Activism among exceptional patients with cancer

Abstract

Background

The “exceptional patients” with cancer are survivors who had advanced cancer considered incurable by medical report and who subsequently became disease-free or experienced unexplained survival time given the nature of their disease or treatment. This experience is a puzzling phenomenon that has not been formally investigated in a cancer population. The purpose of this study was to understand exceptional patients’ accounts of their experience.

Materials and methods

This study used a narrative approach with a cross-case thematic analysis. Recruitment took place at health care centers in the USA and Israel. Oncologists in both centers were asked to identify patients who had an exceptional disease course. Patients were then contacted and interviewed; an audio recording was made of each narrative account and then transcribed. Interviews and thematic analyses were conducted independently at each site. These thematic findings from each site were discussed with both research teams and a common underlying theme was identified, which is the focus of this report.

Results

Twenty-six participants were interviewed: 14 from the USA and 12 from Israel. All the participants have had advanced disease with a range of diagnoses that included breast, colorectal, pancreatic, ovarian cancer, glioblastoma multiforme, and others. The main recurrent theme from both the US and Israeli sites was personal activism. This was manifested in taking charge and getting involved in the process of diagnosis and treatment, as well as becoming more altruistic in their relationships with others. In many cases, this was reflected in a change in a philosophy about life

Conclusions

In this study, we found that activism was a major theme that was independently observed in both Israel and the USA. This has implications for health care providers to facilitate patient engagement in the care and treatment of their disease. Further research on this phenomenon is needed.

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Acknowledgments

The authors would like to thank all the patients who participated in this study and were open and willing to share their stories so others can benefit and all the physicians and support staff in both institutions, Tel Aviv Medical Center and MD Anderson Cancer Center, who helped this work to be a possible reality.

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Correspondence to Moshe Frenkel.

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Frenkel, M., Ari, S.L., Engebretson, J. et al. Activism among exceptional patients with cancer. Support Care Cancer 19, 1125–1132 (2011). https://doi.org/10.1007/s00520-010-0918-6

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Keywords

  • Exceptional patient
  • Spontaneous regression
  • Remarkable recovery
  • Spontaneous remission
  • Cancer care
  • Hope
  • Activism
  • Resilience
  • Cancer survivorship