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Item The present and future opportunities of the Rare Cancer Network: an international consortium for advancement of oncologic care(SAGE PUBLICATIONS LTD, 2015-01-01) Sio, Terence T.; Mirimanoff, Rene-Olivier; Ozyar, Enis; Belkacemi, Yazid; Miller, Robert C.; Villa, Salvador; Thariat, Juliette; Krengli, Marco; Scandolaro, Luciano; Atalar, Banu; Ugurluer, Gamze; Gutierrez Garcia, Beatriz; Ashman, Jonathan B.; Anacak, Yavuz; Onal, Cem; Arat, Mutlu; Sun, Xu Shan; Tesanovic, Dusanka; Lassen-Ramshad, Yasmin; Oksuz, Didem; Dincbas, Fazilet; Sezen, Duygu; Akyurek, Serap; Kutuk, Tugce; Bolukbasi, Yasemin; Eren, Gulnihan; Paryani, Nitesh N.; Ahmed, Safia K.; Moretti, Luigi; Merrell, Kenneth W.; Chang, Kenneth; Mayeda, Mark; Arnett, Andrea L.; Habboush, Jacob Y.; Ozsahin, Mahmut; Network, Rare CancTo date, the Rare Cancer Network (RCN) has initiated more than 90 studies and 54 peer-reviewed publications were produced as a result. The Second International Symposium of the Rare Cancer Network recently took place in Istanbul, Turkey on April 17-18, 2015, and update was given on multiple currently ongoing projects, while also giving room for new proposals which will shape the direction of future studies for the group. This companion issue of the RCN Proceedings summarized the findings of this meeting, while also serving as a call for fresh projects and papers which will continue to energize the group and advance the oncologic science. A brief introduction to the principles, history, and vision of the RCN was also included. To review, the academic year of 2014-15 marked an enormous success for the international members of the RCN, with the generation of 8 fully published papers and more than 12 newly proposed topics. By the collective efforts of all RCN members, in the future, we look forward to the upcoming opportunities in continuing to advance the standard of chemo-and radiotherapeutic oncologic care for selected rare tumor topics. The studies of these rare cancers often do not allow the design and execution of prospectively enrolled trialsItem Nodular Leptomeningeal Disease-A Distinct Pattern of Recurrence After Postresection Stereotactic Radiosurgery for Brain Metastases: A Multi-institutional Study of Interobserver Reliability(ELSEVIER SCIENCE INC, 2020-01-01) Turner, Brandon E.; Prabhu, Roshan S.; Burri, Stuart H.; Brown, Paul D.; Pollom, Erqi L.; Milano, Michael T.; Weiss, Stephanie E.; Iv, Michael; Fischbein, Nancy; Soliman, Hany; Lo, Simon S.; Chao, Samuel T.; Cox, Brett W.; Murphy, James D.; Li, Gordon; Gephart, Melanie Hayden; Nagpal, Seema; Atalar, Banu; Azoulay, Melissa; Thomas, Reena; Tillman, Gayle; Durkee, Ben Y.; Shah, Jennifer L.; Soltys, Scott G.Purpose: For brain metastases, surgical resection with postoperative stereotactic radiosurgery is an emerging standard of care. Postoperative cavity stereotactic radiosurgery is associated with a specific, underrecognized pattern of intracranial recurrence, herein termed nodular leptomeningeal disease (nLMD), which is distinct from classical leptomeningeal disease. We hypothesized that there is poor consensus regarding the definition of LMD, and that a formal, self-guided training module will improve interrater reliability (IRR) and validity in diagnosing LMD. Methods and Materials: Twenty-two physicians at 16 institutions, including 15 physicians with central nervous system expertise, completed a 2-phase survey that included magnetic resonance imaging and treatment information for 30 patients. In the ``pretraining{''} phase, physicians labeled cases using 3 patterns of recurrence commonly reported in prospective studies: local recurrence (LR), distant parenchymal recurrence (DR), and LMD. After a self-directed training module, participating physicians completed the ``posttraining{''} phase and relabeled the 30 cases using the 4 following labels: LR, DR, classical leptomeningeal disease, and nLMD. Results: IRR increased 34\% after training (Fleiss' Kappa K = 0.41 to K = 0.55, P < .001). IRR increased most among non-central nervous system specialists (+58\%, P < .001). Before training, IRR was lowest for LMD (K = 0.33). After training, IRR increased across all recurrence subgroups and increased most for LMD (+67\%). After training, >= 27\% of cases initially labeled LR or DR were later recognized as nLMD. Conclusions: This study highlights the large degree of inconsistency among clinicians in recognizing nLMD. Our findings demonstrate that a brief self-guided training module distinguishing nLMD can significantly improve IRR across all patterns of recurrence, and particularly in nLMD. To optimize outcomes reporting, prospective trials in brain metastases should incorporate central imaging review and investigator training. (C) 2019 Elsevier Inc. All rights reserved.Item Current treatment strategies in malignant pleural mesothelioma with a treatment algorithm(VIA MEDICA, 2019-01-01) Sayan, Mutlay; Eren, Mehmet Fuat; Gupta, Apar; Ohri, Nisha; Kotek, Ayse; Babalioglu, Ibrahim; Kaplan, Sedenay Oskeroglu; Duran, Ozge; Or, Ozlem Derinalp; Cukurcayie, Funda; Kurtul, Neslihan; Bicakci, Beyhan Ceylaner; Kutuk, Tugce; Senyurek, Sukran; Turk, Ali; Jabbour, Salma K.; Atalar, BanuMalignant pleural mesothelioma (MPM) is a rare disease with a poor prognosis. The main therapeutic options for MPM include surgery, chemotherapy, and radiation therapy (RT). Although multimodality therapy has been reported to improve survival, not every medically operable patient is able to undergo all recommended therapy. With improvements in surgical techniques and systemic therapies, as well as advancements in RT, there has been a potential new paradigm in the management of this disease. In this review, we discuss the current literature on MPM management and propose a functional treatment algorithm.Item The Rare Cancer Network: ongoing studies and future strategy(SAGE PUBLICATIONS LTD, 2014-01-01) Ozsahin, Mahmut; Mirimanoff, Rene-Olivier; Thariat, Juliette; Sun, Xu Shan; Atalar, Banu; Lassen-Ramshad, Yasmin; Ugurluer, Gamze; Krishnan, Sunil; Hallemeier, Christopher; Van Houtte, Paul; Krengli, Marco; Zhang, Lan Jun; Chang, Kenneth; Funk, Ryan; Rooney, Jessica; Miller, Robert C.The Rare Cancer Network (RCN) was formed in the early 1990's to create a global network that could pool knowledge and resources in the studies of rare malignancies whose infrequency prevented both their study with prospective clinical trials. To date, the RCN has initiated 74 studies resulting in 46 peer reviewed publications. The First International Symposium of the Rare Cancer Network took place in Nice in March of 2014. Status updates and proposals for new studies were heard for fifteen topics. Ongoing studies continue for cardiac sarcomas, thyroid cancers, glomus tumors, and adult medulloblastomas. New proposals were presented at the symposium for primary hepatic lymphoma, solitary fibrous tumors, Rosai-Dorfman disease, tumors of the ampulla of Vater, salivary gland tumors, anorectal melanoma, midline nuclear protein in testes carcinoma, pulmonary lymphoepithelioma-like carcinoma, adenoid cystic carcinoma of the trachea, osteosarcomas of the mandible, and extra-cranial hemangiopericytoma. This manuscript presents the abstracts of those proposals and updates on ongoing studies, as well a brief summary of the vision and future of the RCN.Item New horizons from novel therapies in malignant pleural mesothelioma(VIA MEDICA, 2020-01-01) Sayan, Mutlay; Mamidanna, Swati; Eren, Mehmet Fuat; Daliparty, Vasudev; Mustafayev, Teuta Zoto; Nelson, Carl; Ohri, Nisha; Jabbour, Salma K.; Mert, Aslihan Guven; Atalar, BanuMalignant pleural mesothelioma (MPM) is a relatively rare, but highly lethal cancer of the pleural mesothelial cells. Its pathogenesis is integrally linked to asbestos exposure. In spite of recent developments providing a more detailed understanding of the pathogenesis, the outcomes continue to be poor. To date, trimodality therapy involving surgery coupled with chemotherapy and/or radiotherapy remains the standard of therapy. The development of resistance of the tumor cells to radiation and several chemotherapeutic agents poses even greater challenges in the management of this cancer. Ionizing radiation damages cancer cell DNA and aids in therapeutic response, but it also activates cell survival signaling pathways that helps the tumor cells to overcome radiation-induced cytotoxicity. A careful evaluation of the biology involved in mesothelioma with an emphasis on the workings of pro-survival signaling pathways might offer some guidance for treatment options. This review focuses on the existing treatment options for MPM, novel treatment approaches based on recent studies combining the use of inhibitors which target different pro-survival pathways, and radiotherapy to optimize treatment.Item Adult Rhabdomyosarcoma: Clinical Features and Radiotherapy Outcomes-The Turkish Oncology Group (TOG) Bone and Soft Tissue Sarcoma Study Group(KARE PUBL, 2018-01-01) Korkmaz Kirakli, Esra; Iribas, Ayca; Ergen, Arzu; Atalar, Banu; Adaoglu, Fulya; Onder Dincbas, Fazilet; Darendeliler, Emin; Anacak, Yavuz; Kamer, SerraOBJECTIVE Although rhabdomyosarcoma (RMS) is the most frequent soft tissue sarcoma diagnosed in childhood, it represents only 2\%-5\% of adult soft tissue sarcomas. The aim of the present study was to better understand the clinical characteristics, treatment approaches, and outcomes of patients with adult RMS who received radiotherapy (RT) as a component of their multidisciplinary management since there are scarce data on adult RMS due to its rarity. METHODS The medical records of patients with adult RMS who were >= 18 years old and treated with RT between January 1995 and August 2016 in four different radiation centers were evaluated in terms of clinical characteristics, treatment, and follow-up data retrospectively. RESULTS There were 28 patients. The median age at diagnosis was 28 (19-53) years. The most common site of involvement was the head and neck (25\%), and parameningeal region involvement was prominent (92\%) among them. In general, unfavorable site of involvement was markedly higher than favorable ones (82\% vs. 18\%). Alveolar and pleomorphic subtypes compromised 75\% of the cases. Fifteen patients had surgery, 26 chemotherapy, 10 radical intent of RT, 9 adjuvant, 3 preoperative, and 6 palliative. The follow-up time was from 3 to 235 (median 18) months, disease-free survival was between 2 and 48 (median 12) months, and 5-year overall survival (OS) was 25\% (median OS 20 (4-235) months). There were significant differences in terms of survival according to histopathological subtypes (p: 0.017), risk groups (p<0.001), Intergroup Rhabdomyosarcoma Study Group (IRSG) grouping and IRSG staging (p<0.001). CONCLUSION Adult RMS has unfavorable clinical presentation and worse outcome compared with pediatric RMS. Histopathological subtype and risk grouping to define the prognosis used in pediatric cases also might be valid in adult RMS.Item Access to Radiation Therapy by Syrian Refugees Displaced to Turkey(ELSEVIER INC, 2022-01-01) Dagoglu, Nergiz; Karaman, Sule; Atalar, Banu; Miller, Robert C.; Oral, Ethem N.For over 10 years, the Syrian conflict has caused millions of people to leave their homeland, causing one of the biggest refugee crises in modern history. Considering its prevalence, cancer is an important care burden among Syrian refugees. Radiation therapy is one of the essential parts of cancer treatment, and radiation oncology departments must guarantee optimal cancer treatments even in such a challenging setting when patients are displaced forcefully from their homes. National and institutional measures are highlighted in this manuscript to provide suggestions for the delivery of care during refugee crises. There are two issues creating barriers to serving refugee populations: the loss of access to their original care records in Syria for those with a previous diagnosis of cancer referred for continuation of radiation therapy or reirradiation, and the effect of acute radiation therapy toxicity on treatment compliance. (c) 2022 The Authors. Published by Elsevier Inc. on behalf of American Society for Radiation Oncology. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).Item Linguistic Validation of the Turkish Version of the MD Anderson Symptom Inventory - Head and Neck Cancer Module(GALENOS PUBL HOUSE, 2016-01-01) Gunn, G. Brandon; Atalar, Banu; Mendoza, Tito R.; Cleeland, Charles S.; Selek, Ugur; Ozyar, Enis; Rosenthal, David I.Background: The use of patient symptom reports with frequent symptom assessment may be preferred over the more commonly used health-related quality of life questionnaires. Aims: We sought to linguistically validate the Turkish version of the M.D. Anderson Symptom Inventory-Head and Neck module (MDASI-HN) patient reported outcome questionnaire. Study Design: Validation study. Methods: Following standard forward and backward translation of the original and previously validated English MDASI-HN into a Turkish version (T-MDASI-HN), it was administered to patients with head and neck cancer able to read and understand Turkish. Patients were then cognitively debriefed to evaluate their understanding and comprehension of the T-MDASI-HN. Individual and group responses are presented using descriptive statistics. Results: Twenty-six participants with head and neck cancer completed the T-MDASI-HN and accompanying cognitive debriefing. Overall, 97 percent of the individual TMDASI-HN items were completed. Average recorded time to complete the 28 item TMDASI-HN questionnaire was 5.4 minutes (range 2-10). Average overall ease of completion, understandability, and acceptability were favorably rated at 1.0, 1.1, and 0.2, respectively, on scales from 0 to 10. Only 5 of the 26 of participants reported trouble completing any single questionnaire items, namely the ``difficulty remembering{''} item for 3 individuals. Conclusion: The T-MDASI-HN is linguistically valid with ease of completion, relevance, comprehensibility, and applicability and it can be a useful clinical and research tool.Item Multi-Institutional Outcomes of Stereotactic Magnetic Resonance Image Guided Adaptive Radiation Therapy With a Median Biologically Effective Dose of 100 Gy(10) for Non-bone Oligometastases(ELSEVIER INC, 2022-01-01) Kutuk, Tugce; Herrera, Robert; Mustafayev, Teuta Z.; Gungor, Gorkem; Ugurluer, Gamze; Atalar, Banu; Kotecha, Rupesh; Hall, Matthew D.; Rubens, Muni; Mittauer, Kathryn E.; Contreras, Jessika A.; McCulloch, James; Kalman, Noah S.; Alvarez, Diane; Romaguera, Tino; Gutierrez, Alonso N.; Garcia, Jacklyn; Kaiser, Adeel; Mehta, Minesh P.; Ozyar, Enis; Chuong, Michael D.Purpose: Randomized data show a survival benefit of stereotactic ablative body radiation therapy in selected patients with oligometastases (OM). Stereotactic magnetic resonance guided adaptive radiation therapy (SMART) may facilitate the delivery of ablative dose for OM lesions, especially those adjacent to historically dose-limiting organs at risk, where conventional approaches preclude ablative dosing. Methods and Materials: The RS Search Registry was queried for OM patients (1-5 metastatic lesions) treated with SMART. Freedom from local progression (FFLP), freedom from distant progression (FFDP), progression-free survival (PFS), and overall survival (LS) were estimated using the Kaplan-Meier method. FFLP was evaluated using RECIST 1.1 criteria. Toxicity was evaluated using Common Terminology Criteria for Adverse Events version 4 criteria. Results: Ninety-six patients with 108 OM lesions were treated on a 0.35 T MR Linac at 2 institutions between 2018 and 2020. SMART was delivered to mostly abdominal or pelvic lymph nodes (48.1\%), lung (18.5\%), liver and intrahepatic bile ducts (16.7\%), and adrenal gland (11.1\%). The median prescribed radiation therapy dose was 48.5 Gy (range, 30-60 Gy) in 5 fractions (range, 3-15). The median biologically effective dose corrected using an alpha/beta value of 10 was 100 Gy10 (range, 48-180). No acute or late grade 3+ toxicities were observed with median 10 months (range, 3-25) follow-up. Estimated 1-year FFLP, FFDP, PFS, and OS were 92.3\%, 41.1\%, 39.3\%, and 89.6\%, respectively. Median FFDP and PFS were 8.9 months (95\% confidence interval, 5.2-12.6 months) and 7.6 months (95\% confidence interval, 4.5-10.6 months), respectively. Conclusions: To our knowledge, this represents the largest analysis of SMART using ablative dosing for non-bone OM. A median prescribed biologically effective dose of 100 Gy10 resulted in excellent early FFLP and no significant toxicity, likely facilitated by continuous intrafraction MR visualization, breath hold delivery, and online adaptive replanning. Additional prospective evaluation of dose-escalated SMART for OM is warranted. (C) 2022 The Author(s). Published by Elsevier Inc. on behalf of American Society for Radiation Oncology.Item The impact of total neo-adjuvant treatment on nonoperative management in patients with locally advanced rectal cancer: The evaluation of 66 cases in a single center (vol 46, pg 402, 2019)(ELSEVIER SCI LTD, 2020-01-01) Asoglu, Oktar; Tokmak, Handan; Bakir, Baris; Demir, Gokhan; Ozyar, Enis; Atalar, Banu; Goksel, Suha; Koza, Burak; Mert, Aslihan Guven; Demir, Atakan; Guven, Koray