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  • Cited by 1
  • Print publication year: 2004
  • Online publication date: December 2009

13 - Patient advocate perspective on health-related quality of life issues with prostate cancer survivors


“Survivorship is the experience of living with, through or beyond cancer”


In the past 20 years, the use of prostate-specific antigen (PSA) testing to diagnose prostate cancer, and improved techniques for treating the disease, have resulted in a dramatic rise in the long-term survival rate of prostate cancer patients. Oncologists have focused on the narrow goal of shrinking (or removing) the tumor to increase the survival of cancer patients. However, from the survivors' perspective, preserving health-related quality of life (HRQOL) is the most important consideration, even more than extending life and delaying the progression of disease. It is important to keep in mind that prostate cancer is not just a disease with associated medical treatment. Beginning at the time of diagnosis and extending through treatment and beyond, survivors experience physical, emotional, and social impacts.

The purpose of this chapter is to provide the perspective of a prostate cancer survivor, based on my almost 11 years of activities as an advocate, activist, and facilitator who has observed survivors and their families in support group activities in local, regional, and national venues. The chapter tells the story, from the patient's perspective, of what it means to be a cancer survivor and the role HRQOL plays in the life of a survivor.

HRQOL from the survivor's perspective

A review of the literature reveals that, when surveyed about their HRQOL, most survivors and their clinicians focus on the physical symptoms and limitations imposed by cancer and its treatments.

Leigh, S. (1996). Defining our destiny. In Cancer Survivor's Almanac: Charting the Journey, ed. B. A. Hoffman, pp. 261–71. Minneapolis, MN: Chronimed Publishing
Schneider, M. (2002). Quality of life (Editorial)CancerFutures, March 2002, p. 1
Leitman, R. (1995). Perspectives on prostate cancer treatments, awareness, attitudes and relationshipsIn A Study of Patients and Urologists, p. 3. Lewis Harris and Associates, July 31—August 17, 1995
Zebrack, B. (2000). How you can achieve quality of life after a cancer diagnosis. Coping, March/April 2000, p. 13
Hughes, M. K. (1997). Sexuality issues of the cancer survivorCoping, March/April: 51
Hughes, M. K. (1996). Sexuality issues: keeping your cookOncology Nursing Forum 23 (10):1595–600
D'Amico, A. V., Whittington, R., Malkowicz, S. al. (1998). Biochemical outcome after radical prostatectomy, external beam radiation therapy, or interstitial radiation therapy for clinically localized prostate cancerJournal of the American Medical Association 280 (11):969–74
Leigh, S. A., Williams, J. E. Jr., Stoval, E. (1998). Survivorship: from the moment of diagnosisCancer 83 (Suppl. 8):1710–13