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Suggested Citation:"Summary." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"Summary." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"Summary." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"Summary." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"Summary." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"Summary." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"Summary." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"Summary." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"Summary." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"Summary." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"Summary." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"Summary." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"Summary." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"Summary." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"Summary." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"Summary." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Summary Cancer is the second leading cause of death among adults in the United States after heart disease. In 2020, an estimated 1.8 million new cases of cancer were diagnosed and more than an estimated 600,000 cancer deaths occurred. However, improvements in cancer treatment and earlier detection are leading to growing numbers of cancer survivors (defined as any living person with a history of cancer, from the time of diagnosis until death). The median age for a cancer diagnosis in the United States is 66 years; thus, approximately half of all newly diagnosed cancer patients are working-age adults. In 2020, the 10 most common cancers diagnosed in the U.S. adult population were: • Breast cancer • Lung and bronchus cancer • Prostate cancer • Colorectal cancer • Melanoma of the skin • Bladder cancer • Non-Hodgkin lymphoma • Kidney and renal pelvis cancer • Uterine cancer • Leukemia For many people with cancer, the cancer itself and its treatment can cause substantial adverse effects, referred to in this report as cancer-related 1 PREPUBLICATION COPY—Uncorrected Proofs

2 DIAGNOSING AND TREATING ADULT CANCERS impairments, that can be physiologic (e.g., pain, fatigue) or psychologic (e.g., depression, anxiety). Some impairments are self-limiting and resolve once treatment or healing is complete (acute effects), such as postopera- tive pain; others begin during treatment, but persist afterward (long-term effects), such as chronic neuropathy following chemotherapy; and still others, such as radiation fibrosis, may not be evident during treatment, but may develop months, or even years after the cancer treatment is complete (late-onset effects). Cancer-related impairments can affect an individual’s ability to func- tion, placing limitations on activities such as walking, standing, lifting, carrying, or thinking. These functional limitations can interfere with an individual’s ability to fully perform routine actions and responsibilities in life, including work. While all cancers and their treatments have the potential to cause im- pairments and associated functional limitations, some cancers and cancer treatments are more likely to cause these consequences than others, depend- ing on cancer site, cancer stage, type and duration of treatment, as well as other clinical factors, including comorbidities. Cancer-related impairments and the resulting functional limitations may or may not lead to disability as defined by the U.S. Social Security Administration (SSA), however, adults surviving cancer who are unable to work because of cancer-related impair- ments and functional limitations may apply for disability benefits from SSA. SSA has a five-step disability determination process, which considers listings of medical impairments (“listings”) including malignant neoplastic disease (cancer). SSA considers the medical impairments in the listings to be severe enough to prevent an adult from performing any gainful employment. SSA’s current Listings of Impairments for adult cancers focus predominantly on terminal and metastatic cancers with a high likelihood of death and do not include, for the most part, impairments and functional limitations that may result from cancer treatments. COMMITTEE’S CHARGE In order to keep the information on which it bases its disability listings for adult cancers up to date, in 2019, SSA asked the National Academies of Sciences, Engineering, and Medicine (the National Academies) to convene a committee of experts to provide an overview of the diagnosis, treatment, and prognosis of selected adult cancers, particularly breast cancer and lung cancer (see Box S-1 for the committee’s complete Statement of Task). The study committee was asked to not examine access to care for diagnosing and treating cancer, and it was not asked to make recommendations based on its overview of the current status of cancer diagnosis, treatment, or prognosis. PREPUBLICATION COPY—Uncorrected Proofs

SUMMARY 3 BOX S-1 Statement of Task An ad hoc committee of the National Academies of Sciences, Engineering, and Medicine will conduct a study to provide an overview of the current status of the diagnosis, treatment, and prognosis of select common adult cancers. In developing its report the committee will: 1. Provide an overview of the current status of the diagnosis, treatment, and prognosis of adult cancers including, but not limited to, breast cancer and lung cancer, and the relative levels of associated functional limitation typically associated with these cancers, common treatments, and other considerations in the U.S. population age 18 and older; 2. Identify adult cancers with recent advances in treatment or changes in prognosis, including but not limited to breast cancer, and lung cancer, and describe to the degree possible: a. The professionally accepted diagnostic techniques used in identifying adult cancers (for example, laboratory and clinical findings); b. The stages of adult cancers, how the stages are determined (for ex- ample, by specific laboratory findings), and what the stages mean in terms of treatment and prognosis; c. Clinical standards for identifying complete remission or cure, and variability in the time period used to identify remission, the difference between complete remission and partial remission (if appropriate), and the consequences of partial remission (for example, if partial remission results in a reduction in type or intensity of treatment); d. Secondary impairments that result from either the cancer or the treatment (for example, cognitive impairment following certain treatment); and e. Common long-term and late effects of the cancer or therapy. 3. Identify the types of treatments available and describe to the degree possible: a. The clinical practice guidelines for receiving the treatments; b. The settings in which the treatments are provided; c. What receipt of the treatments indicates about the severity of the medical condition; and d. The likelihood of improvement when receiving the treatments and the period over which the improvement would be expected; 4. Provide a summary of selected treatments currently being studied in clini- cal trials for adult cancers; and 5. Provide the median survival time and survival rates dependent on the stage and the type of cancer (including area of body affected). The report will include conclusions but not recommendations. The committee shall not describe issues with respect to access to treatments. While the U.S. So- cial Security Administration (SSA) recognizes people may have difficulty accessing care or particular forms of treatment, some do successfully access those treat- ments. SSA may receive information about those treatments in the medical records SSA considers when making disability determinations and conducting continuing disability reviews. SSA understands improvement is not certain in all cases. SSA makes individual decisions on each case based on all the evidence they receive. PREPUBLICATION COPY—Uncorrected Proofs

4 DIAGNOSING AND TREATING ADULT CANCERS COMMITTEE’S APPROACH To complete the Statement of Task, the National Academies empaneled a committee of 15 members with expertise in the diagnosis and treatment of breast cancer, lung cancer, hematopoietic cancers, colorectal cancer, radiation oncology, cancer survivorship and rehabilitation, long-term and late-onset effects of cancer and its treatment, cognitive impairment, primary care, cancer research, mental health, and epidemiology. The committee held five meetings that included two public sessions and conducted extensive literature searches. At the committee’s request, SSA provided data for cancer disability claims and claims overall for 2015– 2019. These data informed the committee’s considerations of other can- cers—specifically colorectal cancer, pancreatic cancer, liver and bile duct cancers, leukemias, lymphomas, multiple myeloma, ovarian cancer, head and neck cancers, and melanoma—in addition to breast cancer and lung cancer, in its overview of the current status of the diagnosis, treatment, and prognosis of select common adult cancers. CHANGING CANCER EPIDEMIOLOGY Between 1992 and 2017, the number of new cancer cases diagnosed annually (incidence rate) in the U.S. adult population has declined by about 21% and the annual number of deaths declined by 43% during this period. The incidence rate of many cancers has changed in recent decades as a result of public health efforts (e.g., tobacco control and screening and removing precancerous colon lesions, have reduced the incidence of lung cancer and colorectal cancer, respectively), changes in standards of care (e.g., breast cancer incidence decreased slightly in the 2000s due to recommendations against the use of postmenopausal hormone replacement), and lifestyle behaviors (e.g., the growing obesity epidemic may result in increasing inci- dence of other cancers). In 2020, about 55% of the estimated 276,480 new breast cancer cases were diagnosed in women aged 64 years or younger. Although the incidence rate of breast cancer in women older than 50 has remained about the same, over the past 10 years, the incidence in women under age 40 has been ris- ing. While breast cancer occurs in men, it is rare. The incidence rate of lung cancers is decreasing. One-third of the estimated 228,820 lung cancer diagnoses in 2020 were made in people younger than 65, primarily those aged 55–64 years. Non-small-cell lung cancer (NSCLC) accounts for 85% of all new cases of lung cancer and small-cell lung cancer (SCLC) accounts for the remaining 15%. Smoking, a main cause of both NSCLC and SCLC, contributes to 80–90% of lung cancer, with an estimated latency period of about 20 years; however, not PREPUBLICATION COPY—Uncorrected Proofs

SUMMARY 5 all lung cancer is associated with smoking and people who never smoke can develop lung cancer. These data are reflected in the disability claims received by SSA. Be- tween 2015 and 2019, the total disability claims awarded by SSA with cancer as the primary diagnosis also steadily decreased from 125,904 to 114,187. Breast cancer was the most common diagnosis in the cancer claims (16%), followed by lung cancer (14%) and colorectal cancer (12%); other cancers listed in the SSA claims (in order of frequency) are head and neck cancers, pancreatic cancer, nervous system cancers, leukemia, lym- phoma, liver or bile duct cancers, and ovarian cancer. Cancers with the greatest mortality are not necessarily those with the greatest incidence. Lung cancer is the leading cause of U.S. cancer deaths and breast cancer is the fourth leading cause of cancer deaths. Pancreas cancer, ovarian cancer, liver cancer, and esophageal cancer have particularly high mortality rates relative to their incidence rates. Cancer mortality rates have fallen since 1991, primarily due to declines in mortality for breast, colorectal, prostate, and particularly lung cancer. The decline in mortality has resulted in a growing number of cancer survivors. In 2019, there were an estimated 16.9 million U.S. cancer survi- vors; this number is expected to increase to more than 26 million by 2040. About one-third of cancer survivors are younger than 65 years. Cancer- specific survival rates have improved over the years, meaning more people are living longer after their diagnosis, although there are often substantial differences across cancer types. Survival rates tend to be better for cancers that are localized at diagnosis (i.e., confined to the tissue of origin) as is of- ten the case for breast cancer, whereas cancers that are typically diagnosed at more advanced stages, such as lung cancer or ovarian cancer, tend to have poorer survival rates. Outcomes such as survival are based on much more than stage at presentation. Conclusions 1. The population of cancer survivors is growing and will continue to do so as a result of earlier diagnosis of some cancers and advances in treatments. 2. Cancer survivors are living longer with impairments and functional limitations that are a result of their cancer and its treatment. SCREENING FOR, DIAGNOSING, AND STAGING CANCERS Effective screening tests are available for some cancers, including colorectal cancer, lung cancer, and breast cancer; however, not all people who are eligible are actually screened. Moreover, many people, particularly PREPUBLICATION COPY—Uncorrected Proofs

6 DIAGNOSING AND TREATING ADULT CANCERS younger people without known risk factors such as a family history of can- cer, are below the age threshold for screening and may present with more advanced cancers when detected. While screening can be beneficial, it is not without risks such as false positives. A cancer diagnosis may include pathological tissue examination, imag- ing studies (x-rays, computed tomography scans, ultrasound imaging, mag- netic resonance imaging, and positron emission tomography), and other diagnostic techniques for specific cancers. A cancer diagnosis involves a biopsy procedure—needle or surgical—to collect a tissue sample for micro- scopic examination by a pathologist to differentiate and stage the cancer and identify molecular biomarkers. A localized or early-stage cancer is generally a single tumor, without evidence of spread (metastasis) beyond the initial site; advanced stage can- cer shows evidence of metastasis to one or more distant sites. The most common cancer staging system is that of the American Joint Committee on Cancer, which differs for each cancer type and ranges from stage 1 (local- ized/early stage) to stage 4 (metastatic/advanced stage). The stage is deter- mined on the basis of the T stage (size or extent of the primary tumor), the N stage (the extent of regional lymph node spread), and the M stage (the presence or absence of distant metastasis). For breast cancer, staging also involves non-anatomical factors such as tumor biomarker status. Treatment approaches often require molecular biomarker information in addition to anatomic information for staging. For example, breast cancers are classified based on the presence of specific receptor proteins on the surface of cancer cells, including the hormone receptors (HR)—estrogen receptor (ER) or progesterone receptor (PR)—and human epidermal growth factor receptor 2 (HER2, also called HER2/neu). Cancer biomarker testing includes analysis of DNA from cancer cells and possibly other genomic and molecular tests. Lung cancers are classified by the microscopic appearance of the cancer cells to distinguish SCLC from NSCLC as well to differentiate between the subtypes of NSCLC. In addition, using immunohistochemistry testing and molecular biomarker testing, lung cancers may be further classified by whether the cancer cells exhibit specific genetic abnormalities, such as mu- tations of the epidermal growth factor receptor gene, and by their expres- sion of the programmed cell death ligand-1–cell surface receptor protein. Biomarkers are used together with the cancer stage to determine a cancer treatment plan and prognosis. Conclusions 1. Screening can help to detect cancers early, when they are most likely to be cured; however, screening tests are not always used and are not available for many cancers. PREPUBLICATION COPY—Uncorrected Proofs

SUMMARY 7 2. The increasingly common use of new molecular and genomic as- says to refine the diagnosis of many cancers can help to identify patients who may benefit from targeted treatments. TREATING CANCER Each person’s experience of cancer is unique from the time of diagnosis, through treatment, to survivorship, and for some patients to end of life. A patient’s cancer care trajectory, shown in Figure S-1, rests on many fac- tors including the type of cancer the patient has, how far the cancer has progressed in the body, what treatments are available and tolerated by the patient, and the outcomes they experience, including mental and physical health. After a patient receives a diagnosis of cancer and begins treatment planning with the cancer care team (a), supportive and palliative care along with survivorship care may be initiated regardless of whether the patient is to be treated with curative intent (b) or noncurative intent (c). Patients who are cancer free after treatment (d) or who have chronic, stable, or in- termittent disease (e) may be monitored for prolonged periods to assess for any recurrent or new primary cancers (g). Patients who receive noncurative treatments (c) may also have chronic, stable, or intermittent disease (e) and undergo surveillance for the development of cancer recurrence or a new primary cancer (g). Whether treated with curative or noncurative intent, some patients experience a progression of their cancer (f). Regardless of the patient’s cancer care trajectory or where she or he is along it, palliative or supportive care and survivorship care are relevant to all patients. Palliative or supportive care (distinct from end of life care) encompass treatments and services designed to prevent and alleviate suffering and support the best possible quality of life for patients. Supportive/Palliative (d) Care and Survivorship Care for All Cancer Cancer Free— Patients, Management (b) No Evidence of Late and Long-Term of Disease Effects of Treatment (a) Cancer-Directed and Promotion of Treatment with (e) General Health and Diagnosis, Curative Intent Chronic, Stable, Wellness Staging, and or Intermittent Treatment (c) Disease Surveillance for Planning Cancer-Directed (g) Recurrent and New Treatment with (f) Recurrence or Primary Cancers Noncurative Intent Disease New Primary Progression Cancer FIGURE S-1 The cancer care trajectory. PREPUBLICATION COPY—Uncorrected Proofs

8 DIAGNOSING AND TREATING ADULT CANCERS Standards of Care Clinical practice guidelines developed by professional organizations such as the American Society of Clinical Oncology and the National Com- prehensive Cancer Network provide recommendations on standards of care for many kinds of cancer. Most cancers are treated with local therapies— surgery and radiation. Less common local therapies such as ablation and embolization may also be used for some cancers. Systemic therapies, such as chemotherapy, may also be administered before (neoadjuvant) or after (adjuvant) surgery. For certain cancers, active surveillance or watchful wait- ing determine if and when treatment is necessary. Surgery to remove the tumor can be performed to treat localized cancer and for palliation of some symptoms. Surgery may also be used for biopsy to stage the cancer, to prevent the development of cancer (e.g., prophylactic mastectomy) in high-risk individuals, and for reconstruction after tumor resection or complications of cancer treatment. Although most postop- erative adverse effects resolve with healing, long-term effects can include chronic pain, limitations in range of motion, infection, lymphedema, and deformities that may be cosmetic (e.g., from a mastectomy) or functional (e.g., amputation). Radiation therapy seeks to damage the DNA in cancer cells and kill the cells. The most common form of radiation therapy is external beam radia- tion therapy although other types of radiation therapy may also be used. Radiation therapy is typically delivered as daily fractions of a dose over several weeks in order to allow the normal cells to repair themselves and repopulate damaged tissues. Long-term effects from radiation can include lymphedema, tissue scarring, heart disease, and the development of other cancers. Systemic therapies include chemotherapy, endocrine therapy, targeted therapy, immunotherapy, and stem cell therapy. The use of these therapies depends on the type of cancer, its staging, and other patient characteristics, including genetics (both germline and somatic mutations). Chemotherapy, which uses drugs to stops the growth of cancer cells, affects rapidly grow- ing cells regardless of whether they are cancer cells or normal cells. Some systemic therapies are associated with a number of acute and long-term adverse effects such as peripheral neuropathy, cardiac dysfunction, and chronic fatigue. Endocrine therapies are used for both localized and metastatic cancers that are hormone receptor positive. They may be taken for long periods of time. Targeted therapies are a form of personalized medicine; their use is based on whether a patient’s tumor expresses certain biomarkers, which indicates that the targeted therapy is likely to be effective. Targeted thera- pies have significantly improved survival of many patients with advanced PREPUBLICATION COPY—Uncorrected Proofs

SUMMARY 9 cancers; however, they also can result in a number of chronic toxicities. There are different immunotherapy approaches that include nonspecific immune system enhancers, such as interferon, cancer vaccines, adoptive T-cell therapy, and immune checkpoint inhibitor antibodies. These agents can also cause immune-related adverse effects that can affect every organ in the body and can even be fatal; however, the long-term and late-onset effects of these therapies are poorly understood. Finally, hematopoietic stem cell transplant, also called bone marrow transplant, is frequently used for patients with hematologic cancers. Trans- plants may be autologous (using the patient’s own stem cells) or allogenic (receiving cells from a related or unrelated donor). The latter transplant carries the risk of graft versus host disease, among other adverse effects. Breast Cancer Breast cancer treatment is determined by clinical practice guidelines based on stage and other biologic aspects of the cancer, patient comorbidi- ties, menopausal status, and patient preferences. A combination of local treatments along with systemic therapy is typically used. A key determinant of invasive breast cancer treatment is receptor status, chief among which is the presence or absence of hormone receptors and HER2. About 68% of breast cancers are HR positive/HER2 negative, 10% are HR positive/HER2 positive, 10% are triple negative (ER, PR and HER2 negative), and 4% are HR negative/HER2 positive. For localized breast cancer, surgery typically takes the form of breast- conserving surgery (e.g., lumpectomy) or mastectomy. Surgery for invasive breast cancer requires a sentinel lymph node biopsy, and if the cancer has spread to the lymph nodes (regional breast cancer), an axillary node dis- section may be performed. Lymph node dissection has potential adverse effects including lymphedema and neuropathy. Radiation therapy to the whole breast is standard of care, but partial breast irradiation techniques may also be used for some patients; postmastectomy radiation is generally used for patients with stage III breast cancer. Systemic treatment for localized breast cancer may include endocrine therapy (e.g., tamoxifen or an aromatase inhibitor) for HR-positive breast cancer, which may be taken for many years. Other systemic therapies may target the HER2 protein. Triple negative breast cancer is treated with che- motherapy, PARP inhibitors, and immunotherapy. Fewer than 10% of patients are initially diagnosed with metastatic breast cancer (i.e., breast cancer that has typically spread to the liver, brain, bones, or lungs). Treatment for metastatic breast cancer is determined by HR and HER2 status, next generation sequencing and tumor genomics, PREPUBLICATION COPY—Uncorrected Proofs

10 DIAGNOSING AND TREATING ADULT CANCERS timing and types of prior therapies, the need to achieve a response to therapy quickly because of impending or actual organ damage, symptoms, and patient preference. Lung Cancer Standards of treatment for lung cancer are determined by tumor histol- ogy, tumor location/size, stage, molecular characteristics, as well as the pa- tient’s health and comorbidities. As with breast cancer, there are guidelines that provide treatment protocols for NSCLC and SCLC. Standard of care for Stage 1 and II NSCLC is multimodal and includes surgical resection. For patients in whom the risk of relapse is greater than 25%, neoadjuvant chemotherapy has survival benefits. Whether neoadju- vant immunotherapy confers long-term benefits is still being investigated in clinical trials. For patients who are not eligible for surgery, stereotactic body radiation therapy may improve survival. NSCLC Stage III is treated with chemotherapy, radiation, targeted therapy, and immunotherapy depending on tumor characteristics (e.g., the possibility of surgical resection) and patient factors (e.g., other medical con- ditions). Stage IV NSCLC requires systemic therapies, with local therapies generally used to improve symptoms; however, when metastases are limited in number and organ, local therapies may improve outcomes. Treatment of limited stage SCLC includes the use of chemotherapy, radiation, and prophylactic cranial radiation to prevent brain metastases. Most patients with SCLC develop resistance to chemotherapy, leading to recurrence which is usually fatal. Extensive stage SCLC is treated with chemotherapy and immunotherapy, although radiation may be used for some cases. New and Emerging Treatments New and emerging treatments for cancer are being developed for surgery, radiation, and systemic approaches. The committee defined new treatments as therapeutic approaches adopted recently in clinical practice or established treatments for one cancer that are being studied for other cancers, and emerging therapies as novel therapeutic approaches under scientific investigation that have demonstrated promising results in early stage research, but have not yet been accepted as a standard of care. In addition to considering new and emerging treatments for breast cancer and lung cancer, the committee also considered advances in treatment for colorectal cancer, pancreatic cancer, liver and bile duct cancers, leukemias, lymphomas, multiple myeloma, ovarian cancer, head and neck cancers, and melanoma. PREPUBLICATION COPY—Uncorrected Proofs

SUMMARY 11 New surgical approaches such as minimally invasive techniques with robotics and laparoscopic surgery have been developed to reduce adverse effects related to surgery, particularly to reduce lymphedema following lymph node dissection. Other surgical approaches to minimize adverse ef- fects include breast-conserving surgery with oncoplastic construction. The latest radiation techniques are focused on delivery strategies to reduce acute and long-term adverse effects. These new techniques include isotopes (e.g., charged particle therapy) and delivery strategies (e.g., FLASH radiotherapy) to reduce adverse effects in adjacent organs and soft tissues. A growing number of new systemic treatments include targeted ther- apies, antibody drug conjugates, and immunotherapies. Many targeted therapies, such as PARP inhibitors, are standard of care for one cancer, but are emerging therapies for other cancers. Many targeted therapies lose their effectiveness over time and may be used for only a small set of cancers. However, treatments that focus on enhancing the immune system may be applicable to a greater variety of cancers. Immunotherapies may be preven- tative or therapeutic vaccines, adoptive cellular therapies such as chimeric antigen receptor T (CAR T)-cell therapy, and immune checkpoint inhibitors such as programmed cell death protein 1. Antibody drug conjugates, in which a highly toxic chemotherapeutic agent is linked to a monoclonal anti- body, may improve the effectiveness of the agent and reduce its toxicity. The long-term and late-onset effects of these new therapies, particularly immu- notherapies, for different cancers and populations are poorly understood. Conclusions 1. Many systemic therapies beyond chemotherapy, such as immuno- therapy and targeted therapy, are now used to treat localized and advanced cancer. 2. Immunotherapies represent the most important and transformative classes of new and emerging cancer treatments, as these treatments can lead to prolonged disease-free survival for some cancers that respond poorly to conventional treatments. 3. Although many new and emerging cancer therapies are improv- ing survival, their long-term and late-onset effects are poorly understood. 4. Some newer treatment approaches are focused on reducing or correcting the toxicity and morbidity of standard treatments (e.g., reduction in the extent of axillary surgery, less invasive surgical procedures, or use of proton radiation therapy). In time, these may become standard of care as their effectiveness and safety become more evident. PREPUBLICATION COPY—Uncorrected Proofs

12 DIAGNOSING AND TREATING ADULT CANCERS PROGNOSIS Prognosis is commonly used to indicate what patients may expect with respect to the trajectory of their cancer and how long they might expect to live. The committee uses the term prognosis to encompass a variety of cancer outcomes including survival, recurrence, remission, the likelihood of and surveillance for the development of new primary can- cers, and the occurrence and persistence of cancer-related impairments that may lead to functional limitations in activities of daily living and quality of life. Cancer survivors may live for years, but the debilitating effects of the cancer itself and its various treatments may make function- ing difficult. The prognosis for each type and even subtype of cancer is highly vari- able and depends on many factors, including the cancer diagnosis (e.g., tumor staging and biomarkers), the quality of care the patient receives, performance status, and the presence of comorbidities. An earlier stage at diagnosis is associated with improved outcomes for most cancers, and pa- tient self-reported outcomes are strong indicators for overall survival across varying cancer diagnoses and among different populations. Many survivors with no evidence of cancer may later experience a cancer recurrence. In the case of solid tumor cancers, recurrence can be either local or distant. Cancer patients who have been successfully treated are also at risk for the development of new or subsequent primary cancers that may occur anywhere from months to years after the original cancer has been treated. The cumulative incidence of new primary malignancies approaches 15% at 20 years after the diagnosis of initial primary cancer. Current breast cancer survivors, including many with metastatic dis- ease, have longer life expectancy compared with prior cohorts as a result of improved treatments. Triple-negative breast cancer is more likely to recur than the other subtypes, with an 85% 5-year Stage I cancer-specific survival compared with 94–99% for HR-positive and HER2-positive cancers. The most commonly diagnosed breast cancer is HR-positive/HER2-negative. Once breast cancer metastasizes, the 5-year survival is estimated to be 27%; however, metastatic breast cancer—generally thought to be incurable—is being increasingly treated as a chronic disease. Lung cancer is one of the deadliest cancers with more than half of people dying within 1 year of diagnosis. The 5-year survival rate for all- stage NSCLC is 24% and 6% for SCLC. The high mortality rate is due to most people being diagnosed with advanced disease and to the high recurrence rate even for those diagnosed in early stages of the disease. If diagnosed early, the 5-year survival rates increase to 57% for NSCLC, but only 16% for SCLC. PREPUBLICATION COPY—Uncorrected Proofs

SUMMARY 13 Conclusions 1. The cancer care trajectory for each patient and survivor is unique and depends on the characteristics of his or her cancer, its treat- ment, and factors such as age and comorbidities. 2. The 5-year survival for people with early-stage breast cancer (spe- cifically, stage I, hormone-positive, and HER2-negative), the most commonly diagnosed breast cancer, is excellent, at 94–99%. 3. Changes in the treatment of NSCLC in recent years have produced improvements in survival. Some patients with metastatic NSCLC are now achieving 5-year survival; however, this longevity is still extremely rare for SCLC. CANCER-RELATED IMPAIRMENTS SSA’s listing of impairments is focused predominately on terminal and metastatic cancers with a high likelihood of death and does not include any cancer-related impairments that may lead to functional limitations, other than secondary lymphedema that is caused by anticancer therapy for breast cancer. Assessing cancer-related impairments and associated functional limi- tations is a complex task and includes evaluating patient reported outcomes in addition to numerous functional assessment tools for physical and psy- chologic impairments at several points in the cancer trajectory, including at time of diagnosis, at completion of active treatment, and periodically during the rest of the survivor’s life. The time course and severity of impairments from cancer and its treatments can vary and can extend throughout the can- cer trajectory, from presenting symptoms and diagnosis, through treatment, to long-term survivorship. Table S-1 lists the cancer-related impairments considered by the committee to be among the most common, disabling, and difficult to manage when the treatment goal is improved function. Substantial impairments associated with breast cancer and its treat- ments include pain, lymphedema, fatigue, depression, cognitive impairment, and chemotherapy-induced peripheral neuropathy. Impairments associated with lung cancer and its treatments include respiratory problems, fatigue, pain, neuropathy, ototoxicity, and psychological distress. Impairments as- sociated with other common cancers include cachexia (e.g., for gastrointes- tinal cancers) and graft-versus-host disease (e.g., for leukemias). Data are lacking on the prevalence and impact of these impairments on survivors’ long-term functioning. Impairments contributing to functional limitations can be assessed with standardized, validated tools when ap- propriate; however, for many impairments including pain, depression, and fatigue, validated self-report instruments are the primary diagnostic tools. PREPUBLICATION COPY—Uncorrected Proofs

14 DIAGNOSING AND TREATING ADULT CANCERS TABLE S-1 Impairments Considered in This Report, Impairment Causes, and When the Impairment Might Occur Impairment Causes Occurrence Disease Cancer Late- Impairment Process Treatment Acute Long-Term Onset Pain • • • • Cancer-related fatigue • • • • Chemotherapy-induced • • • • peripheral neuropathy Lymphedema • • • Cachexia • • Cardiotoxicity • • • • Cognitive impairments • • • • • Depression and anxiety • • • • Gastrointestinal • • • • • impairments Graft-versus-host disease • • • Musculoskeletal • • • • • impairments Pulmonary toxicity • • • • Sleep disturbances • • • • Key factors that alter the potential incidence and severity of cancer- related impairments include comorbidities (e.g., cardiovascular diseases, diabetes, chronic obstructive pulmonary disease) and symptom clusters. For example, chronic obstructive pulmonary disease can cause shortness of breath and limit a survivor’s participation in rehabilitation treatments. Symptom clusters—two or more concurrent symptoms that are related and may or may not have a common cause, such as fatigue and pain—can have significant and synergistic effects on cancer-related impairments and functional limitations. Although there are pharmacologic treatments for some impairments, there are also a number of single and multimodal nonpharmacologic in- terventions that are effective. Exercise and physical activity, rehabilitation (physical and occupational therapy, physiatry, and speech and language therapy), and psychological and emotional interventions are being increas- ingly recommended by clinicians. These nonpharmacologic interventions, however, are currently underused and underprescribed for cancer-related impairments. PREPUBLICATION COPY—Uncorrected Proofs

SUMMARY 15 Conclusions 1. In determining the ability of a person to engage in substantial gain- ful activity, it is necessary to consider cancer-related impairments arising from the disease itself, those arising from cancer treat- ments, and those associated with or exacerbated by pre-existing and treatment-related comorbidities. 2. Regular assessment and re-assessment of functional status through- out the cancer care trajectory are warranted given the dynamic impacts of cancer-related acute, long-term, and late-onset impair- ments that may result in functional limitations. 3. There are various, evidence-based exercise and rehabilitation inter- ventions that can mitigate these impairments but, in general, they are underprescribed and underused. 4. The development of and prognosis for impairments associated with cancer and its treatment, even early-stage cancer, are highly vari- able and depend on many individual characteristics and the specific treatments the patient receives. 5. Many cancer-related impairments may result from breast cancer and its treatment, especially pain, fatigue, cognitive complaints, neuropathy, psychological issues, and lymphedema, which are of- ten untreated and may lead to persistent functional limitations. 6. Survivors of lung cancer may have cancer-related impairments as a consequence of their cancer and its treatment. The high risk of lung cancer recurrence, metastases, or the development of new primary cancers, and the major comorbid conditions often associated with smoking and aging, such as chronic obstructive pulmonary disease, can increase the number and severity of any impairments. 7. SSA’s current cancer disability listings for adults do not reflect advances in cancer treatments and improved cancer survival rates, or the growing number of cancer survivors who have impairments and functional limitations from a cancer and its treatment. SURVIVORSHIP CARE Survivorship care provides cancer-related and supportive interventions that address the individual needs of each survivor. It includes a cancer care team that is patient and caregiver focused, and ranges from oncology specialists of various disciplines, primary care clinicians, and rehabilitation specialists to nurses, pharmacists, mental health professionals, nutritionists, social workers, and spiritual counselors. Communication among and coor- dination between care team members can be facilitated by electronic health records, but patient-reported outcomes, such as pain and mental distress, PREPUBLICATION COPY—Uncorrected Proofs

16 DIAGNOSING AND TREATING ADULT CANCERS are not regularly included in electronic health records, making assessment of impairments difficult. Challenges for survivorship care include the delivery of cancer treat- ments in the ambulatory or outpatient setting (rather than the inpatient set- ting) where fewer resources are available. For example, care team members may not be co-located requiring the survivor to travel between facilities. Efforts including certification programs are under way to expand train- ing opportunities for health care providers to ensure that the long-term needs of cancer survivors are identified and met during and after treatment. Conclusions 1. Survivorship care is complex and requires coordination and com- munication among the patient, caregivers, and all members of the care team. Enabling and supporting patient self-management is a critical component of survivorship care. 2. Challenges to providing optimal survivorship care include the availability and education of clinicians, and electronic health re- cords that do not adequately collect survivorship information. The cancer diagnosis and treatment landscape has changed dramati- cally in the past two decades, reflecting basic science discoveries in genet- ics and immunology that have translated into improvements in diagnosis and treatments for many types of cancer. These discoveries mean that pathologists now identify the unique expression of a tumor’s genetic and immune features on an initial biopsy, so that this information, along with the anatomic extent of the cancer, can chart a personalized treatment plan for the patient. While these advances have contributed to improvements in cancer treatment outcomes, much less is known about the long-term and late-onset effects of these treatments compared with the conventional surgery, chemotherapy, and radiation approaches that have been used for more than 50 years. Managing cancer-related impairments and functional limitations as part of a patient-centered, survivorship care program should be a lifelong process. PREPUBLICATION COPY—Uncorrected Proofs

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Diagnosing and Treating Adult Cancers and Associated Impairments Get This Book
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Cancer is the second leading cause of death among adults in the United States after heart disease. However, improvements in cancer treatment and earlier detection are leading to growing numbers of cancer survivors. As the number of cancer survivors grows, there is increased interest in how cancer and its treatments may affect a person's ability to work, whether the person has maintained employment throughout the treatment or is returning to work at a previous, current, or new place of employment. Cancer-related impairments and resulting functional limitations may or may not lead to disability as defined by the U.S. Social Security Administration (SSA), however, adults surviving cancer who are unable to work because of cancer-related impairments and functional limitations may apply for disability benefits from SSA.

At the request of SSA, Diagnosing and Treating Adult Cancers and Associated Impairments provides background information on breast cancer, lung cancer, and selected other cancers to assist SSA in its review of the listing of impairments for disability assessments. This report addresses several specific topics, including determining the latest standards of care as well as new technologies for understanding disease processes, treatment modalities, and the effect of cancer on a person's health and functioning, in order to inform SSA's evaluation of disability claims for adults with cancer.

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