title: Endoscopic screening and surgery for familial adenomatous polyposis: dangerous delays.
abstract: BACKGROUND
  Registries for patients with familial adenomatous polyposis (FAP) can improve patient management. However, in relation to colorectal cancer, a critical review has not previously been undertaken of the effectiveness of screening and surgical protocols within a registry.
  
  
  METHODS
  A review was undertaken of 63 gene carriers who received primary treatment for FAP between 1987, when the Northern Region Polyposis Registry was formed, and 1995.
  
  
  RESULTS
  In some gene carriers with colorectal cancer, surgery was delayed because of social factors or unpleasant surgical experiences in the family. Colonoscopy failed to detect five colorectal cancers.
  
  
  CONCLUSIONS
  Delays in treatment still occur in patients with FAP and colorectal cancer, often because of complex social problems and patients' fear of surgery. If multiple colorectal polyps are present, colonoscopy is not a reliable screening test for malignancy and prophylactic surgery is indicated, preferably before the patient is 20 years old.
authors.affiliation: Department of Human Genetics, University, Newcastle upon Tyne, UK.
authors.forename: S J
authors.initials: SJ
authors.lastname: Mills
authors.forename: P D
authors.initials: PD
authors.lastname: Chapman
authors.forename: J
authors.initials: J
authors.lastname: Burn
authors.forename: A
authors.initials: A
authors.lastname: Gunn
mesh_terms: D011125:Adenomatous Polyposis Coli / Q000175:diagnosis* / Q000235:genetics / Q000601:surgery; D000293:Adolescent; D000328:Adult; D000714:Anastomosis, Surgical; D002648:Child; D002755:Choice Behavior; D003110:Colonic Neoplasms / Q000209:etiology / Q000235:genetics; D003111:Colonic Polyps / Q000209:etiology / Q000235:genetics; D015179:Colorectal Neoplasms / Q000209:etiology / Q000235:genetics; D004724:Endoscopy; D016099:Endoscopy, Gastrointestinal; D005260:Female; D006579:Heterozygote; D006801:Humans; D008297:Male; D008403:Mass Screening; D008875:Middle Aged; D012004:Rectal Neoplasms / Q000209:etiology / Q000235:genetics; D012042:Registries; D012959:Socioeconomic Factors