Diagnosing and Treating Adult Cancers and Associated Impairments (2021)

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Committee on Diagnosing and Treating Adult Cancers Board on Health Care Services Health and Medicine Division A Consensus Study Report of PREPUBLICATION COPY—Uncorrected Proofs 

THE NATIONAL ACADEMIES PRESS  500 Fifth Street, NW  Washington, DC 20001 This activity was supported by a contract between the National Academy of Sciences and the U.S. Social Security Administration. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project. International Standard Book Number-13: 978-0-309-XXXXX-X International Standard Book Number-10: 0-309-XXXXX-X Digital Object Identifier: https://doi.org/10.17226/25956 Additional copies of this publication are available from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu. Copyright 2021 by the National Academy of Sciences. All rights reserved. Printed in the United States of America Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and treating adult cancers and associated impairments. Washington, DC: The National Academies Press. https://doi.org/10.17226/25956. PREPUBLICATION COPY—Uncorrected Proofs 

The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Marcia McNutt is president. The National Academy of Engineering was established in 1964 under the charter of the National Academy of Sciences to bring the practices of engineering to advising the nation. Members are elected by their peers for extraordinary contributions to engineering. Dr. John L. Anderson is president. The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president. The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The National Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine. Learn more about the National Academies of Sciences, Engineering, and Medicine at www.nationalacademies.org. PREPUBLICATION COPY—Uncorrected Proofs 

Consensus Study Reports published by the National Academies of Sciences, Engineering, and Medicine document the evidence-based consensus on the study’s statement of task by an authoring committee of experts. Reports typically include findings, conclusions, and recommendations based on information gathered by the committee and the committee’s deliberations. Each report has been subjected to a rigorous and independent peer-review process and it represents the position of the National Academies on the statement of task. Proceedings published by the National Academies of Sciences, Engineering, and Medicine chronicle the presentations and discussions at a workshop, symposium, or other event convened by the National Academies. The statements and opinions contained in proceedings are those of the participants and are not endorsed by other participants, the planning committee, or the National Academies. For information about other products and activities of the National Academies, please visit www.nationalacademies.org/about/whatwedo. PREPUBLICATION COPY—Uncorrected Proofs 

COMMITTEE ON DIAGNOSING AND TREATING ADULT CANCERS DAN G. BLAZER II (Chair), J.P. Gibbons Professor Emeritus of Psychiatry and Behavioral Sciences, Duke University School of Medicine ALEX A. ADJEI, Professor of Oncology and Pharmacology, Mayo Clinic WALLACE AKERLEY, Professor, Huntsman Cancer Institute, The University of Utah JOSE G. BAZAN, Associate Professor, Radiation Oncology, The Ohio State University GABRIEL A. BROOKS, Assistant Professor of Medicine, Geisel School of Medicine, Dartmouth College DEBORAH W. BRUNER, Senior Vice President for Research, Robert W. Woodruff Chair in Nursing, Emory University GRACE B. CAMPBELL, Assistant Professor, University of Pittsburgh School of Nursing SUSAN M. DOMCHEK, Basser Professor in Oncology, University of Pennsylvania PATRICIA A. GANZ, Distinguished Professor, Schools of Medicine and Public Health, University of California, Los Angeles ROSA HWANG, Professor, MD Anderson Cancer Center, University of Texas NANCY KEATING, Professor of Health Care Policy and Medicine, Harvard Medical School ANITA J. KUMAR, Medical Oncologist, Assistant Professor, Tufts University Medical Center LARISSA NEKHLYUDOV, Professor of Medicine, Brigham and Women’s Hospital, Harvard Medical School KATHRYN SCHMITZ, Professor, Public Health Sciences, The Pennsylvania State University College of Medicine DIANE VON AH, Professor, Indiana University School of Nursing Consultant HOWARD H. GOLDMAN, Professor of Psychiatry, University of Maryland School of Medicine Study Staff ROBERTA WEDGE, Study Director LAURA AIUPPA, Senior Program Officer RUTH COOPER, Research Associate v PREPUBLICATION COPY—Uncorrected Proofs 

SAMIRA ABBAS, Senior Program Assistant JULIE WILTSHIRE, Senior Finance Business Partner SHARYL NASS, Senior Director, Board on Health Care Services vi PREPUBLICATION COPY—Uncorrected Proofs 

Reviewers This Consensus Study Report was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published report as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the study charge. The review comments and draft manu- script remain confidential to protect the integrity of the deliberative process. We thank the following individuals for their review of this report: DENISE R. ABERLE, University of California, Los Angeles NANCY DAVIDSON, Fred Hutchinson Cancer Research Center LORETTA ERHUNMWINSEE, City of Hope, Los Angeles JESSE R. FANN, Fred Hutchinson Cancer Research Center CHRISTOPHER R. FLOWERS, MD Anderson Cancer Center CHRISTOPHER FRIESE, University of Michigan SHELLEY HWANG, Duke Cancer Center RANDY JONES, University of Virginia CHRISTOPHER S. LATHAN, Harvard Medical School MARYAM B. LUSTBERG, The Ohio State University DEBORAH MAYER, University of North Carolina RICHARD I. WHYTE, Beth Israel Deaconess Medical Center Although the reviewers listed above provided many constructive com- ments and suggestions, they were not asked to endorse the conclusions vii PREPUBLICATION COPY—Uncorrected Proofs 

viii REVIEWERS or recommendations of this report, nor did they see the final draft be- fore its release. The review of this report was overseen by ROBERT S. LAWRENCE, Johns Hopkins Bloomberg School of Public Health, and DAVID R. CHALLONER, University of Florida. They were responsible for making certain that an independent examination of this report was carried out in accordance with the standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the authoring committee and the National Academies. PREPUBLICATION COPY—Uncorrected Proofs 

Acknowledgments The study committee and the National Academies of Sciences, Engi- neering, and Medicine’s Health and Medicine Division project staff take this opportunity to recognize and thank the many individuals who shared their time and expertise to support the committee’s work and inform its deliberations. This study was sponsored by the U.S. Social Security Administration (SSA). We thank Alayna Ness, Vincent Nibali, Mary Beth Rochowiak, and Megan Butson for their guidance and support. The committee also acknowledges SSA for providing data on disability claims. The committee benefited greatly from discussions with individuals who presented at the committee’s open sessions: Cathy Bradley, Michael Feuerstein, Barbara Hoffman, Shelley Fuld Nasso, and Rebecca Nellis. The committee is grate- ful to these presenters for volunteering to share their expertise, knowledge, data, and opinions not only with the committee but also with members of the public who participated in the committee’s open sessions. The committee thanks the National Academies staff who provided support for this project, including Roberta Wedge (study director), Laura Aiuppa (senior program officer), Ruth Cooper (research associate), Samira Abbas (senior program assistant), Julie Wiltshire (senior finance business partner), and Sharyl Nass (Board on Health Care Services senior director). Research assistance was provided by Jorge Mendoza-Torres (senior librar- ian) and Emily Zevon (program officer). Robert Pool provided editorial assistance for the final report. ix PREPUBLICATION COPY—Uncorrected Proofs 

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Contents ACRONYMS AND ABBREVIATIONS xv SUMMARY 1 1 INTRODUCTION 17 Committee’s Charge, 22 Committee’s Approach, 24 Population of Interest and Selection of Cancers, 24 Organization of the Report, 25 References, 27 2 THE U.S. SOCIAL SECURITY ADMINISTRATION DISABILITY PROCESS 31 Disability Concepts, 32 U.S. Social Security Administration’s Disability Determination Process, 33 U.S. Social Security Administration Cancer Claims Data, 37 Findings and Conclusion, 44 References, 44 3 CANCER EPIDEMIOLOGY 47 Cancer Incidence in the U.S. Population, 48 Cancer Mortality, 59 Cancer Survival, 64 Findings and Conclusions, 66 References, 67 xi PREPUBLICATION COPY—Uncorrected Proofs 

xii CONTENTS 4 DIAGNOSIS, STAGING, AND TREATMENT OF CANCER 71 Screening for Cancer, 74 Diagnosing Cancer, 76 Staging and Characterization of Cancer, 78 Current Treatments, 81 Prognosis, 96 Findings and Conclusions, 100 References, 102 5 BREAST CANCER 107 Screening, 108 Diagnosis and Staging, 109 Treatment of Noninvasive Breast Cancer, 112 Treatment of Invasive, Localized Breast Cancer, 113 Treatment of Metastatic Breast Cancer, 130 Life After Breast Cancer Diagnosis, 137 Findings and Conclusions, 142 References, 143 6 LUNG CANCER 155 Risk Factors, 156 Lung Cancer Screening, 156 Diagnosis and Staging of Lung Cancer, 157 Lung Cancer Treatment, 161 Summary of Lung Cancer Diagnostic Evaluation and Treatment, 172 Life After Lung Cancer Diagnosis, 172 Findings and Conclusions, 178 References, 180 7 SELECTED TOPICS IN OTHER CANCERS 193 Gastrointestinal Cancers, 194 Head and Neck Cancers, 200 Hematalogic Cancers, 201 Ovarian Cancer, 207 Melanoma, 208 Findings and Conclusion, 209 References, 211 8 NEW AND EMERGING THERAPIES 219 Development of Therapies for Cancer, 220 Surgery, 221 Radiation, 227 PREPUBLICATION COPY—Uncorrected Proofs 

CONTENTS xiii Systemic Therapies, 228 Long-Term Outcomes of New and Emerging Therapies, 240 Findings and Conclusions, 241 References, 243 9 CANCER-RELATED IMPAIRMENTS LEADING TO FUNCTIONAL LIMITATIONS 253 Concepts in Impairment and Function, 253 Selected Cancer-Related Impairments, 257 Comorbidities and Symptom Clusters, 289 Multimodal Interventions, 291 Findings and Conclusions, 294 References, 295 10 SURVIVORSHIP OUTCOMES AND CARE DELIVERY 317 Patient-Centered Cancer Care, 317 Settings for Cancer Care, 329 Emerging Directions in Cancer Care Delivery, 333 Findings and Conclusions, 336 References, 337 APPENDIXES A Biographical Sketches of Committee Members and Consultant 345 B Public Workshop Agendas 355 PREPUBLICATION COPY—Uncorrected Proofs 

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Acronyms and Abbreviations 3-DCRT 3-D conformal radiation therapy AC-T adriamycin and cytoxan followed by taxol AJCC American Joint Committee on Cancer ALK anaplastic lymphoma kinase ALL acute lymphoblastic leukemia ALND axillary lymph node dissection AML acute myeloid leukemia APBI accelerated partial breast irradiation ASCO American Society of Clinical Oncology BCS breast-conserving surgery CAR chimeric antigen receptor CBT cognitive behavioral therapy CDC Centers for Disease Control and Prevention CDK cyclin-dependent kinase 4/6 CDKI cyclin-dependent kinase inhibitor CIPN chemotherapy-induced peripheral neuropathy CLL chronic lymphocytic leukemia CML chronic myeloid leukemia CMS Centers for Medicare & Medicaid Services COPD chronic obstructive pulmonary disease CPG clinical practice guideline xv PREPUBLICATION COPY—Uncorrected Proofs 

xvi ACRONYMS AND ABBREVIATIONS CT computed tomography CTLA4 cytotoxic T-lymphocyte associated protein 4 DCIS ductal carcinoma in situ dd AC-T dose-dense adriamycin and cyclophosphamide followed by taxol DNA deoxyribonucleic acid DSM Diagnostic and Statistical Manual of Mental Disorders EBRT external beam radiation therapy EGFR epidermal growth factor receptor EHR electronic health record ER estrogen receptor ES-SCLC extensive-stage small-cell lung cancer FDA U.S. Food and Drug Administration FDG-PET 2-fluor-2-deoxy-D-glucose positron emission tomography FIT fecal immunohistochemical testing GI gastrointestinal GVHD graft-versus-host disease Gy gray; unit used to quantify absorbed radiation dose HER2 human epidermal growth factor receptor 2 HPV human papillomavirus HR hormone receptor HSCT hematopoietic stem cell transplant ICD International Classification of Diseases ICF International Classification of Functioning, Disability and Health IMRT intensity-modulated radiation therapy IORT intraoperative radiation therapy LHRH luteinizing hormone-releasing hormone LS-SCLC limited-stage small-cell lung cancer MBC metastatic breast cancer MRI magnetic resonance imaging mTOR mammalian target of rapamycin NCCN National Comprehensive Cancer Network NCI National Cancer Institute PREPUBLICATION COPY—Uncorrected Proofs 

ACRONYMS AND ABBREVIATIONS xvii NGS next-generation sequencing NHL non-Hodgkin lymphoma NSAID nonsteroidal anti-inflammatory drug NSCLC non-small-cell lung cancer NTRK neurotrophic receptor tyrosine kinase OCM oncology care model OR odds ratio PARP poly ADP-ribose polymerase pCR pathological complete response PD programmed (cell) death PD-1 programmed cell death-1 PD-L1 programmed death ligand-1 PET positron emission tomography PHQ-9 Patient Health Questionnaire PI3K phosphoinositide 3-kinases PR progesterone receptor PRO patient-reported outcome PROM patient-reported outcome measure QOL quality of life RCT randomized controlled trial RFC residual functional capacity RT radiation therapy SABR stereotactic ablative radiotherapy SBRT stereotactic body radiation therapy SCLC small-cell lung cancer SEER Surveillance, Epidemiology, and End Results Program (NCI) SERM selective estrogen receptor modulator SLND sentinel lymph node dissection SNRI serotonin–norepinephrine reuptake inhibitor SRS stereotactic radiosurgery SRT stereotactic radiotherapy SSA U.S. Social Security Administration SSDI Social Security Disability Insurance SSI Supplemental Security Income SSRI selective serotonin reuptake inhibitor TC taxotere and cytoxan PREPUBLICATION COPY—Uncorrected Proofs 

xviii ACRONYMS AND ABBREVIATIONS TNBC triple negative breast cancer TNM tumor, node, and metastases TRK tropomyosin receptor kinase USPSTF U.S. Preventive Services Task Force VATS video-assisted thorascopic surgery VMAT volumetric-modulated arc radiotherapy PREPUBLICATION COPY—Uncorrected Proofs