INTRODUCTION: Patient awareness of postoperative lymphedema in the field of gynecologic oncology has been poorly documented in the international literature. We wished to capture and document the awareness among gynecological cancer survivors about postoperative lymphedema, including aspects such as the adequacy of perioperative counseling, management, and quality of life. METHODS: A web-based survey comprising 25 multiple-choice questions was distributed to gynecological cancer advocacy groups within the European Network of Gynecological Cancer Advocacy Groups (ENGAGe) group. The survey was validated in a pilot group of gynecological patients prior to distribution. RESULTS: Overall, 386 women from 20 countries completed the questionnaire. Only half of the patients (n = 211) knew what lymphedema is, whereas 52% of the respondents stated that they were never informed at their pre-operative assessment about the potential risk of developing lymphedema. Fifty-three percent of those women who were informed about the risk and management of lymphedema received information through self-initiative, connecting mainly with patient groups or online. Approximately 84% of patients with lymphedema reported that they informed their doctor about their symptoms. Ninety-four patients (55.3%, which is not 55% of the 386) were treated for lymphedema. Forty-five women out of 136 reported that lymphedema significantly affected their everyday lives. DISCUSSION: We report a large lack of awareness and a significant gap of knowledge about the risks and treatment options related to postoperative lymphedema among gynecological cancer survivors. Institutional practice routines and awareness among professionals need to be urgently recalled and adapted to adequately inform and support gynecological cancer patients.

1st Department of Obstetrics and Gynaecology Alexandra Hospital National and Kapodistrian University of Athens 2 Lour Street 11522 Athens Greece

Department of Obstetrics and Gynaecology 3rd Faculty of Medicine Charles University Faculty Hospital Kralovske Vinohrady 11000 Prague Czech Republic

Department of Obstetrics and Gynaecology Hacettepe University Faculty of Medicine Ankara 06230 Turkey

Department of Surgery and Cancer Gynaecologic Oncology Imperial College London London W12 0HS UK

Erifyle K E F 1 Gynecological Cancer Advocacy Group 11526 Athens Greece

Gynecologic Oncology Unit La Paz University Hospital IdiPAZ 28046 Madrid Spain

N N Petrov Research Institute of Oncology 197758 St Petersburg Russia

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