Survivorship care patterns and late effects after cancers of the pancreas and biliary tract.

Abstract

296 Background: Pancreas and biliary (PBT) cancers are generally associated with poor prognosis, despite aggressive, multimodality therapy. The population of cancer survivors after these diagnoses may be largely ignored, despite risk of late effects. This Internet-based study seeks to evaluate patient-reported toxicities and survivorship care patterns after treatment of PBT cancers. Methods: Patient-reported data were gathered via convenience sample from PBT survivors voluntarily utilizing a publically available Internet-based tool for creation of survivorship care plans. Available at www.livestrongcareplan.com and the OncoLink website, the tool asks survivors to enter data regarding diagnosis, demographics, and treatments, and provides customized guidelines for future care. During use of the tool, PBT survivors are queried regarding late effects associated with specific treatments. Results: 89 PBT survivors utilized the tool from 2010-2012, 66% with pancreas cancer, 20% biliary, and 13% liver. Of the entire group, 59% were female and 81% Caucasian. Median diagnosis age was 59 and median current age 61. Average time since diagnosis was 2 years (range <1-8). Most reported having had multimodality therapy - 71% surgery, 78% chemotherapy, and 46% radiation – although only 30% report continued care from an oncologist and 8% having received previous survivorship information. Of 17 patients queried, 3 had metastatic disease and 3 had recurrent disease. When the entire group was queried regarding possible side effects of treatment, 44% report persistent neuropathy, 24% chronic diarrhea, 21% bowel stricture or obstruction, and 15% chronic skin changes in the radiation portal. Conclusions: Although the prognosis after PBT cancers remains relatively poor, a small population of long-term survivors exists. Survivors using this tool have generally not received survivorship information and most are no longer followed by an oncologist despite having received multimodality treatment. Neuropathy and gastrointestinal side effects appear to be the most bothersome to this group. This tool represents a potential way to provide information to underrepresented survivorship groups such as PBT survivors in the future.