Research Information System
CANCERS, vol.16, no.8, 2024 (SCI-Expanded)
Simple Summary Patient awareness of postoperative lymphedema has been poorly explored in gynecologic oncology. While current research has extensively focused on the impact of pelvic and paraortic lymphadenectomy on patient survival, it remains relatively unknown how much of this information is actually discussed with patients that undergo surgery or radiation therapy for the treatment of their disease. In the present study we present information relevant to lymphedema awareness provided by 386 gynecological cancer patients that were treated for gynecologic malignancy. A significant lack of appropriate counseling was noted that seems to be driven by lack of appropriate physician training. This information calls for further research that will help improve patient counseling and pre-treatment decision making.Abstract 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.