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A Patient’s Guide to Lung Cancer Contributors and Reviewers This booklet was written and produced in its entirety by Lung Cancer Canada. It is intended to meet the information needs of patients and caregivers. It is up-to-date and represents current practices in Canada. It is not intended to replace medical information or advice offered by your doctor. Questions or concerns should be addressed with members of your cancer care team. We would like to thank the following people for their involvement in development of the Patient Guide: Lorraine Martelli-Reid Christine Asik Dr. Nina Baluja Dr. Peter Ellis Dr. David Dawe Helaine Guther Susan Hanes Barbara Jackson Dr. Raymond Jang Dr. Michael Johnston Dr. Natasha Leighl Hailee Morrison Christina Sit Vicki Sorrenti Dr. Anand Swaminath Dr. Yee Ung Dr. Sunil Verma Dr. Paul Wheatley-Price Magdalene Winterhoff Joanne Yu Medical Illustrations: Desmond Ballance University of Toronto ©Lung Cancer Canada, 2006 First printing Second Edition, 2008 Third Edition, 2011 Fourth Edition, 2012 Fifth Edition, 2013 II Table of Contents Introduction............................................................................................ 1 The Lungs................................................................................................. 2 What is lung cancer?......................................................................... 4 Prevalence of lung cancer.............................................................. 6 What causes lung cancer?.............................................................. 6 What are the symptoms of lung cancer?.............................. 8 How is lung cancer diagnosed?.................................................. 9 What are the types of lung cancer?....................................... 11 What are the stages of lung cancer and what do they mean? ........................................................... 12 What are the treatment options for lung cancer?................................................................................. 15 Clinical trials ....................................................................................... 27 What are my odds ........................................................................... 29 Talking about your cancer ......................................................... 32 Daily living ........................................................................................... 36 Resources available to lung cancer patients .................. 43 Glossary ................................................................................................. 45 I have lung cancer. IV You or someone close to you is struggling with lung cancer. You may have been feeling unwell for some time and have gone through numerous investigations before the final diagnosis was made. Alternatively, the diagnosis may have been made quite unexpectedly following a routine test or when you were being investigated for an unrelated health concern. Regardless of how it was made, there is usually shock and anxiety for all concerned. There is likely a sense of powerlessness in the face of cancer as well as urgency to have treatment. Friends, family members both young and old — all will be affected. We get it — we’ve been there and are still living with lung cancer. It is very important to remember that it is possible to live with lung cancer. We’ve been living with lung cancer for 3 years (Anne Marie) and 9 years (Roz). Lung cancer happens — to those who smoked and those who didn’t, to the young and the old. The truth is if you have lungs you can get lung cancer. Yes, smoking is a major cause but it is an addiction that, over time, can result in a variety of health problems, not just cancer. Regardless of whether or not you smoked, all patients with lung cancer deserve the best possible care, treatment, support and understanding. So, what do you do now? You probably have many questions. Why did this happen? What will happen to me? What do I do next? What can I expect? How do I cope? Reading this booklet is a start. It will provide information on: • the causes of lung cancer • the types and stages of the disease • how it is diagnosed • treatment options Remember, too, that lung cancer affects every aspect of your life – your physical well-being, your relationships with family and friends, your work and your financial stability. Seek help from professionals for yourself and your loved ones when you need it. Information in this booklet will help you understand how to become an active participant in your care. We and the rest of the Lung Cancer Canada team are also here for you. Keep fighting and most importantly, take care of yourself. Roz and Anne Marie 1 The Lungs Your lungs are essential for good health. The lungs — located in the chest on either side of the heart — are the means by which we take in oxygen and get rid of carbon dioxide and other waste gases. The right lung has three compartments (lobes) and the left lung has two. Air is inhaled and flows past the voice box (larynx) into the windpipe (trachea). Just before reaching the lungs, the windpipe divides into two tubes (bronchi). The left bronchus goes to the left lung and the right bronchus to the right lung. Within the lung, the bronchi become progressively smaller (bronchioles) until they reach the air sacs (alveoli). The job of the alveoli is to add oxygen to the blood and to take waste gases out. The waste gas (carbon dioxide) is removed from the body as we breathe out. The lung is covered by a thin membrane called the pleura. This same pleural membrane also covers the inside of the chest cavity and the small space between the two membranes is the pleural space. Normally a small amount of fluid (pleural fluid) is contained within this space and acts as a lubricant to allow the lung to slide along the chest wall as we breathe. In the lungs, cancers can form in the: • main breathing tubes (bronchi) • small breathing tubes (bronchioles) • air sacs (alveoli) • pleura ! Tips to Take Care of Yourself Be good to your body. Eat a healthy diet and get enough rest. If you are feeling unwell, tell your healthcare providers so you can receive help for your symptoms 2 Pulmonary Vein Pulmonary Artery Alveolar Duct Trachea (Windpipe) Alveoli Lymph Nodes Bronchioles Primary Bronchi Secondary Bronchi Tertiary Bronchi Pleura Diaphragm 3 What is Lung Cancer? Cells are the building blocks that make up our tissues and organs. Normally, before a cell dies, it makes one replacement to take over. Cancer occurs when something goes wrong with this normal system of growth and multiple copies are made. These abnormal cells pile up and form a lump of unusual cells, called a tumour. Tumours can grow their own blood vessels through a process called angiogenesis and are dangerous because they take oxygen, nutrients and space from healthy cells. A malignant tumour (cancer) is a lump that continues to grow and invades the surrounding tissue. A cancer can also spread through the lymphatic system to nearby fluid filtering glands called lymph nodes or through the bloodstream to other organs. This process is called metastasis. When lung cancer metastasizes, the cancer in the lung is considered the primary tumour, and the cancer in other parts of the body is called secondary or metastatic cancers. The type of cancer is always based on which organ the cancer started in. Even when lung cancer spreads to another organ, such as the liver or bone, the diagnosis remains lung cancer. Similarly, cancers elsewhere in the body may spread to the lungs. These are not considered lung cancer. Rather, they are lung metastases from the site where the cancer originated. 4 Normal Cells Abnormal Cells Abnormal Cells Multiply Malignant or Invasive Cancer Boundary Lymph Vessel Blood Vessel Primary Cancer Local Invasion Angiogenesis Tumours grow their own blood vessels LymphVessel Boundary Metastasis Cells move away from primary tumour and invade other parts of the body via blood vessels and lymph vessels Blood Vessel 5 Prevalence of Lung Cancer Lung cancer is the leading cause of cancer death in Canada. Currently one in 12 Canadians will be diagnosed with lung cancer in their lifetime. While lung cancer prevalence rates are decreasing in men, they continue to rise in women. The death rate amongst women is also rising. Every year, more women die of lung cancer than from breast, uterine and ovarian cancers combined. It is also important to remember that although lung cancer tends to occur in older people, you can get lung cancer at any age. People who are under 60 years of age account for almost 20 per cent of new lung cancer cases. What Causes Lung Cancer? During a lifetime, we’re exposed to many things — including certain chemicals, radiation and even some infections — that can damage our cells. This sort of damage may increase the likelihood that cells will multiply out of control to form a tumour. Our immune system, which gets rid of abnormal cells, becomes less efficient as we grow older. Over the years, little bits of wear and tear that did not cause a problem at first can add up. This is one reason the odds of getting cancer of any kind increases with age. Some of us may also inherit cells that are more susceptible to damage. Anyone can get lung cancer but there are some things that can increase your chance. These are: Smoking The majority (85 per cent) of lung cancer cases are directly related to cigarette smoking. Smoking increases the likelihood of lung cancer in different ways. Inhaling smoke destroys the defence system that keeps harmful substances out of the lungs. In addition, tobacco smoke contains many toxic chemicals (called carcinogens because they can cause cancer) that, over time, can promote cell damage. This is why 6 lung cancer risk increases with the number of years a person smokes as well as with the amount smoked. The risk of developing lung cancer is there even after you quit smoking BUT quitting smoking stops the risk from continuing to rise. In Asian countries, especially among women, up to 25 per cent of lung cancers occur in people who have never smoked. It is also important to remember that up to 15% of lung cancers occur in people who have never smoked! Exposure to second-hand smoke Exposure to other people’s smoke also increases the risk of lung cancer. It is estimated that about 3 per cent of lung cancers are caused by secondhand exposure. Certain chemicals A history of working with or around certain chemicals may increase the risk of lung cancer. Chemicals that have been linked with lung cancer include asbestos, uranium, chromium, nickel, coal tar products, arsenic, diesel fuel, bis-chloromethyl ether, vinyl chloride and polycyclic aromatic hydrocarbons. Polycyclic aromatic hydrocarbons are also found in lower levels in tobacco smoke, wildfires and grilled food. There is little known about how much exposure to these chemicals is needed to increase the risk for developing lung cancer. Exposure to radon gas Radon is a colourless, odourless radioactive gas that seeps out of the earth’s crust. It is thought that radon may increase the risk of lung cancer. Some areas have high levels of naturally occurring radon. If you are concerned abut radon, there are kits available that allow you to test for radon levels in your home. More information is available on the Health Canada website at www.hc-sc.gc.ca/hl-vs/iyh-vsv/environ/radon-eng.php. ! Tips to Take Care of Yourself If you are currently smoking, stop. Your risk of developing complications from your treatment, especially when it includes surgery, is much higher if you continue to smoke. 7 Previous lung disease Lung damage caused by other conditions such as chronic obstructive pulmonary disease (COPD), emphysema, bronchitis or scar formation from previous lung infections can increase the risk of lung cancer. Previous cancers Lung cancer is more common in people who have previously been diagnosed with cancers of the mouth or throat. Genetics Cancer may be caused by genetic changes (mutations) leading to the creation of a cancer cell. There is speculation that people with a family history of lung cancer may have a genetic predisposition to developing the disease. The exact role of genes and genetic mutations in the development of lung cancer is still unclear. What are the Symptoms of Lung Cancer? Many people with lung cancer have no symptoms or only vague symptoms until the disease has progressed. As a result, a majority of cases are diagnosed in late stage of the disease. When lung cancer does cause symptoms, they can include: • pain in chest, shoulder, upper back or arm • repeated pneumonia or bronchitis (infection) • coughing • fatigue • shortness of breath • coughing up blood • hoarseness • loss of appetite and weight • wheezing • blood clots • swelling in the face or neck If the cancer has already spread to other parts of the body, symptoms can include: • headaches • weakness • bone pain and/or fractures 8 • abdominal pain How is Lung Cancer Diagnosed? Lung cancer is not easy to diagnose. In its earliest stages, it does not cause recognizable symptoms, such as coughing, wheezing or unexplained weight loss. When symptoms do occur, they can sometimes be similar to symptoms of other respiratory conditions. In a small proportion of cases, lung cancers are detected when patients undergo x-rays for an unrelated problem or as part of a routine physical examination. There are several techniques that can be used to diagnose the disease: Chest x-ray A chest x-ray is still the single most useful test for uncovering lung cancer. It often shows up as an unexplained or new shadow on the images. CT scan CT stands for computed tomography. These special computer-assisted x-rays allow doctors to see exactly where a tumour is located in a lung as well as its relationship to other organs within the chest. It also helps in staging the cancer, which means determining if the cancer has spread to lymph nodes or other organs. An x-ray dye called contrast media may be injected into your blood. This makes structures inside your body show up better in pictures. PET PET stands for positron emission tomography. During a PET scan, a radioactive substance called a tracer is combined with a chemical substance, such as glucose, and injected into the body. The tracer emits signals that are recorded by a special camera. These signals are converted into 3D images of the examined organ. The 3D images allow doctors to see the organ from any angle, which provides a clear view of any abnormalities. ! Tips to Take Care of Yourself Let people know. Telling people about your diagnosis will help cut down on “gossip” and can help you get support from friends and family. Sharing your cancer diagnosis with others may help you feel that you are not alone. 9 Bronchoscopy This technique is used to look into major airways within the lung. A tiny camera embedded into the end of a fine tube is passed through the mouth or nose into the lung. Generally this is done with some sedation and a special spray to numb the throat. If the doctor spots an abnormal area, a small sample (called a biopsy) can be taken to determine whether this area represents a cancerous (malignant) or non-cancerous (benign) condition. Endobronchial ultrasound (EBUS) EBUS is a procedure in which the bronchoscope with an ultrasound is inserted into the airways and sends images to a monitor. Sound waves bounce off the structures in the area and produce pictures on the monitor for the doctor to see. Biopsies from lymph glands or small lung lesions are then done and sent to the lab for testing. Pulmonary cytology This test involves taking a sample Lung cancer is not easy of the fluid that is made in the to diagnose. In its earliest airways of the lungs and looking stages, it does not cause at it under the microscope recognizable symptoms. to see whether it contains cancer cells. The fluid can be obtained by coughing phlegm (sputum) into a special container or, more commonly, by extracting fluid from a suspected area of the lung during a bronchoscopy. Many lung cancers, especially those located toward the edges of the lungs, may not show cancer cells in this fluid. Needle biopsy During this test, a CT scanner or ultrasound is used to guide a needle into the tumour in order to take a tissue sample (biopsy). The tissue sample is then examined under a microscope by a pathologist to determine whether the growth is, in fact, cancer. If these tests do not provide enough information, it may be necessary to undergo a minor surgical procedure, such as mediastinoscopy or thoracoscopy. This will allow doctors to take samples of tumour cells or fluid from around the lung (pleural fluid) or lymph nodes from the middle area of the chest (mediastinum) to see whether cancer cells have spread beyond the lung. 10 What are the Types of Lung Cancer? The two most common types of lung cancer are non-small cell lung cancer (NSCLC) and small cell lung cancer (SCLC). The words “small” and “non-small” refer to the size of the cells found in the tumour and not to the size of the tumour itself. Be certain to ask your doctor about the type of cancer you have. NON-SMALL CELL LUNG CANCER (NSCLC) Among lung cancers, 75 per cent to 80 per cent are NSCLC. These cancers are grouped together because they act alike and respond to treatment in a similar way. There are three sub-types of NSCLC: adenocarcinoma, squamous cell carcinoma and large cell carcinoma. The two most common are adenocarcinoma and squamous cell carcinoma. Adenocarcinoma: This type of cancer starts in mucous-producing cells, often in the outer edges of the lungs. This is the most common form of lung cancer in women and is the type of lung cancer most often diagnosed in non-smokers. It has also been linked with scarring of the lung. Squamous cell carcinoma: Squamous cell carcinoma develops in cells that line the airways (bronchi). It usually develops in more central areas of the lung and is particularly common in smokers. Men are more likely to develop squamous cell carcinoma than women. Large cell carcinoma: This represents about 10 per cent of lung cancers in North America. Large cell carcinoma can occur anywhere in the lungs but usually starts towards the edges. It may grow to a very large size before causing symptoms that lead to a diagnosis. SMALL CELL LUNG CANCER (SCLC) SCLC accounts for about 15 per cent to 20 per cent of all lung cancers. These cancers usually develop in the cells of the large or small airways ! Tips to Take Care of Yourself Indulge yourself. What are the leisure activities and distractions that you have found helpful in the past when faced with difficulties? What do you enjoy doing? 11 (bronchi or bronchioles). It is often referred to as “oat cell” cancer because of its appearance under the microscope. This type of lung cancer has a very high association with smoking. SCLC behaves quite differently from NSCLC. The cancer cells divide more rapidly. This means the cancer is more aggressive and more likely to spread before being detected. OTHER — MESOTHELIOMA Mesothelioma is a rare cancer. There are only 500 new cases a year in Canada. It is most commonly linked to asbestos exposure. Although it grows in the pleura (covering of the lung), it is not considered a form of lung cancer. However, it is commonly treated by a lung cancer specialist. What are the Stages of Lung Cancer and What do they Mean? Before your cancer care team can decide what kind of treatment will work best for you, they need to know not only what kind of lung cancer you have and where it is located, but also the stage it has reached. By “stage,” doctors mean how big the tumour is, where it is located within the lung, whether it invades tissue outside of the lungs and whether the cancer has spread to other sites in your body. To get this information, your doctors may have to order imaging scans of other areas of your body. These may include scans of the brain, the bones and areas in your abdomen, such as the liver and adrenal glands. All of these areas are common sites for lung cancer metastases. Your doctors may also have to take biopsies of some lymph nodes near the tumour. If cancer cells are found at any of these sites, including the lymph nodes, the cancer is more advanced. TNM CLASSIFICATION SYSTEM This is a way for cancer doctors to categorize the extent of your cancer. The system is based on three factors: 1. the size of the tumour (T) 2. whether or not the lymph nodes are involved (N) 3. whether or not the cancer has spread or metastasized (M) to other organs. 12 Additional letters or numbers may be placed after the “T,” “N” and “M” to provide more specific details. Each type of cancer has its own TNM staging classification. In other words, the TNM staging system for breast cancer, for example, is much different from the system for lung cancer. Be sure to ask your doctor what stage your lung cancer is. No matter what stage of lung cancer you have, getting the right treatment can help. STAGES FOR NON-SMALL CELL LUNG CANCER Once the TNM description is determined, the cancer is assigned an overall stage. The stages range from 0 to IV (4). The higher the number, the more advanced the cancer is. The following descriptions cover the majority of cases. You will need to discuss your individual situation with your doctor in order to confirm the stage of your cancer. Stage 0: This describes a situation where cancer cells have been found in the lung or bronchus, but they have not yet formed an actual tumour. This is also called carcinoma in situ. Stage l: This stage is further divided into: Stage IA: The tumour is 3 cm or less and has not spread to nearby lymph nodes. Stage IB: The tumour is greater than 3 cm but no more than 5 cm, and has not spread to nearby lymph nodes. Stage II: This stage is further divided into: Stage IIA: The tumour is between 5 and 7 cm and has not spread to nearby lymph nodes OR the tumour is smaller than 5 cm and has spread to nearby lymph nodes. Stage IIB: The tumour is between 5 and 7 cm and has spread to nearby lymph nodes OR a tumour more than 7 cm that may or may not have grown into nearby structures and has not spread to nearby lymph nodes. 13 Stage III: This stage is further divided into: Stage IIIA: The tumour has spread to the lymph nodes in the middle of the chest on the same side that the tumour is growing on OR the tumour is more than 7 cm and may or may not have grown into nearby structures and has spread to nearby lymph nodes. Stage IIIB: Stage IIIB includes a number of different situations, including: The cancer has grown into the trachea (windpipe), esophagus (swallowing tube), vertebrae (backbone) or the heart and major blood vessels in the chest OR the cancer has spread to lymph nodes near the collarbone on either side OR the cancer has spread into the lymph nodes on the side opposite to the lung tumour. Stage IV: The cancer has spread into the space outside of the lung or moved outside of the chest into other organs such as the brain, bones, liver or adrenal glands. STAGES FOR SMALL CELL LUNG CANCER SCLC is classified into limited stage and extensive stage. Limited stage refers to SCLC that is confined to one lung and pleural space. Extensive stage refers to SCLC that has spread to the other lung or to other areas in the body such as the brain, liver, adrenal glands or bones. In the past three years there has been a move to stage SCLC using the same TNM system that is used to stage NSCLC. For practical purposes, however, until this is fully adopted decisions around treatment still reference the older system. ! Tips to Take Care of Yourself Set a schedule. Use a calendar or planner to keep track of appointments and treatments, as well as commitments. Make a list of priorities – and do only those things that MUST be done. Keep track of who is helping out with what chore and when. 14 What are the Treatment Options for Lung Cancer? The kind of treatment you are offered will depend on several factors, including the type of lung cancer you have, where it’s located, how far it has spread, and your overall health. Many patients receive more than one type of treatment. For example, with non-small cell lung cancer (NSCLC), after the tumour has been surgically removed, you may undergo chemotherapy to kill any cancer cells that may have gone undetected. Cancer treatments are categorized as being either local or systemic. Local treatments Local treatments are directed at a specific part of the body, such as your lung. A local treatment is used when the cancer is limited to a certain area. Radiation therapy and surgery are both local treatments. Systemic treatments Systemic treatments can affect your entire body. Chemotherapy (treatment with drugs) is a systemic treatment. Chemotherapy is generally given by an injection into a vein. It then circulates through the bloodstream and is absorbed throughout the body. Systemic treatments are often used when the cancer is found in several parts of the body or to reduce the chance of a cancer coming back (a recurrence). Another form of systemic therapy is targeted therapy. With the recent advancements in lung cancer treatment, these drugs can specifically target the cancer cells with a therapy that hopefully avoids significant side effects by not injuring the normal cells. If curing your lung cancer is no longer possible, your treatment may be aimed at taking away symptoms caused by the cancer and making you more comfortable. This is referred to as palliative therapy. The goals of palliative therapy are to improve quality of life by reducing cancer symptoms and delay cancer growth. Palliative therapy can include surgery, radiation therapy, chemotherapy and targeted therapies, as well as pain management and oxygen therapy to help your breathing. Be sure you understand what the treatment is meant to accomplish and any side effects that might occur. Notify your treatment team as soon as possible if you experience any side effects. Side effects can often be relieved with medication and other measures. 15 NON-SMALL CELL LUNG CANCER (NSCLC) The treatment of NSCLC depends on the stage of the cancer. In general terms, if the cancer is diagnosed at an early stage, then surgery to remove the cancer entirely is usually recommended. Occasionally, if surgery is not possible for any reason, then radiotherapy may be an alternative. After surgery, you may have a discussion about a course of chemotherapy if there is a risk of undetected cells still remaining. Stage III lung cancer is sometimes treated with surgery, and sometimes treated with radiotherapy and chemotherapy together. Your doctors will guide you in this situation. If your cancer has spread to other parts of the body (Stage IV), then any treatments will be palliative. They may include radiotherapy or chemotherapy. In the past few years, there have been new tests developed to identify some rare subtypes of NSCLC. The most common types are called ”EGFR mutations” or ”ALK translocations”. If you have one of these unusual cancer types, then there are tablet treatments taken by mouth that can be very effective. Finally, there are often new treatments being developed and your doctor may approach you to see if you are interested in participating in a clinical trial. You should, however, be aware that this is entirely voluntary and your treatment will not be compromised if you choose not to enter a clinical trial. SMALL CELL LUNG CANCER (SCLC) SCLC tends to be particularly sensitive to chemotherapy and radiation treatment. Surgery is not usually part of the treatment plan. Treatment for SCLC depends on whether it is limited stage or extensive stage. Treatment of limited stage SCLC begins with a combination of chemotherapy and chest radiation. If x-ray studies of this combination treatment show a complete response of the lung tumour to the treatment, your oncologists will recommend radiation to the brain. Because SCLC commonly spreads to the brain without being detected, ! Tips to Take Care of Yourself Accept help. When someone offers help, accept it. Your friends and family members are likely willing to help but may not know what is most needed at a particular time. 16 radiation treatment to the brain (called prophylactic cranial radiation or PCI), can significantly reduce the chance of cancer appearing in the brain. Treatment of extensive stage disease is palliative. The goal is to improve quality of life and reduce symptoms. It does not offer a cure but may prolong life. Most people respond well to chemotherapy and symptoms often improve substantially. Despite this, the disease usually progresses within months. Oncologists may recommend other treatments, both chemotherapy and/or radiation, to help control the cancer growth and symptoms. MESOTHELIOMA Mesothelioma is a rare cancer. Unfortunately, in most cases, this cancer is not curable but your doctor may talk to you about palliative radiotherapy or chemotherapy. These treatments would be given to try and improve either your quality or quantity of life. Very occasionally, and not in all hospitals, major surgery may be an option if the mesothelioma is diagnosed at a very early stage. TREATMENT OPTIONS Surgery to Treat Lung Cancer Surgery is usually only considered for non-small cell lung cancer tumours that have not spread beyond the lung. Surgically removing either part of the lung or one entire lung can often halt the spread of cancer. Chemotherapy or radiation therapy may be performed before surgery to treat a tumour that may be beyond the area that can safely be removed. These treatments may also follow surgery in order to kill any remaining cancer cells. Types of surgery used to treat lung cancer include: • wedge or segmental resection — removal of a small part of the lung • lobectomy — removal of an entire section or lobe of the lung • nilobectomy — removal of more than one lobe • pneumonectomy — removal of an entire lung (remember you have two lungs) Video-assisted thoracic surgery (VATS) is an approach to surgery that may be used to remove a section of a lung through a small incision. VATS may be used in patients with small tumours, or who have poor lung function and so are risky candidates for major surgery. There is usually less pain after the surgery with this approach. 17 Certain operations may also be performed to confirm a diagnosis or relieve symptoms such as shortness of breath from airway obstruction or fluid pressing on the lung. Most major lung cancer surgery requires a general anesthetic (putting you to sleep) and opening the chest cavity. The most common incision is a cut on the side of the chest (thoracotomy) that enters the chest cavity between the ribs. Specialized thoracic surgery units have designated doctors (anesthetists) who put you to sleep and monitor you during the operation. There are also specially trained nurses, physiotherapists, respiratory therapists and social workers who will help care for you after the operation. Once you are ready to leave the hospital, you will be given pain medication, instructions on how to care for your wound, instructions on any limits to your activities and a follow-up appointment with your surgeon. Like any kind of major surgery these operations carry risks. Risk is not just related to the extent of the operation but also to your overall health. Smokers are at higher risk than non-smokers. So, if you are presently smoking, you can lower your risk by quitting immediately. Age alone is not a major risk factor but the heart, lung and blood vessel diseases that are common in older people do increase the risks of surgery. to ask your cancer care team about ? Qsurgery uestionsinclude: • Am I a good candidate for surgery? • Will I be able to return to my normal life after surgery? • What are the chances that surgery will remove all of my cancer? • Should I consider having chemotherapy or radiation therapy either before or after surgery? • What can I do to help prepare for surgery? • What can I do to help my recovery after surgery? 18 Radiation to Treat Lung Cancer Like surgery, radiation can be used either to try to cure lung cancer or to improve the quality of a patient’s life. Radiation treatments may be done to treat cancer that has spread within, but not beyond, the lung, to improve your chances of recovery by killing cancer cells that remain after surgery, or to treat cancer that has spread to other parts of the body. Your oncologist may also recommend radiation if you have other medical problems that make surgery too risky or if tumours have begun to grow outside of the lungs. Radiation treatment can also be used to relieve symptoms such as cough and shortness of breath or bone pain. The painless treatments generally last only a few minutes, and the equipment that is used looks much like a regular x-ray machine. While you may not experience any side effects with a short course of treatment, radiation therapy sometimes causes symptoms such as fatigue, nausea, vomiting, diarrhea or skin irritation around the treatment site. These side effects are usually short-lived and can often be lessened with medication. A longer course of radiation may cause additional side effects of difficulty swallowing or problems with shortness of breath from scarring in the lung afterwards. Curative radiation treatments are delivered in small daily doses over a treatment time of five to six weeks. Occasionally, chemotherapy is given together with radiation to try and enhance its effect. Radiation used for symptom relief is usually given in a shorter time frame, within five or 10 daily treatments. Stereotactic radiotherapy is a specialized form of radiation where very large doses are given in a short treatment time (one to eight treatments). The goal of the treatment is to effectively control the tumour while using the same precision as a surgeon. Unlike surgery, however, stereotactic radiotherapy does not require an operation or anesthetic. The advantage of this treatment is that a very high dose of radiation can be used to target the tumour, while doses surrounding the tumour fall off very rapidly to ensure that no excess damage is done to normal organs. This form or radiotherapy is generally used to treat very small 19 lung cancers that are too risky to remove by surgery because of other medical conditions that can complicate an operation. It can also be used to treat small tumours that have spread to the brain, lung, liver and/or spine. Possible side effects of stereotactic radiotherapy depend on the location of the tumour but are, in general, similar to conventional radiation techniques in those areas. Overall, it is very well tolerated since it can be done in a very short time period. You should speak to your oncologist about the role stereotactic radiotherapy may play in the treatment of your cancer and, whenever possible, consider taking part in clinical trials. Brachytherapy or endobronchial radiation is sometimes used to treat tumours that cause problems with blockage of the airways. This can cause shortness of breath or coughing up blood (hemoptysis). The advantage of using endobronchial radiation is that the surrounding normal areas around the airways can be spared from having unnecessary high doses of radiation since the treatment is primarily aimed at the tumour in the airway. This procedure is done under local anesthetic by a thoracic surgeon/ respirologist and radiation oncologist. In endobronchial radiation, a bronchoscope (a tiny camera mounted on a fine tube) is inserted into the airways to place a tiny hollow tube (catheter) at the place whether the tumour is located. Once in the appropriate place, a radiation source is remotely loaded down the catheter for treatment. An intense dose of radiation is used for treatment and when done, the catheter is then removed. Possible side effects from this procedure include infection, fever, cough, shortness of breath due to inflammation or swelling of the airways and, rarely, fatal bleeding from the airway. Usually, patients who need to have endobronchial radiation have already had external radiation treatment and cannot have any more external radiation treatment. ! Tips to Take Care of Yourself Just say ”no.” Lung cancer and its treatments can leave you feeling fatigued, so conserve the energy you do have. Accept that you will need to scale back your activities. 20 to ask your cancer care team about radiation ? Qtherapy uestionsinclude: • Why are you recommending these radiation treatments? • What is the goal of this treatment? • What are the key differences between radiation and chemotherapy? • How long will my radiation treatments last? • Is there anything I should do to prepare for treatment? • Are there any side effects or complications I should watch out for after the procedure? • Are there any medications that help with the side effects of radiation? • Will I be able to return to my normal life after radiation? • Is there anything I can do, such as diet, exercise or stress management, to help cope during therapy or to help my recovery? Chemotherapy to Treat Lung Cancer Chemotherapy medications may be taken by mouth (pills) or intravenously. It is usually given in an outpatient clinic, meaning you come in just for the day. Treatments are scheduled over a period of several weeks, with a break in between, to allow your normal cells, especially your blood cells, to recover. During this time you will have regular blood tests and check-ups to monitor your progress. Chemotherapy can be given alone or in combination with radiation treatment and/or surgery. As chemotherapy attacks cells that are multiplying and growing, they can also affect some normal cells. This is why chemotherapy may temporarily cause you to lose your hair. Chemotherapy treatments may also cause nausea, vomiting, loss of appetite and mouth sores. Most people find that these side effects pass over time and can often be prevented or controlled with medication or other approaches that your cancer care team can advise you about. One of the most significant side effects of chemotherapy is the lowering of white blood cells. This may increase your risk of developing an infection. It is very important that you notify your healthcare team if you develop a fever. 21 Some chemotherapy drugs can do damage to hearing, nerves and kidneys. Some may cause permanent side effects such as premature menopause or infertility. It is important for you to discuss with your oncologist the type of chemotherapy drug you are taking and if it might cause these problems. Chemotherapy may be used at various stages of lung cancer treatment. Treatment Timing Definition Neoadjuvant Chemotherapy Chemotherapy that is given before surgery to shrink the cancer Adjuvant Chemotherapy Chemotherapy that is given after surgery to kill any potential cancer cells that may not have been removed by surgery. First-line Chemotherapy Chemotherapy that has been determined to have the best probability of shrinking the cancer. It is used as the first type of chemotherapy treatment in patients with Stage IV disease Maintenance Chemotherapy Ongoing use of chemotherapy after firstline treatment to prevent a cancer that is not growing from starting to grow again. Second-line Chemotherapy Chemotherapy that is given if the cancer has not responded or has recurred after first line chemotherapy (or maintenance). Third-line Chemotherapy Chemotherapy that is given if the cancer has not responded or has recurred after second line treatment. 22 your cancer care team about ? Qchemotherapy uestions to askinclude: • What is the goal of chemotherapy treatment? • What are my treatment options? • How long will my chemotherapy treatments last and how often will I receive treatment? • What drugs will I receive and how do they work? • What side effects might occur and what can I do to prevent or cope with them? • Are any of the side effects permanent? • Whom can I contact if I develop any side effects? • Are there medications to help with side effects? • When will I be able to return to my normal activities after chemotherapy? • Is there anything I can do, such as diet, exercise or stress management, to help cope during therapy or to help my recovery? Targeted Therapies for Lung Cancer We have made some significant advances in the treatment of NSCLC. One of them has been the development and use of new drugs, collectively known as ”targeted therapies”. These drugs have been mostly studied in patients with advanced (metastatic) lung cancer. Unlike standard chemotherapy, which damages both cancer and normal cells, these drugs more specifically target cancer cells and have fewer side effects. Two of the most common side effects are rash and diarrhea. As these treatments target specific parts of the cell or specific genes in the cell, your lung cancer is tested in the laboratory to see whether it is suitable to be treated with the targeted therapies available. 23 There are different types of targeted therapies that can be used to treat NSCLC. The first class of targeted therapies is called epidermal growth factor receptor tyrosine kinase inhibitors (EGFR-TKIs). These drugs specifically block the EGFR tyrosine kinase, preventing cell growth and cancer progression. It may also lead to cancer cell death. In some cases of adenocarcinoma, the receptor has a mutation. Studies show that these EGFR TKIs work better in people who have the mutation. The second class of targeted therapies is called anaplastic lymphoma kinase (ALK) inhibitors (ALK inhibitors). ALK is part of a family of proteins called receptor tyrosine kinases. The ALK gene can sometimes be joined to other genes, causing what is called a “fusion gene”. These ALK fusion genes have been associated with some forms of lung cancer. The most common is called the EML4-ALK fusion gene. ALK inhibitors may slow, shrink or stop the growth of lung cancer by directly acting against the defective version of the ALK gene. There is also a third class of targeted therapies called vascular epidermal growth factor (VEGF) inhibitors. Also known as angiogenesis inhibitors, this class of targeted therapy is not widely used. For the cancer cells to grow they need to create their own blood supply. These drugs block the production of cancer-associated blood vessels and may slow, shrink or stop the growth of lung cancer. In general these drugs are combined with chemotherapy. This type of drug is associated with significant side effects such as high blood pressure, risk of bleeding and delayed or poor healing of wounds. We continue to make progress in the treatment of lung cancer with the development and use of targeted drugs. Results from ongoing clinical studies are eagerly awaited and will help us move towards a more personalized approach to treatment where treatment is tailored to your cancer’s specific makeup. In the meantime, it is important for you to discuss these treatment options with your doctors, have a sample of your tumour sent for molecular testing and consider participating in clinical trials that are investigating new targeted drugs. ! Tips to Take Care of Yourself Keep records. Keep good records about tests, treatments and prescriptions. Write down the contact information for members of your healthcare team. 24 uestions to ask your cancer care team about targeted ? Qtherapy include: • Has a sample of my tumour been sent for molecular testing? • What is the goal of targeted therapy treatment? • Am I a candidate for targeted therapy? What are my treatment options? • How long will this treatment last and how often will I receive it? • What drugs will I receive and how do they work? • What side effects might occur and what can I do to cope? • Are any of the side effects permanent? • Who can I contact if I develop any side effects? • Are there drugs to help with side effects? • Is there anything I can do, such as diet, exercise or stress management, to help cope during therapy or to help my recovery? Drugs Used To Treat Lung Cancer — Updated April 2014 Class of Drug Name of Drug Chemotherapy Carboplatin Cisplatin Docetaxel (Taxotere®) Etoposide (VP-16®) Gemcitibine (Gemzar®) Paclitaxel (Taxol®) Pemetrexed (Alimta®) Vinorelbine (Navelbine®) EGFR tyrosine kinase inhibitor Erlotinib (Tarceva®) Gefitinib (Iressa®) Afatinib (Giotrif®) ALK inhibitor Crizotinib (Xalkori®) VEGF inhibitor Bevacizumab (Avastin®) 25 OTHER TREATMENT OPTIONS Laser therapy Laser therapy is sometimes used to re-open airways that have become blocked by a tumour or to stop bleeding from a tumour in the airway. The procedure is normally carried out under a general anesthetic. While you are asleep, the doctor places a bronchoscope which may be flexible (a small tube containing a tiny camera and a laser) or rigid (a long smooth metal tube) through your mouth, down into the airway, removing as much of the tumour tissue as possible. Often, you’ll be released from hospital later the same day, although you may need to stay a day or two if you have an infection in the lung. You may need a repeat bronchoscopy to help clear secretions after the initial treatment. Laser therapy usually does not cause side effects, but bleeding and pneumonia can occur. It can be repeated as often as needed. ? Questions to ask your cancer care team include: • Why are you recommending laser therapy? • Is there anything I can do to prepare for the procedure? • Are there any side effects or complications I should look out for after the procedure? • Is there anything I can do to help my recovery? • When will I be able to return to my normal activities? ALTERNATIVE THERAPIES FOR LUNG CANCER Many people living with cancer also find it helpful to engage in alternative therapies to help them better manage and cope with their cancer. Popular alternative therapies include: • Acupuncture • Massage • Meditation • Qigong • Yoga If you are thinking about any of these activities, it is important to ensure that you find qualified practitioners and centres that are able to take your needs into consideration. It is also very important to tell your doctor that you are doing some of these activities, especially if you are taking nutritional or herbal supplements as some of these may interfere with the medications that your doctor is giving you. This includes vitamins and antioxidants that can interfere with radiation and chemotherapy benefit. 26 Clinical Trials WHY PARTICIPATE IN A CLINICAL TRIAL? When you are in a clinical trial, you can play a more active role in your healthcare, gain access to new research treatments before they are widely available and help others by contributing to medical research. WHO CAN PARTICIPATE IN A CLINICAL TRIAL? All clinical trials have guidelines and criteria about who can participate. These criteria are based on factors such as age, sex, the type and stage of a disease, previous treatment history and other medical conditions. It is important to note that these criteria are not used to reject people personally. Instead, the criteria are used to identify appropriate participants and keep them safe. The criteria help ensure that researchers will be able to answer the questions they plan to study. WHAT SHOULD YOU CONSIDER BEFORE PARTICIPATING IN A TRIAL? You should know as much as possible about the clinical trial and feel comfortable asking the members of the healthcare team questions about it, the care expected while in a trial and the cost of the trial. The following questions might be helpful for you to discuss with the clinical trial team. Some of the answers to these questions are found in the informed consent document. 27 WHAT SHOULD I DO AFTER I FIND A CLINICAL TRIAL? Please discuss the trial with your healthcare team as they are best able to advise you on your treatment plan. Ongoing clinical trials in lung cancer in Canada are listed on the Lung Cancer Canada website www.lungcancercanada.ca. OTHER USEFUL WEBSITES: ClinicalTrials.gov: www.clinicaltrials.gov Canadian Cancer Trials: www.canadiancancertrials.ca ? Questions to ask your clinical trial team: • What is the purpose of the study? • Who is going to be in the study? • Why do researchers believe the experimental treatment being tested may be effective? Has it been tested before? • What kinds of tests and experimental treatments are involved? • How do the possible risks, side effects and benefits in the study compare with my current treatment? • How might this trial affect my daily life? • How long will the trial last? • Will hospitalization be required? • Will I be reimbursed for other expenses? • What type of long-term follow-up care is part of this study? • How will I know that the experimental treatment is working? Will results of the trials be provided to me? • Who will be in charge of my care? 28 What are My Odds? As soon as the diagnosis was made, you may have wondered, “What are my odds?” This is defined by your prognosis, which is your doctor’s best estimate of how your cancer will respond to treatment. It is based on what we currently know about lung cancer and is influenced by a number of factors: • the type of lung cancer • whether or not the lung cancer has spread • your treatments, and how your cancer responds to them • other personal or medical factors, such as your age, overall health and other medical conditions In discussing your prognosis, your doctor may refer to such statistics as the five-year survival rate. This rate is derived from studies of large numbers of cancer patients which measured the number of people who, five years after diagnosis were: • disease-free (alive without the disease coming back) • deceased A five-year survival rate does not mean that most cancer patients only have five years to live. Rather, it is the percentage of those patients who will be alive five years after their cancer was first diagnosed. The five-year survival rate shows what may happen to most people with lung cancer. It cannot predict accurately what will happen to you. A large number of factors will affect what happens to you. As new and better treatments are developed, survival rates may continue to improve. WHEN CANCER RECURS The term “recurrence” means that the cancer has come back after treatment. Lung cancer may come back: • where it started or close to where it started (local recurrence) • in the lymph nodes or tissues near the original site (regional recurrence) • in organs or tissues in another part of the body (distant recurrence or metastases) 29 You will be reassessed and treatment, including surgery, chemotherapy or radiation therapy, may be offered depending on the situation. Sometimes, it is possible to develop a new tumour or new primary cancer that is unrelated to the original lung cancer. Treatment for a lung cancer recurrence usually involves chemotherapy or radiation. Usually surgery is not an option. In most cases the treatment is palliative. Sometimes, it is possible to develop a new tumour or new primary cancer that is unrelated to the original lung cancer. WHEN CANCER METASTASIZES This means that the cancer has spread beyond the lungs and into other parts of the body. Even though it may be located in another organ, the diagnosis is still lung cancer as the type of cancer is always based on where the cancer started. Your doctor will still treat your cancer using the same treatments that are available for lung cancer. WHEN THE GOALS OF CARE ARE NOT CURE Palliative care When the goals of treatment are no longer to cure you of the lung cancer, treatment opportunities may still be available. Regardless of the treatment options available, your doctor may refer you to palliative care. There is a misconception that a referral to palliative care means that treatment stops. This is not true. The World Health Organization has defined palliative care as: • An approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual In Canada, patients may receive palliative care at the same time as other treatments such as chemotherapy or radiation therapy. It is, therefore, important to realize that a palliative care referral does not mean that your oncologist is “giving up” on you. Palliative care is organized in different ways in different hospitals but may include an inpatient consultation service (where patients admitted 30 to hospital are seen), outpatient consultation service (the patient comes to a clinic), or home visiting service. The palliative care team is comprised of different members. This includes a palliative care physician and a nurse but may include other members such as social worker or a psychiatrist depending on your needs, and/or the local resources available. Some of the important issues that the palliative care team can help you with include pain and symptom management, psycho-social support and end-of-life planning. The focus of the visit will likely depend on several factors such as: how strong you feel, your understanding of your illness, your pain level or other symptoms, and your own preferences. End of life care At some point during your palliative care visits, discussions around endof-life wishes may take place, including issues of prognosis and ”Do Not Resuscitate” (DNR) orders or “Allow Natural Death” (AND). This will be a good opportunity to discuss your wishes, preferences and fears. For example, many patients have fears about living their last days in pain or short of breath. An honest discussion may be very helpful in alleviating these fears. Best supportive care Best supportive care usually refers to patient care when the patient is not receiving any active treatment. If palliative care is an option where you live, you may want to ask your doctor for a referral to palliative care. ! Tips to Take Care of Yourself Reach out. Whether you are a patient or a caregiver, talking with others who are going through a lung cancer diagnosis can help with ideas and strategies on how to cope. Enlist the experts. Talk to the members of your cancer care team. Tell them how you are feeling and about your needs and concerns. Ask questions. They can help with many of them and refer you to other professionals who can offer additional help. 31 Talking About Your Cancer TIPS FOR TALKING TO HEALTHCARE PROVIDERS Being a new patient and getting introduced to the many healthcare providers who may make up your team can be overwhelming. Feelings of fear and anxiety may make it hard to remember and understand what the doctor or nurse says during your appointments. But talking with your cancer team is very important. The information they give you will help you make the best decisions possible. Letting your team know about relevant matters in your life will help them understand the unique way in which lung cancer affects you. You will have many questions as you go through the course of this disease. Asking questions will help you get the information you need and will give you a feeling of control. Here are a few tips Keep a list Keep a list of the members of your cancer care team, who they are and their phone numbers. If you don’t understand something your care provider tells you, say so. Try to be specific about what you need, such as a more detailed explanation or less medical jargon. Check Speak up to make sure you have understood correctly, for example: “What I hear is that this kind of cancer usually responds better to surgery than chemotherapy or radiation. Am I understanding this correctly?” Put it on paper Jot down the questions you want to ask at your next appointment and take the list with you. Take notes to help you remember what the doctor or nurse said. Bring along a friend or family member who can make notes and also interpret what you were told. Some people find it useful to tape record their conversations with healthcare providers, then replay the Record it tape later so they are clear about the topics discussed. If you choose to do this, always inform the provider before starting to record. Share Share with your healthcare team who the important people are in your life and to whom they may or may not communicate. Tell them if you want detailed information on all aspects of your medical situation or if you prefer general information only. 32 TALKING TO CHILDREN ABOUT CANCER Consider your children’s age and development stage when talking to them about your cancer. Don’t be afraid to use the word “cancer” and clearly describe where your cancer was found. Often it helps to draw simple pictures to help you show locate where the “cancer lump” has been located. It is essential to be truthful. Your children will sense something has been kept from them if they overhear you telling others more or different information. During this discussion, carefully reassure your children they did not cause your cancer. Frequently children have unspoken beliefs that their misbehaviour or a past negative outburst caused your disease. Children also benefit from your stating clearly that cancer is not contagious. Again this is another fear that many children worry about, but may not express or ask you about. Tell your children about your treatment plan. Chemotherapy can be described as “special medicine” and radiation treatments “like X-rays”. It is important for you to distinguish that your cancer treatments are not the same as your children’s medicine or their dental x-rays, for example. It is helpful to prepare them for your anticipated side effects. Telling them about potential fatigue, hair loss, nausea or the number of appointments you may have or if you need to spend nights in the hospital will help your children prepare for the expected changes. Your children may hear things about you, your cancer and your treatments while they are with family or friends. Encourage your 33 children to come and talk to you if they hear something that differs from what you have told them and assure then that you will be honest. Also explain to their caregivers, teachers and your family members what it is you have told them. This way everyone understands what has been discussed and can be supportive to you and your children, and watchful for any changes in their mood and behaviour. Also talk to your children about who will help take care of them. Providing them with a simple explanation of the plans that are in place to help out with the care and routines will go a long way to helping them feel more secure. Many cancer centres have social workers who can meet with you to talk about what to say to your children. They may even be able to set up a tour of the locations at the centre where you have your appointments and treatments. Seeing the centre and meeting the staff may relieve some of your children’s unspoken anxieties or fears about what you are experiencing during your treatments. TALKING TO CHILDREN ABOUT CANCER THAT IS NO LONGER RESPONDING TO TREATMENT Sometimes cancer continues to grow aggressively in spite of the best medicine and care available. Children need to be kept up to date on the changes in your health in order to help them adjust along the way and prepare for the future. Regular family discussions about what is happening in each of your lives helps you stay connected. It is the natural opportunity to keep your children informed about changes in your health and your treatment. Use gentle, direct, age- and stage-appropriate language to explain the changes with phrases such as, “mommy is getting sicker” and as things change “mommy is getting very sick” and later “mommy is very, very sick and will not get better”. These phrases convey a message of increased illness and help move the children along in their understanding of the illness. Many parents, of all ages, avoid talking about their illness or about dying, simply out of love and a need to protect their children from harm. Children, however, do better and are more resilient when parents talk with them and explain the nature of the disease, and assure them that they will not be abandoned but continue to be there for them. When cure is no longer the goal and comfort and quality of life are the focus for you, there are many things you and your children can do together. You can prepare a memory book or photo album capturing favourite 34 moments or talk and write about them. You can fill a memory box together with favourite things that will remind the children of your best times together. You can jot thoughts on 3x5 cards and place these in the memory album or box, documenting important messages you want to leave for your children. These may include thoughts for their future or another stage of their lives. You may not be able to be there in body, but you can be there in thought and spirit by leaving these essential guiding sentiments. You can also record a CD or video, speaking to your children about the things you wish for them to remember about you or perhaps about your hopes and dreams for them. There will be many future occasions when your children will think of you and, on some very special occasions, miss you desperately: their first birthday after you are gone, or a special birthday like their 16th or 21st or that first Christmas. Perhaps it will be their wedding day that makes them pause and long for your presence. You can anticipate these emotional landmines by purchasing a greeting card, a gift or having some significant memento made available to them on that special day. It will ease the hurt and make a difference in the relationship between you. It will change from a relationship of presence to a relationship of memory. It will be worth the effort to do some of these things. It is an investment in your children’s future and can make an enormous difference in their well-being and adjustment. 35 Daily Living MANAGING DAILY ACTIVITIES, ENERGY CONSERVATION AND WORK EFFICIENCY Living with lung cancer may mean that you may have shortness of breath, limited activity tolerance or fatigue. These symptoms may, in turn, affect your lifestyle and your ability to carry out normal, day-today routines such as looking after yourself – getting washed, getting dressed, managing basic homemaking tasks, working or enjoying leisure activities with family and friends. There are things that you can do to help save energy and manage some of these systems. These tips can help you achieve that delicate balance between rest and activity, enabling you to participate in activities that you enjoy and are meaningful to you. It is essentially a common sense approach to living. It will help you to maintain control over your life and activities, rather than the symptoms deciding what you can and cannot do. Getting started – understanding your abilities Examine your lifestyle “walk” through a typical day for you and itemize activities that you find difficult or tend to increase your symptoms. For example: • getting up from a low surface such as a chair, toilet, bed or sofa • bending to reach low surfaces • or getting dressed • or standing • or walking for any period of time. Identify problem activities Review and try to find a common theme. For example: • Getting up from any surface lower than ___ inches • Any bending activity or activity that limits your lung expansion • Standing or walking for longer than ___ minutes • Any activity that causes you to hurry • Specific times during the day when you feel more tired or when the activities seem more difficult. 36 What might help? Alter your environment • If surfaces are too low, consider using an extra cushion on a favourite chair or in the car • Try to use chairs with armrests • Elevate the chair or sofa with blocks • Install a handheld shower so you can control the direction of the water. Some people find the constant stream of water from a fixed shower head increases their feeling of breathlessness • Organize drawers or storage areas so frequently used items are within easy reach. Use self-care equipment • Elevate a low toilet with a raised toilet seat with armrests, or install a comfort height, energy efficient model. A toilet frame or wall mounted safety bar are other options to consider if the seat height is adequate • Shower from an adjustable height bath chair or bench, set at an appropriate height for you. While washing, sitting is easier and safer for you and your caregiver • Plan each day to include only what you can realistically accomplish. Try to recognize your abilities and limitations. Stop before you become too tired or short of breath Plan and • Alternate heavy tasks, or those requiring more organize daily energy, with light tasks • Consider the best time of the day for you to carry out a or weekly task, including social activities and visiting with friends schedules • Incorporate rest periods – frequent, shorter rests during activities are of greater benefit than fewer, longer rest periods. Learn your tolerance for sitting, standing or walking Set priorities Look at your activities for the day and put them in order of importance. Only you can make the decision about what your priorities will be. Pace yourself Allow sufficient time to complete a task or activity. Avoid rushing. Eliminate unnecessary tasks • Plan ahead, organize supplies or work space to reduce extra trips • Minimize stair climbing. Store items on the same floor on which they will be used most often. Complete tasks on one floor before going downstairs/upstairs. Modify your routines gradually Start easily. Try to do a little more each day. If you are tired or not feeling well after a change, do a little less for a day or so. 37 NUTRITION Many people receiving cancer treatment find their tastes and food preferences are different compared with what they had been in the past. You may find you can no longer tolerate foods you used to enjoy. On the other hand, you may be hungry for foods you rarely ate in the past. Do not be alarmed by these changes, they are quite common. Eat whatever you are hungry for now. Before treatment Preparing meals ahead can make it easier to get through the rough spots. Freeze meals, or stock up on ready-made frozen dinners so there is food on hand when you don’t have the energy to shop and cook. These meals should be fairly mild in flavour and soft, just in case you are having side effects from treatment like a sore throat. During treatment Take advantage of friends and family when they offer to help. Make a list of tasks that would make life easier. Let the friend who is a good cook bring you a meal. A pot of soup or a casserole delivered to your door when you are tired can mean the difference between eating and missing a meal. Let the friend who doesn’t like being in the kitchen pick up groceries. After treatment Don’t expect your energy level to recover as soon as treatment ends. Good nutrition plays a key role in healing and regaining strength. Continue following the advice mentioned above to help you achieve your nutrition goals. If you are having significant problems at any stage of treatment, you can ask to see a dietitian at your treatment facility. Feeling sensitive to food odours? Try eating foods that are cold or at room temperature. Foods served hot often have a strong smell. You can also choose foods that do not need to be cooked, such as cold sandwiches, crackers and cheese, yogurt and fruit, cold cereal and milk. Do you have a metallic taste in your mouth? Try using plastic eating utensils and glass cooking pots. Some people find that meat tastes metallic after treatment. If you find meat metallic 38 tasting, try eating other protein-rich foods like fish, eggs, dairy products, beans, tofu and soy milk. You can also try masking the metallic taste of meats by marinating your meat in orange juice, lemon juice, Italian dressing, vinegar, sweet and sour sauce, wine, soy sauce or teriyaki sauce. Keep your mouth clean Keeping your teeth brushed and flossed can help get rid of bad tastes in your mouth. You can also try rinsing you mouth with baking soda (¼ teaspoon) in water (one cup) before and after eating to help clear your taste buds. Eat early in the day Your appetite is usually greatest at the beginning of the day. Take advantage of your appetite by making breakfast your largest meal of the day. Don’t wait till you feel hungry to eat. Eat small amounts throughout the day It is often easier to eat several small meals throughout the day rather than three large meals. Talk to a dietitian about nutritional supplements (such as Boost® or Ensure®) if you are not able to eat enough throughout the day. BONE HEALTH A healthy diet and regular weight-bearing exercise can help maintain strong bones. Bones are common area for lung cancer to spread which is why diet and weight-bearing exercise are very important. If your lung cancer has spread to your bones, there are many different effective treatment options that can help. You should discuss with your doctor whether receiving chemotherapy, either through an intravenous or a pill, is an option for you. Other options include radiation therapy, surgery or drug treatment. Radiation treatment is often given to relieve pain and treat cancer pressing on the spinal cord. Surgery may be necessary to fix a broken bone (fracture) or to prevent future fractures in a bone that is weakened from cancer. There are also drug treatments that specifically target bone metastases. Two types of drugs have been studied in people with bone metastases from lung cancer. The first type is bisphosphonates, also widely used for osteoporosis, and the second is a drug called denosumab. Both target bone destruction from cancer. Bisphosphonates (for example zoledronate or pamidronate) are given by injection into a vein 39 (intravenous) and denosumab is given by injection under the skin. While these drugs act in different ways, clinical trials have shown that both of them reduce the risk and delay the onset of skeletal-related events, as well as improve pain control and quality of life. Calcium and vitamin D supplements are also recommended for most patients with bone metastases, particularly if you are being treated with a bisphosphonate or denosumab. They are also recommended if you are taking any medications that are known to weaken the bones, for example steroids. You should talk to your doctor about whether taking calcium and vitamin D is a good idea for you. MANAGING SHORTNESS OF BREATH When you are short of breath, it is hard to do your regular activities such as getting dressed, cooking a meal and doing the things that you enjoy. When you are short of breath, you may tighten up your chest muscles to breathe, breathe faster, have feelings of fear, anxiety, panic or general unrest. As someone living with shortness of breath, you may find that you are more tired, worried and anxious. You may be upset about your condition and may wonder if anyone else feels like this. They do! When you are feeling short of breath, it is important to know that you should call your healthcare team. There are also things that you can do every day that can help. Use the link below to access a book with exercises tips and techniques that will help you manage shortness of breath. www.hamiltonhealthsciences.ca/documents/Patient%20Education/ ShortnessBreathJCC-th.pdf 40 ? When to call your healthcare team • When your breathing has become more difficult over a short period of time • Along with breathing problems, you feel dizzy, you notice an increase in your heart rate or your skin is very pale. One of your blood counts may be low and you may need a blood test • You are struggling to breathe and feel very nervous • You have sudden, new or increasing chest pain • You have a fever 38°C or higher • When you wake up you are suddenly short of breath • You have a new or increasing cough • Your breathing is noisy USING OXYGEN For some patients dealing with shortness of breath, the use of supplemental oxygen can be quite helpful. Oxygen therapy benefits patients by increase the supply of oxygen to the lungs and, thereby, increasing the availability of oxygen to the body’s tissues. Your physician can and should be the person to determine if oxygen supplementation can help you. Lung cancer and the use of oxygen and medications Many people believe that “being on oxygen” is a sign that they are desperately sick. This is not always true. For some people, being on oxygen is an important part of their therapy. For others it may be a form of short-term treatment. Oxygen therapy isn’t for everyone. Only people who suffer from significantly low blood oxygen levels will benefit from oxygen therapy. In the case of lung cancer, patients with low blood oxygen levels (hypoxemia) or temporary lung damage from infections (like pneumonia) will benefit most from oxygen therapy. Ask your doctor to test your hemoglobin levels to determine if oxygen therapy might help you. 41 How does oxygen therapy work? Oxygen therapy is generally delivered as a gas from an oxygen source such as a cylinder or concentrator. The oxygen is either administered through small nasal “prongs” that fit into the nostrils or through a mask that covers the mouth and nose. Breathing in this extra oxygen raises low blood oxygen levels, making breathing easier and lessening strain on your body. Because your body cannot store oxygen, the therapy works only when you are using it. Like any other prescription medicine, oxygen must be used very carefully and only as prescribed. Your doctor will tailor your oxygen prescription to your needs. When your oxygen is delivered to your home, you and your family will be given instructions on how it is to be used and how to clean your equipment. How long do people use oxygen? If you have a respiratory infection you may only need oxygen until your infection clears and your blood oxygen levels return to normal. If you have chronically low blood oxygen levels because of cancer or COPD, you may need oxygen permanently. Funding for oxygen therapy Oxygen therapy can be expensive, especially when taken over the long term. Government funding for oxygen therapy is available. Ask your doctor about funding programs and if you are eligible. Funding varies from province to province. Tips for using oxygen Keep your oxygen equipment clean. Clean equipment works more effectively. Clean equipment also helps prevent infections. Always wash your hands before cleaning or handling your oxygen equipment. Travelling with oxygen. With help and planning you can travel with oxygen. Contact your oxygen supply company well in advance to allow them to arrange for oxygen while travelling and at your destination. Smoking, fire and flammable products. You should never smoke while using oxygen because of the risk of fire. Warn family members and visitors not to smoke near you when you are using your oxygen. Also, remember to stay at least five feet away from candles, lit fireplaces and gas stoves; and do not use any flammable products (e.g., aerosol sprays) while using your oxygen. Flow adjustments. You should never change the flow of oxygen unless directed by your physician. 42 Resources Available to Lung Cancer Patients Many types of supports are available for lung cancer patients. Some follow a face-to-face format, others are in print form and others are online. These include: Peer and professional support • Counselling • Online networks • Support groups (including for children) – in person, online, telephone • Stories of hope Information • Disease and treatment for both patients and caregivers • Clinical trial opportunities Training • Relaxation techniques • Advocacy training • Empowering patients to navigate their own care, research opportunities CANADIAN LUNG CANCER RESOURCES (not including Lung Cancer Canada) Canadian Cancer Society www.cancer.ca • Largest Canadian cancer charity and largest charitable funder of cancer research • Support services include: – Cancer Information Service (telephone) – CancerConnect – matching with trained peer volunteer – Educational material – Statistics 43 Wellspring www.wellspring.ca • Focuses on the care of the whole person, with the aim of improving quality of life. Programs include: – Peer support – Coping skills and relaxation techniques – Yoga – Tai chi – Qigong – Meditation – Guided imagery • Expressive programs that focus on expressing feelings through art, music, writing or quilting • Support groups • Education presentations and workshops on: – Practical advice on day-to-day living – Challenges of living with cancer – Post-treatment issues Gilda’s Club www.gildasclubsoutheasternontario.org • Provides support and networking groups, lectures, workshops and social events, as well as structured programs for children and teens • Helps members build their own unique and customized community of support Canadian Lung Association www.lung.ca • Provides information about lung cancer online, patient stories Cancer Advocacy Coalition of Canada www.canceradvocacy.ca • Provides advocacy through annual report card commenting on Canada’s cancer services 44 Glossary Adenocarcinoma – the most common type of non-small cell lung cancer Adjuvant therapy – the use of another form of treatment after surgical removal of the cancer ALK – Anaplastic Lymphoma Kinase – sits on the surface of the cell and is involved in cell growth and division. Defective versions of the ALK gene have been associated with cancer Angiogenesis – the development of blood vessels Benign – not malignant or cancerous Bilobectomy – surgery that removes more than one lobe of the lung Biopsy – the removal of body tissue to test for cancer Bronchioalveolar carcinoma – a subtype of adenocarcinoma that can sometimes grow slowly Bronchoscopy – examination of the major airways within the lung Bronchi – the major branches leading from the trachea (wind pipe) to the lungs, providing the passageway for air movement Cancer – malignant tumour(s) Carcinogen – substance that is known to cause cancer Chemotherapy – a class of drugs used to treat cancer CT scan – Computed Tomography - a computer-assisted x-ray that shows the location of tumours. Also called a CAT scan (computed axial tomography) EGFR – Epidermal Growth Factor Receptor – sits on the surface of the cell and is part of cell growth and division. Over expression or mutations in the receptor may lead to cancer Extensive stage – small cell lung cancer that has spread from one lung to other areas in the body Five-year survival rate – a statistic that describes the percentage of people, all with the same cancer stage, who are alive and free of cancer five years following its diagnosis Large cell carcinoma – an uncommon type of non-small cell lung cancer Lesion – an abnormal change in structure of an organ or part due to injury or disease 45 Limited stage – small cell lung cancer that is confined to one lung and the area closely around that lung Lobe – one of the compartments of the lung Lymph nodes – fluid-filtering glands located throughout the body Malignant tumour – a cancerous tumour which is capable of invading surrounding tissue and spreading to other areas of the body Mediastinum – the middle area of the chest between the lungs that contains structures such as the trachea, lymph nodes, heart and esophagus Medical oncologist – a doctor who specializes in treating cancer with chemotherapy drugs Mesothelioma – a cancer that develops in the pleura and is usually related to asbestos exposure. It is not a lung cancer but is treated by many of the same specialists that treat lung cancer Metastasis – spread of cancer to other organs through the lymphatic system and/or bloodstream Metastatic tumour – refers to those tumours that have spread from the primary lung cancer (also called secondary tumours) Molecular testing – occurs in a laboratory where a sample of the tumour is studied to understand the specific makeup of a tumour (e.g., presence of specific mutations or genes) Non-small cell lung cancer – one of the major classes of lung cancer. It has three major subtypes: adenocarcinoma, squamous cell carcinoma, and large cell carcinoma Oncologist – a doctor who specializes in treating cancer. Some oncologists specialize in chemotherapy (medical oncologists), radiotherapy (radiation oncologists), or surgery (surgical oncologists) Palliative care – treatment aimed at the relief of pain and other symptoms Pathologist – a doctor who diagnoses lung cancer by studying fluid or tissue under a microscope PET Scan – Positron Emission Tomography – A scan that uses a tracer to send signals to a special camera that converts those signals into 3D images Pleura – a thin membrane that covers the outer surface of the lung and the inner surface of the chest wall Pleural space – the area between the two pleural membranes Primary cancer – the site in the body where the cancer first started 46 Prophylactic cranial radiation – radiation treatment given to the brain to treat microscopic cancer cells that may have spread to the brain, but so far are undetectable Radiation – a treatment method that uses high-energy rays to destroy cancer cells Radiation oncologist – a doctor who specializes in treating cancer with radiation Radiologist – a doctor who reads x-rays, CT scans, and other medical imaging. Some radiologists also perform diagnostic procedures, such as needle biopsies, using medical imaging for guidance. Recurrence – the return of cancer after treatment Remission – the absence of disease Respirologist – a doctor who specializes in the treatment of nonmalignant diseases of the lung, and performs bronchoscopies Second-hand smoke – exposure to tobacco smoke from someone else smoking Small cell lung cancer – one of the major classes of lung cancer Squamous cell carcinoma – a type of non-small cell lung cancer Staging – a classification used to describe the size and extent of a primary tumour and whether it shows evidence of metastasis Targeted therapy – A type of cancer treatment that directly work on specific parts of the cancer cell (e.g., defective genes or mutations). The drugs used in targeted therapy do not interfere with the normal healthy cells in the body Thoracic surgical oncologist – a surgeon who specializes in diagnosing and treating lung cancer and other tumours of the chest Tumour – an abnormal mass or clump of cells that can be non-cancerous (benign) or cancerous (malignant) VATS – Video Assisted Thoracic Surgery VEGF – Vascular Epidermal Growth Factor – a signaling protein in the cell that participates in the growth and development of blood vessels. Over expression of this protein may lead to cancer X-ray – a diagnostic image produced by the use of low-dose radiation 47 Notes: 48 Notes: 49 Notes: 50 10 St. Mary Street, Suite 315, Toronto, Ontario M4Y 1P9 416-785-3439 (Toronto) 1-888-445-4403 (Toll free) 416-785-2905 (Fax) www.lungcancercanada.ca [email protected] Charitable Registration Number: 872775119 RR0001 Lung Cancer Canada is a national charity and the only one dedicated solely to lung cancer. It relies on donations to offer programs and services, such as this booklet, to patients and their families. Donations are greatly appreciated and a tax receipt is issued for a donation of $25 or more. Donations can be made online at www.lungcancercanada.ca, or by calling the numbers above.