Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

  • Science and Society
  • Published:

Perspectives of a lifelong cancer survivor—improving survivorship care

Abstract

Many of the 14 million cancer survivors in the USA live with physical, emotional and day-to-day concerns related to their cancer long after their treatment ends. Addressing the needs of the growing cancer-survivor population will be a considerable task. In this article, Ruth Rechis—a 20-year survivor of Hodgkin lymphoma—describes her personal account of surviving cancer and her experience as a researcher and advocate in the field of survivorship. Results from a national USA survey on survivorship are shared, illustrating gaps in meeting the needs of long-term survivors. A list of 'essential elements' of survivorship care is highlighted to introduce all practitioners to the components necessary for the provision of care after treatment ends. Finally, Rechis provides recommendations for engaging survivors as active participants in their post-treatment, long-term survivorship care and to ensure appropriate care is universally available as part of patient-centred comprehensive care.

This is a preview of subscription content, access via your institution

Access options

Buy this article

Prices may be subject to local taxes which are calculated during checkout

Figure 1: Percentage of adult post-treatment cancer survivors who reported physical, emotional and practical concerns.17

References

  1. Bhatia, S. et al. High risk of subsequent neoplasms continues with extended follow-up of childhood Hodgkin's disease: report from the Late Effects Study Group. J. Clin. Oncol. 21, 4386–4394 (2003).

    Article  Google Scholar 

  2. Ibrahim, E. M. et al. Risk of second breast cancer in female Hodgkin's lymphoma survivors: a meta-analysis. BMC Cancer 12, 197 (2012).

    Article  Google Scholar 

  3. Children's Oncology Group Nursing Discipline Clinical Practice Subcommittee/Survivorship in collaboration with the Late Effects Committee. Establishing and Enhancing Services for Childhood Cancer Survivors: Long-Term Follow-Up Program Resource Guide [online], (2007).

  4. American Cancer Society. Cancer Treatment and Survivorship Facts & Figures 2012–2013 [online], (2012).

  5. Hewitt, M., Greenfield, S. & Stovall, E. From Cancer Patient to Cancer Survivor: Lost in Transition (National Acadamies Press, Washington, DC, 2005).

    Google Scholar 

  6. Harrington, C. B., Hansen, J. A., Moskowitz, M., Todd, B. L. & Feuerstein, M. It's not over when it's over: long-term symptoms in cancer survivors—a systematic review. Int. J. Psychiatry Med. 40, 163–181 (2010).

    Article  Google Scholar 

  7. Stanton, A. L. What happens now? Psychosocial care for cancer survivors after medical treatment completion. J. Clin. Oncol. 30, 1215–1220 (2012).

    Article  Google Scholar 

  8. Stanton, A. L. et al. Promoting adjustment after treatment for cancer. Cancer 104 (Suppl. 11), 2608–2613 (2005).

    Article  Google Scholar 

  9. Aziz, N. M. in Cancer Survivorship: Today and Tomorrow (ed. Ganz, P. A.) 54–76 (Springer, New York, 2007).

    Book  Google Scholar 

  10. Ganz, P. A. Late effects of cancer and its treatment. Semin. Oncol. Nurs. 17, 241–248 (2001).

    Article  CAS  Google Scholar 

  11. Ganz, P. A. Survivorship: adult cancer survivors. Prim. Care 36, 721–741 (2009).

    Article  Google Scholar 

  12. Rechis, R. et al. How cancer has affected post-treatment survivors: A LIVESTRONG Report [online], (2006).

    Google Scholar 

  13. Stricker, C. T. & Jacobs, L. A. Physical late effects in adult cancer survivors. Oncology (Williston Park) 22 (Suppl. 8), 33–41 (2008).

    Google Scholar 

  14. Ganz, P. A., Rowland, J. H., Desmond, K., Meyerowitz, B. E. & Wyatt, G. E. Life after breast cancer: understanding women's health-related quality of life and sexual functioning. J. Clin. Oncol. 16, 501–514 (1998).

    Article  CAS  Google Scholar 

  15. Stanton, A. L., Revenson, T. A. & Tennen, H. Health psychology: psychological adjustment to chronic disease. Annu. Rev. Psychol. 58, 565–592 (2007).

    Article  Google Scholar 

  16. Kirchhoff, A. C. Late-Term Effects and Employment Outcomes for Cancer Survivors. Thesis, University of Washington (2009).

    Google Scholar 

  17. Rechis, R., Reynolds, K. A., Beckjord, E. B. & Nutt, S. “I Learned To Live With It” is Not Good Enough: Challenges Reported by Post-Treatment Cancer Survivors in the LIVESTRONG Surveys: a LIVESTRONG Report [online], (2010).

    Google Scholar 

  18. Ganz, P. A. et al. Breast cancer survivors: psychosocial concerns and quality of life. Breast Cancer Res. Treat. 38, 183–199 (1996).

    Article  CAS  Google Scholar 

  19. Ganz, P. A. Monitoring the physical health of cancer survivors: a survivorship-focused medical history. J. Clin. Oncol. 24, 5105–5111 (2006).

    Article  Google Scholar 

  20. Weaver, K. E. et al. Mental and physical health-related quality of life among U. S. cancer survivors: population estimates from the 2010 National Health Interview Survey. Cancer Epidemiol. Biomarkers Prev. 21, 2108–2117 (2012).

    Article  Google Scholar 

  21. Rowland, J. H., Hewitt, M. & Ganz, P. A. Cancer survivorship: a new challenge in delivering quality cancer care. J. Clin. Oncol. 24, 5101–5104 (2006).

    Article  Google Scholar 

  22. Horning, S. J. Follow-up of adult cancer survivors: new paradigms for survivorship care planning. Hematol. Oncol. Clin. North Am. 22, 201–210 (2008).

    Article  Google Scholar 

  23. Grunfeld, E. Cancer survivorship: a challenge for primary care physicians. Br. J. Gen. Pract. 55, 741–774 (2005).

    PubMed  PubMed Central  Google Scholar 

  24. Bober, S. L. et al. Caring for cancer survivors. Cancer 115 (Suppl. 18), 4409–4418 (2009).

    Article  Google Scholar 

  25. Potosky, A. L. et al. Differences between primary care physicians' and oncologists' knowledge, attitudes and practices regarding the care of cancer survivors. J. Gen. Intern. Med. 26, 1403–1410 (2011).

    Article  Google Scholar 

  26. Jacobs, L. A. et al. Adult cancer survivorship: Evolution, research, and planning care. CA Cancer J. Clin. 59, 391–410 (2009).

    Article  Google Scholar 

  27. Howell, D. et al. Models of care for post-treatment follow-up of adult cancer survivors: A systematic review and quality appraisal of the evidence. J. Cancer Surviv. http://dx.doi.org/10.1007/s11764-012-0232-z.

  28. Hahn, E. E. & Ganz, P. A. Survivorship programs and care plans in practice: variations on a theme. J. Oncol. Pract. 7, 70–75 (2011).

    Article  Google Scholar 

  29. Campbell, M. K. et al. Adult cancer survivorship care: experiences from the LIVESTRONG centers of excellence network. J. Cancer Surviv. 5, 271–282 (2011).

    Article  Google Scholar 

  30. Grunfeld, E. & Earle, C. C. The interface between primary and oncology specialty care: treatment through survivorship. J. Natl Cancer Inst. Monogr. 2010, 25–30 (2010).

    Article  Google Scholar 

  31. Landier, W. Survivorship care: essential components and models of delivery. Oncology (Williston Park) 23 (Suppl. 4), 46–53 (2009).

    Google Scholar 

  32. Chubak, J. et al. Providing care for cancer survivors in integrated health care delivery systems: practices, challenges, and research opportunities. J. Oncol. Pract. 8, 184–189 (2012).

    Article  Google Scholar 

  33. Shalom, M. M., Hahn, E. E., Casillas, J. & Ganz, P. A. Do survivorship care plans make a difference? A primary care provider perspective. J. Oncol. Pract. 7, 314–318 (2011).

    Article  Google Scholar 

  34. Casillas, J. et al. How confident are young adult cancer survivors in managing their survivorship care? A report from the LIVESTRONG Survivorship Center of Excellence Network. J. Cancer Surviv. 5, 371–381 (2011).

    Article  Google Scholar 

  35. Beckjord, E. B. et al. What do people affected by cancer think about electronic health information exchange? Results from the 2010 LIVESTRONG Electronic Health Information Exchange Survey and the 2008 Health Information National Trends Survey. J. Oncol. Pract. 7, 237–247 (2011).

    Article  Google Scholar 

  36. Eshelman, D. et al. Facilitating care for childhood cancer survivors: integrating Children's Oncology Group long-term follow-up guidelines and health links in clinical practice. J. Pediatr. Oncol. Nurs. 21, 271–280 (2004).

    Article  Google Scholar 

  37. Nathan, P. C. et al. Guidelines for identification of, advocacy for, and intervention in neurocognitive problems in survivors of childhood cancer: a report from the Children's Oncology Group. Arch. Pediatr. Adolesc. Med. 161, 798–806 (2007).

    Article  Google Scholar 

  38. Seehusen, D. A., Baird, D. & Bode, D. Primary care of adult survivors of childhood cancer. Am. Fam. Physician 81, 1250–1255 (2010).

    PubMed  Google Scholar 

  39. Skinner, R. et al. Long-term follow-up of people who have survived cancer during childhood. Lancet Oncol. 7, 489–498 (2006).

    Article  Google Scholar 

  40. Children's Oncology Group. COG Research Collaborations [online].

  41. National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care, Second Edition [online], (2009).

  42. Nekhlyudov, L. & Schnipper, J. L. Cancer survivorship care plans: what can be learned from hospital discharge summaries? J. Oncol. Pract. 8, 24–29 (2012).

    Article  Google Scholar 

  43. Earle, C. C. & Ganz, P. A. Cancer survivorship: don't let perfect be the enemy of good. J. Clin. Oncol. 30, 3764–3768 (2012).

    Article  Google Scholar 

  44. Rechis, R., Beckjord, E. B., Arvey, S. R., Reynolds, K. A. & McGoldrick, D. The Essential Elements of Survivorship Care: A LIVESTRONG Brief [online], (2011).

    Google Scholar 

  45. Grunfeld, E. et al. Evaluating survivorship care plans: results of a randomized, clinical trial of patients with breast cancer. J. Clin. Oncol. 29, 4755–4762 (2011).

    Article  Google Scholar 

  46. Stricker, C. T., Jacobs, L. A. & Palmer, S. C. Survivorship care plans: an argument for evidence over common sense. J. Clin. Oncol. 30, 1392–1395 (2012).

    Article  Google Scholar 

  47. Salz, T., Oeffinger, K. C., McCabe, M. S., Layne, T. M. & Bach, P. B. Survivorship care plans in research and practice. CA Cancer J. Clin. 62, 101–117 (2012).

    Article  Google Scholar 

  48. Stricker, C. T. et al. Survivorship care planning after the Institute of Medicine recommendations: how are we faring? J. Cancer Surviv. 5, 358–370 (2011).

    Article  Google Scholar 

  49. Earle, C. C. Failing to plan is planning to fail: Improving the quality of care with survivorship care plans. J. Clin. Oncol. 24, 5112–5116 (2006).

    Article  Google Scholar 

  50. Earle, C. C. Long term care planning for cancer survivors: a health services research agenda. J. Cancer Surviv. 1, 64–74 (2007).

    Article  Google Scholar 

Download references

Acknowledgements

R. Rechis would like to acknowledge and thank the LIVESTRONG Survivorship Center of Excellence Network for their substantial contribution to the Essential Elements of Survivorship Care Project.

Author information

Authors and Affiliations

Authors

Contributions

This article was written in the first person by R. Rechis. S. Arvey and E. B. Beckjord researched the scientific data for the article and helped to support the writing and review. All authors edited the manuscript before submission.

Corresponding author

Correspondence to Ruth Rechis.

Ethics declarations

Competing interests

The authors declare no competing financial interests.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Rechis, R., Arvey, S. & Beckjord, E. Perspectives of a lifelong cancer survivor—improving survivorship care. Nat Rev Clin Oncol 10, 117–120 (2013). https://doi.org/10.1038/nrclinonc.2012.212

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1038/nrclinonc.2012.212

This article is cited by

Search

Quick links

Nature Briefing: Cancer

Sign up for the Nature Briefing: Cancer newsletter — what matters in cancer research, free to your inbox weekly.

Get what matters in cancer research, free to your inbox weekly. Sign up for Nature Briefing: Cancer