Desmoid Tumors
Desmoid Tumors (DT), also called Aggressive Fibromatoses, are a rare fibroblastic proliferative disease, with an incidence of 2 to 4 new cases per million people per year. Despite the absence of a metastatic potential, DT cause significant morbidity and a
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Charisse Litchman Editor
Desmoid Tumors
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Editor Dr. Charisse Litchman Department of Neurology, The Stamford Hospital, Stamford, CT 06904 Assistant Clinical Professor, Department of Neurology, Columbia University Co-Founder and Former Chair of the Scientific Advisory Board, The Desmoid Tumor Research Foundation USA [email protected] Office Address: 1290 Summer Street, Stamford, CT 06905
ISBN 978-94-007-1684-1 e-ISBN 978-94-007-1685-8 DOI 10.1007/978-94-007-1685-8 Springer Dordrecht Heidelberg London New York Library of Congress Control Number: 2011933915 © Springer Science+Business Media B.V. 201 No part of this work may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, microfilming, recording or otherwise, without written permission from the Publisher, with the exception of any material supplied specifically for the purpose of being entered and executed on a computer system, for exclusive use by the purchaser of the work. Printed on acid-free paper Springer is part of Springer Science+Business Media (www.springer.com)
Preface
Desmoid tumors are currently amongst the rarest of rare tumors that afflict patients. The incidence of these tumors is not as low as is currently believed, however. Misdiagnosed by treating physicians and oncologists alike, especially in cases which remain stable or even regress over time, they may be labeled inaccurately or overlooked entirely. Indeed there are several different pathologic terms for desmoid tumors which confuse the diagnosis. Despite progress in molecular genetic profiling that would aid in precise identification, once designated as benign further efforts at identification are often abandoned. Over the past decade, at major sarcoma centers, at high esteemed research institutions and at professional meetings such as the prestigious annual CTOS (Connective Tissue Oncology Society) meeting, the importance of understanding desmoid tumors has become increasingly more evident. More research projects were performed and publications submitted in the last 5 years than in the preceding 20 years. Much of this increasing awareness can be credited to the advent of vocal grass-root advocacy groups. Patient education has been heightened through contacts made on-line and powerful alliances forged between researchers, resulting in shared resources and improved outcomes. However, the majority of patients do not receive their care at dedicated sarcoma centers and many oncologists remain unfamiliar with the identification of and currently recommended treatments for desmoid tumors. This book will serve as the first comprehensive publication on the desmoid tumor. Although it may not answer all the questions, as most of these answers have not yet been found, it will introduce the reader, be he a scientist, physician or patient, to what a desmoid is and to the current important players who are leading the guest to find a cure. Chapter 1 summarizes the increased recognition of the need to identify and
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