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Originally published as JCO Early Release 10.1200/JCO.2007.12.1996 on July 16 2007 © 2007 American Society of Clinical Oncology.
Prostate Cancer Quality of Life: Beyond Initial Treatment—and the Patient
Center for Outcomes Research, Massachusetts General Hospital Cancer Center, Massachusetts General Hospital and Harvard Medical School, Boston, MA The clinical course of cancer produces the illusion of discontinuity, and the distortion can harm treatment decision making. Most cancers grow for years to achieve a size sufficient for symptoms, screening, or serendipitous test results to draw attention to it. However long in coming, a cancer diagnosis arrives as a thunderbolt, kicking off a disorienting frenzy of testing, consultation, and treatment. The aftermath depends on the cancer's response. Progressive cancer is a batterer, provoking treatment counterpunches on behalf of the patient, with the family's support.1,2 But they must come to an accommodation with it, their eventual acquiescence variably admixed with grace and peace, but at great emotional cost,3 and too often disastrously late to benefit from hospice and other palliative care.4 For the fortunate patient with a complete remission, usually with surgery as part of treatment, the reverberations of treatment eventually die down. Fear of cancer gives way to thanks for its departure, and hope that it will not return seeps in, with cure becoming conviction in time. Biologically, recurrent cancer simply extends the primary tumor's relentless, occult growth, albeit displaced. Too often, it clinically reprises the initial surprise attack, triggering a new, urgent round of tests and consultations that echoes the first. It needn't be like that. Because of its scale, cancer recurrence is, like primary carcinogenesis, unseen, but it should be foreseen, at least as a possibility. Too often, we do not confront it. In part, we are distracted, first by the turbulence surrounding diagnosis and later by the headiness of remission. But we are distracted willingly, preferring that cancer recurrence, like other dire prospects, remains out of sight. In the ideal world we prefer to inhabit, contingency plans are unnecessary. However, not having one can prove costly when we are forced to improvise, as contemporary events have proved. Illusion has a price tag. In cancer, the price may be aggressive, toxic treatment for too long. A cancer's later chapters—recurrence and progression—are biologically linked to the original diagnosis, and also by the stress it ladles onto the patient and his support structure. Stress arrives with the finding that prompts the biopsy, achieves full force when the pathology result returns positive, and persists while the initial treatment plan is articulated, explained, and consented. Most patients experience relief once treatment begins, as the burden of decision lifts, adverse effects do not match their darkest fears, and stress eases. But new episodes of recurrence or progression may reprise it in full force, particularly if the patient allowed the assumption that the previous episode would be the last. Bad news is never welcome, but being prepared can often soften the blow. Prostate cancer adds a wrinkle to typical cancer follow-up. Cancer patients are generally blind to recurrence until a scan or symptom reveals it. However, each prostate cancer follow-up visit produces a blood test, prostate-specific antigen (PSA), which indirectly indicates whether prostate cancer persists. Increasingly often, clinically insignificant PSA variation5 or significant levels rising years before their predictions are redeemed by symptoms6 may get a prostate cancer patient castrated.7 The patient is the main focus of all this activity; after all, he is the one with the disease. If the prostate cancer patient is fortunate enough to have a partner (usually a woman), her role is supportive of this crisis.8 The role is important: Social support improves patient outcomes in prostate cancer,9,10 and most other cancers.11,12 However, the partner is affected, too. Cancer casts the shadow of death into each life it touches, lighter or darker as clinical events (or the passage of time) improve prognosis or make it grimmer. But it also causes specific symptoms. The treatment of prostate cancer, along with some other pelvic cancers, such as cervical, bladder, and rectal cancer,13-15 affects sexual function and, thus, the patient's partner. Roughly two thirds of prostate cancer patients undergoing primary treatment experience severe erectile dysfunction, regardless of modality, although the timing varies, with surgery acting immediately and radiation eroding potency over time.16-19 The report by Northouse et al20 in this issue of the Journal of Clinical Oncology draws much-needed attention to both prostate cancer's longitudinal clinical course, which they parse into treatment "phases," and its impact on the patient's crucial relationship with his partner, or the "dyad," in sociological jargon. Using baseline data from a trial of a family intervention to assist patients and spouses, it examines phase effects (newly diagnosed, biochemical recurrence—the PSA no-man's land—and advanced) and role effects (patient v spouse) from several perspectives: quality of life, appraisal of illness (threat, uncertainty, hopelessness), resources (self-efficacy, communication, social support), symptoms, and risk for distress. Descriptive studies often do best with a "just the facts" approach, reporting findings with little comment, leaving it to the interested reader (and reviewer) to speculate on them. Inevitably, in what might be called sociological tourism, we are drawn to the oddities. First the facts. Once we adopt the study's perspective, it generally confirms expectations. Patients experience more physical effects than do partners. The experience is worse in each successively more advanced phase. Patients and spouses in the advanced phase, with either hormonal therapy or, still more worrisome and toxic, chemotherapy, scored worse by all measures compared with newly diagnosed dyads, with biochemical recurrence, signaling both incurable cancer but also years before symptoms from metastases, in the middle. The investigators found that biochemical recurrence produced emotional, not physical deficits. Unsurprisingly, but unfortunately, partners received less social support than did patients. Now the oddities and the speculation. Patients with advanced prostate cancer reported more social support when receiving hormone-refractory treatment, commonly cytotoxic chemotherapy, than when receiving the hormonal treatments administered to hormone-naïve patients. Does this reflect the request of a more fearful, symptomatic patient or the spontaneous response of others? Is the trigger the evident toxicity of chemotherapy, the dire prognosis of hormone-refractory prostate cancer, or both? Regardless, the result provides evidence that social support comes more readily to those most obviously in extremis. The response is correct in the later event, but suggests an earlier oversight. Patients who do have cancer report more self-efficacy, or control over their lives, than do spouses. They face a bitter foe, difficult decisions and an array of symptoms, but at least do it on their own terms. For spouses, duty calls, and obligation does not always come with information and conviction. Spouses report more uncertainty, especially in biochemical recurrence, the stage defined only by a blood test. The term itself breeds confusion: Why is PSA referred to as "biochemical," and not a blood test or biomarker? Even physicians, whose biochemistry is generally a little rusty, could be forgiven, wondering which biologic molecule isn't biochemical? Spouses may aim too high if they expect to understand this ambiguous phrase and phase. These insights suggest the benefit of looking beyond the biology of prostate cancer to how the patient and those who support him experience it. Thinking in terms of clinical phases is a starting point for thinking of the disease as a unitary process, not as a series of unrelated, often unfortunate, events. Crises tend to reproduce themselves, and our reactions to them. Fighting the last war, always suspect, is most dangerous when later warriors fail to notice that the goal has changed. If physicians and patients approach prostate cancer in the palliative phase, when cure is not a reasonable target, as they did when it was localized and potentially curable, they may be too willing to use weapons with undue ferocity. Certainly, recognizing that cancer affects partners, not just cancer patients, will benefit everyone: the patient, those at bat for him clinically, and those carrying the ball the rest of the time. AUTHOR'S DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST The author(s) indicated no potential conflicts of interest. NOTES published online ahead of print at www.jco.org on July 16, 2007. REFERENCES
1. Emanuel EJ, Young-Xu Y, Levinsky NG, et al: Chemotherapy use among Medicare beneficiaries at the end of life. Ann Intern Med 138:639-643, 2003 2. Matsuyama R, Reddy S, Smith TJ: Why do patients choose chemotherapy near the end of life? A review of the perspective of those facing death from cancer. J Clin Oncol 24:3490-3496, 2006 3. Cassileth BR, Lusk EJ, Strouse TB, et al: A psychological analysis of cancer patients and their next-of-kin. Cancer 55:72-76, 1985[CrossRef][Medline] 4. Christakis NA, Escarce JJ: Survival of Medicare patients after enrollment in hospice programs. N Engl J Med 335:172-178, 1996 5. Critz FA, Williams WH, Benton JB, et al: Prostate specific antigen bounce after radioactive seed implantation followed by external beam radiation for prostate cancer. J Urol 163:1085-1089, 2000[CrossRef][Medline] 6. Pound CR, Partin AW, Epstein JI, et al: Prostate-specific antigen after anatomic radical retropubic prostatectomy: Patterns of recurrence and cancer control. Urol Clin North Am 24:395-406, 1997[CrossRef][Medline] 7. Barry MJ, Delorenzo MA, Walker-Corkery ES, et al: The rising prevalence of androgen deprivation among older American men since the advent of prostate-specific antigen testing: A population-based cohort study. BJU Int 98:973-978, 2006[CrossRef][Medline] 8. Emanuel EJ, Fairclough DL, Slutsman J, et al: Assistance from family members, friends, paid care givers, and volunteers in the care of terminally ill patients. N Engl J Med 341:956-963, 1999 9. Hoffman RM, Hunt WC, Gilliland FD, et al: Patient satisfaction with treatment decisions for clinically localized prostate carcinoma: Results from the Prostate Cancer Outcomes Study. Cancer 97:1653-1662, 2003[CrossRef][Medline] 10. Clark JA, Inui TS, Silliman RA, et al: Patients' perceptions of quality of life after treatment for early prostate cancer. J Clin Oncol 21:3777-3784, 2003 11. Sapp AL, Trentham-Dietz A, Newcomb PA, et al: Social networks and quality of life among female long-term colorectal cancer survivors. Cancer 98:1749-1758, 2003[CrossRef][Medline] 12. Ganz PA, Guadagnoli E, Landrum MB, et al: Breast cancer in older women: Quality of life and psychosocial adjustment in the 15 months after diagnosis. J Clin Oncol 21:4027-4033, 2003 13. Andersen BL: Stress and quality of life following cervical cancer. J Natl Cancer Inst Monogr 65-70, 1996 14. Rauch P, Miny J, Conroy T, et al: Quality of life among disease-free survivors of rectal cancer. J Clin Oncol 22:354-360, 2004 15. Zietman AL, Sacco D, Skowronski U, et al: Organ conservation in invasive bladder cancer by transurethral resection, chemotherapy and radiation: Results of a urodynamic and quality of life study on long-term survivors. J Urol 170:1772-1776, 2003[CrossRef][Medline] 16. Litwin MS, Hays RD, Fink A, et al: Quality-of-life outcomes in men treated for localized prostate cancer. JAMA 273:129-135, 1995 17. Talcott JA, Manola J, Clark JA, et al: Time course and predictors of symptoms after primary prostate cancer therapy. J Clin Oncol 21:3979-3986, 2003 18. Potosky AL, Davis WW, Hoffman RM, et al: Five-year outcomes after prostatectomy or radiotherapy for prostate cancer: The prostate cancer outcomes study. J Natl Cancer Inst 96:1358-1367, 2004 19. Litwin MS, Flanders SC, Pasta DJ, et al: Sexual function and bother after radical prostatectomy or radiation for prostate cancer: Multivariate quality-of-life analysis from CaPSURE: Cancer of the Prostate Strategic Urologic Research Endeavor. Urology 54:503-508, 1999[CrossRef][Medline] 20. Northouse LL, Mood DW, Montie JE, et al: Living With prostate cancer: patients' and spouses' psychosocial status and quality of life. J Clin Oncol 25:4171-4177, 2007
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Copyright © 2007 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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