Assessing their needs as they transition from survivor with no disease to survivor with advanced disease requires a new conceptualization of the experience which recognizes expectations and priorities for care of this patient group.

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Data availability

The datasets generated and analyzed during the current study are available from the corresponding author on reasonable request.

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Acknowledgments

The authors would like to thank Betty Ferrell, PhD, FAAN, FPCN, Professor and Director of Nursing Research City of Hope Medical Center, and Daniela Baroffio, PhD, from the Annenberg School for Communication & Journalism, University of Southern California.

Author information

Authors and Affiliations

Authors

Contributions

Conceptualization of this study was by Denice Economou as this was her dissertation work for her PhD. Her supervisors and co-authors are Dr. Catherine Walshe and Dr. Sarah Brearley from Lancaster University in Lancaster, England. Formal analysis began with Denice Economou and was reviewed, discussed, and modified as appropriate under the supervision of Catherine Walshe and Sarah Brearley.

Corresponding author

Correspondence to Denice Economou.

Ethics declarations

The study was performed in line with the Principles of the Declaration of Helsinki. Approval was granted by the Ethics Committee of the City of Hope, Duarte, California as well as the Faculty of Health and Medicine Research Ethics Committee (FHMREC) at Lancaster University in Lancaster, England. (also listed in the manuscript pg. 4).

Informed consent

Informed written consent was obstained from all individual participants included in this study. (manuscript pg. 4).

Conflict of interest

The authors declare that they have no conflict of interest.

Code availability

Atlas TI was used to help organize the line by line coding data.

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Economou, D., Walshe, C. & Brearley, S.G. Exploring the experience of recurrence with advanced cancer for people who perceived themselves to be cancer free: a grounded theory study. Support Care Cancer 29, 3885–3894 (2021). https://doi.org/10.1007/s00520-020-05956-2

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  • DOI: https://doi.org/10.1007/s00520-020-05956-2

Keywords

  • Advanced cancer
  • Advanced recurrence
  • Continuous treatment
  • Hope
  • Uncertainty
  • Survival
  • Reluctant acceptance