SEVENTH EDITION. Lung Cancer

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1 SEVENTH EDITION Lung Cancer

2 Table of Contents CHAPTER 1 / EMPOWER YOURSELF... 1 CHAPTER 2 / UNDERSTAND YOUR LUNG CANCER... 7 CHAPTER 3 / MAKING TREATMENT DECISIONS CHAPTER 4 / NON-SMALL CELL LUNG CANCER (NSCLC) AND ITS TREATMENT CHAPTER 5 / SMALL CELL LUNG CANCER (SCLC) AND ITS TREATMENT CHAPTER 6 / MANAGING TREATMENT SIDE EFFECTS CHAPTER 7 / QUALITY OF LIFE CHAPTER 8 / PRACTICAL CONCERNS CHAPTER 9 / RESOURCES AND GLOSSARY... 83

3 Frankly Speaking About Cancer: Lung Cancer is dedicated to all the people affected by lung cancer who shared their stories, experiences, and wisdom to make this guide possible, as well as health professionals who provided the most recent medical information about lung cancer diagnosis and treatment Cancer Support Community would like to recognize and thank all of those who contributed to Frankly Speaking About Cancer: Lung Cancer. CONTRIBUTORS AND REVIEWERS American Lung Association Carly Hamburger, MPH CHES Katherine Pruitt Cancer Support Community Allison Harvey, MPH, CHES Rhea Suarez Free to Breathe Annie Dutcher Lung Cancer Alliance Maureen Rigney, LICSW LUNGevity Foundation Susan Mantel Jennifer L. Maloney, MS, ACNP-BC Memorial Sloan-Kettering Cancer Center Rebecca Fritz, LCSW Gilda s Club Chicago Ide Mills, CSW Health Educator, Behavioral Strategist GRAPHIC DESIGN AND PHOTOGRAPHY Suzanne Kleinwaks Design, LLC Thomas Van Veen of Documentary Associates Nasser H. Hanna, MD Indiana University School of Medicine CANCER SUPPORT COMMUNITY MISSION The mission of the Cancer Support Community is to ensure that all people impacted by cancer are empowered by knowledge, strengthened by action and sustained by community. In 2009, The Wellness Community and Gilda s Club joined forces to become the Cancer Support Community. The combined organization, with more than 50 years of collective experience, provides the highest quality social and emotional support for people impacted by cancer through a network of more than 50 licensed affiliates, over 100 satellite locations and a vibrant online community, touching more than one million people each year

4 Cancer Support Community and our partners provide this information as a service. This publication is not intended to take the place of medical care or the advice of your doctor. We strongly suggest consulting your doctor or another health care professional to answer questions and learn more Cancer Support Community. All rights reserved. THIS PROGRAM WAS MADE POSSIBLE WITH CHARITABLE CONTRIBUTIONS FROM

5 You Are Not Alone A diagnosis of cancer can be stressful. The biggest stressors are often loss of control, loss of hope and unwanted aloneness, and worry about finances. Learning that you or someone you love has lung cancer can be frightening. You may ask yourself: Now what? It is important to know you can become an active partner in your recovery. For the Seventh Edition, Cancer Support Community (CSC), Lung Cancer Alliance (LCA), American Lung Association (ALA), LUNGevity Foundation and Free to Breathe have joined together to update this booklet with helpful information for people with lung cancer and their caregivers. It is our hope that it offers insight into managing a diagnosis of lung cancer, making treatment decisions and coping with the emotional and practical challenges people with cancer face. As you read this booklet, you become part of a global cancer support community and you will find you are not alone there is a whole community behind you. PROLOGUE i

6 How to Use this Book Since the information may be new and can be a lot to take in, use this book as a guide. CHAPTER 1 / EMPOWER YOURSELF Discusses the empowerment concept and actions you can take to help cope with the challenges of a lung cancer diagnosis. CHAPTER 2 / UNDERSTAND YOUR LUNG CANCER Provides an overview of lung cancer and the two main categories: non-small cell lung cancer (NSCLC) and small cell lung cancer (SCLC). CHAPTER 3 / MAKING TREATMENT DECISIONS Provides information on making a treatment decision. Here you will find information on: Common terms Treatment options Clinical trials Preparing for treatment Evaluating the effects of treatment CHAPTER 4 / NON-SMALL CELL LUNG CANCER AND ITS TREATMENT Describes the most current treatment for nonsmall cell lung cancer. Here you will find information on staging and treatment options. CHAPTER 5 / SMALL CELL LUNG CANCER AND ITS TREATMENT Describes the most current treatment for small cell lung cancer. Here you will find information on staging and treatment. CHAPTER 6 / MANAGING SIDE EFFECTS Highlights the most common side effects and symptoms associated with cancer treatment. Here you will find information on: Palliative care Complementary & Alternative Medicine (CAM) or Integrative Medicine Common treatment side effects CHAPTER 7 / QUALITY OF LIFE Discusses the emotional impact of a cancer diagnosis. Here you will find information on: Depression and anxiety Managing stress Getting support Relationships/Intimacy Spirituality Caregivers CHAPTER 8 / PRACTICAL CONCERNS Addresses the financial, insurance, legal and employment issues that many people face when diagnosed with lung cancer. CHAPTER 9 / RESOURCES AND GLOSSARY Provides resources to help you understand and cope with a lung cancer diagnosis. Included is a list of lung cancer specific support, as well as resources for financial and legal assistance. There is also a glossary of lung cancer related terms. ii FRANKLY SPEAKING ABOUT CANCER / LUNG CANCER

7 Empower Yourself 1 For about a year, I was having this pain in my chest. Several doctors told me that it was not cause for concern, but I was determined to find out what was causing it. Eventually, I was diagnosed with lung cancer, and the tumor was right behind my sternum where I was feeling pain. We caught the cancer early, and my doctors were able to treat it with surgery alone. I feel lucky I m the reason for early detection. Marilyn CHAPTER 1 / EMPOWER YOURSELF 1

8 THE EMPOWERMENT APPROACH Being empowered is choosing to adopt actions, behaviors, and attitudes that can help you regain a sense of control over your treatment and life with cancer. Gain Control Based on the empowerment approach, this booklet is here to help you learn about your lung cancer and ask questions about your cancer and treatment. It is common for people diagnosed with lung cancer to feel alone or isolated at first. Many people feel like no one understands what they are going through. It is also common to be scared, confused, and even angry. However, by learning what you can about your lung cancer, you can begin to take back control. Joining in the choices you make with your health care team can make a difference in your cancer experience and quality of life. Lung cancer-specific challenges A diagnosis of lung cancer can bring additional challenges because of how this cancer diagnosis is thought of by you or others. There may be a sense of guilt, anger, and even blame that is associated with a lung cancer diagnosis. The burden of these emotions can get in the way of your recovery. Being empowered can help you cope with these challenges and beliefs. Individual challenges A person with lung cancer who smoked may feel guilty and accept blame from their family and friends. No matter what brought on your diagnosis, you deserve the best possible treatment and care. Family challenges Family members of people with a history of smoking may blame the person for developing lung cancer. Society challenges Society sees lung cancer as a disease of smokers. Lung cancer patients who never smoked are often assumed to have been smokers. The fact is, 60% of people newly diagnosed with lung cancer either quit smoking many years ago or never smoked. Everyone diagnosed, regardless of smoking status, is entitled to compassion and the best available treatment. For more information on the emotional impact of a lung cancer diagnosis, please refer to Chapter 7. 2 FRANKLY SPEAKING ABOUT CANCER / LUNG CANCER

9 10 Actions You Can Take to Regain Control 1. Stay in the moment. Try to focus on resolving only today s problems and take one step at a time, one day at a time. 2. Ask for support. Help others understand what you need. Be as open as you can with your family and friends about how they can support you. Offer them specific examples, such as driving you to appointments, helping with babysitting, or going to the movies to take a break. Take someone with you to medical appointments to take notes and help you remember important information. 3. Acknowledge and express your feelings. Take time just to listen to your body and to the things you are saying to yourself. Once you are more aware of your feelings, express them by talking, writing, physical activity, or other creative pursuits. You may want to attend a support group led by a social worker, nurse or patient advocate to share your feelings or learn from others. These groups may be held in-person or online. 4. Do what you enjoy. Continue activities that you enjoy and can do comfortably. Find new activities if you feel tired or have other limitations. Ask friends to join you, or give yourself permission to be alone when you need to be. 5. Seek relaxation. Relaxation refers to a calm, controlled physical state that will improve your well-being. Take relaxing breaks in your daily routine: listen to music that makes you happy, read a book, or take a walk. Take time to enjoy the moment. Consider joining a yoga, tai-chi, or meditation class. Perhaps watching your favorite TV show can put you in a relaxed state. Relaxation is something that you may have to learn. 6. Retain as much control of your life as is reasonable. If you feel that you have lost control to your doctors, loved ones, or even the disease itself, decide what you can realistically take back (such as driving or cooking). Identify the areas in your life in which you could benefit from help, and choose what help you want. CHAPTER 1 / EMPOWER YOURSELF 3

10 7. Communicate with your health care team. Prepare a list of questions for each appointment. Bring a notebook to all your appointments and write things down. If you don t understand what something means, ask until you understand. Ask for a copy of your medical records, including the pathology reports that confirmed your lung cancer and ask your doctor to show you the scans that confirmed your diagnosis. 8. Develop a plan. This plan should coordinate medical and emotional care; support you in managing your illness; link you with needed psychosocial services; and identify support organizations that can help you with specific needs. Your doctors and caregivers can help. You may choose to get a second opinion on your diagnosis and treatment plan to best understand your options. 10. You can find hope in many things. Hope is desirable and reasonable. Even if your own cancer recovery does not seem possible, you can set small goals and enjoy daily pleasures. Get tickets to a concert. Participate in a religious study class. Attend a birthday, anniversary, or other event for someone you love. Define hope for yourself. Talk about what gives you hope and what you hope for now and in the future. Share these hopes with your family, friends, and the members of your health care team. Combining the will of the patient with the skill of the physician a powerful combination. Harold Benjamin, Ph.D., Founder, The Wellness Community 9. Spend time with other cancer survivors. People with cancer often find comfort in talking with others who share their experiences either in person, online, or by phone. Cancer support organizations such as Cancer Support Community, Lung Cancer Alliance, American Lung Association and LUNGevity Foundation can help you connect with other lung cancer survivors. 4 FRANKLY SPEAKING ABOUT CANCER / LUNG CANCER

11 EMPOWERED COMMUNICATION Talking with your health care team is a critical part of your treatment and your fight for recovery. One of the most important things you can do is ask questions! There are several other things you can do to make talking with your health care team easier: Make sure you understand what is being discussed. If you do not understand, ask for more detail or a non-technical explanation. If something seems confusing, try repeating it back to your doctor. For example, You mean I should Bring a friend or family member to help take notes, ask questions, and provide support. Ask to see x-rays or scans, or have the doctor draw a diagram if you think pictures will help you understand something better. Write down questions you have as they come up. Take these questions with you to your appointments. Many people have found keeping a notebook with these questions and the answers is a helpful tool. Questions to ask your health care team about your diagnosis 1. What type of lung cancer do I have? 2. Do I have lung cancer with genetic mutations? If so, what kind? 3. What stage is my lung cancer, and has it spread to other parts of my body? 4. What other types of tests will I need? 5. Where can I find more information about lung cancer? Communicating with your health care team is a critical part of your treatment and your fight for recovery. One of the most important things you can do is ask questions! CHAPTER 1 / EMPOWER YOURSELF 5

12 Questions to ask your health care team about your treatment 1. What are the goals of this treatment (is it to cure the cancer, control the cancer, or relieve symptoms)? 2. What are my treatment options? 3. What are the risks and benefits of each treatment option? 4. Which treatment do you recommend, and why? 5. Which treatments are covered by my insurance? 6. If insurance doesn t cover this treatment, what options exist to help with finances? 7. Are there any clinical trials that might be appropriate for me? 8. Where can I go to get more information about clinical trials? 9. Where will I go to receive my treatment? 10. When can I start my treatment, and how long will it last? 11. What side effects might I experience, and how can they be managed or prevented? 12. Are there treatment options I should consider if chemotherapy isn t appropriate or has stopped working? Questions to ask about your doctor and the clinic or hospital 1. How much experience do you have in treating my specific type of lung cancer? 2. Are you board certified as an oncologist, thoracic surgeon, or are you certified in another specialty? 3. How do you stay up-to-date on the latest lung cancer treatments? 4. Are you associated with a major medical center, medical school, or comprehensive cancer center? 5. Do you and the hospital accept my type of insurance? 6. Will I be able to receive all treatments at this facility? 7. Are cancer clinical trials offered at this facility? 8. Is there an oncology nurse or social worker who will be available during my treatment for education and support? 9. What other support services (support groups, housing, transportation, etc.) are available at this facility for me and my family? 13. Where can I get a second opinion? 6 FRANKLY SPEAKING ABOUT CANCER / LUNG CANCER

13 2 Understand Your Lung Cancer I never want to go to chemo, and dealing with side effects from my treatment has been difficult, but I try to remember the importance of taking medicines and doing whatever has to be done to beat this disease. Dave CHAPTER 2 / UNDERSTAND YOUR LUNG CANCER 7

14 Cancer is a condition in which cells multiply uncontrollably to form growths (called tumors) that invade and destroy normal, healthy tissue. Tumors that are cancerous are called malignant and noncancerous tumors are called benign. Cancer cells can spread from their original site to other parts of the body in a process known as metastasis. Cancers are named for the place in the body where they begin (known as the primary site or primary cancer), not where they may spread. According to the National Cancer Institute, there are approximately 400,000 people living with lung cancer at any given time. The lung is an organ in the chest. The lung is a major part of the respiratory system. Lung cancer begins in one or both sides of the lung. Each lung is contained in a sac called the pleura. The right lung has three sections (lobes), and the left lung has two. Many people with lung cancer have no symptoms or only vague symptoms until the disease has progressed outside of the lungs or other parts of the body. The lungs have very few nerve endings, and a tumor may be present without feelings of pain or discomfort. As a result, only 15% of lung cancers are discovered in the earliest stages, when the possibility of cure is greatest. The more you know about your particular type of lung cancer and its histology (the study of cells and tissues), the better you will be able to make treatment decisions. PARTS OF THE LUNGS There are two main types of lung cancer non-small cell lung cancer (NSCLC) and small cell lung cancer (SCLC). The difference between NSCLC and SCLC has to do with the cancer cells themselves, including how they look, how quickly they spread to other parts of the body and how they respond to treatment. 8 FRANKLY SPEAKING ABOUT CANCER / LUNG CANCER

15 Non-Small Cell Lung Cancer (NSCLC) NSCLC makes up 80-85% of all lung cancers and has three major subtypes: Adenocarcinoma accounts for 35-50% of the NSCLC lung cancer cases in the United States. It usually starts near the outer edges of the lungs. It may occur in those with a history of smoking, but is the type most often found in those who never smoked. B LUNG CANCERS BY TYPE C D Squamous cell carcinoma represents about 30% of NSCLC lung cancers in the United States. It usually starts in one of the bronchi. It frequently spreads to regional lymph nodes and is strongly associated with smoking. Large cell carcinoma represents about 10% of NSCLC lung cancers in the United States. It may start in any part of the lung and is frequently the diagnosis when other types of lung cancer have been ruled out. Small Cell Lung Cancer (SCLC) SCLC represents 15-20% of all lung cancers in the United States. It typically grows and spreads more rapidly than NSCLC and is seen most often in people with a current or former smoking history (about 98% of cases are attributed to smoking). SCLC usually starts in one of the larger bronchi. SCLC often spreads beyond the lungs by the time it is diagnosed. It is usually responsive to initial chemotherapy and was previously called oat cell cancer because the cells are small and oval, like oat grains. A B C D NON-SMALL CELL LUNG CANCER 80-85% of all Lung Cancers Adenocarcinoma / 35-50% Squamous cell carcinoma / 30% Large cell carcinoma / 10% SMALL CELL LUNG CANCER 15-20% of all Lung Cancers A CHAPTER 2 / UNDERSTAND YOUR LUNG CANCER 9

16 RISK FACTORS FOR LUNG CANCER History of smoking For people who have smoked, the risk of developing lung cancer is related to their total lifetime exposure to cigarette smoke. Secondhand smoke It is estimated that every year at least 3,000 people in the United States die of lung cancer caused by secondhand smoke, for example, from living with someone who smokes or working in a location where smoking is or was allowed. Age Environment Increased risk of lung cancer can be tied to exposure to high levels of certain natural gases and chemicals such as radon, uranium, arsenic, and bischloromethyl ether. In fact, radon is the second-leading cause of lung cancer in the United States. Asbestos is also a major risk factor for cancer in the lung. Family history In some cases, genetics may play a part in the development of lung cancer. If your family has a history with lung cancer, it is important to talk to your doctor about risk. The average age for cases of lung cancer is between years old. As with most cancers, the risk of developing lung cancer increases as a person ages. More information about the risks for lung cancer may be found through the National Cancer Institute s website: 10 FRANKLY SPEAKING ABOUT CANCER / LUNG CANCER

17 SCREENING The National Comprehensive Cancer Network, a group of cancer centers that develops recommendations about treatment regimens, has made the following recommendation for lung cancer screening. Base-line low dose CT (computerized tomography) screening for the following high-risk groups: People with a history of heavy smoking - at least 30 pack-years, which would include people who smoked one pack of cigarettes per day for 30 years or people who smoked two packs per day for 15 years, or three packs per day for 10 years, etc. With lung cancer screening, sometimes a scan will show a spot that is not actually cancer. This is called a false positive. There is a very high false positive rate in lung cancer screening so it is important to work closely with your health care team. People who think they may be at risk for lung cancer and are interested in screening should seek a screening program that follows the recommended protocols for lung cancer screening with low dose CT. People over age 50 with a history of moderately high smoking at least 20 pack-years plus one other risk factor. New screening techniques for lung cancer continue to be developed. If you are considering screening for lung cancer, talk to your doctor so you have a clear understanding of what s involved. CHAPTER 2 / UNDERSTAND YOUR LUNG CANCER 11

18 DIAGNOSIS AND STAGING Your doctor may use several different tests to determine if you have lung cancer. These tests can give your doctor a picture of your lungs, chest and in some instances, entire body. Discuss with your health care team what tests you will need. Diagnosing and staging lung cancer (determining the extent of disease) provides specific information needed to make decisions about which treatment options are best for you. Staging involves diagnostic tests that identify where the cancer is located and whether it has spread in the body. Some or all of the tests and procedures described here may be used. Treatment decisions are made based on the stage of the lung cancer. (Please refer to Chapters 4 and 5 for staging of NSCLC and SCLC.) Tools Used to Diagnose and Stage Lung Cancer Health history In diagnosing lung cancer, it is critical for a doctor to obtain a detailed history of your health: Your health history information about smoking, exposure to environmental risk factors, and any significant symptoms such as nagging cough, shortness of breath, fatigue, back or chest pain. Your family health history information that may indicate a genetic predisposition to lung cancer and/or other cancers. Imaging and diagnostic tests While your symptoms and the results of imaging tests point to lung cancer, it is important to have a sample of the affected tissue to make a lung cancer diagnosis. I got all of my tests, reports, and biopsy results, and kept copies so that I could read everything and go back over it. I think that s very important. No one can remember it all. Cynthia 12 FRANKLY SPEAKING ABOUT CANCER / LUNG CANCER

19 Tools Used for Staging Chest X-Ray. A special picture is taken of your lungs. It is one of many tests used to see where your tumor is located. CT and MRI scans. CT (computerized tomography) and MRI (magnetic resonance imaging) use computers to produce detailed, three-dimensional images that help diagnose lung cancer and can determine the size, shape, and location of a tumor. If symptoms of lung cancer are present, a contrast enhanced CT scan, which uses a special contrast dye and is injected to create clearer images, is recommended. Both CT and MRI scans are useful in determining whether lung cancer has spread. PET scans. PET (positron emission tomography) scans identify rapidly dividing tumor cells. PET scans may give a more accurate picture of the stage of lung cancer and possibly if the cancer has spread outside of the lungs. PET scans are often used as a follow-up to other tests or to diagnose recurrent disease. A biopsy is required to diagnose a lung cancer based upon an abnormality detected on an x-ray. Dr. Nasser Hanna Tools for Diagnosis Biopsy. A biopsy is the only reliable way to confirm the presence of cancer and identify its type and stage. A biopsy removes a small piece of lung tissue, which is viewed under a microscope by a pathologist. Needle biopsy. A long thin needle is used to remove a sample of tissue from the lung. Endoscopic Bronchial Ultrasound (EBUS). A bronchoscope with ultrasound is used to view more distant airways and regional lymph nodes. It allows these areas to be seen and biopsied more easily. Sputum cytology. If cancer cells are in the bronchi, some are likely to be carried up the throat in mucus from the airways called sputum, which can be examined for signs of cancer. Sputum can be coughed up or collected through a tube called a bronchoscope. This test can find cancer cells long before a tumor is evident on other tests, but it may not detect cancers deeper in the lungs and cannot determine a tumor s size or location. Navigational Bronchoscopy. This new technology uses a bronchoscope to provide a three-dimensional virtual roadmap that enables a doctor to view hard to reach parts of the lung. CHAPTER 2 / UNDERSTAND YOUR LUNG CANCER 13

20 Endoscopic Ultrasound. This nonsurgical procedure uses high frequency sound waves to produce detailed images of the lung and other close-by organs. Bronchoscopy. A flexible tube-like instrument called a bronchoscope is used to view the airways into the lungs and to collect tissue samples. Local anesthesia and mild sedation are generally used. In a newer technique known as auto-fluorescence bronchoscopy, chemical properties of tumor cells cause them to reflect light (fluoresce) differently than normal cells. If the cells do not fluoresce normally, a sample is taken to determine whether they are cancerous. Mediastinoscopy. A rigid instrument called an endoscope is inserted through a small incision in the neck or chest into the area known as the mediastinum. Anesthesia is used. This procedure can show if cancer has spread to lymph nodes near the trachea one of the first places lung cancer is likely to spread. Thoracoscopy. This is a limited surgical procedure, performed under general anesthesia. An instrument called a thoracoscope is inserted through a small incision in the chest wall to allow examination of the lining of the chest wall and the surface of the lungs for tumors. Video-Assisted Thoracic Surgery (VATS). The use of a tiny video camera to guide the surgeon, which makes it possible to remove a small piece of the tumor. FUTURE DIAGNOSTIC TESTS Genetic markers. A gene or DNA sequence has a known location on a chromosome and is associated with a particular gene or trait. Genetic markers are associated with certain diseases and cancers. Oncology researchers are trying to find genetic markers detectable in the blood to determine if an individual is at risk for developing lung cancer. In the future, such markers may make it possible to detect lung cancer earlier. 14 FRANKLY SPEAKING ABOUT CANCER / LUNG CANCER

21 BIOMARKERS AND PERSONALIZED MEDICINE IN LUNG CANCER YOUR HEALTH CARE TEAM An exciting new phase in lung cancer is genetic testing of the tumor. Many terms are used for biomarkers, including signature markers, molecular markers, tumor markers and genetic markers. The best time to get your tumor tested for biomarkers is during the initial biopsy. That way when it comes time to discuss treatment options, you know if you are eligible for certain targeted therapies and you do not need to wait for results from another biopsy to come back. Biomarkers are substances produced by tumor cells or by other tissues in response to cancer. Biomarker tests look at the cells of tissue, blood or other fluid samples to find specific gene mutations and proteins. These tests can provide information about the cancer that helps to determine if a targeted therapy is a treatment option. For more information on biomarkers and targeted therapies see p. 32. QUESTIONS TO ASK ABOUT BIOMARKER TESTING 1. Was my tissue sent for molecular testing? It is important to understand each person s role, as they are important members of your care team. Thoracic surgeon. Some thoracic surgeons are trained specifically in lung surgery; try to talk with a thoracic surgeon who is board-certified and specializes in lung cancer. If no one with this training is available, find a general surgeon who performs the most lung cancer surgeries in your area. Medical or Thoracic oncologist. A doctor who specializes in diagnosing and treating cancer using chemotherapy, and who may coordinate your care with other specialists. It is good to work with a medical oncologist who sees a significant number of lung cancer patients or who specializes in lung cancer. Radiation oncologist. Specializes in treating cancer using various forms of radiation to safely and effectively treat cancer by focusing x-rays, gamma rays, and other sources of radiation directly on the tumor site in the body. 2. How will you use that information to recommend a treatment plan? 3. Will my insurance pay for the biomarker test? CHAPTER 2 / UNDERSTAND YOUR LUNG CANCER 15

22 Pulmonologist. Specializes in treating diseases and conditions involving the lungs. They may be active in the diagnosis of lung cancer, in follow-up after treatment, and in helping manage your case during treatment. Pathologist. Specializes in diagnosing lung cancer by studying tissue, fluid, or blood from the patient using a variety of tools. They can also provide information about the cancer that can help the rest of the team make treatment decisions. Oncology nurse. Specialize in the nursing care of people with cancer. Like doctors, they may specialize in the surgical or medical management of a patient s care. They are often a valuable source of information, support, and education. Some oncology nurses are certified to give chemotherapy or other treatments for your lung cancer. Some oncology nurses also have advanced training and certification as nurse practitioners or clinical nurse specialists. Oncology social workers and counselors. Can help you cope with the emotional impact of cancer and help identify other resources you may need. Do not underestimate the support these individuals provide. Many hospitals, cancer centers, and oncology specialists have specially trained oncology social workers who work with their patients through group or individual counseling. Patient navigator. A patient navigator may be an oncology nurse, oncology social worker, or a trained lay person. A navigator is available to assist you through the health care system, identify members of your health care team, and explain things in terms you can understand. BE EMPOWERED Make sure you feel comfortable with your doctor s level of expertise. Do not hesitate to ask how many lung surgeries your surgeon performs each year. Consider your doctor s communication style and whether it fits well with yours. 16 FRANKLY SPEAKING ABOUT CANCER / LUNG CANCER

23 Find a Lung Cancer Specialist Where can I find a lung cancer specialist? Your primary doctor or your insurance company can often recommend an oncologist or lung cancer specialist. You may consider asking a friend, local cancer support organization, or local hospital referral networks. If possible, seek a major cancer center or university hospital for your first, second, or third consultation about your diagnosis. You may also want to seek out a National Cancer Institute (NCI)-designated cancer center for the latest available lung cancer treatment. Choosing your doctor is a very personal decision. This is one of the most important relationships you re going to have. It has to be someone you can work with. Do you want someone who will talk to you about everything, or just tell you what to do? Gloria ADDITIONAL RESOURCES FOR REFERRAL INFORMATION American College of Surgeons, Commission on Cancer to find a CoC accredited cancer program by your location. The National Cancer Institute for information about the nearest cancer center or Specialized Program of Research Excellence (SPORE) in lung cancer. Lung Cancer Alliance Cancer.net oncologist-approved cancer information from the American Society of Clinical Oncology, to search for an oncologist in your area. American Lung Association Lung HelpLine at CHAPTER 2 / UNDERSTAND YOUR LUNG CANCER 17

24 3 Making Treatment Decisions When I was first diagnosed with lung cancer, I was too overwhelmed and emotional to evaluate the options on my own. So I asked my brother and two other friends (all doctors) to serve as my medical advisory team. It was important to have information processed for me in a way that I could deal with. Jerry 18 FRANKLY SPEAKING ABOUT CANCER / LUNG CANCER

25 No one is more qualified than you to make choices about your treatment, your quality of life, and your future. Consider the members of your health care team as consultants who can help you and your family with those decisions. You will feel a greater sense of control over your situation as you gain information. There are many new medical terms to learn and understand when you are diagnosed with lung cancer. Chapter 9 contains a full glossary which defines a number of different terms you may come across. COMMON TERMS Terms for the different types or approaches to treatment: First-line therapy: Initial cancer treatment. Second-line therapy may follow if the first line is not successful, and so on. Neoadjuvant therapy: Treatment given before the main, primary treatment. Adjuvant therapy: Treatment given after the main, primary treatment. Multi-modality or combined modality therapy: Treatment using a combination of chemotherapy, surgery, radiation therapy, and/or targeted therapy. Palliative therapy: Treatment that is given to relieve symptoms and side effects, provide better quality of life, and perhaps extend life when cure is not probable. Palliative care can be included throughout treatment. Terms for the different types of responses to treatment: Complete response or No Evidence of Disease (NED): On the imaging scan, the cancer appears to be completely gone as a result of treatment. Partial response: The tumor has shrunk in size by at least 30%. Stable disease: The cancer did not shrink, but it did not grow, either. Progressive disease or progression of disease (POD): The tumor is growing in spite of the treatment you received. When this happens, that specific therapy is usually stopped or changed in some way. CHAPTER 3 / MAKING TREATMENT DECISIONS 19

26 TREATMENT OPTIONS Treatment for NSCLC Standard treatment for NSCLC usually involves a combination of these approaches: Surgery: to remove the tumor when the cancer has not spread to other tissues in the chest or beyond. Chemotherapy: the use of drugs to destroy or damage cancer cells so they cannot divide and multiply. Radiation therapy: high-energy x-rays are used to shrink tumors, relieve pain and pressure, decrease symptoms, and improve quality of life. In some cases, it also involves targeted therapies, which are drugs that target specific cellular pathways that enable cancer cells to grow. For more on specific treatment information see Chapter 4. Treatment for SCLC The treatment of SCLC usually involves chemotherapy and frequently radiation therapy. For more in specific treatment information see Chapter 5. HELPING YOU PREPARE FOR CANCER TREATMENT DECISIONS Open to Options TM is a free program designed to help: Create the list of questions you have for your doctor or health care team Organize your questions to bring with you to your appointment Communicate your questions and concerns clearly It works! Patients who participated in the program: Were less anxious about their doctor appointment Felt that their appointment went more smoothly Felt better about the care decision made It is easy and FREE to participate! FRANKLY SPEAKING ABOUT CANCER / LUNG CANCER

27 Clinical Trials Cancer clinical trials are research studies that involve people. These studies determine whether new treatments and interventions are safe and effective for the prevention, diagnosis, or treatment of cancer. Before the Food and Drug Administration (FDA) approves a new treatment for use, the treatment must move successfully through clinical trials. Each study has specific conditions a person must meet in order to participate. Participation in a clinical trial is always voluntary and participants may choose to leave the study at any time. PHASE I TRIALS How safe is the new treatment? This is the first step in testing a new therapy in a small number of people. Researchers hope to determine a safe dose, the best way to provide the drug, and the optimal frequency of the drug. PHASE II TRIALS How effective is the new treatment? Once a treatment is deemed safe in a Phase I trial, the second step is to find out if a treatment is effective in treating a particular type of cancer. Typically, about people participate in a Phase II trial. PHASE III TRIALS How does the new treatment compare to a current therapy? Once a treatment has been shown to be effective, the third step is to find out how a new treatment compares to the standard treatment. Phase III trial participants are randomly assigned to receive either the research treatment or the standard treatment for a particular cancer, to evaluate if the new treatment is better than or the same as the standard treatment. Hundreds to thousands of people participate. MORE ABOUT CLINICAL TRIALS Your health care team can provide you with information about clinical trials available at your treatment center. If you want to search more widely for clinical trials, the following resources have more information: Lung Cancer Alliance Clinical Trial Matching Service LungCancerAlliance/ LUNGevity Foundation Clinical Trial Matching Service LUNGevity National Cancer Institute Cancer Support Community s Clinical Trials Matching Service CHAPTER 3 / MAKING TREATMENT DECISIONS 21

28 Treatment Decision-Making Worksheet This tool is designed to help you discuss treatment options with your doctor. You are encouraged to tear this page out and take it with you to appointments and use it as a guide to help you with discussions. Medical Background Questions 1. What type of lung cancer do I have? (The type of cancer and molecular subtype will determine the types of treatment you will receive) 2. What is the stage of my lung cancer? (The stage of cancer will also determine the types of treatment available) 3. Does my current health status affect my treatment options? (age, other medical conditions) 4. What is the goal of my treatment? 5. What side effects might I expect and how can I prepare for them? (By preparing for common side effects before starting treatment, you can improve your quality of life and stay on course throughout your treatment schedule) Treatment Options 6. Potential side effects (e.g., hair loss, fatigue, neuropathy, etc.) 22 FRANKLY SPEAKING ABOUT CANCER / LUNG CANCER TEAR HERE

29 7. Quality of life/treatment convenience (e.g., required clinic visits to receive treatments, monitoring blood counts, restricted activity, hospitalization, etc.) 8. Effectiveness (e.g., what are the chances that this treatment will work for me?) 9. Surgery (can the tumor be removed?) 10. Pre or post-surgery chemotherapy 11. Pre or post-surgery radiation 12. Radiation 13. Chemotherapy 14. Targeted therapy 15. Clinical trials 16. Combination treatments (from above) 17. Best supportive care TEAR HERE CHAPTER 3 / MAKING TREATMENT DECISIONS 23

30 PREPARING FOR TREATMENT Smoking If you smoke, consider quitting. Studies have shown that people respond more effectively to treatment if they quit smoking. It is also very important to avoid secondhand smoke. You can and should ask those who smoke to not do so in your home or car. Ask your doctor or nurse about smoking cessation programs and how they can help you or members of your family quit smoking. Nutrition Nutrition can make a difference in how well you recover from the effects of treatment. Consider meeting with a nutritionist or dietitian before you start any treatment surgery, radiation therapy, or chemotherapy to help ensure that you are getting the nutrients you need before, during, and after treatment. Be sure to discuss any supplements you are taking with your doctor to avoid any potential interactions during treatment. Physical activity Physical activity is also important in getting the most from your cancer treatment. If you are already an active person, maintain your activities as much as possible even if you need to modify your routine. Be sure to discuss your exercise program with your health care providers. Be sure to tell your doctor about any symptoms you already have, such as shortness of breath and fatigue. Some disease symptoms can be managed before you even begin therapy to help you tolerate treatment better. It is important to know that fatigue and pain can be managed, and it is critical to let your health care team know how symptoms are affecting you as soon as possible. LUNG CANCER TREATMENT AND YOUR HEART Surgery, radiation, and common chemotherapy drugs for lung cancer may cause problems with heart function. Before you start treatment, tests such as an echocardiogram and stress electrocardiogram may be done to determine the status of your heart function. Symptoms of heart problems and lung disease or damage may include: Chest tightness or pain Difficulty breathing Unusually slow or rapid heartbeat Numbness in the left arm or shoulder Be sure your doctor knows about any past problems with your heart, and contact your doctor right away if you experience any of the symptoms listed above. 24 FRANKLY SPEAKING ABOUT CANCER / LUNG CANCER

31 EVALUATING THE EFFECTS OF TREATMENT Standard diagnostic procedures such as x-rays and CT scans can determine whether a tumor has disappeared, shrunk in size, is unchanged, or has grown. The doctor may request these additional tests after treatment has begun. Also, most doctors assess performance status a measure of your ability to do everyday activities to understand your overall health and physical functioning. If your pain or discomfort is lessened, breathing is easier, and cough decreases, your performance status may be improved and it can be assumed that treatment is helping. If I learned one thing, it s that when dealing with any chronic disease (which is how we viewed cancer), you have to be your own best advocate. Doctors aren t perfect. There were several times that we brought a second opinion to the table, and Dan s doctor accepted it and worked with us. It can be very scary reading all of the medical literature or medicine labels, but in the end, we always felt it was better to be armed with information and come with an opinion versus just sitting back and letting someone else make all the decisions. Being proactive with research and questioning allowed us to be more involved and helped remove some of the feelings of being totally out of control. Meg, Caregiver CHAPTER 3 / MAKING TREATMENT DECISIONS 25

32 24 Non-Small Cell Lung Cancer and its Treatment I think you should be educated as much as you possibly can about your diagnosis. I believe the more you know, the less fear you have. Then you re not playing what if with yourself. Cynthia 26 FRANKLY SPEAKING ABOUT CANCER / LUNG CANCER

33 The recommendations from your health care team and the treatment decisions you make will depend on the stage of your disease, your general health, the potential side effects, and your wishes. Remember, there is no one treatment for non-small cell lung cancer (NSCLC). Your treatment will be as individual as you are and will adapt to your changing needs and side effects. It is important to understand the concept of stage for lung cancer, because it guides treatment options. There are many variations of existing options, and many new treatments are emerging, providing additional treatment options. CENTIMETER SIZING THE SIZE OF A CHOCOLATE CHIP 1 CM STAGING OF NSCLC The TNM Staging System is one of the most commonly used cancer staging systems, which standardizes cancer staging internationally. It takes into consideration: Tumor (T): How big is the tumor? Where is it located? Has it spread to nearby tissue? Lymph Node (N): Has the cancer spread to the lymph nodes in and around the lungs? THE SIZE OF A 50 CENT PIECE 3 CM THE HEIGHT OF AN AA BATTERY Metastasis (M): Has the cancer spread to other parts of the body? The overall staging of NSCLC is based on the TNM results. 5 CM CHAPTER 4 / NON-SMALL CELL LUNG CANCER (NSCLC) AND ITS TREATMENT 27

34 STAGES OF NON-SMALL CELL LUNG CANCER Stage IA The cancer is less than 3 cm, has not spread to the membranes that surround the lungs, and does not affect the main branches of the bronchi Stage IB The tumor is larger than 3 cm but less than 5 cm or it involves the main bronchus (passageway of air to the lung) or the visceral pleura (sac surrounding the lung). However, Stage IB tumors do not involve lymph nodes, do not extend to the center of the chest outside of the lung, and do not involve more than one area of the lung Stage IIA The tumor is no larger than 5 cm and has spread to the lymph nodes and bronchus (passageway of air to the lung) entry point within the cancerous lung or the tumor is larger than 5 cm and less than or equal to 7 cm, with no involvement of the lymph nodes or center of the chest outside the lung and does not involve more than one area of the lung Stage IIB The cancer is greater than 5 cm and less than 7 cm but has spread to ipsilateral (same side) lymph nodes or to the area where the bronchus enters the same lung or the cancer is larger than 7 cm or the tumor touches an area near the lung, such as the chest wall or diaphragm (muscle below the lungs used for breathing), or pericardium (sac surrounding the heart) or it has grown into the main bronchus or the cancer has caused one lung to collapse or caused pneumonia in an entire lung Stage IIIA Between 3 cm and 7 cm and involves the main bronchus (passageway of air to the lung) or visceral pleura (sac surrounding the lung) and has spread to the ipsilateral (same side) lymph nodes near where the trachea (windpipe) branches into the left and right bronchi or near the mediastinum (area between the lungs) or the tumor is larger than 7 cm or touches an area near the lung or has grown into the bronchus or caused a lung to collapse or pneumonia in an entire lung or a separate tumor in the same lobe and has spread to ipsilateral lymph nodes which may be near the windpipe (trachea) and the mediastinum 28 FRANKLY SPEAKING ABOUT CANCER / LUNG CANCER

35 TREATMENT OF NON-SMALL CELL LUNG CANCER or the tumor is of any size and has spread to the mediastinum, heart, trachea, esophagus, backbone or the place where the trachea branches or there is a separate tumor in a different lobe of the same lung and cancer may have spread to the ipsilateral lymph nodes near the bronchus entry Stage IIIB The tumor may be of any size and has spread to the mediastinum (area between the lungs), heart, trachea, esophagus, backbone or the branch of the trachea (windpipe), or there are separate tumors in a different lobe of the same lung or the cancer has spread to lymph nodes on the contralateral (opposite side) lung or to lymph nodes in the neck Stage IV Stage IV is the most advanced form of cancer Cancer has spread beyond a single lung. This spread may be to lobes in the opposite lung, or area surrounding the lung or the cancer has spread to distant parts of the body such as the brain, liver, adrenal glands, or bone or fluid around the sac of the lung Treatment of non-small cell lung cancer (NSCLC) may involve just one type of therapy but more frequently a combination of therapies is used. Surgery Surgical removal of the tumor is a common choice when the cancer has not spread to other tissues in the chest or beyond. Wedge or segmental resection removal of a small part of the lung Lobectomy removal of an entire section (lobe) of the lung Bilobectomy removal of two lobes of the same lung Pneumonectomy removal of the entire lung Thoracotomy an incision is made across the side of the chest and the ribs are spread apart so that the surgeon can gain access to the lung Video-Assisted Thoracic Surgery (VATS) Uses a tiny video camera to guide the surgeon Makes it possible to remove a section of the lung or full lung through a small incision May reduce complications, shorten hospital stays and recovery time by avoiding large incisions CHAPTER 4 / NON-SMALL CELL LUNG CANCER (NSCLC) AND ITS TREATMENT 29

36 There are many pros and cons to surgery and you should discuss the options with your doctor to determine which is the best for you. In general, surgery is not used as first-line treatment if the lung cancer has: Spread into the pleura causing fluid between the lung and chest wall Spread to lymph nodes in the neck, opposite the mediastinum (area located in the center of the chest, but outside the lungs) from where the primary tumor is located or to other organs (e.g., the liver, adrenal glands, or brain) Developed in part of the lung that can t be removed Been diagnosed as SCLC, except in rare cases Surgery is not recommended when the person has other health-related problems that would make surgery risky (e.g., serious heart or vascular problems, severe emphysema, uncontrolled diabetes, and certain other chronic conditions). To find out whether your lungs are healthy enough for surgery, the doctor may give you several tests (e.g., pulmonary function tests). A pulmonary rehabilitation program may be recommended both before and after surgery, especially for people who do not have a regular exercise program. Sometimes inhalers, like those used to treat asthma, can also help improve breathing function to prepare people for surgery. Chemotherapy Chemotherapy uses drugs to destroy or damage cancer cells so they cannot divide and multiply. It can be used to shrink tumors, slow cancer s growth, keep cancer from spreading, relieve disease-related symptoms or prolong survival. Because chemotherapy attacks rapidly dividing cells, it not only damages cancer cells but also injures some normal cells. This is what leads to some of the more commonly experienced side effects (See Chapter 6 for more information about managing symptoms and side effects). Chemotherapy is given as a single drug or in a combination of drugs. Most chemotherapy drugs are given intravenously (through a vein). Some chemotherapy drugs can also be given orally, as a pill. Because the drugs continue to work for days or weeks after they are taken, a period of rest and recovery follows each dose or cycle. People with stage IV cancer who respond well to their initial chemotherapy treatment are often offered maintenance therapy, which involves using a different chemotherapy treatment. It is helpful to talk with your doctor if you have questions about maintenance therapy. 30 FRANKLY SPEAKING ABOUT CANCER / LUNG CANCER

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