Cancer Survivorship Sourcebook, 3rd Ed.

By Omnigraphics

Consumer health information about living with cancer after diagnosis, making cancer care decisions, coping with complications of treatment, and maintaining wellness after treatment.  Includes index, glossary of related terms, and other resources.

• Language: English
• Publisher: Omnigraphics
• Release date: Mar 1, 2020
• ISBN: 9780780817852

Book preview

PREFACE

About This Book

Cancer is not a single disease. It is the name given to a group of related diseases that all share a common characteristic: some of the body’s cells do not die when they should. Instead they continue to grow and divide. Through this process, cancer cells damage various tissues and organs, causing a broad array of symptoms and even death. The cancer death rate in the United States has declined since the early 1990s. SEER Cancer Statistics Review findings between 1991 and 2015 indicate that the overall cancer death rate has gone down by 26 percent. A decline in the death rate means an increase in the number of survivors. However, cancer survivorship presents multiple challenges. Cancer survivors often lack the information they need to make treatment choices, maintain optimal physical and mental health during and after treatment, prevent disability and late effects associated with cancer, and handle economic issues related to cancer care.

Cancer Survivorship Sourcebook, Third Edition provides information for cancer patients and their family members, friends, and caregivers. It includes facts about cancer care, treatment advances, and clinical trials, and offers suggestions for coping with the side effects and complications of cancer treatments. Facts about emotional, cognitive, and mental-health issues in cancer care are included, and also focus on the challenges of maintaining wellness during and after cancer treatment. A glossary of cancer care terms is provided, along with a directory of resources for cancer patients and information about financial assistance for cancer care.

How to Use This Book

This book is divided into parts and chapters. Parts focus on broad areas of interest. Chapters are devoted to single topics within a part.

Part 1: If Your Doctor Says It Is Cancer offers information of immediate concern to the newly diagnosed cancer patient. It describes the process of finding a qualified healthcare provider and getting a second opinion. It also provides facts about the tests that are used to diagnose cancer and information on how to understand the diagnosis made.

Part 2: Making Treatment and Cancer Care Decisions discusses various strategies that can help a cancer patient research and understand issues related to his or her own care, including their prognosis. It also provides an overview of commonly used cancer treatments, medications, and complementary and alternative medicine (CAM) practices. It also discusses the use of palliative and hospice care and describes the transitions that may occur during care if cancer treatments are not effective in halting the advance of the disease.

Part 3: Clinical Trials and Cancer Research Updates provides information for cancer patients who are considering participating in cancer-related research studies. It explains the procedures commonly used in clinical trials and explains how to locate one. It also offers updated information about recent research results, new treatments, and current research initiatives that offers hope for the future.

Part 4: Coping with Side Effects and Complications of Cancer Treatment discusses unwanted side effects that often accompany commonly used cancer treatments. It explains why treatments can cause such physical effects as nausea, vomiting, hair loss, and fatigue. It also includes practical suggestions for dealing with these types of effects and other medical complications of cancer treatment.

Part 5: Emotional, Cognitive, and Mental-Health Issues in Cancer Care provides facts about the nonphysical effects and complications of cancer and its treatment. These include changes in self-image that result from illness or from body-altering surgical procedures and the ways people adjust to new circumstances. It also describes mental-health disorders that may accompany cancer treatment, including depression, anxiety, posttraumatic stress disorder (PTSD), and substance abuse.

Part 6: Maintaining Wellness during and after Cancer Treatment describes steps cancer survivors can take to achieve optimal health while they are receiving cancer treatments and after their treatments have been completed. These include eating a healthy diet, types of nutrition support available, participating in rehabilitative programs, exercising, and smoking cessation. Additional chapters address concerns related to resuming normal life once cancer treatment is over and appropriate follow-up care.

Part 7: Information for Friends, Family Members, and Caregivers offers guidelines for dealing with family matters, life planning, and practical aspects of cancer caregiving. Individual chapters address specific concerns of loved ones, parents, children, and siblings.

Part 8: Additional Help and Information includes a glossary of cancer care terms and a glossary of terms commonly used by health insurance companies and in medical billing. It also offers directories of resources able to provide services and support to cancer patients and their families.

Bibliographic Note

This volume contains documents and excerpts from publications issued by the following U.S. government agencies: Centers for Disease Control and Prevention (CDC); Centers for Medicare & Medicaid Services (CMS); Genetics Home Reference (GHR); National Cancer Institute (NCI); National Center for Complementary and Integrative Health (NCCIH); National Human Genome Research Institute (NHGRI); National Institute of Dental and Craniofacial Research (NIDCR); NIH News in Health; Office of Cancer Clinical Proteomics Research (OCCPR); and Office of Disease Prevention and Health Promotion (ODPHP).

It may also contain original material produced by Omnigraphics and reviewed by medical consultants.

About the Health Reference Series

The Health Reference Series is designed to provide basic medical information for patients, families, caregivers, and the general public. Each volume provides comprehensive coverage on a particular topic. This is especially important for people who may be dealing with a newly diagnosed disease or a chronic disorder in themselves or in a family member. People looking for preventive guidance, information about disease warning signs, medical statistics, and risk factors for health problems will also find answers to their questions in the Health Reference Series. The Series, however, is not intended to serve as a tool for diagnosing illness, in prescribing treatments, or as a substitute for the physician–patient relationship. All people concerned about medical symptoms or the possibility of disease are encouraged to seek professional care from an appropriate healthcare provider.

A Note about Spelling and Style

Health Reference Series editors use Stedman’s Medical Dictionary as an authority for questions related to the spelling of medical terms and The Chicago Manual of Style for questions related to grammatical structures, punctuation, and other editorial concerns. Consistent adherence is not always possible, however, because the individual volumes within the Series include many documents from a wide variety of different producers, and the editor’s primary goal is to present material from each source as accurately as is possible. This sometimes means that information in different chapters or sections may follow other guidelines and alternate spelling authorities. For example, occasionally a copyright holder may require that eponymous terms be shown in possessive forms (Crohn’s disease vs. Crohn disease) or that British spelling norms be retained (leukaemia vs. leukemia).

Medical Review

Omnigraphics contracts with a team of qualified, senior medical professionals who serve as medical consultants for the Health Reference Series. As necessary, medical consultants review reprinted and originally written material for currency and accuracy. Citations including the phrase Reviewed (month, year) indicate material reviewed by this team. Medical consultation services are provided to the Health Reference Series editors by:

Dr. Vijayalakshmi, MBBS, DGO, MD

Dr. Senthil Selvan, MBBS, DCH, MD

Dr. K. Sivanandham, MBBS, DCH, MS (Research), PhD

Our Advisory Board

We would like to thank the following board members for providing initial guidance on the development of this series:

Dr. Lynda Baker, Associate Professor of Library and Information Science, Wayne State University, Detroit, MI

Nancy Bulgarelli, William Beaumont Hospital Library, Royal Oak, MI

Karen Imarisio, Bloomfield Township Public Library, Bloomfield Township, MI

Karen Morgan, Mardigian Library, University of Michigan-Dearborn, Dearborn, MI

Rosemary Orlando, St. Clair Shores Public Library, St. Clair Shores, MI

Health Reference Series Update Policy

The inaugural book in the Health Reference Series was the first edition of Cancer Sourcebook published in 1989. Since then, the Series has been enthusiastically received by librarians and in the medical community. In order to maintain the standard of providing high-quality health information for the layperson the editorial staff at Omnigraphics felt it was necessary to implement a policy of updating volumes when warranted.

Medical researchers have been making tremendous strides, and it is the purpose of the Health Reference Series to stay current with the most recent advances. Each decision to update a volume is made on an individual basis. Some of the considerations include how much new information is available and the feedback we receive from people who use the books. If there is a topic you would like to see added to the update list, or an area of medical concern you feel has not been adequately addressed, please write to:

Managing Editor

Health Reference Series

Omnigraphics

615 Griswold St., Ste. 520

Detroit, MI 48226

Part 1 | If Your Doctor Says It Is Cancer

Chapter 1 | Finding a Cancer Doctor

Cancer is the name given to a collection of related diseases. In all types of cancer, some of the body’s cells begin to divide without stopping and spread into surrounding tissues.

Cancer can start almost anywhere in the human body, which is made up of trillions of cells. Normally, human cells grow and divide to form new cells as the body needs them. When cells grow old or become damaged, they die, and new cells take their place.

When cancer develops, however, this orderly process breaks down. As cells become more and more abnormal, old or damaged cells survive when they should die, and new cells form when they are not needed. These extra cells can divide without stopping and may form growths called tumors.

Many cancers form solid tumors, which are masses of tissue. Cancers of the blood, such as leukemias, generally do not form solid tumors.

Cancerous tumors are malignant, which means they can spread into, or invade, nearby tissues. In addition, as these tumors grow, some cancer cells can break off and travel to distant places in the body through the blood or the lymph system and form new tumors far from the original tumor.

Unlike malignant tumors, benign tumors do not spread into, or invade, nearby tissues. Benign tumors can sometimes be quite large, however. When removed, they usually don’t grow back, whereas malignant tumors sometimes do. Unlike most benign tumors elsewhere in the body, benign brain tumors can be life-threatening.

Figure 1.1. A Dividing Breast Cancer Cell

How to Find a Cancer Doctor

Cancer changes your life and the lives of those around you. Finding the right cancer doctor (called an oncologist) and treatment facility is an important step to getting the treatment and support you need.

Doctors specialize in different types of cancer and treatment methods. It is important for you to find a doctor with experience treating your type of cancer. You also need to feel good about the doctor you choose. You will be working with this person closely as you make decisions about your treatment.

Your primary care doctor can suggest cancer specialists. Or, you may be able to get a recommendation from a friend or family member. Also, your local hospital should be able to provide you with a list of specialists who practice there.

You can check with your local or state medical society, which may maintain a list of doctors in each specialty of cancer care. A nearby medical school may be able to suggest cancer specialists as well.

Choosing a Doctor

When choosing a doctor for your cancer care, it may be helpful to know some of the terms used to describe a doctor’s training and credentials. Most physicians who treat people with cancer are medical doctors (they have an M.D. degree) or osteopathic doctors (they have a D.O. degree). Standard training includes 4 years of study at a college or university, 4 years of medical school, and 3 to 7 years of postgraduate medical education through internships and residencies. Doctors must pass an exam to become licensed to practice medicine in their state.

Specialists are doctors who have done their residency training in a specific field such as internal medicine. Independent specialty boards certify physicians after they have met needed requirements, including meeting certain education and training standards, being licensed to practice medicine, and passing an examination given by their specialty board. Once they have met these requirements, physicians are said to be board certified.

Some specialists who treat cancer are:

Medical oncologist specializes in treating cancer.

Hematologist focuses on diseases of the blood and related tissues, including the bone marrow, spleen, and lymph nodes.

Radiation oncologist uses x-rays and other forms of radiation to diagnose and treat disease.

Surgeon performs operations on almost any area of the body and may specialize in a certain type of surgery.

_____________

This chapter contains text excerpted from the following sources: Text in this chapter begins with excerpts from What Is Cancer? National Cancer Institute (NCI), February 9, 2015. Reviewed January 2020; Text under the heading How to Find a Cancer Doctor is excerpted from How to Find a Cancer Doctor, NIH News in Health, National Institutes of Health (NIH), February 2018; Text under the heading Choosing a Doctor is excerpted from Finding Healthcare Services, National Cancer Institute (NCI), November 5, 2019.

Chapter 2 | Getting a Second Opinion

After you talk to a doctor about the diagnosis and treatment plan for your cancer, you may want to get another doctor’s opinion before you begin treatment. This is known as getting a second opinion. You can do this by asking another specialist to review all the materials related to your case. The doctor who gives the second opinion may agree with the treatment plan proposed by your first doctor, or they may suggest changes or another approach. Either way, getting a second opinion may:

Give you more information

Answer any questions you may have

Give you a greater sense of control

Help you feel more confident, knowing you have explored all your options

Getting a second opinion is very common. Yet some patients worry that their doctor will be offended if they ask for a second opinion. Usually, the opposite is true. Most doctors welcome a second opinion. And many health insurance companies pay for a second opinion or even require them, particularly if a doctor recommends surgery.

When talking with your doctor about getting a second opinion, it may be helpful to express that you are satisfied with your care but want to be certain you are as informed as possible about your treatment options. It is best to involve your doctor in the process of getting a second opinion, because she or he will need to make your medical records (such as your test results and x-rays) available to the doctor giving the second opinion. You may wish to bring a family member along for support when asking for a second opinion.

If your doctor cannot suggest another specialist for a second opinion, many of the resources listed above for finding a doctor can help you find a specialist for a second opinion. You can also call the National Cancer Institute’s (NCI) Contact Center at 800-4-CANCER (800-422-6237) for guidance.

Getting Treatment in the United States If You Are Not a U.S. Citizen

Some people who live outside the United States may wish to obtain a second opinion or have their cancer treatment in this country. Many facilities in the United States offer these services to international cancer patients. They may also provide support services, such as language interpretation or help with travel and finding lodging near the treatment facility.

If you live outside the United States and would like to get cancer treatment in this country, you should contact cancer treatment facilities directly to find out whether they have an international patient office. The NCI-Designated Cancer Centers Find a Cancer Center (www.cancer.gov/research/nci-role/cancer-centers/find) page that offers contact information for NCI-designated cancer centers throughout the United States.

Citizens of other countries who are planning to travel to the United States for cancer treatment must first obtain a nonimmigrant visa for medical treatment from the U.S. Embassy or Consulate in their home country. Visa applicants must show that they:

Want to come to the United States for medical treatment

Plan to stay for a specific, limited period

Have funds to cover expenses in the United States

Have a residence and social and economic ties outside the United States

Intend to return to their home country

To find out the fees and documents needed for the nonimmigrant visa and to learn about the application process, contact the U.S. Embassy or Consulate in your home country.

_____________

This chapter includes text excerpted from Finding Healthcare Services, National Cancer Institute (NCI), November 5, 2019.

Chapter 3 | Cancer Screening

What Is A Cancer Screening?

A cancer screening is looking for cancer before a person has any symptoms.

Screening tests can help find cancer at an early stage, before symptoms appear. When abnormal tissue or cancer is found early, it may be easier to treat or cure. By the time symptoms appear, the cancer may have grown and spread. This can make the cancer harder to treat or cure.

It is important to remember that when your doctor suggests a screening test, it does not always mean she or he thinks you have cancer. Screening tests are done when you have no cancer symptoms.

Types of Screening Tests

Screening tests include the following:

Physical exam and history. An exam of the body to check general signs of health, including checking for signs of disease, such as lumps or anything else that seems unusual. A history of the patient’s health habits and past illnesses and treatments will also be taken.

Laboratory tests. Medical procedures that test samples of tissue, blood, urine, or other substances in the body.

Imaging procedures. Procedures that make pictures of areas inside the body.

Genetic tests. A laboratory test in which cells or tissue are analyzed to look for changes in genes or chromosomes. These changes may be a sign that a person has or is at risk of having a specific disease or condition.

Risks of Screening Tests

Not all screening tests are helpful and most have risks. It is important to know the risks of the test and whether it has been proven to decrease the chance of dying from cancer.

Some screening tests can cause serious problems.

Some screening procedures can cause bleeding or other problems. For example, colon cancer screening with sigmoidoscopy or colonoscopy can cause tears in the lining of the colon.

False-positive test results are possible.

Screening test results may appear to be abnormal even though there is no cancer. A false-positive test result (one that shows there is cancer when there really isn’t) can cause anxiety and is usually followed by more tests and procedures, which also have risks.

False-negative test results are possible.

Screening test results may appear to be normal even though there is cancer. A person who receives a false-negative test result (one that shows there is no cancer when there really is) may delay seeking medical care even if there are symptoms.

Finding the cancer may not improve the person’s health or help the person live longer.

Some cancers never cause symptoms or become life-threatening, but if found by a screening test, the cancer may be treated. There is no way to know if treating the cancer would help the person live longer than if no treatment were given. In both teenagers and adults, there is a rare risk of attempted or actual suicide in the first year after being diagnosed with cancer. Also, treatments for cancer have side effects.

For some cancers, finding and treating the cancer early does not improve the chance of a cure or help the person live longer.

What Is Informed and Shared Decision-Making?

It is important that you understand the benefits and harms of screening tests and make an informed choice about which screening tests are right for you.

Before having any screening test, it is important that you discuss the test with your doctor or other healthcare providers. Every screening test has both benefits and harms. Your healthcare provider should talk to you about the benefits and harms of a screening test and include you in the decision about whether the screening test is right for you. This is called informed and shared decision-making.

1. Your healthcare provider will talk to you about the possible benefits, harms, and unknowns of a screening test. This may include information about the benefits of finding a cancer early or the harms related to false test results, overdiagnosis, and overtreatment. Your healthcare provider may also give you information in a leaflet, booklet, video, website, or other material.

2. After you understand the benefits and harms of a screening test, you can decide whether or not you want to have the screening test based on what is best for you. Sometimes the harms and benefits are closely matched and the decision about whether to have a screening test is hard to make.

3. Your healthcare provider will write your decision down in your medical record and order the screening test, if that was your decision.

What Are the Goals of Screening Tests?

A screening test that works the way it should and is helpful does the following:

Finds cancer before symptoms appear.

Screens for a cancer that is easier to treat and cure when found early.

Has few false-negative test results and false-positive test results.

Decreases the chance of dying from cancer.

Screening tests usually do not diagnose cancer. If a screening test result is abnormal, more tests may be done to check for cancer. For example, a screening mammogram may find a lump in the breast. A lump may be cancer or something else. More tests need to be done to find out if the lump is cancer. These are called diagnostic tests. Diagnostic tests may include a biopsy, in which cells or tissues are removed so a pathologist can check them under a microscope for signs of cancer.

Who Does Need to Be Screened?

Certain screening tests may be suggested only for people who have a high risk for certain cancers.

Anything that increases the chance of cancer is called a cancer risk factor. Having a risk factor does not mean that you will get cancer; not having risk factors does not mean that you will not get cancer.

Some screening tests are used only for people who have known risk factors for certain types of cancer. People known to have a higher risk of cancer than others include those who have any of the following:

A personal history of cancer

A family history of cancer

Certain gene mutations (changes) that have been linked to cancer

Exposure to cancer-causing agents such as tobacco smoke or workplace chemicals

A blood clot that develops for no known reason

Older age

People who have a high risk of cancer may need to be screened more often or at an earlier age than other people.

Cancer screening research includes finding out who has an increased risk of cancer.

Scientists are trying to better understand who is likely to get certain types of cancer. They study the things we do and the things around us to see if they cause cancer. This information helps doctors figure out who should be screened for cancer, which screening tests should be used, and how often the tests should be done.

Since 1973, the Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute (NCI) has been collecting information on people with cancer from different parts of the United States. Information from SEER, research studies, and other sources are used to study who is at risk.

How Is Cancer Risk Measured?

Cancer risk is measured in different ways. The findings from surveys and studies about cancer risk are studied and the results are explained in different ways. Some of the ways risk is explained include absolute risk, relative risk, and odds ratios.

Absolute Risk

This is the risk a person has of developing a disease, in a given population (for example, the entire U.S. population) over a certain period of time. Researchers estimate the absolute risk by studying a large number of people that are part of a certain population (for example, women in a given age group). Researchers count the number of people in the group who get a certain disease over a certain period of time. For example, a group of 100,000 women between the ages of 20 and 29 are observed for one year, and 4 of them get breast cancer during that time. This means that the one-year absolute risk of breast cancer for a woman in this age group is 4 in 100,000, or 4 chances in 100,000.

Relative Risk

This is often used in research studies to find out whether a trait or a factor can be linked to the risk of a disease. Researchers compare two groups of people who are a lot alike. However, the people in one of the groups must have the trait or factor being studied (they have been exposed). The people in the other group do not have it (they have not been exposed). To figure out relative risk, the percentage of people in the exposed group who have the disease is divided by the percentage of people in the unexposed group who have the disease.

Relative risks can be:

Larger than 1: The trait or factor is linked to an increase in risk.

Equal to 1: The trait or factor is not linked to risk.

Less than 1: The trait or factor is linked to a decrease in risk.

Relative risks are also called risk ratios.

Odds Ratio

In some types of studies, researchers do not have enough information to figure out relative risks. They use something called an odds ratio instead. An odds ratio can be an estimate of relative risk.

One type of study that uses an odds ratio instead of relative risk is called a case-control study. In a case-control study, two groups of people are compared. However, the individuals in each group are chosen based on whether or not they have a certain disease. Researchers look at the odds that the people in each group were exposed to something (a trait or factor) that might have caused the disease. Odds describes the number of times the trait or factor was present or happened, divided by the number of times it was not present or did not happen. To get an odds ratio, the odds for one group are divided by the odds for the other group.

Odds ratios can be:

Larger than 1: The trait or factor is linked to an increase in risk.

Equal to 1: The trait or factor is not linked to risk.

Less than 1: The trait or factor is linked to a decrease in risk.

Looking at traits and exposures in people with and without cancer can help find possible risk factors. Knowing who is at an increased risk for certain types of cancer can help doctors decide when and how often they should be screened.

Does Screening Help People Live Longer?

Finding some cancers at an early stage (before symptoms appear) may help decrease the chance of dying from those cancers.

For many cancers, the chance of recovery depends on the stage (the amount or spread of cancer in the body) of the cancer when it was diagnosed. Cancers that are diagnosed at earlier stages are often easier to treat or cure.

Studies of cancer screening compare the death rate of people screened for a certain cancer with the death rate from that cancer in people who were not screened. Some screening tests have been shown to be helpful both in finding cancers early and in decreasing the chance of dying from those cancers. These include mammograms for breast cancer and sigmoidoscopy and fecal occult blood testing for colorectal cancer. Other tests are used because they have been shown to find a certain type of cancer in some people before symptoms appear, but they have not been proven to decrease the risk of dying from that cancer. If a cancer is fast-growing and spreads quickly, finding it early may not help the person survive the cancer.

Screening studies are done to see whether deaths from cancer decrease when people are screened.

When collecting information on how long cancer patients live, some studies define survival as living five years after the diagnosis. This is often used to measure how well cancer treatments work. However, to see if screening tests are useful, studies usually look at whether deaths from the cancer decrease in people who were screened. Over time, signs that a cancer screening test is working include:

An increase in the number of early-stage cancers found

A decrease in the number of late-stage cancers found

A decrease in the number of deaths from the cancer

The number of deaths from cancer is lower today than it was in the past. It is not always clear if this is because screening tests found the cancers earlier or because cancer treatments have gotten better, or both. The Surveillance, Epidemiology, and End Results (SEER) Program of the NCI collects and reports information on survival times of people with cancer in the United States. This information is studied to see if finding cancer early affects how long these people live.

Certain factors may cause survival times to look like they are getting better when they are not.

These factors include lead-time bias and overdiagnosis.

Lead-Time Bias

Survival time for cancer patients is usually measured from the day the cancer is diagnosed until the day they die. Patients are often diagnosed after they have signs and symptoms of cancer. If a screening test leads to a diagnosis before a patient has any symptoms, the patient’s survival time is increased because the date of diagnosis is earlier. This increase in survival time makes it seem as though screened patients are living longer when that may not be happening. This is called lead-time bias. It could be that the only reason the survival time appears to be longer is that the date of diagnosis is earlier for the screened patients. But the screened patients may die at the same time they would have without the screening test.

Overdiagnosis

Sometimes, screening tests find cancers that do not matter because they would have gone away on their own or never caused any symptoms. These cancers would never have been found if not for the screening test. Finding these cancers is called overdiagnosis. Overdiagnosis can make it seem like more people are surviving cancer longer, but in reality, these are people who would not have died from cancer anyway.

How Do Screening Tests Become Standard Tests?

Results from research studies help doctors decide when a screening test works well enough to be used as a standard test.

Evidence about how safe, accurate, and useful cancer screening tests are comes from clinical trials (research studies with people) and other kinds of research studies. When enough evidence has been collected to show that a screening test is safe, accurate, and useful, it becomes a standard test. Examples of cancer screening tests that were once under study but are now standard tests include:

Colonoscopy for colorectal cancer

Mammograms for breast cancer

Pap tests (Pap smears) for cervical cancer

Different types of research studies are done to study cancer screening.

Cancer screening trials study new ways of finding cancer in people before they have symptoms. Screening trials also study screening tests that may find cancer earlier or are more accurate than existing tests, or that may be easier, safer, or cheaper to use. Screening trials are designed to find the possible benefits and possible harms of cancer screening tests. Different clinical trial designs are used to study cancer screening tests.

The strongest evidence about screening comes from research done in clinical trials. However, clinical trials cannot always be used to study questions about screening. Findings from other types of studies can give useful information about how safe, useful, and accurate cancer screening tests are.

Types of Studies

Randomized Controlled Trials

Randomized controlled trials give the highest level of evidence about how safe, accurate, and useful cancer screening tests are. In these trials, volunteers are assigned randomly (by chance) to one of two or more groups. The people in one group (the control group) may be given a standard screening test (if one exists) or no screening test. The people in the other group(s) are given the new screening test(s). Test results for the groups are then compared to see if the new screening test works better than the standard test, and to see if there are any harmful side effects.

Using chance to assign people to groups means that the groups will probably be very much alike and that the trial results would not be affected by human choices or something else.

Nonrandomized Controlled Trials

In nonrandomized clinical trials, volunteers are not assigned randomly (by chance) to different groups. They choose which group they want to be in or the study leaders assign them. Evidence from this type of research is not as strong as evidence from randomized controlled trials.

Cohort Studies

A cohort study follows a large number of people over time. The people are divided into groups, called cohorts, based on whether or not they have had a certain treatment or been exposed to certain things. In cohort studies, the information is collected and studied after certain outcomes (such as cancer or death) have occurred. For example, a cohort study might follow a group of women who have regular Pap tests, and divide them into those who test positive for the human papillomavirus (HPV) and those who test negative for HPV. The cohort study would show how the cervical cancer rates are different for the two groups over time.

Case-Control Studies

Case-control studies are like cohort studies but are done in a shorter time. They do not include many years of follow-up. Instead of looking forward in time, they look backward. In case-control studies, information is collected from cases (people who already have a certain disease) and compared with information collected from controls (people who do not have the disease). For example, a group of patients with melanoma and a group without melanoma might be asked about how they check their skin for abnormal growths and how often they check it. Based on the different answers from the two groups, the study may show that checking your skin is a useful screening test to decrease the number of melanoma cases and deaths from melanoma.

Evidence from case-control studies is not as strong as evidence from clinical trials or cohort studies.

Ecologic Studies

Ecologic studies report information collected on entire groups of people, such as people in one city or county. Information is reported about the whole group, not about any single person in the group. These studies may give some evidence about whether a screening test is useful.

The evidence from ecologic studies is not as strong as evidence from clinical trials or other types of research studies.

Expert Opinions

Expert opinions can be based on the experiences of doctors or reports of expert committees or panels. Expert opinions do not give strong evidence about the usefulness of screening tests.

_____________

This chapter includes text excerpted from Cancer Screening Overview (PDQ®)—Patient Version, National Cancer Institute (NCI), October 23, 2019.

Chapter 4 | Tests Used to Diagnose and Monitor Cancer

Chapter Contents

Section 4.1—Lab Tests and Other Procedures Used to Diagnose and Monitor Cancer

Section 4.2—Tumor Marker

Section 4.1 | Lab Tests and Other Procedures Used to Diagnose and Monitor Cancer

This section includes text excerpted from How Cancer Is Diagnosed, National Cancer Institute (NCI), July 17, 2019.

If you have a symptom or a screening test result that suggests cancer, your doctor must find out whether it is due to cancer or some other cause. The doctor may start by asking about your personal and family medical history and do a physical exam. The doctor also may order lab tests, imaging tests (scans), or other tests or procedures. You may also need a biopsy, which is often the only way to tell for sure if you have cancer.

Depending on the symptoms you have, you may have other tests, too.

Lab Tests

High or low levels of certain substances in your body can be a sign of cancer. So, lab tests of your blood, urine, or other body fluids that measure these substances can help doctors make a diagnosis. However, abnormal lab results are not a sure sign of cancer.

Some lab tests involve testing blood or tissue samples for tumor markers. Tumor markers are substances that are produced by cancer cells or by other cells of the body in response to cancer. Most tumor markers are made by normal cells and cancer cells but are produced at much higher levels by cancer cells.

Imaging Tests

Imaging tests create pictures of areas inside your body that help the doctor see whether a tumor is present. These pictures can be made in several ways:

Computerized Tomography Scan

A computerized tomography (CT) scan uses an x-ray machine linked to a computer to take a series of pictures of your organs from different angles. These pictures are used to create detailed 3-D images of the inside of your body.

Sometimes, you may receive a dye or other contrast material before you have the scan. You might swallow the dye, or it may be given by a needle into a vein. Contrast material helps make the pictures easier to read by highlighting certain areas in the body.

During the CT scan, you will lie still on a table that slides into a donut-shaped scanner. The CT machine moves around you, taking pictures.

Magnetic Resonance Imaging

Magnetic resonance imaging (MRI) uses a powerful magnet and radio waves to take pictures of your body in slices. These slices are used to create detailed images of the inside of your body, which can show the difference between healthy and unhealthy tissue.

When you have an MRI, you lie still on a table that is pushed into a long, round chamber. The MRI machine makes loud thumping noises and rhythmic beats.

Sometimes, you might have a special dye injected into your vein before or during your MRI exam. This dye, called a contrast agent, can make tumors show up brighter in the pictures.

Nuclear Scan

A nuclear scan uses radioactive material to take pictures of the inside of the body. This type of scan may also be called radionuclide scan.

Before this scan, you receive an injection of a small amount of radioactive material, which is sometimes called a tracer. It flows through your bloodstream and collects in certain bones or organs.

During the scan, you lie still on a table while a machine called a scanner detects and measures the radioactivity in your body, creating pictures of bones or organs on a computer screen or on film.

After the scan, the radioactive material in your body will lose its radioactivity over time. It may also leave your body through your urine or stool.

Bone Scan

Bone scans are a type of nuclear scan that check for abnormal areas or damage in the bones. They may be used to diagnose bone cancer or cancer that has spread to the bones (also called metastatic bone tumors).

Before this test, a very small amount of radioactive material is injected into your vein. As it travels through the blood, the material collects in abnormal areas in the bone. Areas where the material collects show up on pictures taken by a special scanner. These areas are called hot spots.

Positron Emission Tomography Scan

A positron emission tomography (PET) scan is a type of nuclear scan that makes detailed 3-D pictures of areas inside your body where glucose is taken up. Because cancer cells often take up more glucose than healthy cells, the pictures can be used to find cancer in the body.

Before the scan, you receive an injection of a tracer called radioactive glucose. During the scan, you will lie still on a table that moves back and forth through a scanner.

Ultrasound

An ultrasound exam uses high-energy sound waves that people cannot hear. The sound waves echo off tissues inside your body. A computer uses these echoes to create pictures of areas inside your body. This picture is called a sonogram.

During an ultrasound exam, you will lie on a table while a tech slowly moves a device called a transducer on the skin over the part of the body that is being examined. The transducer is covered with a warm gel that makes it easier to glide over the skin.

X-Rays

X-rays use low doses of radiation to create pictures inside your body. An x-ray tech will put you in position and direct the x-ray beam to the correct part of your body. While the images are taken, you will need to stay very still and may need to hold your breath for a second or two.

Biopsy

In most cases, doctors need to do a biopsy to diagnose cancer. A biopsy is a procedure in which the doctor removes a sample of tissue. A pathologist looks at the tissue under a microscope and runs other tests to see if the tissue is cancer. The pathologist describes the findings in a pathology report, which contains details about your diagnosis. Pathology reports play an important role in diagnosing cancer and helping decide treatment options.

The biopsy sample may be obtained in several ways:

With a needle. The doctor uses a needle to withdraw tissue or fluid. This method is used for bone marrow aspirations, spinal taps, and some breast, prostate, and liver biopsies.

With endoscopy. The doctor uses a thin, lighted tube called an endoscope to examine areas inside the body. Endoscopes go into natural body openings, such as the mouth or anus. If the doctor sees abnormal tissue during the exam, he will remove the abnormal tissue along with some of the surrounding normal tissue through the endoscope.

Examples of endoscopy exams include:

Colonoscopy, which is an exam of the colon and rectum. In this type of exam, an endoscope goes through the anus, allowing the doctor to examine the rectum and colon. If the doctor sees polyps, she will remove them and send them to a lab for testing.

Bronchoscopy, which is an exam of the trachea, bronchi, and lungs. In this type of exam, an endoscope goes through the mouth or nose and down the throat.

With surgery. A surgeon removes an area of abnormal cells during an operation. Surgery may be excisional or incisional.

In an excisional biopsy, the surgeon removes the entire area of abnormal cells. Often some of the normal tissue around these cells is also removed.

In an incisional biopsy, the surgeon removes just part of the abnormal area.

Some biopsies may require a sedative or anesthesia.

Sedatives are medicine that help you relax and stay very still or sleep during a biopsy.

Anesthesia keeps you from feeling pain. It refers to drugs or other substances that cause you to lose feeling or awareness. There are three types of anesthesia:

Local anesthesia, which causes loss of feeling in one small area of the body

Regional anesthesia, which causes loss of feeling in a part of the body, such as an arm or leg

General anesthesia, which causes loss of feeling and a complete loss of awareness that seems like a very deep sleep

After Cancer Is Diagnosed

If the biopsy and other tests show that you have cancer, you may have more tests to help your doctor plan treatment. For instance, your doctor will need to figure out the stage of your cancer. For some cancers, knowing the grade of the tumor or risk group that you fall into are important for deciding on the best treatment. Your tumor may also be tested further for other tumor or genetic markers.

Section 4.2 | Tumor Marker

This section includes text excerpted from Tumor Markers, National Cancer Institute (NCI), May 6, 2019.

What Are Tumor Markers?

A tumor marker is anything present in or produced by cancer cells or other cells of the body in response to cancer or certain benign (noncancerous) conditions that provides information about a cancer, such as how aggressive it is, whether it can be treated with a targeted therapy, or whether it is responding to treatment.

Tumor markers have traditionally been proteins or other substances that are made by both normal and cancer cells but at higher amounts by cancer cells. These can be found in the blood, urine, stool, tumors, or other tissues or bodily fluids of some patients with cancer. Increasingly, however, genomic markers such as tumor gene mutations, patterns of tumor gene expression, and nongenetic changes in tumor deoxyribonucleic acid (DNA), are being used as tumor markers.

Many different tumor markers have been characterized and are in clinical use. Some are associated with only one type of cancer, whereas others are associated with multiple different cancer types. No universal tumor marker has been found that can reveal the presence of any type of cancer.

How Are Tumor Markers Used in Cancer Care?

There are two main types of tumor markers that have different uses in cancer care: circulating tumor markers and tumor tissue markers.

Circulating tumor markers can be found in the blood, urine, stool, or other bodily fluids of some patients with cancer. Circulating tumor markers are used to:

Estimate prognosis

Detect cancer that remains after treatment (residual disease) or that has returned after treatment

Assess the response to treatment

Monitor whether a cancer has become resistant to treatment

Although an elevated level of a circulating tumor marker may suggest the presence of cancer, this alone is not enough to diagnose cancer. For example, noncancerous conditions can sometimes cause the levels of certain tumor markers to increase. In addition, not everyone with a particular type of cancer will have a higher level of a tumor marker associated with that cancer. Therefore, measurements of circulating tumor markers are usually combined with the results of other tests, such as biopsies or imaging, to diagnose cancer.

Tumor markers may also be measured periodically during cancer therapy. For example, a decrease in the level of a circulating tumor marker may indicate that the cancer is responding to treatment, whereas an increasing or unchanged level may indicate that the cancer is not responding.

Circulating tumor markers may also be measured after treatment has ended to check for recurrence (the return of cancer).

Examples of commonly used circulating tumor markers include calcitonin (measured in blood), which is used to assess treatment response, screen for recurrence, and estimate prognosis in medullary thyroid cancer; cancer antigen 125 (CA-125) (measured in blood), to monitor how well cancer treatments are working and if cancer has come back in ovarian cancer; and beta-2-microglobulin (measured in blood, urine, or cerebrospinal fluid), to estimate prognosis and follow response to treatment for multiple myeloma, chronic lymphocytic leukemia, and some lymphomas.

Tumor tissue markers are found in the actual tumors themselves, typically in a sample of the tumor that is removed during a biopsy. Tumor tissue markers are used to:

Diagnose, stage, and/or classify cancer

Estimate prognosis

Select an appropriate treatment (e.g., treatment with a targeted therapy)

In some types of cancer, the level of a tumor marker reflects the stage (extent) of the disease and/or the patient’s prognosis (likely outcome or course of disease). An example is alpha-fetoprotein, which is measured in blood to assess stage, estimate prognosis, and follow response to treatment of germ cell tumors.

Tumor markers may be measured before treatment to help doctors plan the appropriate therapy. For example, some tests, called companion diagnostics, which have been developed alongside their respective targeted therapy drug, are used to determine whether treatment with a particular targeted therapy is appropriate. Some of these tests measure how much of the tumor marker is present; others detect the presence of a specific marker, such as a gene mutation.

Some tumor tissue markers are targets for specific targeted therapies. However, not all targets of targeted therapies are tumor markers that are tested in patients.

Examples of commonly used tumor tissue markers include estrogen receptor and progesterone receptor (breast cancer), used to determine whether treatment with hormone therapy and some targeted therapies is appropriate; EGFR gene mutation analysis (nonsmall-cell lung cancer), to help determine treatment and estimate prognosis; and programmed death-ligand 1 (PD-L1) (many cancer types), to determine whether treatment with a type of targeted therapy called an immune checkpoint inhibitor is appropriate.

How Are Tumor Markers Measured?

A doctor takes a sample of tumor tissue or bodily fluid and sends it to a laboratory, where various methods are used to measure the level or presence (or absence) of the tumor marker.

If the tumor marker is being used to determine whether treatment is working or whether there is a recurrence, the marker’s level will be measured in multiple samples taken at different times during and after treatment. Usually serial measurements, which show how the level of a marker is changing over time, are more meaningful than a single measurement.

Some markers, such as the presence or absence of a particular genetic alteration that makes a tumor a candidate for treatment with a specific targeted therapy, do not themselves change over time. However, the proportion of tumor cells that have that alteration may change during and after treatment.

Does the National Cancer Institute Have Guidelines for the Use of Tumor Markers?

The National Cancer Institute (NCI) does not have guidelines for the use of tumor markers. However, some national and international organizations have guidelines for the use of tumor markers for some types of cancer:

The American Society of Clinical Oncology (ASCO) has developed and published clinical practice guidelines on a variety of topics, including tumor markers for breast cancer, colorectal cancer, lung cancer, and others.

The National Academy of Clinical Biochemistry (NACB) publishes laboratory medicine practice guidelines, including the Use of Tumor Markers in Clinical Practice: Quality Requirements, which focuses on the appropriate use of tumor markers for specific cancers.

What Tumor Markers Are Currently Being Used, and for Which Cancer Types?

A number of tumor markers are currently being used for a wide range of cancer types. Although most of these can be tested in laboratories that meet standards set by the Clinical Laboratory Improvement Amendments (CLIA), some cannot be and may, therefore, be considered experimental.

Can Tumor Markers Be Used in Cancer Screening?

Because tumor markers can be used to predict the response of a tumor to treatment and for prognosis, researchers have hoped that they might also be useful in screening tests that aim to detect cancer early, before there are any symptoms.

However, although tumor markers are extremely useful for determining whether a tumor is responding to treatment or assessing whether it has recurred, no tumor marker identified to date is sufficiently sensitive (that is, able to correctly identify people who have the disease) or specific (that is, able to correctly identify people who do not have the disease) to screen for cancer.

For example, until recently, the prostate-specific antigen (PSA) test, which measures the level of PSA in the blood, was used routinely to screen men for prostate cancer. However, an increased PSA level can be caused by benign prostate conditions as well as by prostate