Quality of life and symptoms in longterm survivors with ovarian cancer: It’s still an issue. Expression VI – Carolin meets HANNA – holistic analysis of long-term survival with ovarian cancer: The international NOGGO, ENGOT and GCIG survey
Authors: H. Woopen, I. Braicu, R. Richter, K. Schnuppe, P. Krabisch, T. Boxler, G. Emons, J. Glajzer, M. Rose, L. Erdur, R. Lindhorst, M. Endres, P. Hühnchen, I.B. Vergote, R. Berger, C. Marth, J. Sehouli
Journal: Annals of Oncology (2018)

Background: Little is known about the rare cohort of long-term survivors with ovarian cancer. Aim of this study is to characterize long-term survivors with ovarian cancer. Methods: Since 11/2016 long-term survivors with ovarian cancer (LTS) were recruited within the study “Carolin meets HANNA” (www.carolinmeetshanna.com). Long-term survival was defined as an ovarian cancer diagnosis more than eight years ago. Results: Until 04/2018 239 LTS were recruited with a median age of 54 years at initial diagnosis (range: 14-79 years). Almost half of the patients (45.5%) were diagnosed in advances stages (FIGO III/IV). At initial diagnosis 99.6% received surgery followed by chemotherapy in 89.9%. More than half of LTS (52.1%) developed recurrent disease and of these 51.3% had more than one recurrence. Cancer treatment is ongoing in 40.1%. The most troubling side effects were alopecia (39.5%) and fatigue (37.6%). Still ongoing symptoms are fatigue (35.7%), bone pain (29.8%), polyneuropathy (25.0%) and memory problems (23.8%). Follow-ups are regularly performed in 96.2%. Healthy nutrition and physical activity are believed to have a positive impact on the course of the disease (66.8% and 55.1% respectively). That’s why 53.3% of LTS have changed their dietary habits after diagnosis and 66.0% are regularly physically active. Conclusions: Many LTS are still enduring side effects from cancer treatment or are currently under treatment. These rather health-conscious patients believe to be able to positively influence their outcome by sports and nutrition. Recruitment within ENGOT and GCIG is ongoing in order to find a signature for long-term survival. Legal entity responsible for the study: NOGGO. Funding: German Ovarian Cancer Foundation, AstraZeneca, JanssenCilag, Pfizer. Disclosure: H. Woopen: Participant in the Charité Clinical Scientist Program funded by the Charité Universitätsmedizin Berlin and the Berlin Institute of Health. I.B. Vergote: Consulting/Advisory board: Roche, NV Genmab, A/S Advaxis Inc., Morphotek Inc F. Hoffmann-La Roche Ltd, Cerulean Pharma Inc., Novocure GMBH, AstraZeneca, Mateon Therapeutics Inc Immunogen Inc., Eli Lilly, Benelux NV, Amgen Inc., Theradex Europe Limited, Pfizer Inc, Debiopharma International SA, Vifor, Pharma België NV, Novartis Pharma A MSD, Belgium BVBA Janssen-Cilag Bayer, Pharma AG, Clovis Oncology, Takeda, PharmaMar, Oncoinvent; Contracted research (via KULeuven)Morphotek; Grant/Corporate, Sponsored research: Amgen Roche; Accomodations, Travel expenses: Tesaro, Clovis Oncology, Takeda, PharmaMar, Roche, GenmaB Oncoinvent. J. Sehouli: Honoraria: Roche, AstraZeneca, Tesaro, PharmaMar; Consulting or Advisory role: Novocure, Clovis, Roche, AstraZeneca, Tesaro Research Funding (institution): Amgen, Novartis, Lilly, Bayer. All other authors have declared no conflicts of interest.