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Jaydira Del Rivero Developmental Therapeutics Branch, National Cancer Institute, National Institutes of Health, Bethesda, USA

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Josh Mailman NorCal CarciNET Community, Oakland, California, USA

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Michael W Rabow Department of Internal Medicine, Division of Palliative Medicine, University of California, San Francisco, San Francisco, California, USA

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Jennifer A Chan Harvard Medical School, Program in Carcinoid and Neuroendocrine Tumors, Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA

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Sarah Creed Good Shepherd Community Care, Harvard Kennedy School, Natick, Massachusetts, USA

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Hagen F Kennecke Providence Cancer Institute Franz Clinic, Portland Providence Medical Center, Portland, Oregon, USA

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Janice Pasieka Department of Surgery, Section of General Surgery, University of Calgary, Cumming School of Medicine, Calgary, Canada

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Jennifer Zuar Department of Internal Medicine, Division of Geriatrics and Palliative Medicine, Alpert Medical School, Providence, Rhode Island, USA

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Simron Singh Odette Cancer Centre, Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada

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Lauren Fishbein Department of Medicine, Division of Endocrinology, Metabolism and Diabetes, Department of Biomedical Informatics, University of Colorado School of Medicine, Aurora, Colorado, USA

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How do we define palliative care, and when should it be started? Palliative care is a medical subspecialty that focuses on alleviating the symptoms and stress associated with serious medical illness. Palliative care is appropriate for any

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B Wängberg Surgery, Clinical Chemistry, Department of Mathemathical Sciences, Departments of

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A Khorram-Manesh Surgery, Clinical Chemistry, Department of Mathemathical Sciences, Departments of

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S Jansson Surgery, Clinical Chemistry, Department of Mathemathical Sciences, Departments of

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B Nilsson Surgery, Clinical Chemistry, Department of Mathemathical Sciences, Departments of

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O Nilsson Surgery, Clinical Chemistry, Department of Mathemathical Sciences, Departments of

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C E Jakobsson Surgery, Clinical Chemistry, Department of Mathemathical Sciences, Departments of

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S Lindstedt Surgery, Clinical Chemistry, Department of Mathemathical Sciences, Departments of

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A Odén Surgery, Clinical Chemistry, Department of Mathemathical Sciences, Departments of

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H Ahlman Surgery, Clinical Chemistry, Department of Mathemathical Sciences, Departments of

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and cisplatin (EDP-regimen) versus streptozotocin is currently under investigation for palliative purposes in the FIRM-ACT study ( http://www.firm-act.org ). The prognosis in ACC relates to tumour stage ( Icard et al . 2001 , Abiven et al

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Jack Junjie Chan Division of Medical Oncology, National Cancer Centre Singapore, Singapore, Singapore
Oncology Academic Clinical Programme, Duke-NUS Medical School, Singapore, Singapore

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Yirong Sim Oncology Academic Clinical Programme, Duke-NUS Medical School, Singapore, Singapore
Division of Surgery & Surgical Oncology, National Cancer Centre Singapore, Singapore, Singapore
SingHealth Duke-NUS Breast Centre, Singapore General Hospital, Singapore, Singapore

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Samuel Guan Wei Ow Department of Haematology-Oncology, National University Cancer Institute, Singapore, Singapore
Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore

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Joline Si Jing Lim Department of Haematology-Oncology, National University Cancer Institute, Singapore, Singapore
Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore

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Grace Kusumawidjaja Oncology Academic Clinical Programme, Duke-NUS Medical School, Singapore, Singapore
Division of Radiation Oncology, National Cancer Centre Singapore, Singapore, Singapore

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Qingyuan Zhuang Oncology Academic Clinical Programme, Duke-NUS Medical School, Singapore, Singapore
Division of Supportive and Palliative Care, National Cancer Centre Singapore, Singapore, Singapore

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Ru Xin Wong Oncology Academic Clinical Programme, Duke-NUS Medical School, Singapore, Singapore
Division of Radiation Oncology, National Cancer Centre Singapore, Singapore, Singapore

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Fuh Yong Wong Oncology Academic Clinical Programme, Duke-NUS Medical School, Singapore, Singapore
Division of Radiation Oncology, National Cancer Centre Singapore, Singapore, Singapore

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Veronique Kiak Mien Tan Oncology Academic Clinical Programme, Duke-NUS Medical School, Singapore, Singapore
Division of Surgery & Surgical Oncology, National Cancer Centre Singapore, Singapore, Singapore
SingHealth Duke-NUS Breast Centre, Singapore General Hospital, Singapore, Singapore

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Tira Jing Ying Tan Division of Medical Oncology, National Cancer Centre Singapore, Singapore, Singapore
Oncology Academic Clinical Programme, Duke-NUS Medical School, Singapore, Singapore

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. Cancer care services During the ‘circuit breaker’ period in Singapore, hospital-based cancer care services, inpatient hospices and home palliative care are considered as essential and remain operational. Otherwise, cancer screening and surveillance

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J Crona Department of Medical Sciences, Uppsala University, Uppsala, Sweden

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F Beuschlein Medizinische Klinik und Poliklinik IV, Klinikum der Universität München, Munich, Germany
Klinik für Endokrinologie, Diabetologie und Klinische Ernährung, UniversitätsSpital Zürich, Zürich, Switzerland

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K Pacak Section on Medical Neuroendocrinology, Eunice Kennedy Shriver National Institute of Child Health & Human Development, National Institutes of Health, Bethesda, Maryland, USA

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B Skogseid Department of Medical Sciences, Uppsala University, Uppsala, Sweden

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Study design Setting Recruitment target, n patients NCT number Randomized studies  Sunitinib Phase II, placebo controlled Palliative 74 Nbib1371201  Phenoxybenzamine vs doxazosin Phase III Curative and palliative

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Anela Blazevic Department of Internal Medicine, section Endocrinology, Erasmus MC, Rotterdam,

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Martijn P A Starmans Department of Radiology and Nuclear Medicine, Erasmus MC, Rotterdam, the Netherlands

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Tessa Brabander Department of Radiology and Nuclear Medicine, Erasmus MC, Rotterdam, the Netherlands

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Roy S Dwarkasing Department of Radiology and Nuclear Medicine, Erasmus MC, Rotterdam, the Netherlands

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Renza A H van Gils Department of Radiology and Nuclear Medicine, Erasmus MC, Rotterdam, the Netherlands

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Johannes Hofland Department of Internal Medicine, section Endocrinology, Erasmus MC, Rotterdam,

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Gaston J H Franssen Department of Surgery, Erasmus MC, Rotterdam, the Netherlands

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Richard A Feelders Department of Internal Medicine, section Endocrinology, Erasmus MC, Rotterdam,

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Wiro J Niessen Department of Radiology and Nuclear Medicine, Erasmus MC, Rotterdam, the Netherlands
Faculty of Applied Sciences, Department of Radiology and Nuclear Medicine, Delft University of Technology, Delft, the Netherlands

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Stefan Klein Department of Radiology and Nuclear Medicine, Erasmus MC, Rotterdam, the Netherlands

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Wouter W de Herder Department of Internal Medicine, section Endocrinology, Erasmus MC, Rotterdam,

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symptoms ( Blazevic et al. 2018 b , Daskalakis et al. 2018 ). In addition, recent studies found no survival or clinical benefit of prophylactic palliative surgery in asymptomatic patients (Blažević et al. 2018 a , Daskalakis et al. 2018

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Katherine I Wolf Department of Medicine, Division of Metabolism, Endocrinology and Diabetes, University of Michigan, Ann Arbor, Michigan, USA

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Linda Rose-Krasnor Pheo Para Alliance and Psychology Department, Brock University, St. Catharines, Ontario, Canada

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Stephanie Alband Pheo Para Alliance, Alexandria, Virginia, USA

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Jacques W M Lenders Department of Internal Medicine, Radboud University Medical Centre, Nijmegen, The Netherlands

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Lauren Fishbein Department of Medicine, Division of Endocrinology, Metabolism and Diabetes, and Department of Biomedical Informatics, University of Colorado School of Medicine, Aurora, Colorado, USA

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$2500 for health insurance, 13 had an annual cost of over $10,000/year. Figure 3 Personal financial burden related to pheochromocytoma/paraganglioma diagnosis and treatment. *Clinical nurse care, emergency medicine services, palliative care

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L D de Hosson Department of Medical Oncology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands

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J Stelwagen Department of Medical Oncology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands

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G Bouma Department of Medical Oncology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands

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B Sijtema Dieticians, Department of Medical Oncology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands

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S Huitema Dieticians, Department of Medical Oncology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands

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H J R van Faassen Department of Laboratory Medicine, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands

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G H de Bock Department of Epidemiology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands

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D J A de Groot Department of Medical Oncology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands

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M J E Campmans-Kuijpers Department of Gastroenterology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands

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I P Kema Department of Laboratory Medicine, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands

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E G E de Vries Department of Medical Oncology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands

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A M E Walenkamp Department of Medical Oncology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands

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first 4 weeks, standard care was continued. Thereafter, patients started with DIVIT. Dietician consultations were conducted at T4 by 1 out-patient visit and after 5, 10 and 15 weeks by telephone. Vitamin supplementation started at T4 or at week 8. The

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Alessandra Mangone Department of Clinical Sciences and Community Health, University of Milan, Milan, Italy
Institute of Metabolism and Systems Research, University of Birmingham, Birmingham, UK

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Barbara Altieri Division of Endocrinology and Diabetes, Department of Internal Medicine I, University Hospital, University of Würzburg, Würzburg, Germany

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Mario Detomas Division of Endocrinology and Diabetes, Department of Internal Medicine I, University Hospital, University of Würzburg, Würzburg, Germany

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Alessandro Prete Institute of Metabolism and Systems Research, University of Birmingham, Birmingham, UK
Centre for Endocrinology, Diabetes and Metabolism, Birmingham Health Partners, Birmingham, UK
Department of Endocrinology, Queen Elizabeth Hospital Birmingham, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK

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Haider Abbas Oncology Department, Queen Elizabeth Hospital Birmingham, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK

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Miriam Asia Department of Endocrinology, Queen Elizabeth Hospital Birmingham, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK

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Yasir S Elhassan Institute of Metabolism and Systems Research, University of Birmingham, Birmingham, UK
Centre for Endocrinology, Diabetes and Metabolism, Birmingham Health Partners, Birmingham, UK
Department of Endocrinology, Queen Elizabeth Hospital Birmingham, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK

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Giovanna Mantovani Department of Clinical Sciences and Community Health, University of Milan, Milan, Italy
Endocrinology Unit, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, Milan, Italy

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Cristina L Ronchi Institute of Metabolism and Systems Research, University of Birmingham, Birmingham, UK
Division of Endocrinology and Diabetes, Department of Internal Medicine I, University Hospital, University of Würzburg, Würzburg, Germany
Centre for Endocrinology, Diabetes and Metabolism, Birmingham Health Partners, Birmingham, UK
Department of Endocrinology, Queen Elizabeth Hospital Birmingham, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK

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). Moreover, approximately half of the patients have metastatic or inoperable disease at diagnosis ( Shariq & McKenzie 2021 ). For patients with advanced ACC, mitotane represents the current standard of care, used as monotherapy for selected patients with low

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Derek Raghavan Departments of Solid Tumor Oncology, Endocrinology, and Urologic Oncology, Levine, Cancer Institute, Charlotte, North Carolina, USA

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Antoinette R Tan Departments of Solid Tumor Oncology, Endocrinology, and Urologic Oncology, Levine, Cancer Institute, Charlotte, North Carolina, USA

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E Shannon Story Departments of Solid Tumor Oncology, Endocrinology, and Urologic Oncology, Levine, Cancer Institute, Charlotte, North Carolina, USA

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Earle F Burgess Departments of Solid Tumor Oncology, Endocrinology, and Urologic Oncology, Levine, Cancer Institute, Charlotte, North Carolina, USA

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Laura Musselwhite Departments of Solid Tumor Oncology, Endocrinology, and Urologic Oncology, Levine, Cancer Institute, Charlotte, North Carolina, USA

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Edward S Kim Departments of Solid Tumor Oncology, Endocrinology, and Urologic Oncology, Levine, Cancer Institute, Charlotte, North Carolina, USA

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Peter E Clark Departments of Solid Tumor Oncology, Endocrinology, and Urologic Oncology, Levine, Cancer Institute, Charlotte, North Carolina, USA

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especially emphasized. Frequent video or phone contact when office visits are reduced can be immensely reassuring and should be considered a vital part of the palliative strategy. Individualizing care for patients with rare and complex tumors is imperative

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V Craig Jordan Departments of Oncology and Pharmacology, Lombardi Comprehensive Cancer Center, Georgetown University Medical Center, Washington, District of Columbia 20057, USA

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career path as treatments were primitive and invariably unsuccessful (except for childhood leukemia). Tamoxifen and I became the ‘odd couple’, but nobody cared in the 1970s, as combination cytotoxic chemotherapy was predicted to cure cancer. Be that as it

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