292 Diseases of the Esophagus (2004) 17, 292–296 © 2004 ISDE Blackwell Publishing, Ltd. Original article Investigating four ‘myths’ surrounding dysphagia in patients with metastatic esophageal cancer. A multi-institutional study from the North Central Cancer Treatment Group* A. Jatoi, 1 N. Foster, 1 P. Johnson, 2 G. Klee, 1 J. F. Quevedo, 1 R. F. Morton, 3 S. Nair, 4 C. G. Kardinal, 5 J. A. Mailliard 6 1 Mayo Clinic and Mayo Foundation, Rochester, 2 Carle Cancer Center CCOP, Urbana, 3 Iowa Oncology Research Association CCOP, Des Moines, 4 Geisinger Clinic & Medical Center CCOP, Danville, 5 Ochsner CCOP, New Orleans, and 6 Missiouri Valley Cancer Consortium, Omaha, USA SUMMARY. Eighty-five to 95% of esophageal cancer patients suffer dysphagia. Yet, few studies have focused on this symptom, and four ‘myths’ persist: (i) dysphagia cannot be measured; (ii) chemotherapy cannot palliate it; (iii) dysphagia predicts a poor prognosis; (iv) dysphagia is associated with a frustratingly insatiable appe- tite. Forty-four patients with metastatic esophageal cancer participated in this quality of life/translational component of a previously reported clinical trial. All were monitored for chemotherapy efficacy and toxicity and completed questionnaires on dysphagia and appetite at baseline and every 6 weeks. The appetite hormones, leptin and neuropeptide y, were also assessed. Forty-five per cent of patients could easily swallow solid foods; all others had varying dysphagia, thus enabling exploration of these four ‘myths.’ First, a single-item visual analog scale (Swallowing Scale), demonstrated excellent agreement with a previously validated questionnaire (81% at baseline), thus reminding us that dysphagia is measurable. Second, chemotherapy was associated with a trend towards improved dysphagia (P = 0.059). Third, dysphagia did not predict tumor response or survival. Fourth, dysphagia was not associated with appetite, leptin or neuropeptide y. This study helps to dispel these four ‘myths’ and underscores the need for further quality of life research on dysphagia. KEY WORDS: anorexia, dysphagia, esophageal cancer, quality of life. INTRODUCTION A distressing symptom, dysphagia occurs in 85– 95% of patients with esophageal cancer. 1,2 Watt and Whyte recently interviewed six esophageal cancer patients to gain a better understanding of this symptom from the patient’s perspective. 2 Providing a graphic description of the suffering associated with dysphagia, one of these patients recalled the following: I just took a full fork, and whether it expanded in me there, I don’t know … I couldn’t even talk. I was drinking water and I was in agony for an hour before all that cleared. That was one terrible night. That was the worst night I ever had … Larger studies have relied on validated question- naires to show that dysphagia is associated with diminished global quality of life. Brunelli et al. evaluated 98 patients with malignant dysphagia. 3 Over 90% of these patients had esophageal cancer, and the rest had malignant dysphagia from another etiology. Utilizing the EORTC QLQ C-30 question- naire, these investigators observed a strong correlation between worsening dysphagia scores and a decline in other quality of life domains, including physical functioning, role functioning, fatigue, and global quality of life. Such findings suggest that this one symptom carries pervasive, negative implications. Despite its high prevalence and profoundly nega- tive impact on quality of life, relatively few studies have focused on dysphagia as a symptom. As a result, several clinical perceptions – or ‘myths’ – surrounding this symptom have persisted without having been validated in a rigorous, focused fashion, especially in patients with metastatic disease. By definition, a ‘myth’ is a ‘… thing having only an imaginary or unverifiable existence’ . 4 Thus, by Address correspondence to: Dr Aminah Jatoi, M.D., Mayo Clinic, 200 First Street, SW, Rochester, MN 55905, Email: Jatoi.aminah@mayo.edu *This study was conducted as a collaborative trial of the North Central Cancer Treatment Group and the Mayo Clinic.