The Patient’s Perspective on Radiation for Rectal Cancer: Initial Expectations Versus Actual Experience

Abstract

Radiation therapy (RT) serves as a key component in the multidisciplinary management of rectal cancer. How patients perceive RT, particularly in the context of their overall treatment experience, remains unclear. Consecutive patients with adenocarcinoma of the rectum treated with neo- or adjuvant chemoradiation, surgical resection, and adjuvant chemotherapy from 2009-2018 and who were without recurrence were surveyed. Patients were surveyed ≥6 months after ileostomy reversal or ≥3 months after adjuvant chemotherapy, whichever was later. The survey assessed patients’ baseline knowledge and fears of RT and asked them to compare their short- and long-term side effects with initial expectations. Patients were also asked to compare their experiences of each modality (RT, surgery, and chemotherapy). Questions were adapted from the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire. The response rate was 51% (40/78). The median age was 68 years (range 39-89) and 53% were female. The clinical stage distribution was 5% stage I (upstaged at surgery), 20% stage II, and 75% stage III. The majority underwent neoadjuvant (88%) chemoradiation with capecitabine (85%); 53% were treated with 3D conformal RT and 47% intensity-modulated RT (median total dose 50.4 Gy, range 45-54 Gy). Surgical resections were as follows: 65% low anterior resection, 25% abdominal perineal resection, and 10% other. The most common adjuvant chemotherapy was capecitabine/oxaliplatin (43%) for median duration of 6 cycles. Median follow-up at survey was 41 months (range 4-107 months). Before treatment, 70% of patients indicated little to no knowledge of RT, though 43% reported hearing frightening stories about RT. The most commonly top ranked fears included organ damage (26%), skin burns (14%), and inability to carry out normal daily activities (10%). Regarding short-term effects of RT, 80% reported overall effects to be less than or as expected, with urinary changes (93%), abdominal discomfort (90%), and anxiety (88%) most commonly rated as less than or as expected. Regarding long-term effects of RT, 85% reported overall effects to be less than or as expected, with pain (95%), changes to the appearance of the treated area (85%), and dissatisfaction with body image (80%) most commonly rated as less than or as expected. Of the modalities, surgery was most commonly rated as the most difficult treatment (50%) and most responsible for long-term effects (55%). RT was least commonly rated as the most difficult treatment (13%) and chemotherapy least commonly rated as most responsible for long-term effects (13%). The majority of patients indicated short- and long-term side effects of RT for rectal cancer to be better than initial expectations. In the context of trimodality therapy, patients reported RT to be the least difficult of the treatments.