Living post treatment: definitions of those with history and no history of cancer

Abstract

Introduction: Breast cancer is the leading cause of cancer, and the second leading cause of cancer death in women. Due to advances in medicine, the 10 year survival rate is 80%, resulting in a large and growing number of breast cancer survivors. Definitions of cancer survivorship from a number of professional organizations and researchers vary, but the research is scant on the meaning of cancer survivorship to people with and without a prior cancer history. Methods: Two studies were conducted (1) to compare individuals with and without a prior personal cancer diagnosis in terms of those who identified as survivors vs. those who did not identify as survivors and (2) to explore explanations of those with and without a prior personal cancer for the term cancer survivor. In Study 1, individuals were surveyed at cancer-themed community health fairs. In Study 2, women were surveyed at a breast oncology clinic. Results: In Study 1 comparing those with and without a prior cancer diagnosis, prior cancer history was the best predictor of survivorship identity, and only three individuals without a prior cancer history included family and friends as survivors. In Study 2 of those with a personal history, longer time since diagnosis, type of cancer (ductal), and comparative risk (higher) were associated with survivor identity. Conclusion: Completion of treatment was seen as a ‘rite of passage’, and thus, may be seen as a shift from the patient identity, which may have negative connotations, to the positive identity of survivor. Implications: Definitions of survivorship vary considerably, and caution should be used when applying the term to those who have no prior personal cancer diagnosis and to those who have had a more recent cancer diagnosis with a more severe disease course.

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References

  1. 1.

    American Cancer Society. Cancer facts & figures 2010. Atlanta: American Cancer Society; 2010.

    Google Scholar 

  2. 2.

    Institute of Medicine and National Research Council of the National Academies. In: Hewitt M, Ganz PA, editors. From cancer patient to cancer survivor: lost in transition. Washington: The National Academies Press; 2006.

    Google Scholar 

  3. 3.

    Leigh S. Cancer survivorship: a consumer movement. Semin Oncol. 1994;21(6):783–6.

    PubMed  CAS  Google Scholar 

  4. 4.

    Ganz PA, editor. Cancer survivorship: today and tomorrow. New York: Springer; 2007.

    Google Scholar 

  5. 5.

    Mullan F. Seasons of survival: reflections of a physician with cancer. N Engl J Med. 1985;313(4):270–3.

    PubMed  Article  CAS  Google Scholar 

  6. 6.

    Zebrack BJ. Cancer survivor identity and quality of life. Cancer Pract. 2000;8(5):238–42.

    PubMed  Article  CAS  Google Scholar 

  7. 7.

    Leighl N, Gattellari M, Butow P, et al. Discussing adjuvant cancer therapy. J Clin Oncol. 2001;19(6):1768–78.

    PubMed  CAS  Google Scholar 

  8. 8.

    Leigh S, Logan C. The cancer survivorship movement. Cancer Investig. 1991;9(5):571–9.

    Article  CAS  Google Scholar 

  9. 9.

    Vivar CG, McQueen A. Informational and emotional needs of long-term survivors of breast cancer. J Adv Nurs. 2005;51(5):520–8.

    PubMed  Article  Google Scholar 

  10. 10.

    Clark EJ, Stovall EL. Advocacy: the cornerstone of cancer survivorship. Cancer Pract. 1996;4(5):239–44.

    PubMed  CAS  Google Scholar 

  11. 11.

    Doyle N. Cancer survivorship: evolutionary concept analysis. J Adv Nurs. 2008;62(4):499–509.

    PubMed  Article  Google Scholar 

  12. 12.

    Welch-McCaffrey D, Hoffman B, Leigh SA, Loescher LJ, Meyskens Jr FL. Surviving adult cancers. Part 2: Psychosocial implications. Ann Intern Med. 1989;111(6):517–24.

    PubMed  CAS  Google Scholar 

  13. 13.

    Twombly R. What's in a name: who is a cancer survivor? J Natl Cancer Inst. 2004;96(19):1414–5.

    PubMed  Google Scholar 

  14. 14.

    Feuerstein, M. Defining cancer survivorship. J Cancer Surviv. 2007; 1 (1):5-7.

    Google Scholar 

  15. 15.

    Bellizzi KM, Blank TO. Cancer-related identity and positive affect in survivors of prostate cancer. J Cancer Surviv. 2007;1(1):44–8.

    PubMed  Article  Google Scholar 

  16. 16.

    Deimling GT, Kahana B, Schumacher J. Life threatening illness and identity: the transition from victim to survivor. J Aging Ident. 1997;2(3):165–86.

    Google Scholar 

  17. 17.

    Deimling GT, Bowman KF, Wagner LJ. Cancer survivorship and identity among long-term survivors. Cancer Investig. 2007;25(8):758–65.

    Article  Google Scholar 

  18. 18.

    Park CL, Zlateva I, Blank TO. Self-identity after cancer: "survivor", "victim", "patient", and "person with cancer". J Gen Intern Med. 2009;24 Suppl 2:S430–5.

    PubMed  Article  Google Scholar 

  19. 19.

    Kaiser K. The meaning of the survivor identity for women with breast cancer. Soc Sci Med. 2008;67(1):79–87.

    PubMed  Article  Google Scholar 

  20. 20.

    Little M, Paul K, Jordens CF, Sayers EJ. Survivorship and discourses of identity. Psycho-Oncology. 2002;11(2):170–8.

    PubMed  Article  Google Scholar 

  21. 21.

    Kelly KM, Porter K, Remy A, Westman JA. Promotion of cancer family history awareness: Jameslink cancer risk assessment tool at community health fairs. J Genet Couns. 2008;17(3):274–82.

    PubMed  Article  Google Scholar 

  22. 22.

    Abrams, J. Cancer Control Continuum. http://cancercontrol.cancer.gov/od/continuum.html. Accessed: 10/15/10.

  23. 23.

    Katz J. From how to why: on luminous description and causal inference in ethnography (part 1). Ethnography. 2001;2(4):443–73.

    Google Scholar 

  24. 24.

    Borkan J. Immersion/Crystallization. In: Crabtree BF, Miller WL, editors. Doing qualitative research. Thousand Oaks: Sage; 1999. p. 179–94.

    Google Scholar 

  25. 25.

    Merriam SB. Assessing and evaluating qualitative research. In: Merriam SB, editor. Qualitative research in practice: examples for discussion and analysis. San Francisco: Jossey-Bass; 2002. p. 18–33.

    Google Scholar 

  26. 26.

    Geertz C. The interpretation of cultures: selected essays. New York: Basic Books; 1973.

    Google Scholar 

  27. 27.

    Case DO, Johnson D, Andrews JE, Allard SL, Kelly KM. From two-step flow to the internet: the changing array of sources for genetics information seeking. J Am Soc Inform Sci Tech. 2004;55(8):660–9.

    Article  Google Scholar 

  28. 28.

    Kelly KM, Andrews JE, Case DO, Allard SL, Johnson JD. Information seeking and intentions to have genetic testing for hereditary cancers in rural and Appalachian Kentuckians. J Rural Health. 2007;23(2):166–72.

    PubMed  Article  Google Scholar 

  29. 29.

    Lerman C, Kash K, Stefanek M. Younger women at increased risk for breast cancer: perceived risk, psychological well-being, and surveillance behavior. J Natl Cancer Inst Monogr. 1994;16:171–6.

    PubMed  Google Scholar 

  30. 30.

    Kelly K, Leventhal H, Andrykowski M, et al. Using the common sense model to understand perceived cancer risk in individuals testing for BRCA1/2 mutations. Psycho-Oncology. 2005;14(1):34–48.

    PubMed  Article  Google Scholar 

  31. 31.

    Leventhal H, Benyamini Y, Brownlee S, et al. Illness representation: theoretical foundations. In: Petrie KJ, Weinman JA, editors. Perceptions of health and illness. London: Harwood; 1997. p. 19–45.

    Google Scholar 

  32. 32.

    Charmaz K. Loss of self: a fundamental form of suffering in the chronically ill. Sociol Health Illn. 1983;5(2):168–95.

    PubMed  Article  CAS  Google Scholar 

  33. 33.

    Goffman E. The presentation of self in everyday life. New York: Anchor Books; 1959.

    Google Scholar 

  34. 34.

    Goffman E. Stigma: notes on the management of spoiled identity. New York: Simon & Schuster; 1963.

    Google Scholar 

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Acknowledgements

Funding for this project was received from the Ohio Division of the American Cancer Society. We would also like to acknowledge Raquel Tobian, BS; Jaymia Mitchell, PhD; and Margaret Kuder, BS for their assistance in data collection and literature searches.

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Correspondence to Kimberly M. Kelly.

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Kelly, K.M., Shah, N., Shedlosky-Shoemaker, R. et al. Living post treatment: definitions of those with history and no history of cancer. J Cancer Surviv 5, 158–166 (2011). https://doi.org/10.1007/s11764-010-0167-1

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Keywords

  • Cancer
  • Oncology
  • Survivorship
  • Psychosocial
  • Identity