title: Radiation therapy for Gorham-Stout syndrome: results of a national patterns-of-care study and literature review.
abstract: OBJECTIVE
  The German Cooperative Group on Radiotherapy for Benign Diseases conducted a national patterns-of-care study to investigate the value of radiation therapy (RT) in the management of Gorham-Stout syndrome.
  
  
  METHODS
  In 2009 a structured questionnaire was circulated to 230 German RT institutions to assess information about the number of patients, the RT indication and technique, and the target volume definition, as well as accompanying treatments, outcome data, and early or late radiation toxicity.
  
  
  RESULTS
  In November 2009 responses were available from 197 departments (85.6%): 29 university hospitals (14.7%), 89 community hospitals (45.2%), and 79 private RT offices (40.1%). Of these institutions, 8 (4.0%) had experience using RT, for a total of 10 cases in various anatomic sites. Four patients underwent irradiation postoperatively, and six patients received primary RT. The total doses applied after computed tomography-based treatment planning ranged from 30 to 45 Gy. After a median follow-up period of 42 months, local disease progression was avoided in 8 cases (80.0%). In 2 of these cases a progression occurred beyond the target volume. Acute and late toxicity was mild; in 4 patients RT was associated with Grade I side effects according to Radiation Therapy Oncology Group/European Organisation for Research and Treatment of Cancer criteria. The literature analysis of 38 previously published articles providing results after the use of RT in 44 patients showed stable or regressive disease in 77.3%.
  
  
  CONCLUSIONS
  RT may prevent disease progression effectively in Gorham-Stout syndrome in 77% to 80% of cases. Total doses ranging from 30 to 45 Gy applied after computed tomography-based treatment planning are recommended.
authors.affiliation: Department of Radiotherapy, Offenbach Hospital, Offenbach, Germany. reiniheyd@aol.com
authors.forename: Reinhard
authors.initials: R
authors.lastname: Heyd
authors.forename: Oliver
authors.initials: O
authors.lastname: Micke
authors.forename: Christine
authors.initials: C
authors.lastname: Surholt
authors.forename: Bernhard
authors.initials: B
authors.lastname: Berger
authors.forename: Carmen
authors.initials: C
authors.lastname: Martini
authors.forename: Jürgen
authors.initials: J
authors.lastname: Füller
authors.forename: Thomas
authors.initials: T
authors.lastname: Schimpke
authors.forename: M Heinrich
authors.initials: MH
authors.lastname: Seegenschmiedt
mesh_terms: D000328:Adult; D005260:Female; D005858:Germany; D019538:Health Care Surveys; D006801:Humans; D008875:Middle Aged; D010015:Osteolysis, Essential / Q000000981:diagnostic imaging / Q000532:radiotherapy*; D011859:Radiography; D011879:Radiotherapy Dosage; D011880:Radiotherapy Planning, Computer-Assisted; D013577:Syndrome; D055815:Young Adult