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Table of Contents Overview of Lung Cancer ...................................................................... 2 Methods for Diagnosing and Staging Lung Cancer............................ 4 Understanding Your Pathology Report ................................................ 6

Chief Executive Officer Mark A. Uhlig Publisher Linette Atwood Co-Editor-in-Chief Charles M. Balch, MD, FACS

Staging Lung Cancer ............................................................................... 7

Co-Editor-in-Chief Paul A. Bunn, MD Senior Vice President Debby Easum

Types of Treatment for Lung Cancer .................................................. 10 Jennifer Glass: Lung Cancer Patient Story ......................................... 13

Vice President Operations Leann Sandifar Managing Editor Matt Smithmier Contributing Writers Lori Alexander, MTPW, ELS

Treatment Options by Stage ................................................................. 14

Anna Braunsdorf Graphic Designers Kelli Schmidt

Side Effects of Lung Cancer Treatment .............................................. 16

Michael St. George Production Manager Jennifer Hiltunen

Catching Your Breath: Managing Symptoms of Dyspnea ................ 17

Senior Director of Sales Stephanie Kenney Advertising Sales Director Amy Galey

Finding Relief from Lung Cancer Pain............................................... 18 Account Executives Kathy Hungerford Jessica Morrow

Living a Healthy Lifestyle ..................................................................... 20 Office Address 8455 Lenexa Drive Overland Park, KS 66214

Financial Resources............................................................................... 22 For Additional Information prp@patientresource.com

Advocacy & Assistance Resources ...................................................... 23

PATI EN T R ESOU RCE CA NCER GU I DE

Lung Cancer Third Edition

Co-Editors-in-Chief Charles M. Balch, MD, FACS Professor of Surgery, University of Texas Southwestern Medical Center Editor-in-Chief, Patient Resource LLC

Paul A. Bunn, MD James Dudley Endowed Professor of Lung Cancer Research, University of Colorado School of Medicine Past Executive Director, International Association for the Study of Lung Cancer Past President, American Society of Clinical Oncology

Advisory Board Visit our website at PatientResource.com to read bios of our medical and patient advisory board members.

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Overview of Lung Cancer

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According to the American Cancer Society, an estimated 228,190 new cases of lung cancer were diagnosed in 2013, making lung cancer the second most common type of cancer in both men and women in the United States. The rate of new cases of lung cancer varies according to gender and race/ ethnicity, but the disease occurs more often in men than women and occurs most frequently in black and white men.

How lung cancer develops Lung cancer is the uncontrolled growth of abnormal cells lining the airways (bronchi) of the lung (Figure 1). Researchers believe lung cancer develops slowly over the course of many years after exposure to cancer-causing substances (carcinogens) leads to more and more genetic abnormalities that accumulate in the cells. After a period of years, the abnormal cells become malignant (cancerous) and divide and spread.

The overwhelming cause of lung cancer is tobacco products, such as cigarettes, pipes or cigars. The earlier in life a person starts smoking, the more packs of cigarettes a person smokes, and the more years a person smokes, the greater the chance for lung cancer. Once a person stops smoking, the risk becomes lower each year, but the risk is still higher than for people who have never smoked.

Up to 20 percent of lung cancers (approximately 45,000 cases annually in the United States) develop in people who have never smoked, most often women. In some of these cases, unknown factors are responsible. Exposure to secondhand smoke, asbestos and radon also increase the threat of lung cancer, and family history and ethnicity are other factors as well.

Even though lung cancer grows slowly, it spreads through the bloodstream and is difficult to detect early, primarily because there are no early symptoms of lung cancer.

Figure 1. Anatomy of the lungs

Trachea

Lymph node

Carina

Right main bronchus

Left main bronchus

Right upper lobe

Left upper lobe

Right middle lobe Cardiac notch Right lower lobe

Left lower lobe

Diaphragm Two layers of pleura

Mediastinum (between right and left lungs) © Patient Resource LLC

The lungs are spongy, air-filled organs located on either side of the chest (thorax). The right lung has three lobes, and the left lung has two lobes. Air enters the lungs through the nose and mouth, moving through the windpipe (trachea) and into the airways (bronchi) in the lung.

These airways divide into smaller branches, called bronchioles, and end in microscopic air sacs (alveoli), where oxygen and carbon dioxide are exchanged.

The lungs are covered by a thin layer of tissue called the visceral pleura. Another layer of this same kind of tissue lines the inside of the chest cavity; this layer is called the parietal pleura.

Fluid between these two tissue layers acts as a lubricant as the lungs expand and contract during breathing. The diaphragm is a muscle at the base of the lungs that helps in breathing.

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In addition, many of the first symptoms, such as a cough, are also symptoms of chronic lung disease caused by tobacco products.

This means there’s nothing to alert a person to seek medical care.

However, a method to screen for lung cancer – low-dose spiral computerized tomography (CT) – now exists and is recommended for people at high risk for lung cancer because of their smoking history and age.

A large study, the National Lung Screening Trial, showed that 20 percent fewer lung cancer deaths occurred among people at high risk for lung cancer when they were screened with this type of test, compared with people who were screened with standard chest Xrays. Based on the results of this trial and other studies around the world, lung cancer screening is recommended for a specific group of people considered to be at high risk, including people 55 to 74 years old who have smoked the equivalent of a pack of cigarettes daily for 30 or more years, and who stopped smoking fewer than 15 years previously. The International Association for the Study of Lung Cancer (IASLC) and other organizations suggest that individuals at a high risk of lung cancer should discuss a screening CT scan with their doctor.

This screening CT does have some limitations, however. Small lung masses (nodules) are found in about one in four people, but only a small percentage of these are cancerous. This means that some people will have frequent follow-up scans, a biopsy or another procedure for a mass that is not cancerous. Researchers are exploring ways to best manage these masses when they are detected and also evaluating other reliable markers in blood, sputum (a mixture of saliva and mucus from the respiratory tract) and urine that may indicate the presence of lung cancer.

Types of lung cancer Lung cancer is classified into four main types: small cell carcinoma, large cell carcinoma, adenocarcinoma and squamous cell carcinoma (see Table 1). The type is determined by the pathologist, who looks at a sample of tumor tissue under a microscope and sometimes uses special stains to allow some otherwise transparent tissue sections to be visible. A pathologist is a doctor who specializes in the examination of tissue to determine disease.

Small cell lung cancer most often spreads to other sites and may grow much faster than the other types. Because of this, small cell carcinoma is sometimes distinguished from the three other types, which are Pa t i e n t Re s o u r ce .co m

sometimes classified together as “non-small cell lung cancer.” This distinction is no longer as relevant because optimal treatment now depends on the specific type. Also, the different types may be associated with genetic abnormalities that drive the growth of the cancer. The type of lung cancer is becoming further defined by the presence or absence of specific genetic abnormalities (see page 5).

The most common type of lung cancer is adenocarcinoma, followed by squamous cell carcinoma, small cell carcinoma and large cell carcinoma. All types are caused primarily by cigarette smoking, but adenocarcinoma is the type that occurs most often in people who have never smoked.

Table 1. Classification of lung cancer Type

Frequency (among all lung cancers)

Non-small cell lung cancer (NSCLC)

80-85%

Other features

• Adenocarcinoma

35-50%

Glands of the lungs that produce mucus; often in the outer edges of the lung

Most common type of lung cancer overall, in women, and in people who have never smoked. Type most often associated with identified genetic abnormalities.

• Squamous cell carcinoma

20-25%

Lining of the bronchial tubes; usually in the center parts of the lung

Highly associated with tobacco smoking.

• Large cell carcinoma

10-15%

Can occur anywhere in the lung but usually near the surface, at the outer edges of the lung

Grows more quickly than the other two subtypes.

Small cell lung cancer (SCLC)

15-20%

In the center of the lung, with invasion of the hilar and mediastinal areas and disease in nearby lymph nodes

The cancer cells multiply rapidly and form large tumors that can spread throughout the body; current and former smoking is almost always the cause.

The exact type of NSCLC must now be distinguished for optimal therapy.

About this guide This guide is primarily for men and women who have had a suspicious mass detected on an imaging study or have had lung cancer diagnosed. In the pages that follow, you will find information on how doctors diagnose and stage lung cancer and work within a team to plan a treatment designed to achieve the best outcomes possible for your particular tumor. You will also learn about the various treatment options, potential side effects of treatment, the management of lung cancer symptoms and how to take control of your life after a lung cancer diagnosis. Throughout the guide you will also be directed to websites with more details to help you better understand lung cancer and its treatment.

Where it’s usually found

ADDITIONAL RESOURCES American Cancer Society: www.cancer.org American Society of Clinical Oncology (patient website): www.cancer.net Recommendations for Lung Cancer Screening International Association for the Study of Lung Cancer: www.iaslc.org MedlinePlus: www.nlm.nih.gov/medlineplus Interactive Tutorial on Lung Cancer

National Cancer Institute: www.cancer.gov What You Need to Know About Lung Cancer National Lung Screening Trial (NLST) National Comprehensive Cancer Network: www.nccn.org Lung Cancer Screening National Lung Cancer Partnership: www.nationallungcancerpartnership.org Living with a Diagnosis of Lung Cancer

Five things you should know about lung cancer

1

Not all lung cancers are the same. As with many other types of cancer, lung cancer is not just one disease. Instead, there are different types of lung cancer, classified according to the specific tissue in the lung in which they develop.

Determining the classification of lung cancer and the stage of disease is important because treatment is selected according to the type and stage. Learn about the diagnosis and staging of lung cancer beginning on page 4.

2

You don’t have to smoke to get lung cancer. Although the overwhelming cause of lung cancer is smoking, not all people with lung cancer are smokers.

In fact, the most common type of nonsmall cell lung cancer (adenocarcinoma) occurs most often in people who have never smoked. You may not have to smoke to get lung cancer, but if you do smoke, you have to quit! Quitting is not

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easy and it may take several attempts before you’re successful, but you can get help from several resources. Ask your doctor for help.

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Lung cancer treatment is getting personal. As researchers discover more information about how lung cancer develops, they are finding genetic abnormalities that can be targets for newer types of drugs. These genetic abnormalities are leading the way for personalized treatment of lung cancer, with treatment selected according to the specific characteristics of an individual tumor. Personalized treatment is also referred to as precision treatment.

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Side effects of treatment can be alleviated. Treatments for lung cancer may cause side effects, but many ways to manage side effects now exist. Talk to your doctors about the potential side

effects of your treatment options and ask about ways to prevent these side effects.

During treatment, tell your doctor or other member of your health care team about symptoms you have so that they can be managed before they become severe.

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You can take control. A diagnosis of lung cancer is overwhelming, and it’s easy to feel as if your life is out of control.

But you have the power to overcome many challenges of lung cancer. Don’t be afraid to ask your doctor about treatment options and to state your preferences.

Take good care of yourself by getting proper nutrition, exercise and sleep. Do whatever it takes to help you heal and feel physically and emotionally healthy, whether it’s meditation, yoga, relaxation techniques, spirituality or counseling.

Spend time with family and friends and be specific about what you need – and don’t need – from them. Enjoy your favorite activities. Live every day to its fullest.

3

Methods for Diagnosing and Staging Lung Cancer

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Several tests are available to help your doctors learn more about your lung cancer.

These tests have two important purposes.

First, they provide details that help your doctors make a specific diagnosis about the type of lung cancer you have. Second, the tests offer information that helps with assigning a stage to the lung cancer. An accurate diagnosis and stage are essential for determining the best treatment options, which may spare you from treatment unlikely to be effective.

You may not need to have every diagnos-

tic imaging study. Your doctors will consider the results of your physical examination and your general health status in deciding which tests will provide the most useful information.

Learn how these tests are done and what you can expect (Table 1), and ask your doctor any additional questions you may have.

Diagnostic imaging studies Imaging studies are primarily used to help define the size, shape and location of the tumor. They are also useful in assessing other

Table 1. Diagnostic and staging procedures: What to expect Imaging study or procedure

How it’s done

Standard chest X-ray

A chest X-ray is usually taken with the person standing against a plate on which the images are recorded. You must keep still and hold your breath for a few seconds when the X-ray picture is taken.

Computerized tomography (CT)

A CT scanner takes many pictures of organs as the table on which you’re lying moves slowly through the scanner. You will need to lie very still while the images are being made. A contrast material (also referred to as dye) may be injected into a vein in your arm or given to you by mouth before the test to enhance the quality of the images. This contrast material may cause you to feel a brief sense of warmth or flushing in your body; this feeling is normal. If you are to receive contrast material, your doctor will order a blood test to check your kidney function to prevent possible kidney problems related to the contrast material. CT scans can be taken of portions of your body, such as your chest, abdomen or pelvis. When combined with PET scans, the entire body is usually scanned.

Positron emission tomography (PET)

A small amount of a radioactive glucose (sugar) is injected into a vein. Lung cancer cells use a high amount of energy and will absorb greater amounts of the radioactive sugar than normal tissue cells do. A special camera detects any increased amounts of radioactive sugar and provides an image of the tumor or an area of metastasis.

Magnetic resonance imaging (MRI)

Images are produced through radio waves and a powerful magnet linked to a computer.

Although MRI is painless, you will need to lie still on a table within the tube of the MRI machine, which makes loud, repetitive clicking noises. Tell your doctor if you are uncomfortable in enclosed spaces so that steps can be taken to manage your anxiety.

Contrast material may be used to enhance the images. Although any part of the body can be scanned, the brain is the most common site scanned to stage lung cancer.

Bone scan

A small amount of a low-level radioactive substance is injected into a vein in your arm.

This radioactive substance collects in areas of metastatic disease in bone. You will then lie on a table (for about 30 minutes), and a special camera will record images of areas with an increased amount of the radioactive substance. Most of the substance will be eliminated from your body within one day and will be completely gone within two days.

Bronchoscopy

A thin, tube-like instrument (bronchoscope) is inserted through the nose or mouth into the windpipe (trachea) and lungs. The bronchoscope has a light and lens that enable the doctor to examine the inside of the trachea, air passages (bronchi) and lungs. Tiny tools can also be inserted through the bronchoscope to obtain samples for pathologic evaluation. You will be lightly sedated to keep you comfortable during the procedure.

Endobronchial ultrasound

A bronchoscope is inserted, and a small, special ultrasound probe is passed through the bronchoscope. The ultrasound gives off sound waves, which provide images of the lungs and mediastinal area. Tiny tools can also be inserted through the bronchoscope to obtain samples for pathologic evaluation. You will be lightly sedated or given general anesthesia to keep you comfortable during the procedure.

Mediastinoscopy

4

A very small incision is made just above the breastbone, and a thin tube (mediastinoscope) is inserted into the incision. A tiny camera on the tube sends pictures of the mediastinal area and lungs to a video screen that the doctor can see. The video images can also help your doctor obtain samples from any areas that look abnormal. General anesthesia is usually given to keep you asleep and without pain during the procedure.

parts of the body to see if the cancer has metastasized, or spread beyond the lung, which aids in defining the stage of disease.

Chest X-ray Standard chest X-rays are often the initial type of imaging study done because of their convenience and low cost. A chest X-ray is usually the first imaging study to show an area on the lung suspected to be cancer.

Computerized tomography (CT) CT scans produce three-dimensional, crosssectional X-ray images, so they can provide more precise details than a standard X-ray.

CT scans provide an excellent assessment of the size of lymph nodes, but the size does not always indicate whether or not the nodes are involved with cancer. Because of this, other studies may be done to evaluate the lymph nodes.

Positron emission tomography (PET) PET images are not as finely detailed as CT images, but they can provide helpful information, especially if you have early-stage lung cancer, because the scan may show that the cancer has spread to other sites. PET scans are particularly useful if your doctor thinks cancer may have spread beyond the lung but does not know where. PET scans are also helpful in distinguishing cancerous lesions from benign (noncancerous) lesions. PET scans are not helpful, however, for finding metastasis to the brain; rather, magnetic resonance imaging (MRI) of the brain is done to determine whether cancer has spread to the brain.

CT/PET In diagnosing lung cancer, PET scans are most often used in combination with a CT scan, with the two tests done in the same testing session. The use of both tests provides a more complete picture for the radiologist, who can compare areas of higher radioactivity on the PET scan with the detailed appearance of the same area on the CT scan.

Magnetic resonance imaging (MRI) MRI may also be done to look for metastasis in other parts of the body and is most valuable for detecting metastasis in the brain or spinal cord. A brain MRI is commonly done in the initial staging of lung cancer.

Pa t i e n t Re s o u r ce .co m

Bone scan A bone scan helps determine whether lung cancer has spread to bone. A bone scan is often not needed because PET scans, which are more commonly used for people with lung cancer, can also show if cancer has spread to bone. A bone scan is usually done only if a person has signs and symptoms of metastasis.

Staging procedures Staging procedures allow the doctor to view the lungs and/or surrounding area directly and to obtain a biopsy sample from the tumor and/or nearby lymph nodes or other tissue.

Bronchoscopy A bronchoscopy allows your doctor to look inside the lungs and the large airways in the lungs (bronchi) for abnormal areas. Tiny tools can be inserted into the bronchoscope to obtain samples of tissue or fluid.

Endobronchial ultrasound Endobronchial ultrasound is a newer technique that offers a way to examine the area of the chest between the lungs and the heart (mediastinum) without the need for incisions, as it is done using a bronchoscope.

The images provided by the ultrasound instrument help guide the doctor in removing samples for evaluation. This procedure also allows the doctor to get tissue from the mediastinal lymph nodes to see if cancer has spread there. The tissue samples removed with this technique are smaller, however, and this can be a problem. Your doctor will need enough tissue to test for genetic abnormalities, which may be important for selecting appropriate treatment.

Mediastinoscopy Mediastinoscopy is considered to be the best method for evaluating lymph nodes in the mediastinum but requires general anesthesia

so is usually performed only in patients with early-stage disease. The doctor can remove lymph nodes through small cuts made just above the breastbone or on the left side of the chest next to the breastbone. It’s necessary to evaluate the mediastinal lymph nodes when they appear enlarged on CT scans or have high areas of radioactivity on a PET scan.

This evaluation – called mediastinal staging – is important because a small tumor may appear to be early-stage disease, but if the mediastinal lymph nodes contain cancer cells, the cancer is actually a later stage, which means the treatment approach should be different.

Talk to your doctors about whether a mediastinoscopy or endobronchial ultrasound is the best procedure for you.

Evaluation of tissue samples Samples of tissue obtained during these procedures are examined by a pathologist to see if cancer cells are present and, if so, to determine the type of cancer. The pathologist will also record the size and location of the tumor, the number of lymph nodes with cancer cells and other important facts about the cancer. In some instances, the pathologist may not be able to identify the type because

Table 2. Genetic abnormalities in non-small cell lung cancer Genetic abnormality

Most commonly found

Type of non-small cell lung cancer

Advisability of testing

EGFR mutation

• • • •

All types, but most often in adenocarcinoma and rarely in squamous cell carcinoma

Recommended

Women People who never smoked People of Asian descent Light smokers

Testing for genetic abnormalities As researchers learn more about the biology of lung cancer, they have discovered three genetic abnormalities that may affect how non-small cell lung cancers grow and, perhaps more importantly, how they respond to some types of treatment. These three abnormalities are mutually exclusive; that is, none is found with another in the same tumor.

The genetic abnormalities differ according to the types of people and lung cancers in which they are most often found (Table 2).

Determining whether any of these three genetic abnormalities is present has become an important part of diagnosing non-small cell lung cancer, especially among people with advanced disease, as treatment options may differ depending on their presence or absence. Talk to your doctor about whether your tumor specimen should be tested for genetic abnormalities, which is also known as molecular testing.

ADDITIONAL RESOURCES American Cancer Society: www.cancer.org American College of Chest Physicians: www.chestnet.org Living with Lung Cancer American Society of Clinical Oncology (patient website): www.cancer.net International Association for the Study of Lung Cancer: www.iaslc.org

EML4-ALK fusion gene

• Younger people • People who never smoked or light smokers

Adenocarcinoma

Recommended

KRAS mutation

• Current or former smokers

All types, but most often in adenocarcinoma and less often in squamous cell carcinoma

Increasingly being done in many medical centers; may help to select patients who do not require further testing

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the tissue sample is too small. When this happens, another biopsy may be necessary.

The pathologic evaluation of biopsy samples offers the most valuable information for the diagnosing and staging of lung cancer.

Lung Cancer Online Foundation: www.lungcanceronline.org Tests and Procedures National Cancer Institute: www.cancer.gov Non-Small Cell Lung Cancer Treatment (PDQ®) Patient Resource: www.PatientResource.com

5

Understanding Your Pathology Report

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Your pathology report is an important document that provides information about the characteristics of your lung cancer. The pathology report serves as a guide for your oncologist and other members of your team to plan the treatment most likely to be effective for your particular lung cancer.

Pathology reports may look different at different cancer centers and hospitals, but most include the same information. The details and unfamiliar terms may seem overwhelming at first, but once you learn what the words mean, you’ll be more informed about your diagnosis and better able to discuss your diagnosis and treatment options with your doctor.

Your diagnosis of lung cancer is based on the careful examination of tissue taken during the biopsy of a suspected tumor or of the entire tumor after definitive surgery (removal of the tumor with or without lymph nodes). A pathology report is prepared by a pathologist after he or she has examined the specimen with and without a microscope, recording its size, describing its location and appearance and performing special testing (Table 1).

Testing the tumor sample for genetic abnormalities, also known as molecular testing, is now done in many medical facilities, and the results of this testing have become more common on pathology reports. The results of mo-

Questions you may want to ask your doctor • • • • •

May I have a copy of my pathology report?

What is the exact type of cancer I have?

What is the stage of cancer and what does that mean in my case?

Has the cancer spread to my lymph nodes or other organs?

Would testing for genetic abnormalities be helpful?

• Will I need more tests before we decide which treatment to use?

• What is my prognosis?

lecular testing are important because they can help guide treatment decisions.

The pathologist’s final diagnosis is based on all the findings of the examination. Diagnosing lung cancer and identifying all of the characteristics of the tumor are challenging tasks and require the expertise of physician specialists. If the pathologist cannot determine the histologic type for any reason – for example, if the tumor sample is too small or the cancer is poorly differentiated (the cells look very different from normal cells) – an expert pathologist and special studies may be required—or another biopsy. The accuracy of testing and interpretation of results is essential, and seeking a second opinion from another pathologist with extensive ex-

pertise in interpreting lung cancers can be of benefit, especially if there was difficulty or controversy in interpreting the findings. Be sure to seek the opinion of another pathologist if the pathology report does not contain a definite diagnosis, if you have a rare type of cancer or if the cancer has already spread.

Another pathologist’s interpretation can confirm your diagnosis or may suggest an alternative diagnosis.

The pathology report also includes the stage of the lung cancer. Learn more about how lung cancer is staged on page 7.

Table 1. Important components of a lung cancer pathology report Descriptor

What is described or measured

What finding means

Size

Length (in longest direction) and width of the tumor

Prognosis is likely to be better for smaller tumors; size is a primary factor in staging (see page 7).

Location

The lung (right or left) and lobe in which the tumor is found

Histology

The histologic type – squamous cell carcinoma, adenocarcinoma, large cell carcinoma or small cell carcinoma; subtypes of each are also noted

Treatments and prognosis vary according to histologic type.

Histologic grade

How much the tumor cells look like normal lung cells; reported as well-differentiated (G1; cells look mostly similar to normal cells), moderately differentiated (G2), poorly differentiated (G3; cells look very different from normal cells) or undifferentiated (G4)

The more the cancer cells look like normal cells (lower grade), the better the prognosis; the higher the grade, the more aggressive the tumor.

Surgical margins

Presence or absence of cancer cells in the normal tissue at the edges of the tumor

Additional surgery or radiation may be needed if the margins are close or positive.

Extent of invasion

The structures affected by the tumor

Extent of invasion is a factor in staging and a consideration when selecting treatment, including determining whether a tumor is operable (can be removed safely with an operation).

Lymph node status

Presence (positive) or absence (negative) of cancer cells in the nearby lymph nodes

Negative lymph node status is generally associated with less extensive cancer and a better prognosis; lymph node status is another primary factor in staging (see page 7).

Molecular testing*

Presence or absence of genetic abnormalities: EGFR mutation, KRAS mutation or EML4-ALK fusion gene

Tumors with the EGFR mutation are more likely to respond to targeted therapy with an EGFR inhibitor, whereas tumors with the KRAS mutation are more likely to be resistant to an EGFR inhibitor; tumors with the EML4-ALK fusion gene are likely to respond to an ALK inhibitor.

*Molecular testing is now done more frequently before initial chemotherapy is given. Talk to your doctor about whether this testing should be done.

6

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Staging Lung Cancer

A

As with all cancers, identifying the stage of lung cancer is necessary to determine the prognosis (outcome) and to plan treatment.

Lung cancer is usually staged twice. First, your doctor will evaluate the results of your physical exam and imaging tests and assign a “clinical stage.” Then, after a staging procedure or surgery is done, a pathologist will examine tissue taken from the tumor and nearby lymph nodes and assign a “pathologic stage,” which provides more details about the cancer. The pathologic stage provides more details and is more accurate, so it’s key to selecting the best treatment options and predicting the prognosis.

Lung cancer is classified according to the tumor, node, metastasis (TNM) system developed by the American Joint Committee on Cancer (AJCC) and the International Union Against Cancer (UICC). This system is based on data from around the world collected by the International Association for the Study of Lung Cancer (IASLC). Oncologists who evaluate the results of imaging studies and pathologists who examine lung tissue obtained by biopsy or surgery categorize the tumor according to its size and location (T), whether cancer cells are found in nearby lymph nodes (N) and whether cancer has spread to other parts of the body, known as metastasis (M). Once a lung cancer has been classified with the TNM system, an overall stage is assigned.

The TNM classification and staging system for lung cancer was updated in 2010, and both non-small cell and small cell lung cancers are staged according to the updated system (Tables 1 and 2). Talk with your

Table 1: Stages of lung cancer Stage

TNM classifications

Stage 0

Tis

Stage IA

T1 (T1a or T1b), N0, M0

Stage IB

T2a, N0, M0

Stage IIA

T1 (T1a or T1b), N1, M0 T2a, N1, M0 T2b, N0, M0

doctor to make sure that your lung cancer is staged according to the updated system, as it can provide a more accurate prediction of outcome. In addition, the treatment options available to you may be different with the updated staging system.

Some doctors still define the stage of small cell cancer as either “limited-stage” or “extensive-stage.” With limited-stage small cell lung cancer, cancer is found in only one

lung and may also be found in lymph nodes in the chest and above the clavicle (collarbone) on either side. With extensive-stage small cell lung cancer, cancer has spread to the other lung, to distant lymph nodes or to distant organs. Treatment is often selected according to these two stages, although the TNM classification provides more detailed information about the predicted outcome and is therefore a greater factor in decision-making.

Table 2: TNM classification of lung cancer Classification

Definition

Tumor (T) Tx

Primary tumor cannot be assessed OR there is evidence of cancer according to laboratory studies but no tumor seen on imaging studies or with bronchoscopy

T0

No evidence of primary tumor

Tis

Carcinoma in situ (in place)

T1

Tumor is 3 centimeters (approximately 1 inch) or smaller in greatest dimension, surrounded by lung or visceral pleura (lining covering the outside of the lung), with no evidence of tumor in the main bronchus (airway) (See Figure 1, page 8) Tumor is 2 cm (approximately 3/4 inch) or less in greatest dimension Tumor is more than 2 cm in greatest dimension but not more than 3 cm in greatest dimension

T1a T1b T2

T2a T2b

Tumor is more than 3 cm but not more than 7 cm (approximately 2-3/4 inches); or tumor has any of the following features: • Cancer has invaded the main bronchus, 2 cm or more away from the carina (the ridge at the lower end of the trachea) (see Figure 2, page 8) • Cancer has invaded the visceral pleura • Associated with atelectasis (collapse of part of the lung) or obstructive pneumonitis (inflammation of lung tissue) that extends to the hilar region but does not involve the entire lung Tumor is more than 3 cm but not more than 5 cm (approximately 2 inches) in greatest dimension Tumor is more than 5 cm but not more than 7 cm in greatest dimension

T3

Tumor is more than 7 cm, or directly invades any of the following: chest wall, diaphragm, phrenic nerve, mediastinal pleura, parietal pericardium; or the tumor is in the main bronchus less than 2 cm away from the carina but has not invaded the carina; or associated atelectasis or obstructive pneumonitis of the entire lung or separate tumor nodule(s) in the same lobe as the primary (see Figure 3, page 8)

T4

Tumor of any size has invaded any of the following: mediastinum, heart, great vessels, trachea, recurrent laryngeal nerve, esophagus, vertebral body, carina; OR presence of separate tumor nodule(s) in a different lobe of the lung with the primary tumor (see Figure 4, page 8)

Nodes (N) Nx

Regional lymph nodes cannot be assessed

N0

Cancer has not spread to regional lymph node

N1

Cancer cells are found in the peribronchial and/or hilar lymph nodes and intrapulmonary nodes on the same side as the lung with the primary tumor (see Figure 5, page 9)

N2

Cancer cells are found in the mediastinal and/or subcarinal lymph nodes on the same side as the lung with the primary tumor (see Figure 6, page 9) Cancer cells are found in the mediastinal or hilar lymph nodes on the opposite side as the lung with the primary tumor; or cancer cells are found in the scalene or supraclavicular lymph node(s) on the same or opposite side as the lung with the primary tumor (see Figure 7, page 9)

Stage IIB

T2b, N1, M0 T3, N0, M0

N3

Stage IIIA

T1 (T1a or T1b), N2, M0 T2 (T2a or T2b), N2, M0 T3, N1 or N2, M0 T4, N0 or N1, M0

Metastasis (M) M0

No distant metastasis

Stage IIIB

T4, N2, M0 Any T, N3, M0

M1 M1a

Stage IVA

Any T, any N, M1a

Stage IVB

Any T, any N, M1b

Distant metastasis A separate tumor nodule(s) is found in a lobe of the lung on the opposite side from the lung with the primary tumor; tumor has pleural nodules or malignant pleural or pericardial effusion (see Figure 8, page 9) Cancer has spread to distant sites in the body (see Figure 9, page 9)

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M1b

7

Stages of Lung Cancer Figure 1. Lung cancer tumors classified as T1a or T1b. The stage assigned to a T1a or a T1b lung cancer depends on how many lymph nodes are involved and/or whether disease has metastasized (see Table 1, page 7).

Figure 3. /XQJ FDQFHU WXPRUV FODVVLILHG DV 7 7KH VWDJH DVVLJQHG WR D 7 OXQJ FDQFHU GHSHQGV RQ KRZ PDQ\ O\PSK QRGHV DUH LQYROYHG and/or whether disease has metastasized (see Table 1, page 7).

T1b

T1a

T3

7XPRU ” FP

7XPRU ! FP ” FP

Chest wall invasion

Tumor > 7 cm

Invasion of parietal pleura over the mediastinum

Phrenic nerve or parietal pericardium invasion

Additional tumor nodule(s) in the lobe of the primary tumor

Diaphragmatic invasion Tumor in the main bronchus OHVV WKDQ FP IURP WKH carina (without involvement of the carina) and/or associated atelectasis or obstructive pneumonitis of the entire lung

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T2a

T2b Figure 4. Lung cancer tumors classified as T4. The stage assigned to a T4 tumor depends on how many lymph nodes are involved and/or whether disease has metastasized (see Table 1, page 7).

7XPRU ! FP ” FP 7XPRU ” FP invasion of the visceral pleura

Tumor invades trachea and/or SVC or other great vessel

Tumor involves main bronchus, FP RU more from the carina

Associate atelectasis or obstructive pneumonitis that extends to the hilar region but does not involve the entire lung

8

T4 Tumor invades aorta and/or recurrent laryngeal nerve Tumor accompanied by tumor nodules in a different lobe on same side

Tumor involves carina

7XPRU ! FP ” FP ZLWK RU without other 7 GHVFULSWRUV

Tumor invades adjacent vertebral body

Tumor invades esophagus, mediastinum and/or heart

Pa t i e n t Re s o u r ce .co m

Stages of Lung Cancer Figure 5. Lung cancer tumors classified as N0 or N1. See Table 2 on page 7 for descriptions of lymph node involvement.

N0

Figure 8. Lung cancer tumors classified as M1a. See Table 2 on page 7 for a description.

N1

M1a

Contralateral pulmonary nodule(s)

Primary tumor

Primary tumor Figure 6. Lung cancer tumors classified as N2. See Table 2 on page 7 for descriptions of lymph node involvement.

Malignant pleural effusion/nodule(s)

N2

Malignant pericardial effusion/nodule(s)

Figure 9. Lung cancer tumors classified as M1b. See Table 2 on page 7 for a description.

M1b Distant metastases:

Primary tumor

Brain Distant nodal metastases (those beyond the regional nodes)

Figure 7. Lung cancer tumors classified as N3. See Table 2 on page 7 for descriptions of lymph node involvement.

N3

Bone Primary tumor

Liver

Adrenal

Primary tumor Reprinted courtesy of the International Association for the Study of Lung Cancer and with permission of Aletta Frazier, MD. Copyright Š2009, 2010 Aletta Ann Frazier, MD.

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9

Types of Treatment for Lung Cancer

M

Many options exist to treat lung cancer, and in the pages that follow, you’ll find more information on treatment options according to specific stages of disease. Each type of treatment is associated with side effects, but advances have made it possible to control these effects to help keep you comfortable (see page 16).

Surgery, radiation therapy, chemotherapy and targeted therapy are all options for treating lung cancer. Surgery and radiation are considered local therapies, and chemotherapy and targeted therapy are considered systemic treatments because the drugs travel throughout the body through the bloodstream. These four types of treatment are most often used in some combination, an approach called combined-modality or multimodality therapy. A specific treatment plan is selected according to several

Table 1. Types of surgery for lung cancer Type of surgery

Description

Wedge/segmental resection

Removal of the tumor and some of the normal tissue around it (if a slightly larger amount of normal tissue is taken, it’s called a segmental resection)

Lobectomy

Removal of a whole lobe (section) of a lung

Pneumonectomy

Removal of one whole lung

Sleeve resection

Removal of part of the bronchus (the main airway) or part of the pulmonary artery (artery to the lung), along with a lobe in order to save other portions of the lung

factors, such as the type of lung cancer, the stage of disease, the location of the tumor and the person’s overall lung function and general health. In addition, recent studies have shown that identifying the presence of specific genetic abnormalities in the tumor tissue is an important factor in selecting an effective systemic treatment approach.

Treatment given with a goal of curing

Treatment-related words to know Term

Definition

Adjuvant therapy

Treatment given after the primary therapy, to help prevent recurrence (usually chemotherapy after surgery).

Chemoradiation therapy

The use of both chemotherapy and radiation therapy. Chemoradiation therapy is described as either concurrent – when both treatment modalities are given during the same time period – or as sequential (when one modality is given after the other).

Combined-modality treatment

The use of more than one type of treatment in the overall treatment plan (that is, surgery, radiation therapy and/or chemotherapy); also known as multimodality treatment.

Curative intent

Treatment given with a goal of curing the disease.

Doublet

A chemotherapy regimen consisting of two drugs.

First-line therapy

The initial treatment given; if the cancer does not respond, a different treatment regimen or second-line therapy can be tried. Third-line therapy may be given if second-line therapy fails.

Inoperable

Unable to treat with surgery, either because of the stage or location of the disease or a person’s health status; also known as unresectable.

Local therapy

Treatment directed at the site of the tumor; surgery and radiation therapy are local therapies.

Maintenance therapy

Treatment given after the end of standard chemotherapy to help prevent disease from progressing.

Margin (surgical)

The edge of the specimen removed during surgery. If the pathologist finds cancer cells in the margin (known as a positive margin), additional treatment may be needed.

Neoadjuvant therapy

Treatment given before the primary therapy to help shrink the tumor (usually chemotherapy before surgery).

Primary therapy

The initial treatment given with the intention to cure or prolong life.

Resection

Surgical removal.

Surgical candidate

A person healthy enough to have surgery. If a person has poor lung and/or heart function or other medical conditions, he or she may not be a candidate for lung cancer surgery, and other treatment options must be used.

Systemic therapy

Treatment with chemotherapy or targeted therapy; the drugs travel throughout the body via the bloodstream.

10

lung cancer is known as treatment with “curative intent,” and treatment given primarily to relieve symptoms is known as “palliative treatment.”

Surgery Surgery is typically the treatment of choice when the cancer is diagnosed at a very early stage. About one in every three or four nonsmall cell lung cancers is diagnosed at an early stage, but fewer small cell lung cancers are diagnosed early. Some tumors are considered to be inoperable because they are near vital structures, and some people are not surgical candidates because of poor general health or decreased lung and/or heart function. Ideally, the decision about whether a lung cancer tumor can be surgically removed should be made by a board-certified thoracic surgeon experienced with lung cancer surgery. When surgery is appropriate, the surgical removal of the tumor is preferred over any other means of destroying the tumor, such as radiofrequency ablation, cryotherapy or stereotactic radiation.

Four types of operations are typically used, and the type chosen depends on how much of the lung is affected by cancer (Table 1). Surgeons may make a large cut in the chest to remove the tumor; this operation is called a standard thoracotomy. The tumor can also be removed in an operation in which the surgeon makes a small incision, which preserves muscles and/or nerves in the area.

Another technique, called a video-assisted thoracoscopic surgery (VATS), uses several small incisions through which the surgeon will insert small instruments to remove the lobe (or segment) of the lung.

During a VATS procedure, the surgeon does not need to spread the ribs as in the other surgical approaches. VATS is a newer technique and associated with shorter hospital stays and fewer complications, but this approach cannot be used when the tumor is large or is in a central location.

Robotic surgery is also being performed Pa t i e n t Re s o u r ce .co m

for lung cancer at selected centers. With this type of surgery, the surgeon uses several small incisions and special instruments that bend and rotate much more than the human wrist; the surgeon also uses special equipment that allows a three-dimensional view inside the body. This operation requires special expertise by the surgeon; ask your doctor how many of these procedures he or she has done.

During any of these operations, the surgeon will also remove lymph nodes or take tissue samples from the lymph nodes to see if cancer has spread to them. You will receive general anesthesia for these operations so that you are asleep and not able to feel pain during the surgery.

Radiation therapy Radiation therapy is the use of high-energy X-rays to kill cancer cells or keep them from growing. Newer radiation techniques are now more effective than previous techniques and are being considered as an initial therapy for small tumors in people who are poor surgical candidates.

The type of radiation therapy used most often is external-beam radiation therapy, which is delivered from a machine outside of the body. Stereotactic body radiation therapy (SBRT) is an advanced method of delivering radiation and uses 3-D computer imaging to deliver high doses of radiation through many small radiation beams highly focused on precise areas. This technique is used more frequently for small tumors in people with poor health. Another technique is intensity-modulated radiation therapy (IMRT), where the intensity of the radiation delivered to the chest area is varied and targets the tumor more exactly.

Radiation may be used in several different ways: • As primary treatment for early-stage lung cancer that is inoperable • As treatment after surgery (adjuvant therapy) or before surgery (neoadjuvant therapy), with or without chemotherapy • As palliative therapy, to relieve symptoms associated with incurable lung cancer • To treat lung cancer that has metastasized (spread) to the brain (see page 15) A radiation oncologist will oversee your radiation therapy. Before you begin treatment, he or she will carefully plan your radiation therapy to calculate the appropriate dose and determine the optimum treatment schedule. Treatment schedules vary according to the type and stage of lung cancer and the method of delivering radiation. Standard external-beam radiation therapy is delivered in daily doses, five days a week, and may be PatientResou rce .co m

given for six to seven weeks if treatment is with curative intent. With SBRT, higher doses of radiation are given in just a few days.

Each radiation treatment session typically lasts 30 minutes or less and is painless. Radiation therapy for lung cancer will not make you radioactive.

Palliative radiation therapy directed at areas related to symptoms (such as bone) can be delivered with far fewer treatments (one to 10).

Chemotherapy Chemotherapy is the use of strong drugs to stop the growth of cancer, either by killing cancer cells or by preventing them from dividing and growing. Chemotherapy is sometimes referred to as conventional chemotherapy to distinguish it from targeted therapy, which also involves the use of drugs that travel throughout the body.

Chemotherapy is the primary treatment for all stages of small cell lung cancer unless a person’s body cannot tolerate the drugs because of other medical conditions. Chemotherapy is also an option for all stages of non-small cell lung cancer except for Stage I. When used to treat non-small cell lung cancer, chemotherapy may be given after local therapy, such as surgery, to help prevent the cancer from recurring (growing back).

Table 2. Chemotherapy drugs used for small cell and non-small cell lung cancer Generic name

Brand name

carboplatin

(no brand name)

cisplatin

(no brand name)

docetaxel*

Taxotere

etoposide†

VePesid, VP-16, Etopophos

gemcitabine*

Gemzar

ifosfamide

Ifex

irinotecan

†

Camptosar

mitomycin

Mutamycin

paclitaxel*

Taxol

paclitaxel, albumin-bound*

Abraxane

pemetrexed*

Alimta

topotecan†

Hycamtin

vinblastine

Velban

vinorelbine*

Navelbine

*Approved for use in combination with either cisplatin or carboplatin for non-small cell lung cancer.

Pemetrexed is approved only for non-small cell lung cancers other than squamous cell carcinoma. †

Used most often alone or with a platinum drug for small cell lung cancer.

This form of treatment is known as adjuvant chemotherapy. Chemotherapy may also be given to help shrink the tumor to make it easier to remove surgically or to treat with radiation. This treatment is known as neoadjuvant (or preoperative) chemotherapy.

Chemotherapy may also be given in combination with radiation at the same time— referred to as concurrent chemoradiation therapy. Lastly, chemotherapy may be used as maintenance therapy for non-small cell lung cancer, which is treatment given after the end of standard chemotherapy to help delay the progression of cancer.

Many chemotherapy drugs are available (Table 2), and the choice primarily depends on the type of cancer. For example, some drugs (such as pemetrexed [Alimta]) have been found to be less effective for squamous cell carcinoma than for the other subtypes of non-small cell lung cancer. The choice of drug also depends on how it’s being used (for adjuvant treatment, for advanced disease or with radiation therapy) and how the benefits compare with the risks.

For first-line (initial) chemotherapy, the preference is to use a two-drug regimen, referred to as a doublet, with one of the drugs being a platinum drug (cisplatin or carboplatin). If the cancer does not respond to this treatment, or if the cancer progresses, a different drug may be tried. Second-line or third-line therapy is usually a single chemotherapy drug.

Chemotherapy is usually given intravenously (IV) through a vein in your arm, but some drugs may be given by mouth. You may be able to receive IV chemotherapy in your doctor’s office or in an outpatient clinic, and it typically takes 30 to 180 minutes for the chemotherapy to be completely infused.

Chemotherapy is given in cycles, which refers to treatment on specific days over a period of time (usually 21 or 28 days). Sometimes different chemotherapy schedules can be used, and you can discuss the choice of schedule with your treatment team. Treatment most often consists of four to six cycles, and each cycle is followed by a rest period to allow your body to recover from the effects of the drug. Additional drugs to prevent side effects as well as additional fluids are often given intravenously as well. Your treatment team will discuss each of these with you.

Physical exams and imaging studies are repeated after two and four cycles to see if the treatment is working and to make a decision about when to stop or change treatment if it’s no longer effective. When the tumor stops shrinking, the chemotherapy is temporarily stopped. Maintenance therapy with a single drug can then be considered; See TYPES OF TREATMENT, page 12

11

Types of Treatment the chemotherapy drug pemetrexed is an option for maintenance therapy for people with a type of cancer other than squamous cell carcinoma.

continued from page 11

Table 3. Targeted therapy agents used for non-small cell lung cancer Generic (brand) name

How given

Action of the drug

FDA-approved indication

afatinib (Gilotrif)

Orally (tablet)

Inhibits epidermal growth factor receptor (EGFR)

First-line treatment for metastatic nonsmall cell lung cancers that test positively for the EGFR mutation

bevacizumab (Avastin)

Intravenously

Inhibits vascular endothelial growth factor (VEGF), which prevents the formation of blood vessels in the tumor

First-line therapy, in combination with carboplatin and paclitaxel, for unresectable locally advanced, recurrent or metastatic non-small cell lung cancer other than squamous cell carcinoma

cetuximab (Erbitux)

Intravenously

Inhibits EGFR

Approved for use in other types of cancer

crizotinib (Xalkori)

Orally (tablet)

Inhibits ALK, a protein produced by a mutated ALK gene

Metastatic adenocarcinomas that test positively for the EML4-ALK fusion gene

erlotinib (Tarceva)

Orally (tablet)

Inhibits EGFR

Locally advanced or metastatic nonsquamous cell cancer after failure of at least one other prior chemotherapy regimen

Targeted therapy Researchers have learned about the cell pathways that can lead to many types of cancers and have also developed drugs that block those pathways. These drugs are known as targeted drugs, and treatment with these drugs is known as targeted therapy. These drugs block the signals that proteins and other molecules send along signaling pathways, which are systems in the body that direct basic cell functions, such as growth, division and death.

Effective targeted therapy depends on two factors: identifying targets that play an important role in the growth and survival of cancer cells and developing agents that can attack those targets. The use of testing for genetic abnormalities in tumor tissue is helping to advance the use of targeted therapy. Targeted therapy, in combination with chemotherapy, is currently approved for advanced non-small cell lung cancers. As the results of ongoing research are reported, the hope is that the use of targeted therapy can expand to earlier-stage disease, which can help extend survival for more people.

Targeted therapy has not yet been found to be beneficial for the treatment of small cell lung cancer.

One signaling pathway involved in the development of many different kinds of cancer, including non-small cell lung cancer, is directed by the epidermal growth factor receptor (EGFR) protein, which is made by the EGFR gene. Abnormalities (mutations) in this gene activate the EGFR protein, which, in turn, triggers a complex process that leads to increased growth and division of cancer cells and allows the tumor to spread. Targeted therapy drugs have been developed to block the activity of EGFR, and these drugs are known as EGFR inhibitors.

Four EGFR inhibitors have been shown to be effective in clinical trials (see Table 3). It’s important to test the tumor tissue for genetic abnormalities because response to an EGFR inhibitor is more likely if the tumor tests positively for the EGFR mutation and is less likely if the tumor tests positively for other mutations. This testing should be done before starting therapy because these targeted therapy drugs are superior to chemotherapy if the tumor has the EGFR mutation.

Testing is now done for another genetic 12

Maintenance therapy for locally advanced or metastatic non-small cell lung cancer that has not progressed after four cycles of a first-line platinum-based chemotherapy regimen gefitinib (Iressa)

Orally (tablet)

Inhibits EGFR

abnormality, which is a fusion of two genes; this abnormality is known as ALK rearrangement. This abnormal gene produces an abnormal protein that causes cancer cells to grow out of control; stopping this abnormal protein can slow the growth of cancer cells. If testing shows that the ALK rearrangement is present in the tumor, a new drug – crizotinib (Xalkori), known as an ALK inhibitor (Table 3) – may be used.

Another targeted agent used for nonsmall cell lung cancer targets a different pathway, known as the vascular endothelial growth factor (VEGF) pathway, which is involved in the formation of new blood vessels. The targeted agent interferes with signals between VEGF and its receptors, and as a result, no new blood vessels are formed.

Without vessels to bring blood to the tumor, it cannot continue to grow. One VEGF inhibitor, bevacizumab (Avastin), is approved for use in advanced non-small cell lung cancer (Table 3). It’s a monoclonal antibody given through an IV once every three weeks at the same time as chemotherapy and may be continued after chemotherapy is completed.

VEGF inhibitors are also known as antiangiogenic drugs. Unfortunately, no test exists to determine which people are most likely to benefit from a VEGF inhibitor, and

Limited by the FDA to patients currently receiving and benefiting from gefitinib and patients who have previously received and benefited from the drug

this targeted therapy drug cannot be used for everyone. For example, a VEGF inhibitor is not used for people with a squamous cell carcinoma, and the drug has not been found to be effective for small cell lung cancer.

One of the most important problems associated with both chemotherapy and targeted therapy is that cancer cells often become resistant to the drugs, which become less effective over time. Researchers continue to explore ways to overcome resistance, identify new pathways to target and develop new drugs to interrupt the growth of lung cancer cells.

ADDITIONAL RESOURCES American Society of Clinical Oncology (patient website): www.cancer.net International Association for the Study of Lung Cancer: www.iaslc.org Lung Cancer Alliance: www.lungcanceralliance.org New and Emerging Treatments in Lung Cancer National Cancer Institute: www.cancer.gov Drugs Approved for Lung Cancer National Comprehensive Cancer Network: www.nccn.com NCCN Guidelines for Patients: Non-Small Cell Lung Cancer

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patient story

‘Fear Less’ Survivor Lives

at the Top of Her Lungs Jennifer Glass was diagnosed with Stage IIIB non-small cell lung cancer at the age of 49, just four months after she married her husband, Harlan. Her marriage also gave her two stepchildren, 16-year-old Tristan and 6-year-old Eloise. Prior to her diagnosis, Jennifer spent 25 years working as a senior communications executive for Holiday Inn, Intuit, Oracle, Sony, Facebook, Dropbox and MarkLogic, and in her spare time, she enjoys reading, traveling and watching films. Read more of Jennifer’s perspective on lung cancer at www.parade.com/member/jenniferglass.

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I’d always thought of myself as a “top of my lungs” kind of girl, but that’s exactly the part of my body that betrayed me. A tumor had formed at the top of my left lung and had spread to the lymph nodes in my neck and under my clavicle. That led to a Stage IIIB non-small cell lung cancer diagnosis, which my husband and I learned about just four months after our wedding.

You can’t anticipate how you’ll react to something like this, but in my case, I stayed calm. This led friends and family to say to me, “Jennifer, you’re fearless!”

But of course I’m not. None of us is without fear. I do, however, believe that we can find ways to fear less. By taking fear out of the equation, even a little bit, we can think more clearly, make better decisions and – to some small degree – feel like we’re controlling something that’s uncontrollable.

Because I’m relatively young and otherwise in good health, my oncologist planned an intense assault on my cancer. I soon began seven weeks of radiation and simultaneously underwent two rounds of chemotherapy with a combination of the drugs cisplatin and etoposide.

In preparation for radiation, I was given three small tattoos.

This was not nearly as much fun as the last time I got a tattoo – a tequila-soaked night in Hong Kong many years ago – but it was necessary so they could line up the radiation in exactly the same place each time.

Radiation wasn’t so bad. I never felt anything, and it was always over in 15 minutes. Chemo made me cold, but I combated that with a warm blanket and layers. I also sat in a nice reclining chair and had Harlan to talk to—my “chemo-sabe.”

The treatments left me extremely tired, but I easily dealt with the fatigue by taking regular cat naps, often with my actual cat.

The worst of the side effects were the blistering, peeling radiation burns that developed on my throat, neck and collarbone. My veins also became swollen, bruised and sore from the chemo infusions. And then I lost my hair. It was traumatic to feel my hair come away in my hands so easily and to see it form a bird’s nest in the shower drain. So after a few days, Harlan got the buzzer and razor, and I became G.I. Jen. In short, I was bald, burned and bruised, and when I looked in the mirror, I saw “Cancer Girl.”

That was last spring. Now it’s fall, and my hair has started to grow back, my blisters have healed, and my most recent CT scan produced encouraging results. The tumors in my neck have all but disappeared, and the primary tumor in my lung hasn’t grown or

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Jennifer Jennifer’s former company formed Team FearLess for the American Cancer Society’s Relay for Life, raising thousands of dollars and showing up in force to walk around the clock to support her.

Jennifer celebrates with her family – (from left) Tristan, Eloise and Harlan – on her wedding day.

spread to anywhere new.

To keep the cancer contained, my oncologist prescribed a targeted therapy drug. It initially caused mood swings, headaches and body aches, but the most severe side effect was a terrible, painful rash on my face. When I told my oncologist, he told me to immediately stop taking the drug. After my face healed, he prescribed a lower dose, which I’ll continue to take for the foreseeable future in hopes that it will continue to keep my cancer in check.

Because of my cancer, I stepped out of the workforce a few months ago. When it became clear I might only feel well a few hours a day, it was an easy decision to spend those hours with my family instead of in meetings or traffic. And while I truly enjoyed working, I have to say that I enjoy not working even more. I see friends, exercise every day, read entire books, and when I feel tired, I take a nap. All in all, it’s a pretty nice life, except for the part where I have lung cancer.

Cancer is part of my life now, but that doesn’t mean it’s my entire life. It’s sort of like traffic—an unpleasant reality that’s usually manageable but can be hugely disruptive. Some days I just have to accept that it’s a day for the slow lane. Most days, though, I pull on my big girl pants, hit the gas and crank the radio, singing at the top of my lungs.

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Treatment Options by Stage

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Choosing the best treatment plan for lung cancer can be challenging and requires the expertise of a multidisciplinary care team, which works together to determine the best treatment plan for your particular tumor.

Even once a plan has been established, it may change, depending on the results of staging procedures and other test results.

Making decisions about treatment can be confusing because of all the different options and factors that must be considered. Talk openly with the members of your treatment team and ask questions about treatment options.

The options listed here by stage provide basic information about how your cancer may be treated. Many other details are involved in making treatment decisions, and your doctors will discuss these details with you.

Non-small cell lung cancer Stage 0 (carcinoma in situ) Stage 0 cancer is usually treated with surgery (removal of the tumor or a wedge or segmental resection). Additional treatment is not generally needed but careful follow-up is important.

Stage I Surgery is usually the primary treatment for Stage IA or IB disease. Lymph nodes in the mediastinum (between the lungs) must be removed – or a sample must be taken from a node – during the surgery to ensure that the cancer has not spread. Lymph node metastases will determine your prognosis and whether additional treatment is given after surgery. In most cases, no further therapy is given after surgery, but if the risk for recurrence is high (e.g., the tumor is large, usually 4 centimeters [about 1½ inches] or more), chemotherapy after surgery may be offered. It’s difficult, however, to determine who is at highest risk for recurrence, so talk to your doctor about the risks and benefits.

If the pathologist found cancer cells in the surgical margin of the normal tissue removed with the tumor, chemotherapy and/ or radiation therapy may be given to destroy cancer cells that may remain. A second surgery is another option for removing any remaining cancerous tissue.

Radiation therapy can be used to treat disease in people who are not surgical candidates, and stereotactic body radiation therapy (SBRT) is available at many treatment centers for people with small tumors that are not close to vital organs. Standard radiation may be given if SBRT is not possible.

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Stage II Treatment for Stage II cancer depends on the location of the tumor. In general, surgery is the primary treatment. People who are not surgical candidates are often offered radiation therapy with or without chemotherapy.

Chemotherapy after surgery is usually recommended for Stage II disease because it improves overall survival. On rare occasions, chemoradiation or chemotherapy may be given before surgery to shrink a larger tumor so that it’s easier to remove.

Stage IIIB Surgery is not usually an option for Stage IIIB because the disease has spread too far to be completely removed. Therefore, treatment usually consists of concurrent chemoradiation therapy. In some centers, additional chemotherapy is given after radiation has been completed. You may be able to choose a chemotherapy schedule; for example, some chemotherapy regimens may be given weekly, once every three weeks or daily for a week every four weeks.

Stage IIIA Making treatment decisions for Stage IIIA is complex and depends on many factors, including the location of the tumor, what tissues or structures it invades, whether cancer has spread to lymph nodes and, if so, the number and size of the involved lymph nodes. If cancer was not suspected in the lymph nodes but the pathologist detects cancer cells in these nodes after a potentially curative operation, additional treatment after surgery is recommended—usually a combination of chemotherapy and radiation therapy, chemotherapy and surgery, or all three.

Chemoradiation therapy is often the first treatment option. If there are a limited number of lymph nodes showing cancer on the same side as the tumor (designated as N2) – or if the tumor is bulky – then chemotherapy, with or without radiation, can be considered as the first treatment given for Stage IIIA cancer detected before surgery. If the response to treatment is good – that is, the tumor has shrunk and the involved lymph nodes become free of cancer – surgery (removal of part or the entire lung) may be done if the surgeon believes the remaining cancer can be removed entirely; additional chemotherapy may then be given after surgery.

Chemotherapy after surgery has been shown to improve survival for people in whom the cancer was considered Stage I or II before cancer was found in the lymph nodes removed during surgery. If cancer cells are found in the surgical margins or in the removed lymph nodes, concurrent chemoradiation therapy may be given.

If surgery isn’t an option, additional chemotherapy and/or radiation may help to further shrink the tumor and reduce the risk of the cancer coming back. If your doctors don’t suspect your cancer is Stage III at the time of your surgery but find lymph nodes during surgery, you may be given chemotherapy or chemotherapy plus radiation after your surgery.

Stage IV Stage IV (advanced) non-small cell lung cancer has been typically treated with chemotherapy, which cannot cure the cancer but can lengthen survival and improve the quality of life. Studies have shown that if the disease is stable (not growing) after first-line chemotherapy, immediate second-line treatment with a different chemotherapy drug can improve the outcome. Surgery and radiation are used in some instances to eliminate symptoms and improve the quality of life or to prevent further complications.

Targeted therapy now offers an additional option for many people with advanced cancer. In order for it to be used, however, genetic testing must be done on the tumor sample, and the treatment depends on the results: • If the tumor tests positively for the EGFR mutation, two targeted therapy drugs are options: erlotinib (Tarceva) or afatinib (Gilotrif).

• If the tumor tests positively for the EML4-ALK fusion gene, treatment with crizotinib (Xalkori) is recommended.

• If the tumor tests negatively for the EGFR mutation and the EML4-ALK fusion gene, a platinum-based chemotherapy combination is recommended for people healthy enough to tolerate the drugs. Patients not healthy enough may receive a single drug or palliative therapy with radiation therapy, surgery or other supportive measures. If the cancer is a type other than squamous cell carcinoma, bevacizumab (Avastin) added to the platinum-based chemotherapy is an option.

• If a squamous cell carcinoma tests negatively for the EGFR mutation, treatment options are a platinum-based chemotherapy regimen that does not contain pemetrexed (Alimta) because it is inferior to other treatment options and does not contain bevacizumab (Arastin)—and because of the potential for excess side effects.

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• If you have Stage IV lung cancer, talk to your doctor about supportive care. Studies have shown that supportive care not only enhances the quality of life but also extends survival.

Small cell lung cancer Stage I-IIIB Surgery followed by chemotherapy is often given with curative intent for Stage I or IIA disease (although small cell lung cancer is rarely detected at this early stage). Concurrent chemoradiation therapy is typically given with curative intent to people with Stage I or IIA disease but are not surgical candidates or to people who have Stage IIB, IIIA or IIIB disease. If the cancer responds to treatment, radiation therapy to the brain is given to prevent the return of cancer in the brain and to prolong survival.

Stage IV Chemotherapy is the primary treatment for Stage IV disease or for earlier-stage disease that recurs after initial therapy. If the tumor responds to therapy, radiation to the brain is given to prevent the return of cancer in the brain and to prolong survival. Radiation to the brain may also be given after chemotherapy if there is a good response to chemotherapy. Other types of radiation and surgical therapies may be used as palliative treatment to relieve symptoms and to improve quality of life.

Recurrent disease after surgery In some instances, early-stage cancer recurs (comes back). The recurrence may be at a local site in the chest or at a distant site outside the original lung cavity. If cancer recurs in or around the lungs and it is considered resectable, surgery may be done, followed by radiation therapy, with or without chemotherapy. If the recurrence includes lymph nodes in the chest, concurrent chemoradiation therapy is an option. If the recurrence is outside the original lung cavity, the treatment choices are the same as the options for cancer that is Stage IV at the time of diagnosis.

Metastatic disease Two of the most common sites of metastasis from lung cancer are the brain and bone.

Brain metastasis – Chemotherapy may not be effective for cancer that has spread to the brain because of the blood-brain barrier, which is a membrane that protects the brain by preventing substances in the blood, such as drugs, from entering the brain. Therefore, local therapies are often used, and the choice of treatment depends on the number and location of the metastatic tumors. If there is a single metastatic site in the brain, surgery, PatientResou rce .co m

followed by whole-brain radiation, may be done. Another option is stereotactic radiosurgery (also known as stereotactic, Gamma Knife or CyberKnife). This approach is usually used only when no more than three small metastatic tumors are present. Because the radiation is delivered precisely to the metastatic site, side effects are less likely to occur with stereotactic radiosurgery than with whole-brain radiation therapy.

Whole-brain radiation is usually the treatment of choice for people with more than three metastatic brain tumors. Corticosteroids are usually given with the radiation to limit swelling in the brain, and the drug may be discontinued after the treatment effects are over. If a person has had any type of seizure, medications are given to prevent future seizures. If the metastases are small and cause no symptoms, chemotherapy or targeted therapy may be used because enough of the drug may cross the blood-brain barrier to be effective. When brain metastases have been successfully treated, an MRI of the brain is often done as part of follow-up care.

Treatment of brain metastasis requires a discussion with all members of your team, who will talk to you about the benefits and risks of each option to help you decide the best choice for you.

Bone metastasis – The spread of cancer to bone can cause the loss of bone mass. This condition occurs when the bone cells that help rebuild bone don’t get replaced at the same rate as bone cells that naturally break down bone. Bones become thin and full of tiny holes and are more likely to break or cause pain and disability.

Radiation therapy can be used to relieve pain and help prevent or treat fractures, especially if the involved bone is a weightbearing one. Radiation beams are targeted to the area of the metastasis, and relief of symptoms is usually immediate and complete. If you’ve had a fracture or your doctor thinks you’re at a high risk for one, orthopedic surgery may be recommended.

Treatment with a therapy to prevent bone resorption (further bone loss) is a standard option for preventing problems associated with bone metastasis. A bisphosphonate

(e.g., zoledronic acid [Zometa]) is a type of drug that prevents the loss of bone mass. Another drug, denosumab (Xgeva), is a newer option and reduces the bone destruction that occurs with metastasis. Treatment with either of these will help prevent bone fractures and can reduce the need for radiation to alleviate bone pain. These medications are usually given with each cycle of chemotherapy and are sometimes given to maintain bone health in people who no longer need chemotherapy.

Importance of clinical trials Clinical trials are essential for evaluating new treatments that will improve outcomes for people with lung cancer. Clinical trials are safe and conducted under the care of physicians and other research professionals.

They’re sponsored by government agencies, such as the National Cancer Institute, by individual doctors and health care groups, or by the pharmaceutical or biotechnology companies that developed the treatments.

People who volunteer for a clinical trial gain access to new treatments before they’re available to the general public, and they can take an active role in their own health care and help others by participating in medical research.

To find a clinical trial that may be right for you, first ask your treatment team if they can suggest a trial that might benefit you. In addition, a number of government and private groups have listings of clinical trials and information.

• Center for Information and Study on Clinical Research Participation: www.searchclinicaltrials.org • Coalition of Cancer Cooperative Groups: www.cancertrialshelp.com • My Clinical Trial Locator: http://myclinicaltriallocator.com • National Cancer Institute: www.cancer.gov/clinicaltrials • National Institutes of Health: www.clinicaltrials.gov ADDITIONAL RESOURCES American Academy of Orthopaedic Surgeons: www.aaos.org Metastatic Bone Disease American Cancer Society: www.cancer.org Bone Metastasis Overview Lung Cancer Alliance: www.lungcanceralliance.org Understanding Brain Metastases: A Guide for Patient and Caregiver National Comprehensive Cancer Network: www.nccn.com NCCN Guidelines for Patients: Non-Small Cell Lung Cancer Patient Resource: www.PatientResource.com

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Side Effects of Lung Cancer Treatment

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Fears about the side effects of treatment can increase the stress of a lung cancer diagnosis. These fears grow from a belief that the discomfort of side effects cannot be relieved, but it’s now possible to prevent or manage many common side effects of lung cancer treatment. Managing side effects is important because if you feel better, you are more likely to complete your treatment as planned, which offers a greater chance for a good outcome.

The side effects of cancer treatment differ in many ways. First, not all people treated for lung cancer will have the same side effects.

Whether or not you experience a side effect depends on many factors, including your age, your overall health and your specific treatment plan. Second, side effects vary in severity. Some cause minor inconvenience or discomfort, and others may cause more discomfort, pain and/or emotional distress.

Lastly, side effects differ according to the type of treatment you receive (Table 1).

Among the most common or troublesome side effects of lung cancer treatment are shortness of breath (dyspnea), nausea and vomiting, fatigue, low white blood cell count (neutropenia), low red blood cell count (anemia), hair loss (alopecia), dry mouth/ mouth sores, skin rashes and diarrhea.

Many chemotherapy drugs can cause nausea and vomiting, and your doctor will likely prescribe drugs known as antiemetics before you begin treatment to help prevent these side effects. Eating small meals throughout the day (rather than three large meals) and drinking plenty of fluids can also help ease any nausea you might experience. High protein and high-calorie supplements may also help.

A low white blood cell count can increase your risk of infection and can be caused by both chemotherapy and radiation. Your doctor will closely monitor your complete blood count (CBC) and prescribe treatment with

Table 1. Common side effects according to type of lung cancer treatment Type of treatment

Underlying cause of side effects

Possible side effects

Surgery

Damage to tissues; removal of breast(s), lymph nodes

• Pain and weakness in the chest and arm • Dyspnea • Infection

Chemotherapy

Damage to normal cells, primarily the cells lining the digestive tract and mouth; hair follicles; and bloodforming cells in the bone marrow

• Nausea and vomiting • Hair loss (alopecia) • Decrease in the number of red blood cells, white blood cells and platelets, resulting in fatigue, increased risk for infections, and bleeding, respectively • Neuropathy

Radiation therapy

Damage to normal cells, primarily the skin cells in the area being irradiated and the cells lining the digestive tract and mouth

• • • • •

Dry, sore throat Mouth sores Difficulty swallowing Skin sensitivity (redness, dryness, peeling, itchiness) Fatigue

Targeted therapy

Blocking proteins on the surface of cancer cells but also on the surface of other (normal) cells

• • • • •

Acne-like rash Flu-like syndrome Diarrhea/constipation Loss of appetite Fatigue

growth factors – special proteins that can stimulate the production of more white blood cells – if necessary. Fever is also a common sign of infection, so call your health care provider immediately if you develop a fever.

You might also experience a side effect called peripheral neuropathy, which includes feelings of numbness, tingling or weakness in your hands and feet. This is usually a side effect of chemotherapy, and your doctor might refer you to a physical or occupational therapist to help with strengthening exercises.

Avoid snug shoes or socks and extreme temperatures and take part in regular exercise, such as walking, to help with this side effect.

Many other treatment side effects are possible, including a low platelet count (which can cause easy bruising/bleeding), a loss of appetite (anorexia) and dehydration. Talk to your doctor about how likely these side ef-

• • • •

Dry, itchy skin Slow-growing, brittle hair Nausea and vomiting Mouth sores

fects are with your particular treatment.

Some drugs used to treat lung cancer may interact with other drugs or supplements.

These interactions can cause the level of the drugs in your bloodstream to increase or decrease; higher levels may cause more side effects and lower levels may be ineffective against the cancer. Be sure to tell your doctor or another member of your team about all the drugs you take, including over-the-counter medications, herbs and drug supplements.

It’s impossible to predict how each person will be affected by lung cancer treatment, but talking with your treatment team can better prepare you for what may happen. Knowing what to expect and how to help prevent or manage side effects can help you feel in control of your body, improve your quality of life and ensure you have the best chance for treatment to be effective.

ADDITIONAL RESOURCES American Cancer Society: www.cancer.org Fatigue in People with Cancer Seven Ways to Manage Cancer-Related Fatigue Managing Side Effects of Chemotherapy: How Do I Deal with Losing My Hair?

Radiation Therapy Effects: What Can I Do About Hair Loss?

Lung Cancer Online Foundation: www.lungcanceronline.org Symptoms, Side Effects & Complications

Hair Loss or Alopecia

National Cancer Institute: www.cancer.gov Coping with Cancer: Managing Physical Effects

What to Know: ASCO’s Guideline on Preventing Nausea and Vomiting Caused by Cancer Treatment Skin Reactions to Targeted Therapy

Nausea and Vomiting

The Importance of Hydration

Peripheral Neuropathy Caused

by Chemotherapy

CancerCare: www.cancercare.org Dry Mouth

Anemia in People with Cancer

CancerSymptoms.org: www.cancersymptoms.org About Cancer Fatigue

Understanding Chemotherapy: Increased Chance of Bruising, Bleeding and Infection

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American Society of Clinical Oncology (patient website): www.cancer.net Coping with Cancer-Related Fatigue

Cancer and Chemotherapy-Induced Anemia

Managing Chemotherapy Side Effects: Alopecia (Hair Loss) Managing Radiation Therapy Side Effects: What to Do About Hair Loss Nausea and Vomiting (PDQ®) Managing Chemotherapy Side Effects: Anemia Patient Resource: www.PatientResource.com

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Catching Your Breath

Managing Symptoms of Dyspnea

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Dyspnea is a medical term that means difficulty breathing, and it’s a common symptom among lung cancer patients. Nearly 90 percent of people with lung cancer experience dyspnea at some point during their cancer journey.

Lung cancer patients often describe dyspnea as a feeling of breathlessness or being short of breath. They feel like they’re not getting enough air, and in extreme cases, like they’re being suffocated or smothered. This can sometimes lead to anxiety and panic, which can worsen dyspnea and start a cycle difficult to stop.

If left untreated, dyspnea can become serious and even life-threatening, so be sure to keep an open dialogue with your doctor about this condition.

Causes of dyspnea Primary lung cancer can cause dyspnea, as can other types of cancer that have metastasized (spread) to the lungs, certain cancer treatments and conditions unrelated to cancer. Some of the most common causes of dyspnea in people with lung cancer include: • Airway obstruction: The tumor is blocking the airways in the chest or lung(s).

• Blood vessel obstruction: Blood clots and/or tumor cells are blocking a blood vessel in the lung(s).

• Pleural effusion: The tumor is causing excess fluid to accumulate around the lungs.

• Carcinomatous lymphangitis: The tumor has spread through the lymphatics of the lung(s).

• Diaphragmatic paralysis: The tumor has spread and blocked a nerve, causing paralysis of all or part of the diaphragm.

Some of the most common causes of dyspnea related to lung cancer treatments include: • Radiation pneumonitis: Lung damage has been caused by radiation therapy.

• Weakened heart muscle: The heart has become weak from chemotherapy.

• Chest infection: An infection, such as pneumonia, has developed because cancer treatments have increased the patient’s risk for chest infections.

Symptoms of dyspnea The most common symptoms of dyspnea PatientResou rce .co m

include breathing discomfort, an inability to take in enough air, shortness of breath and a feeling of being suffocated, drowned or smothered. Dyspnea can be a serious condition, so it’s important to talk to your doctor immediately if you experience any of these symptoms.

Diagnosing dyspnea If your doctor suspects dyspnea, he or she will likely perform a physical examination and a functional assessment as well as one or more of the following tests: • Chest X-ray: A chest X-ray is a picture of the inside of your chest.

• Computerized tomography (CT) scan: A CT scan uses X-rays to create a three-dimensional picture of the inside of your chest.

• Complete blood count: This blood test measures a variety of things, including the number of red blood cells, white blood cells and platelets; the amount of hemoglobin in the red blood cells; and the percentage of blood made of red blood cells.

• Oxygen saturation test: This procedure tests how much oxygen the red blood cells are carrying.

• Maximum inspiratory pressure (MIP) test: For an MIP test, you breathe through a device to measure your lung pressure.

Treating dyspnea Dyspnea treatment largely depends on what is causing the condition. If a tumor is causing the dyspnea, your doctor may recommend radiation therapy, chemotherapy, hormone therapy, laser therapy or cauterization (burning) to shrink or destroy the tumor. If a blocked airway is causing the dyspnea, your doctor may choose to place a stent in the airway to help hold it open.

And if anemia is causing the dyspnea, your best course of treatment may be a blood transfusion.

Sometimes, dyspnea can be caused by excess fluid. In these cases, procedures to drain the fluid surrounding the lungs (pleural effusion), heart (pericardial effusion) or abdominal cavity (ascites) are likely the best treatment choice. Certain medications, including antibiotics, steroids, bronchodilators, anticoagulants and diuretics, may also help you effectively manage the symptoms

of dyspnea. Talk to your doctor about which treatment option(s) may be right for you.

Managing dyspnea Aside from the medical treatments listed above, various techniques and exercises can help you breathe easier on a daily basis.

These include: • Receiving extra oxygen from a tank or other device • Taking opioid medications to encourage relaxation and reduce anxiety • Performing breathing techniques to help you take in more air • Quitting smoking and/or avoiding smoky places • Opening windows or turning on fans to increase air circulation • Using a humidifier or vaporizer to moisten the air • Drinking a lot of water to help thin mucus and make coughing easier • Performing light exercises to increase the flow of oxygen to your blood • Sleeping with your head propped up on pillows • Practicing relaxation training or meditation to encourage relaxation and reduce anxiety Each of these options may help you maximize the delivery of oxygen to your lungs.

Talk to your doctor before trying something new.

ADDITIONAL RESOURCES American Society of Clinical Oncology (patient website): www.cancer.net Shortness of Breath or Dyspnea National Cancer Institute: www.cancer.gov Cardiopulmonary Syndromes

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Finding Relief from Lung Cancer Pain

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Pain is a leading fear for many people with lung cancer. But cancer doesn’t have to mean pain. You’re entitled to having a doctor totally committed to relieving the pain you may experience as a result of lung cancer and its treatments, and one who also makes sure that any side effects from attempts at pain control are acceptable to you. So, if you don’t already have someone like that on your multidisciplinary health care team, ask for a referral. Improved pain control can lead to improved outcomes, so the more in check you and your doctor can keep your pain, the better your overall outlook.

Causes of cancer pain For many people, pain can come from the lung cancer itself. As a tumor spreads, it can press on an internal organ, bone or joint, creating pressure that leads to pain. A tumor can also cause pain by damaging nearby tissues and nerves as it grows into them, and by producing chemicals that disrupt the balance of that area of the body.

While lung cancer treatments can be beneficial, they can sometimes cause pain as well. For example, if you have surgery to treat your cancer, you may experience pain as your body heals and recovers from the procedure. Chemotherapy and radiation therapy can also cause pain by damaging healthy cells, which can result in painful side effects such as burning sensations, mouth sores, diarrhea, nerve damage and more. You should not avoid these treatments because they may cause pain. Rather, you should keep an open dialogue with your doctor about any pain you experience so it can be controlled.

Types of cancer pain Everyone experiences pain in different

ways, but it’s useful to distinguish among the main types: • Acute pain usually comes from injury or damage to bodily tissues. It comes on as a direct result of a trauma – surgery, for example – so the cause can usually be readily diagnosed. Standard pain medication is often effective.

• Chronic pain, also called persistent pain, lasts long after the bodily injury heals and can be more resistant to medical treatments. It can be very taxing on both your body and your emotional state. However, using the various treatments available today, chronic pain can be effectively managed in the vast majority of people.

• Breakthrough pain includes severe flares of pain that “break through” regular pain medications. Sometimes these flares are related to an event, such as coughing, and sometimes they’re sudden and unpredictable. These outbreaks can be mild to severe and can last for up to an hour a few times a day, but breakthrough pain can still be managed using various techniques.

Management of lung cancer pain The options for managing cancer pain are numerous, and it can be helpful to think of them as tools in a toolbox. Sometimes just one tool can fix the problem, but other times the whole toolbox will be required. In addition, you’ll sometimes need to use tools in a particular sequence, while other times you may need to jump back and forth between tools.

The following descriptions of various pain relief techniques are meant to provide you with a general overview of what’s available.

That way, if your doctor doesn’t mention one or more of them as options for your care,

you’ll be equipped to ask whether they might be right for you.

Pharmacotherapy is the treatment of cancer pain through the administration of medications, including non-opioid, opioid, adjuvant and topical analgesics: • Non-opioid analgesics are often available over-the-counter and include aspirin, ibuprofen (Advil, Motrin), acetaminophen (Tylenol), etc.

• Opioid analgesics require a prescription and help decrease both the perception of pain and the reaction to pain. Codeine, oxycodone and morphine are all examples of opioid analgesics.

• Adjuvant analgesics, including certain antidepressants and anticonvulsants, aren’t primarily designed to control pain, but they can sometimes be used for this purpose, especially in cases where damaged nerve cells result in neuropathic pain.

• Topical analgesics are either sprayed on or rubbed into the skin, directly over the painful area. They can include one or more medications and are often madeto-order by a compounding pharmacy.

Topical analgesics may cause less severe side effects than other analgesics because they’re not ingested.

Percutaneous pain techniques refer to procedures that access inner organs and tissues by puncturing the skin with a needle. They include ablative techniques, nerve blocks, kyphoplasty, vertebroplasty and sacroplasty: • Ablative techniques include various procedures used to turn off nerves that signal pain, thereby providing pain relief.

• Nerve blocks usually involve injecting a pain-killing medication around certain

Keeping Track of Cancer Pain A pain diary is an easy way to track what pain you’re experiencing and what painrelief methods are working, and it will help your medical team modify your care to make you as comfortable as possible.

Use a consistent pain scale, like rating your pain from 0 to 10 (with 0 being no pain and 10 being the worst pain imaginable), and write down answers to questions such as: • What does the pain feel like?

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• • • • • • • •

Is it mild or severe?

Is it constant or does it come and go?

Is it dull or sharp?

When do you feel pain (morning, night, random times)?

Are there specific triggers, like bending or stooping?

How long does the pain usually last?

What helps relieve your pain?

Are you experiencing any side effects from your pain medications?

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nerves that send pain signals to your brain. Nerve blocks can be used on sympathetic, peripheral and cranial nerves.

• Kyphoplasty, vertebroplasty and sacroplasty are all procedures in which bone cement is injected into the spine or sacrum to stabilize the area and relieve pain.

Neurosurgical approaches to pain relief seek to lessen pain at its source—in the neural pathways and processing centers of the spine and brain. Recent medical innovations have opened up many more neurosurgical pain relief options than were available in the past, including electrical stimulation, which can “jam” pain pathways and block pain, as well as intracranial and spinal ablation, which can turn off specific brain and spinal cord fibers that include pain-carrying nerves.

Intrathecal drug delivery, also called a “pain pump,” sends pain medication directly to your spinal cord using a small pump that’s surgically placed in the abdominal wall.

Because the medication goes directly to your spinal cord rather than first traveling through your entire system, it’s effective in much lower doses than oral medications and without the usual side effects.

Palliative oncology, also called supportive oncology, can help mitigate cancer pain through palliative surgery, radiation therapy and chemotherapy. Palliative radiation therapy and chemotherapy can shrink a tumor that is causing pain, or palliative surgery can be done to remove part or all of such a tumor, stabilize the spine and keep organs functioning, thereby reducing pain. Palliative radiation therapy may also relieve pain

caused by bone metastases (the spread of cancer to bone).

Physiatry, or physical medicine and rehabilitation, helps relieve pain through customized therapy programs designed to enhance mobility, overcome disabilities and avoid painful activities when cancer or its treatments have affected how you move and function. Anti-inflammatory injections are also a part of this technique.

Alternative and complimentary strategies include yoga, acupuncture, reflexology, massage therapy, aromatherapy, art therapy, music therapy and animal therapy. While these strategies may not single-handedly solve cancer pain, they do have a role in pain management.

Psycho-behavioral strategies involve activities such as deep relaxation and meditation. They are useful in calming psychological symptoms such as anxiety and depression, which often accompany cancer pain and can get in the way of its treatment.

Keep in mind that there are risks and benefits associated with all types of pain relief techniques, so always review them with your health care team before beginning any type of regimen.

Speak up about cancer pain Lung cancer pain is often undertreated because many patients are reluctant to discuss it. Don’t fall into that category. Ask about pain management right from the start, and continually alert your doctor at the first sign of pain. A pain diary, as discussed in the box below, can help you monitor your pain, know what to report and decide when to call your doctor. Pain relief works best when it’s done proactively rather than reactively, and ideally, pain should be addressed long before it becomes an emergency.

In addition, if you’re having unacceptable side effects from pain medications, such as extreme fatigue, constipation, etc., discuss those issues with your doctor as well. Efforts can be made to employ different strategies to both get you the necessary pain relief and avoid unacceptable side effects. The goal is a satisfactory quality of life.

ADDITIONAL RESOURCES American Chronic Pain Association: www.theacpa.org Cancer Pain Research Consortium: www.facebook.com/ cancerpainresearchconsortium; for questions, you can reach the administrative center of the Consortium at the Center for the Relief of Pain at 816-363-2500 Cancer Support Community: www.cancersupportcommunity.org Pain

PatientResou rce .co m

National Cancer Institute: www.cancer.gov Coping with Cancer: Supportive and Palliative Care (Managing Physical Effects) Pain Control: Support for People with Cancer PainFromCancer.org: www.painfromcancer.org U.S. Pain Foundation: http://uspainfoundation.org

Confronting the myths of pain medication ✖ Myth: If I take narcotics regularly, I may become addicted. ✔ Fact: While people can become tolerant to a pain medication (meaning ever-increasing doses are required to achieve the same effect), it is not the same as addiction. People with cancer who take pain medication as directed by their doctors usually do not become addicted.

✖ Myth: If I start taking pain

medication early on, I will run out of options for pain relief in the future. ✔ Fact: Many pain-relieving medications and procedures are available. There will almost always be options if pain becomes more severe.

✖ Myth: I don’t want to have

unpleasant side effects from pain medications. ✔ Fact: Side effects do occur with some pain medications, but they can be managed and some will decrease or disappear over time.

Unacceptable side effects are a reason to ask your doctor about formulating an alternative plan for pain relief, such as different methods of delivery of pain medications or non-medicationbased treatments.

✖ Myth: Increasing pain means the disease is getting worse.

✔ Fact: Pain and severity of

disease are not necessarily related, but increasing pain should prompt a conversation with your doctor to evaluate the cause and develop a plan for more acceptable pain relief.

✖ Myth: I don’t want to bother

the doctor. Having pain should be expected. ✔ Fact: Although pain is common, your doctor and other members of your treatment team should always be willing to help find ways to control your pain so you can enjoy a better quality of life.

19

Living a Healthy Lifestyle

L

Living a healthy lifestyle during and after lung cancer treatment can help keep you stronger and better able to cope with the disease and treatment. If you’re a smoker, the most important step you can take is to quit smoking (see box). Many people think that it’s useless to quit when they already have lung cancer, but studies have shown that people who quit smoking after a diagnosis of lung cancer have a better response to treatment, an enhanced quality of life and longer survival. Your doctors are ready and eager to help you quit smoking, so talk to them about how they can help.

Be sure to keep your follow-up visits with your oncologists and primary health care provider, eat healthy foods, be as active as you can, get enough rest and stay emotionally healthy. These can all help you feel better both physically and mentally, allowing you to better cope with the day-to-day challenges of living with lung cancer.

Go to your follow-up visits Your oncologist will schedule routine followup visits to track your response to treatment and see if the disease is stable or has progressed. The best way to do this is with CT scans of the chest, which give accurate information about the size of the tumor and the level of response. A recommended followup schedule includes a history and physical examination every four to six months for two years, followed by a yearly visit. This schedule may differ depending on the stage of lung cancer and the type of treatment you had. Keep your appointments so that your doctor can track how well you’re doing and can start treatment again early, if necessary.

You should also see your primary-care provider regularly to check your blood pressure, cholesterol and glucose levels as well as your bone health. Make sure to follow recommended cancer screening schedules for colorectal, prostate, breast and cervical cancer, as appropriate.

Eat a healthy diet It may be a challenge to maintain proper nutrition if you experience side effects such as loss of appetite or nausea. But a healthy diet can help you gain strength, which is especially needed during treatment cycles. In general, be sure to eat a wide variety of healthy foods and drink plenty of liquids. Because some cancer treatments can cause a loss of bone mass, it’s helpful to eat dairy foods and other foods high in calcium. Talk to your doctor about the need for calcium and vitamin D, either in your diet or as supplements.

Be active Physical activity and regular exercise can help you feel better overall. Although it doesn’t seem to make sense, exercise is actually the best treatment for fatigue. Studies have shown that people with cancer who exercise regularly feel less tired and have more energy. Weightbearing activities, such as walking, can help strengthen bones, which is important if you have bone metastasis. Think about what activity you enjoy most and do it daily, as often as you can tolerate it. If you have pain or discomfort with your favorite form of exercise, try doing it differently to avoid pain rather than not doing it at all.

Get enough rest Sleep problems are common among people with cancer. Fatigue related to cancer often leads people to take frequent naps during the day, which then makes it difficult to sleep at night. You can still set aside time for rest or naps, but limit them to 20 to 30 minutes each and avoid napping in the late afternoon or early evening. Your doctor may review your medications and change some of them if he or she thinks that drug interactions or side effects are contributing to your sleep problems. Your doctor may also recommend a medication to help you sleep.

Manage stress Discovering ways to best manage stress will help you cope better. Some possibilities are meditation, guided imagery, muscle relaxation and yoga. Some people with lung cancer have found that yoga also helps relieve discomfort associated with metastasis. Ordinary “escapes,” such as reading, television and games, can also help you relax.

Stay emotionally healthy Any cancer diagnosis causes substantial emotional reactions, and the thought of living with lung cancer can be especially 20

overwhelming. You may feel a wide range of emotions, from fear and uncertainty when dealing with treatment decisions, to anger at the loss of control, to happiness when hearing positive test results. Allowing yourself to express your emotions freely is vital to remaining emotionally healthy.

Be alert to depression For some people, the emotional distress of living with lung cancer becomes more serious, and depression may develop. Depression is more complex than feeling sad or hopeless; rather, it’s a disorder consisting primarily of a depressed mood and loss of interest or pleasure in normal activities. A diagnosis of depression requires that at least five of the following symptoms occurred every day for at least two weeks: • Persistent sad, anxious or “numb” feeling • Loss of interest or pleasure in onceenjoyed hobbies and activities • Feelings of hopelessness • Feelings of guilt, worthlessness, helplessness • Fatigue and loss of energy • Difficulty concentrating, remembering, making decisions • Sleep problems • Changes in appetite and/or weight • Thoughts of death or suicide, or suicide attempts • Restlessness, irritability • Social withdrawal • Repeated episodes of crying Depression is treated with counseling or medication or both. People with mild depression may find benefit in counseling only, and moderate or severe depression is typically managed with a combination of counseling and medication. Many antidepressants are available, and the ones used most often for people with cancer belong to a class known as selective serotonin reuptake inhibitors (SSRIs). Each drug has different side effects, which can usually be managed by adjusting the dose or switching the medication.

Your doctor will work with you to find the antidepressant that works best for you with minimal side effects. Antidepressants do not take effect right away; SSRIs become effective in about two to four weeks, and other drugs may take three to six weeks.

A class of drugs known as psychostimulants has also shown some promise in the treatment of depression and fatigue. These drugs help improve alertness during the day and raise your energy level while also reducing fatigue, and they can also act against the Pa t i e n t Re s o u r ce .co m

It’s Never too Late to Quit About half of all people are current smokers when diagnosed with lung cancer, and as many as eight of every 10 smokers continue to smoke after diagnosis. “Why quit?” most smokers think, not realizing there are several good answers to that question: • Because people who continue to smoke after a diagnosis of earlystage lung cancer almost double their risk of dying.

• Because chemotherapy and radiation are likely to produce fewer complications and related illnesses among nonsmokers than smokers.

• Because smoking can alter levels of chemotherapy in your body, which can have a negative effect on how well they work.

• Because there are immediate benefits to not smoking: decreased fatigue and shortness of breath; increased activity level; improved appetite, sleep and mood; and enhanced emotional well-being and self-esteem.

drowsiness caused by some opioids. This class of drugs includes modafinil (Provigil), armodafinil (Nuvigil), methylphenidate (Ritalin) and dextroamphetamine (Dexedrine).

Counseling may be done on an individual basis to help explore emotional issues that contribute to depression. Another type of counseling is cognitive-behavioral therapy, which helps a person change his or her negative thought patterns and behaviors. Counseling, especially in a group setting, can improve your quality of life by helping you improve your communication with family members and friends, face fears about death and dying, and help control pain and other symptoms.

Depression can occur at any time, but it’s most likely to occur during times of unrelieved symptoms or side effects. The pain, extreme fatigue, nausea and vomiting associated with cancer or its treatment can have a substantial impact on your emotional health, so talk to your doctor about ways to relieve these side effects.

Set priorities At no other time is it more important to think about all that you have in your life and to set priorities. Priorities differ among people, and you should listen only to yourself in setting them. Some people prefer to maintain their daily routine and continue working, as it makes them feel “normal.” Others prefer to PatientResou rce .co m

• Because there are long-term benefits to not smoking: longer time to cancer progression, decreased likelihood of a second cancer and longer overall survival.

Doctors now place greater emphasis on quitting smoking because advances in lung cancer treatment have led to better survival rates. Longer survival means that people with lung cancer are more likely to benefit from the improvements in quality of life provided by quitting. If you smoke, your doctors will encourage you to stop smoking. Medications are available to help you with nicotine withdrawal, and counseling can help you cope with quitting. Many online resources can help you take the first step: • American Cancer Society – Guide to Quitting Smoking: www.cancer.org • American Legacy Foundation – Become an EX: www.becomeanex.org • LiveHelp Online Chat: https://livehelp.cancer.gov

pursue more enjoyable activities and devote more time to travel, hobbies or time with family and friends. Becoming a volunteer helps some people gain perspective as well as a sense of purpose, and many find support and comfort in spirituality. Think about what matters most to you and spend most of your time doing it.

Maintain relationships Maintaining strong relationships with others is another key element in emotional well-being. This may be difficult, as you may feel like others don’t understand what you’re going through. Your friends may avoid talking with you because they don’t know what to say or are afraid to say the wrong thing.

Reach out to family and friends. Tell them about your fears – and happiness – so they can better understand your experience. Also, admit that you may need help sometimes.

Intimate relationships may also present a challenge. Cancer and its treatment affect how you feel about yourself and your body and how you relate intimately to your spouse or significant other. Talk openly with your partner to keep a good intimate relationship.

Get support Coping with lung cancer is a challenge no one should have to face alone. Talking with other people with lung cancer can help you learn more about the disease, treatment options,

• My Time to Quit: www.mytimetoquit.com • National Cancer Institute Smoking Quitline: 877-44U-QUIT • Smokefree.gov: http://smokefree.gov • Smokefree Women: http://women.smokefree.gov Quitting is not easy, and studies have shown that most people need more than one attempt before they successfully stop smoking. If you don’t succeed the first time, keep trying!

resources and how to cope, as well as provide emotional support and help you feel less alone. Support groups provide a wide variety of benefits for people living with lung cancer.

Various kinds of support groups are available. Your doctor or nurse should be able to provide you with a list of local support groups in your area. Many online groups and lists are also available, which offer the advantage of being available all the time and are often preferred by those who would rather not talk face-to-face or who do not feel well enough to go to a local group meeting.

ADDITIONAL RESOURCES American Cancer Society: www.cancer.org Cancer and Depression Getting a Good Night’s Sleep May Be Challenging for a Cancer Patient American Society of Clinical Oncology (patient website): www.cancer.net Bone Health During Cancer Treatment Emotional and Physical Matters Strategies for a Better Night’s Sleep Bone and Cancer Foundation: www.boneandcancerfoundation.org Bone Health LIVESTRONG Foundation: www.livestrong.org Osteoporosis National Cancer Institute: www.cancer.gov Managing Emotional Effects Sleep Disorders (PDQ®)

21

Financial Resources Basic living expenses

Insurance premium expenses

Dendreon: www.provengereimbursement.com, 877-336-3736

Brenda Mehling Cancer Fund (patients 18-40): www.bmcf.net, 661-310-7940

American Cancer Society Health Insurance Assistance Service: www.cancer.org, 800-ACS-2345

Eisai Inc.: www.eisaireimbursement.com, 866-613-4724

Bringing Hope Home: www.bringinghopehome.org The CHAIN Fund Inc.: www.thechainfund.com, 203-530-3439

Brenda Mehling Cancer Fund (patients 18-40): www.bmcf.net, 661-310-7940

Cleaning for a Reason (free house cleaning service): www.cleaningforareason.org, 877-337-3348

CancerCare Co-Payment Assistance Foundation: www.cancercarecopay.org, 866-552-6729

Family Reach Foundation: www.familyreach.org, 973-394-1411

The CHAIN Fund Inc.: www.thechainfund.com, 203-530-3439

Friends of Man: www.friendsofman.org, 303-798-2342

Co-Pay Relief Program: www.copays.org, 866-512-3861

Life Beyond Cancer Foundation: www.lifebeyondcancer.org, 800-282-LBCF

Foundation for Health Coverage Education: www.coverageforall.org

Native American Cancer Research: www.natamcancer.org, 800-537-8295

HealthWell Foundation (diagnosis-specific): www.healthwellfoundation.org, 800-675-8416

Rise Above It (youth, young adults): www.raibenefit.org

Kaiser Family Foundation: http://kff.org/health-costs/report/ a-consumer-guide-to-handling-disputes-with-your-employeror-private-health-plan/

The Simple Dollar: www.thesimpledollar.com/lifeinsurance Stupid Cancer: www.stupidcancer.org, 877-735-4673 Zichron Shlome Refuah Fund: www.zsrf.org, 718-GET-WELL

CancerCare: www.cancercare.org, 800-813-HOPE

Prescription expenses

Family Reach Foundation: www.familyreach.org, 973-394-1411

American Cancer Society: www.cancer.org, 800-ACS-2345

Friends of Man: www.friendsofman.org, 303-798-2342

Brenda Mehling Cancer Fund (patients 18-40): www.bmcf.net, 661-310-7940 CancerCare: www.cancercare.org, 800-813-HOPE

Stupid Cancer: www.stupidcancer.org, 877-735-4673

The CHAIN Fund Inc.: www.thechainfund.com, 203-530-3439

Government assistance

Foundation for Health Coverage Education: www.coverageforall.org

Administration on Aging: www.aoa.gov, 202-401-4634

Friends of Man: www.friendsofman.org, 303-798-2342

Benefits.gov: www.benefits.gov, 800-FED-INFO

HealthWell Foundation: www.healthwellfoundation.org, 800-675-8416

Legal Services Corporation: www.lsc.gov, 202-295-1500

Native American Cancer Research: www.natamcancer.org, 800-537-8295 NeedyMeds (links to assistance programs): www.needymeds.org Partnership for Prescription Assistance: www.pparx.org, 888-4PPA-NOW Patient Access Network Foundation: www.panfoundation.org, 866-316-PANF

Medicare Rights Center: www.medicarerights.org, 800-333-4114

Patient Advocate Foundation Co-Pay Relief: www.copays.org, 866-512-3861

Social Security Administration: www.ssa.gov, 800-772-1213

Patient Services Inc.: www.patientservicesinc.org, 800-366-7741

Social Security Disability Resource Center: www.ssdrc.com

Rise Above It (youth, young adults): www.raibenefit.org

State Children’s Health Insurance Program: www.insurekidsnow.gov, 877-KIDS-NOW

RxAssist: www.rxassist.org

State Health Insurance Assistance Program: www.shiptalk.org

RxHope: www.rxhope.com, 877-267-0517 Stupid Cancer: www.stupidcancer.org, 877-735-4673

U.S. Department of Veterans Affairs: www.va.gov/health/index.asp

Together Rx Access: www.togetherrxaccess.com, 800-444-4106

Housing during treatment expenses

Reimbursement & patient assistance programs

American Cancer Society (Hope Lodges): www.cancer.org, 800-ACS-2345

Allos Therapeutics Inc.: www.getasapinfo.com, 877-272-7102

Brenda Mehling Cancer Fund (patients 18-40): www.bmcf.net, 661-310-7940 Fisher House (military families): www.fisherhouse.org, 888-294-8560 Hope Lodge: www.cancer.org/treatment/ supportprogramsservices/hopelodge/index, 800-227-2345 Hospitality Homes: www.hosp.org, 888-595-4678 Joe’s House: www.joeshouse.org, 877-JOES-HOU National Association of Hospital Hospitality Houses Inc.: www.nahhh.org, 800-542-9730

Johnson & Johnson Patient Assistance: www.jjpaf.org, 800-652-6227 Lilly USA LLC: www.lillytruassist.com, 866-472-8663 Merck & Co.: www.merck.com/merckhelps, 800-727-5400

Pfizer Inc.: www.pfizerhelpfulanswers.com/pages/misc/default.aspx, 866-706-2400 Sanofi-Aventis: www.visitspconline.com, 888-847-4877 Searle Pharmaceutical Company: 800-542-2526

Transportation & travel resources The Air Care Alliance: www.aircareall.org, 888-260-9707 Air Charity Network: www.aircharitynetwork.org, 877-621-7177 American Cancer Society (Road to Recovery): www.cancer.org, 800-ACS-2345 Angel Airline Samaritans: www.angelairlinesamaritans.org, 800-296-1217 Angel Airlines for Cancer Patients: www.angelairlinesforcancerpatients.org, 800-296-1217 Angel Flight Central: www.angelflightcentral.org, 866-569-9464 Brenda Mehling Cancer Fund (patients 18-40): www.bmcf.net, 661-310-7940 CancerCare: www.cancercare.org, 800-813-HOPE Chai Lifeline: www.chailifeline.org Corporate Angel Network: www.corpangelnetwork.org, 866-328-1313 Family Reach Foundation: www.familyreach.org, 973-394-1411 Hospitality Homes: www.hosp.org, 888-595-4678 Joe’s House: www.joeshouse.org, 877-JOES-HOU Leukemia & Lymphoma Society: www.lls.org, 800-955-4572 Lifeline Pilots: www.lifelinepilots.org, 800-822-7972 LIVESTRONG Foundation: www.livestrong.org

Amgen Inc.: www.amgenassist.com, 888-427-7478 AstraZeneca: www.astrazeneca-us.com/help-affording-your-medicines, 800-292-6363

Mercy Medical Airlift: www.mercymedical.org, 888-675-1405 National Patient Travel Center: www.patientravel.org, 800-296-1217 Native American Cancer Research: www.natamcancer.org, 800-537-8295 NeedyMeds (links to assistance programs): www.needymeds.org

Bayer Healthcare Pharmaceuticals: 866-575-5002

Operation Liftoff: www.operationliftoff.com

Boehringer Ingelheim: http://us.boehringer-ingelheim.com, 800-556-8317

Patient AirLift Services: www.palservices.org

Bristol-Myers Squibb: www.bms.com/products/Pages/programs.aspx, 800-861-0048; Indigent Patient Assistance Program, 800-736-0003

Stupid Cancer: www.stupidcancer.org, 877-735-4673

Celgene: www.celgenepatientsupport.com, 800-931-8691

Ronald McDonald House Charities: www.rmhc.com, 630-623-7048

Centocor Ortho Biotech Inc.: 888-222-3771

Stupid Cancer: www.stupidcancer.org, 877-735-4673

Cephalon Oncology: www.cephalononcologycore.com, 888-587-3263

22

ICI Pharmaceutical Novaldex (provides tamoxifen to patients with financial need): 800-456-5678

Novartis Pharmaceuticals: www.patientassistancenow.com, 800-245-5356

Stupid Cancer: www.stupidcancer.org, 877-735-4673

Hill-Burton Program: www.hrsa.gov/gethealthcare/affordable/hillburton, 800-638-0742

GlaxoSmithKline: www.gsk-access.com, 866-475-3678

NeedyMeds (links to assistance programs): www.needymeds.org Brenda Mehling Cancer Fund (patients 18-40): www.bmcf.net, 661-310-7940

Centers for Medicare & Medicaid Services: www.cms.gov, 800-MEDICARE

Genzyme Corporation: www.genzyme.com/patients/patient-support-services.aspx, 800-745-4447

Millennium Pharmaceuticals Inc.: www.velcade.com/payingfortreatment.aspx, 866-835-2233

Patient Services Inc.: www.patientservicesinc.org, 800-366-7741

Breast and Cervical Cancer Treatment Act of 2000: www.cdc.gov/cancer/nbccedp/legislation/law106-354.htm, 800-232-4636

Genomic Health Inc.: www.oncotypedx.com/en-us/breast/ patientscaregiversinvasive/insurance/insurance, 866-662-6897

Native American Cancer Research: www.natamcancer.org, 800-537-8295

Child care expenses

Native American Cancer Research: www.natamcancer.org, 800-537-8295

Genentech Inc.: www.gene.com/patients/patient-access, 888-249-4918

Rise Above It (youth, young adults): www.raibenefit.org Veterans Airlift Command: www.veteransairlift.org, 952-582-2911 Zichron Shlome Refuah Fund: www.zsrf.org, 718-GET-WELL

Pa t i e n t Re s o u r ce .co m

Advocacy & Assistance Resources Cancer education

Clinical trials

American Cancer Society ..........................................................................................www.cancer.org American Society of Clinical Oncology (patient website) ........................................www.cancer.net Association of Community Cancer Centers .................................................... www.accc-cancer.org CANCER101........................................................................................................ www.cancer101.org CancerCare ........................................................................................................ www.cancercare.org CancerGuide .................................................................................................... www.cancerguide.org The Cancer Project ........................................................................................ www.cancerproject.org CancerQuest .................................................................................................... www.cancerquest.org The Center for Cancer Support & Education..............................................www.centerforcancer.org Centers for Disease Control and Prevention................................................................. www.cdc.gov GetPalliativeCare.org ...............................................................................www.getpalliativecare.org Global Resource for Advancing Cancer Education ......................................... www.cancergrace.org The Hope Light Foundation .................................................................... http://hopelightproject.com LIVESTRONG Foundation ................................................................................... www.livestrong.org National Cancer Institute ......................................................................................... www.cancer.gov National Comprehensive Cancer Network ..................................................................www.nccn.org OncoLink .................................................................................................................www.oncolink.org Oncology Nursing Society ............................................................................................. www.ons.org PearlPoint Cancer Support .................................................................................www.pearlpoint.org Pine Street Foundation...................................................................... www.pinestreetfoundation.org R.A. Bloch Cancer Foundation Inc. ...................................................................www.blochcancer.org Scott Hamilton CARES Initiative ........................................................................ www.scottcares.org U.S. National Library of Medicine ..........................................................................www.nlm.nih.gov Wellness Place.............................................................................................www.wellnessplace.org

CenterWatch ................................................................................................. www.centerwatch.com Coalition of Cancer Cooperative Groups................................................... www.cancertrialshelp.org LIVESTRONG Foundation ......................................... www.emergingmed.com/networks/livestrong PearlPoint Cancer Support .................................................................................www.pearlpoint.org My Clinical Trial Locator ................................................................. http://myclinicaltriallocator.com National Cancer Institute ..............................................................www.cancer.gov/clinicaltrials.org Stand Up To Cancer....................................................................................www.standup2cancer.org

Caregivers & support

Lung cancer

4th Angel Mentoring Program .............................................................................www.4thangel.org Buddy Kemp Caring House..........................................................www.presbyterian.org/buddykemp CANCER101........................................................................................................ www.cancer101.org Cancer Action ..............................................................................................www.canceractionkc.org Cancer and Careers ................................................................................ www.cancerandcareers.org CancerCare ........................................................................................................ www.cancercare.org Cancer Connection ............................................................................ www.thecancerconnection.org Cancer Hope Network ......................................................................... www.cancerhopenetwork.org Cancer Information and Counseling Line ......................................................................800-525-3777 Cancer Really Sucks! ............................................................................. www.cancerreallysucks.org Cancer Support Community ........................................................www.cancersupportcommunity.org Cancer Support Community Open to Options counseling program ..............................888-793-9355 Cancer Survivors Network .................................................................................http://csn.cancer.org Cancer Survivors On Line ...........................................................................www.cancersurvivors.org Cancer Wellness Center ............................................................................www.cancerwellness.org Caregiver Action Network......................................................................... http://caregiveraction.org CaringBridge....................................................................................................www.caringbridge.org The Center for Cancer Support & Education..............................................www.centerforcancer.org Center to Advance Palliative Care ...............................................................................www.capc.org Cuddle My Kids ............................................................................................. www.cuddlemykids.org Family Caregiver Alliance .................................................................................... www.caregiver.org Fighting Chance........................................................................................... www.fightingchance.org Friend for Life Cancer Support Network ........................................................... www.friend4life.org The Gathering Place, A Caring Community for Those Touched by Cancer ....www.touchedbycancer.org Guide Posts of Strength Inc. ...............................................................................www.cancergps.org The Hope Light Foundation .................................................................... http://hopelightproject.com Imerman Angels ......................................................................................... www.imermanangels.org The LGBT Cancer Project – Out With Cancer .................................................... www.lgbtcancer.org LivingWell Cancer Resource Center ...............................................................www.livingwellcrc.org Lotsa Helping Hands ............................................................................www.lotsahelpinghands.com MyLifeLine.org Cancer Foundation ................................................................... www.mylifeline.org The Patient Partner Project ......................................................... www.thepatientpartnerproject.org PearlPoint Cancer Support ..................................................................................www.pearlpoint.org SHARE Caregiver Circle for Family and Friends .........www.sharecancersupport.org/share-new/support/for_partners_and_caregivers Strike Out Cancer ......................................................................................www.strikeoutcancer.com Turning Point ................................................................................................www.turningpointkc.org Visiting Nurse Associations of America ..................................................................... www.vnaa.org Well Spouse Association ..................................................................................www.wellspouse.org Wellness Place.............................................................................................www.wellnessplace.org weSPARK (Cancer Support Center) ....................................................................... www.wespark.org Wonders & Worries ............................................................................www.wondersandworries.org

American Lung Association ......................................................................................... www.lung.org Beverly Fund Lung Cancer Foundation ............................................................. www.beverlyfund.org Bonnie J. Addario Lung Cancer Foundation.....................................www.lungcancerfoundation.org Caring Ambassadors Lung Cancer Program ................................................www.lungcancercap.org International Association for the Study of Lung Cancer..............................................www.iaslc.org It’s Time to Focus on Lung Cancer......................................................................www.lungcancer.org Lung Cancer Action Network ................................................................................. www.lungcan.org Lung Cancer Alliance ............................................................................www.lungcanceralliance.org Lung Cancer Foundation of America .................................................................. www.lcfamerica.org Lung Cancer Online Foundation .............................................................. www.lungcanceronline.org Lung Cancer Support Community..........................................................................www.lungevity.org The LUNGevity Foundation ...................................................................................www.lungevity.org National Lung Cancer Partnership .....................................www.nationallungcancerpartnership.org Uniting Against Lung Cancer ..................................................... www.unitingagainstlungcancer.org

PatientResou rce .co m

Communication support Cancer Survivors Network .................................................................................http://csn.cancer.org CaringBridge ...................................................................................................www.caringbridge.org LIVESTRONG Foundation ................................................................................... www.livestrong.org MyLifeLine.org Cancer Foundation ..................................................................... www.mylifeline.org

Complementary programs & alternative medicine The Annie Appleseed Project......................................................... www.annieappleseedproject.org Believe Big ......................................................................................................... www.believebig.org The Center for Mind-Body Medicine ........................................................................ www.cmbm.org Exceptional Cancer Patients ............................................................................ www.ecap-online.org National Center for Complementary and Alternative Medicine........................ www.nccam.nih.gov Office of Cancer Complementary and Alternative Medicine...........................www.cancer.gov/cam Society for Oncology Massage .................................................................................. www.s4om.org Stewart’s Caring Place Cancer Wellness Center ............................... www.stewartscaringplace.org Touch, Caring and Cancer ......................................................................www.partnersinhealing.net

Mental health services American Psychosocial Oncology Society Helpline ......................................................866-276-7443

Pain management American Chronic Pain Association ....................................................................... www.theacpa.org National Foundation for the Treatment of Pain .............................................................www.nih.gov PainFromCancer.org ................................................................................... www.painfromcancer.org The Resource Center of the Alliance of State Pain Initiatives ..............................www.trc.wisc.edu U.S. Pain Foundation .............................................................................. http://uspainfoundation.org

Patient advocacy Cancer Legal Resource Center .......www.disabilityrightslegalcenter.org/cancer-legal-resource-center Cancer Survivorship Research ...............................................................http://dccps.nci.nih.gov/ocs Dream Foundation ................................................................................... www.dreamfoundation.org Firefighter Cancer Support Network ............................................www.firefightercancersupport.org For Pete’s Sake Cancer Respite Foundation ................................... www.takeabreakfromcancer.org Foundation for Health Coverage Education .................................................www.coverageforall.org Friend for Life Cancer Support Network ............................................................ www.friend4life.org The Gathering Place, A Caring Community for Those Touched by Cancer ....www.touchedbycancer.org Gems of Hope Inc. ..........................................................................................www.gemsofhope.com Living Well Cancer Resource Center ..............................................................www.livingwellcrc.org The Mautner Project .................................................................................. www.mautnerproject.org National Coalition for Cancer Survivorship ...............................................www.canceradvocacy.org Office of Cancer Survivorship ...............................................................http://dccps.nci.nih.gov/ocs Patient Advocate Foundation ....................................................................www.patientadvocate.org Research Advocacy Network ................................................................. www.researchadvocacy.org

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This patient education guide was produced with support from: