{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,20]],"date-time":"2026-05-20T10:08:07Z","timestamp":1779271687320,"version":"3.51.4"},"reference-count":35,"publisher":"MDPI AG","issue":"10","license":[{"start":{"date-parts":[[2026,5,20]],"date-time":"2026-05-20T00:00:00Z","timestamp":1779235200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Cancers"],"abstract":"<jats:p>Background: Long-term survivors (LTS) after gynecological cancer may be cured but still face physical and psychological challenges. This multicenter study aimed to assess the long-term side effects, the received follow-up care, and the personal perspectives of survivors. Methods: Between 2019 and 2025, LTS from four European countries within the ENGOT (European Network of Gynecological Oncological Trial Groups) and GCIG (Gynecologic Cancer InterGroup) networks were recruited. Long-term survival was defined as surviving at least five years after the first diagnosis. LTS completed a questionnaire with 81 questions (patient\u2019s characteristics, oncological history, current health status, lifestyle factors). Analyses were mainly descriptive. Results: A total of 677 LTS were enrolled, with a median age of 64.0 years (range: 26\u201392) and a median survival time of 7 years (range: 5\u201338). A total of 46.6% were diagnosed with cervical cancer, 32.9% with endometrial cancer, 4.4% with ovarian cancer, and 16.1% with other types of gynecological cancer. Moreover, 36.9% still suffer from physical and psychological symptoms, most frequently being lymphedema (36.2%), hot flashes (22.4%), difficulties with concentration (21.1%), fatigue (20.9%), vaginal dryness (20.1%), and urinary incontinence (18.9%). Median overall health status was ranked (scale 1\u20135; 1 = very good, 5 = very poor) as 2, while 13.5% rated their health as poor\/very poor. Current symptoms were associated with poorer health status (p &lt; 0.001) and a history of recurrent disease (p = 0.001). In addition, 13.6% reported not receiving follow-up care. CA-125 was determined in 80.8% of ovarian LTS, as well as in 30.7% of cervical and 28.9% of endometrial LTS. Pap smear follow-up was reported by 50.5% of endometrial LTS. A total of 33.7% did not exercise at all or exercised less than an hour per week, 13.4% smoke tobacco, and 51.2% drink alcohol more often than once a month. Conclusions: Our findings highlight the need for patient-centered follow-up care, addressing both long-term side effects and education on lifestyle and prevention. Follow-up procedures that do not follow guidelines should be avoided.<\/jats:p>","DOI":"10.3390\/cancers18101647","type":"journal-article","created":{"date-parts":[[2026,5,20]],"date-time":"2026-05-20T09:12:41Z","timestamp":1779268361000},"page":"1647","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Patients\u2019 Perception of Follow-Up Care and Personal Health Status of 677 Long-Term Survivors of Gynecological Cancer from the Study \u201cExpression IX\u2014Long-Term Survival with Gynecological Cancer\u201d: The International NOGGO, ENGOT and GCIG Survey"],"prefix":"10.3390","volume":"18","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8617-5535","authenticated-orcid":false,"given":"Hannah","family":"Woopen","sequence":"first","affiliation":[{"name":"Department of Gynecology with Center for Oncological Surgery, Charit\u00e9\u2014Universit\u00e4tsmedizin Berlin, Corporate Member of Freie Universit\u00e4t Berlin and Humboldt-Universit\u00e4t zu Berlin, 13353 Berlin, Germany"},{"name":"North-Eastern German Society for Gynecological Oncology (NOGGO), 13359 Berlin, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tibor","family":"Zwimpfer","sequence":"additional","affiliation":[{"name":"Swiss GO Trial Group (Swiss-GO), 4031 Basel, Switzerland"},{"name":"Gynecological Cancer Centre, University Hospital Basel, 4031 Basel, Switzerland"},{"name":"Ovarian Cancer Research, Department of Biomedicine, University of Basel, 4031 Basel, Switzerland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Luise","family":"Brenner","sequence":"additional","affiliation":[{"name":"Department of Gynecology with Center for Oncological Surgery, Charit\u00e9\u2014Universit\u00e4tsmedizin Berlin, Corporate Member of Freie Universit\u00e4t Berlin and Humboldt-Universit\u00e4t zu Berlin, 13353 Berlin, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Clemens","family":"Liebrich","sequence":"additional","affiliation":[{"name":"North-Eastern German Society for Gynecological Oncology (NOGGO), 13359 Berlin, Germany"},{"name":"Gynecological Cancer Center, Wolfsburg Hospital, Sauerbruchstrasse 7, 38440 Wolfsburg, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9572-9114","authenticated-orcid":false,"given":"Katharina","family":"Leitner","sequence":"additional","affiliation":[{"name":"Department of Gynecology and Obstetrics, Medical University of Innsbruck, 6020 Innsbruck, Austria"},{"name":"Arbeitsgemeinschaft Gynaekologische Onkologie Austria (AGO Austria), 6020 Innsbruck, Austria"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4704-4647","authenticated-orcid":false,"given":"Stephanie","family":"Henry","sequence":"additional","affiliation":[{"name":"Belgium and Luxembourg Gynaecological Oncology Group (BGOG), 3000 Leuven, Belgium"},{"name":"Oncology, CHU UCL NAMUR (Site Ste Elisabeth), Universit\u00e9 Catholique de Louvain, 5000 Namur, Belgium"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Cornelia","family":"M\u00fcller","sequence":"additional","affiliation":[{"name":"North-Eastern German Society for Gynecological Oncology (NOGGO), 13359 Berlin, Germany"},{"name":"Department of Gynecology and Obstetrics, Brandenburg University Hospital GmbH, 14770 Brandenburg an der Havel, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2469-9824","authenticated-orcid":false,"given":"Flurina Annacarina Maria","family":"Saner","sequence":"additional","affiliation":[{"name":"Swiss GO Trial Group (Swiss-GO), 4031 Basel, Switzerland"},{"name":"Department of Gynaecology and Obstetrics, Bern University Hospital, Faculty of Medicine, University of Bern, 3010 Bern, Switzerland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2033-6228","authenticated-orcid":false,"given":"Christoph","family":"Ebner","sequence":"additional","affiliation":[{"name":"Department of Gynecology and Obstetrics, Medical University of Innsbruck, 6020 Innsbruck, Austria"},{"name":"Arbeitsgemeinschaft Gynaekologische Onkologie Austria (AGO Austria), 6020 Innsbruck, Austria"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4228-5158","authenticated-orcid":false,"given":"Desislava","family":"Dimitrova","sequence":"additional","affiliation":[{"name":"Department of Gynecology with Center for Oncological Surgery, Charit\u00e9\u2014Universit\u00e4tsmedizin Berlin, Corporate Member of Freie Universit\u00e4t Berlin and Humboldt-Universit\u00e4t zu Berlin, 13353 Berlin, Germany"},{"name":"North-Eastern German Society for Gynecological Oncology (NOGGO), 13359 Berlin, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Claudia","family":"Mang","sequence":"additional","affiliation":[{"name":"Swiss GO Trial Group (Swiss-GO), 4031 Basel, Switzerland"},{"name":"Gynecological Cancer Centre, University Hospital Basel, 4031 Basel, Switzerland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Isabelle","family":"Himsl","sequence":"additional","affiliation":[{"name":"North-Eastern German Society for Gynecological Oncology (NOGGO), 13359 Berlin, Germany"},{"name":"Department of Gynecology and Obstetrics, Third Order Hospital Munich, 80638 Munich, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Johanna","family":"Hell-Teutsch","sequence":"additional","affiliation":[{"name":"Arbeitsgemeinschaft Gynaekologische Onkologie Austria (AGO Austria), 6020 Innsbruck, Austria"},{"name":"Department of Gynecology and Obstetrics, Wels-Grieskirchen Hospital, Grieskirchner Stra\u00dfe 42, 4600 Wels, Austria"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2564-721X","authenticated-orcid":false,"given":"Toon","family":"Van Gorp","sequence":"additional","affiliation":[{"name":"Belgium and Luxembourg Gynaecological Oncology Group (BGOG), 3000 Leuven, Belgium"},{"name":"Leuven Cancer Institute, Catholic University of Leuven, 3000 Leuven, Belgium"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7966-4085","authenticated-orcid":false,"given":"Christian","family":"Braun","sequence":"additional","affiliation":[{"name":"Swiss GO Trial Group (Swiss-GO), 4031 Basel, Switzerland"},{"name":"Luzerner Kantonsspital Spitalstrasse, 6000 Luzern, Switzerland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Yurtcu","family":"Nurhayat","sequence":"additional","affiliation":[{"name":"North-Eastern German Society for Gynecological Oncology (NOGGO), 13359 Berlin, Germany"},{"name":"AGAPLESION Klinikum Hagen gGmbH, Academic Teaching Hospital of the Ruhr University Bochum, Gr\u00fcnstra\u00dfe 35, 58059 Hagen, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michael","family":"M\u00fcller","sequence":"additional","affiliation":[{"name":"Swiss GO Trial Group (Swiss-GO), 4031 Basel, Switzerland"},{"name":"Department of Gynaecology and Obstetrics, Bern University Hospital, Faculty of Medicine, University of Bern, 3010 Bern, Switzerland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lars","family":"Hanker","sequence":"additional","affiliation":[{"name":"North-Eastern German Society for Gynecological Oncology (NOGGO), 13359 Berlin, Germany"},{"name":"Department of Gynecology and Obstetrics, University Hospital M\u00fcnster, Albert-Schweitzer-Campus 1, 48149 M\u00fcnster, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Viola","family":"Heinzelmann-Schwarz","sequence":"additional","affiliation":[{"name":"Swiss GO Trial Group (Swiss-GO), 4031 Basel, Switzerland"},{"name":"Gynecological Cancer Centre, University Hospital Basel, 4031 Basel, Switzerland"},{"name":"Ovarian Cancer Research, Department of Biomedicine, University of Basel, 4031 Basel, Switzerland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5963-6623","authenticated-orcid":false,"given":"Jalid","family":"Sehouli","sequence":"additional","affiliation":[{"name":"Department of Gynecology with Center for Oncological Surgery, Charit\u00e9\u2014Universit\u00e4tsmedizin Berlin, Corporate Member of Freie Universit\u00e4t Berlin and Humboldt-Universit\u00e4t zu Berlin, 13353 Berlin, Germany"},{"name":"North-Eastern German Society for Gynecological Oncology (NOGGO), 13359 Berlin, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"1968","published-online":{"date-parts":[[2026,5,20]]},"reference":[{"key":"ref_1","first-page":"229","article-title":"Global cancer statistics 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