Patients who have recently been diagnosed with cancer may feel overwhelmed, out of control or even in shock. The best way to overcome and alleviate these feelings is to become more educated about the type of cancer and treatment options available. It is important to remember that very few cancers require emergency treatment, so you will have some time to learn about your diagnosis and treatment options. You will also be able to ask questions and even request a second opinion before treatment is required. This section of our website has been designed to help our patients address any initial questions they might have before moving forward with treatment options.
- What is Cancer?
- Diagnosing Cancer
- Introduction to Cancer Treatment
- Optimizing Your Treatment
- Questions to Ask Your Doctor about Cancer Treatment
- A Word about Clinical Trials
- The Importance of a Second Opinion
- The Role of Caregivers
What is Cancer?
Cancer is not one disease, but many diseases that occur in different areas of the body. Each type of cancer is characterized by the uncontrolled growth of cells. Under normal conditions, cell reproduction is carefully controlled by the body. However, these controls can malfunction, resulting in abnormal cell growth and the development of a lump, mass, or tumor. Some cancers involving the blood and blood-forming organs do not form tumors but circulate through other tissues where they grow.
A tumor may be benign (non-cancerous) or malignant (cancerous). Cells from cancerous tumors can spread throughout the body. This process, called metastasis, occurs when cancer cells break away from the original tumor and travel in the circulatory or lymphatic systems until they are lodged in a small capillary network in another area of the body. Common locations of metastasis are the bones, lungs, liver, and central nervous system.
The type of cancer refers to the organ or area of the body where the cancer first occurred. Cancer that has metastasized to other areas of the body is named for the part of the body where it originated. For example, if breast cancer has spread to the bones, it is called “metastatic breast cancer” not bone cancer.
How did I get cancer?
Although every patient and family member wants to know the answer to this question, the reason people develop cancer is not well understood. There are some known carcinogens (materials that can cause cancer), but many are still undiscovered. We do not know why some people who are exposed to carcinogens get cancer and others do not. The length and amount of exposure are believed to affect the chances of developing a disease. For example, as exposure to cigarette smoking increases, the chance of developing lung cancer also increases. Genetics also plays an important role in whether an individual develops cancer. For example, certain types of breast cancer have a genetic component.
Following your diagnosis of cancer, your reaction may be one of shock and disbelief. If you have been told that chemotherapy or radiation therapy are an important part of your treatment, many unpleasant images may come to mind. But as you move beyond that initial shock to begin the journey of surviving your cancer, you have many good reasons to be optimistic. Medicine has made—and continues to make—great strides in treating cancer and in making cancer treatment more tolerable, both physically and emotionally.
No one would call cancer a normal experience, but by proactively managing aspects of your treatment, you can maintain a sense of normalcy in your life. Fighting cancer is not a challenge you face alone. It’s a team effort that involves family, friends, and your healthcare team. Don’t overlook the strength that can come from having your support network by your side.
What is a cancer diagnosis?
Diagnosis is not the same as detection. Cancer may be detected when symptoms or abnormalities, such as a lump or growth, are recognized by a patient or doctor. After a cancer is detected, it still must be carefully diagnosed.
A diagnosis is an identification of a particular type of cancer. When making a diagnosis, the initial signs and symptoms are investigated through a variety of tests in order to identify whether cancer is causing them and, if so, what type of cancer it is. For example, breast cancer may be detected when a patient notices a lump, but it must be carefully evaluated with a number of tests in order to determine an accurate diagnosis. The diagnosis describes what type of breast cancer it is (i.e. “ductal” if it started in the ducts of the breast or “lobular” if it started in the lobes) and how advanced it is.
What is a cancer stage?
Following a diagnosis of cancer, the most important step is to accurately determine the stage of cancer. Stage describes how far the cancer has spread. (Some cancers, such as leukemia, may not be staged.) Each stage of cancer may be treated differently. In order for you to begin evaluating and discussing treatment options with your healthcare team, you need to know the correct stage of your cancer.
There are many staging systems, but TNM is the most common. “T” refers to the size of the tumor, “N” to the number of lymph nodes involved, and “M” to metastasis. TNM staging measures the extent of the disease by evaluating these three aspects and assigning a stage, which is usually between 0-4. Generally, the lower the stage, the better the treatment prognosis (outcome).
- Stage 0 – precancer
- Stage 1 – small cancer found only in the organ where it started
- Stage 2 – larger cancer that may or may not have spread to the lymph nodes
- Stage 3 – larger cancer that is also in the lymph nodes
- Stage 4 – cancer in a different organ from where it started
How is prognosis determined?
The probable course and/or outcome of the cancer is called the prognosis. Identifying factors that indicate a better or worse prognosis may help you and your doctor plan your treatment. There are many factors that help determine your prognosis. Some of these include:
- Your age
- Your level of physical fitness
- Size of your cancer
- Stage of your cancer
- Aggressiveness of your cancer (cancer cells that are growing and dividing rapidly are considered more aggressive)
Your doctor will evaluate all possible factors to determine your prognosis.
Recently, the genetic make-up of cancer is being increasingly recognized as an important prognostic factor. For example, some genes have been associated with an aggressive course or tendency to recur. Identification of these in an early stage cancer may indicate a poor prognosis. Some research suggests that the genetic make-up of the cancer may be even more important for determining prognosis than the stage of the cancer.
How is cancer diagnosed?
Diagnosing cancer involves the use of a variety of tests that provide details about abnormal cells, which may have been detected through routine medical examinations, self-examination, or reported symptoms. More information about these cells must be gathered in order to identify them as malignant (cancerous) or non-malignant (non-cancerous), and if they are malignant, to determine how serious (aggressive) the particular cancer cells are. Aggressive cancers grow and spread more quickly than less-aggressive or “indolent” cancers. There are many types of tests specifically designed to evaluate cancer:
- A pathology report is based on observation of abnormal cells under a microscope.
- Diagnostic imaging involves visualization of abnormal masses using high tech machines that create images, such as x-rays, computed tomography (CT), positron emission test (PET), magnetic resonance imaging (MRI), and combined PET/CT.
- Blood tests measure substances in the blood that may indicate how advanced the cancer is or other problems related to the cancer.
- Tumor marker tests detect substances in blood, urine, or other tissues that occur in higher than normal levels with certain cancers.
- Special laboratory evaluation of DNA involves the identification of the genetic make-up—the DNA—of the abnormal cells.
For more information about diagnostic tests, visit the Testing Center.
How does diagnosis determine treatment?
Historically, a combination of pathological assessment (laboratory evaluation using a microscope) and diagnostic imaging has been used to identify the type of cancer and its stage, and then the treatment. Stage indicates how extensive the cancer is and how much it has spread. Staging usually involves determining the size of the primary tumor and evaluating whether it has remained in the tissue in which it started, whether it has invaded other nearby organs or tissues, and whether cancer cells have spread to distant locations in the body. The cancer is then assigned a stage on a predetermined scale of numbers and letters, for example stage I, II, IIIa, IIIb, IV, etc. The higher number and letter combination indicates more extensive spread, and therefore a more serious condition. Treatment is often selected based on the stage of disease. Higher stage cancers typically receive very aggressive treatments and lower stage disease less aggressive treatment.
However, research has indicated that identifying the stage of disease may not be the most accurate technique for determining how aggressive it is. For example, some early stage diseases may recur or progress even after treatment, while some late stage cancers may stay in remission. These findings suggest that there may be factors other than how the cancer looks under a microscope and how far it has spread at the time of diagnosis that may better indicate the likelihood that a given cancer will recur and/or progress.
Human genomics, which is the study of the entire genetic material of humans, has provided invaluable tools for identifying the genetic components of cancers. The mapping of the human genome, which consists of 30,000 to 70,000 genes, has laid the ground work for understanding the role those genes play in human health and disease. Cancer is many different diseases; however, one aspect of all cancers that is similar is damage to the DNA resulting in uncontrolled cell growth. Identifying the genes for each cancer type that are involved in the capacity grow and spread may provide valuable prognostic information.
As improvements are made in the special laboratory techniques used to identify the genetic make-up of cancers, this genetic information may become a better predictor of cancer aggressiveness and outcome than stage, which has been the diagnostic indicator of choice in the past. Additionally, this genetic information will likely play an increasing role in directing treatment. Specifically, the genes involved in each cancer may indicate more aggressive treatment for some cancers and less aggressive treatment for others.
Introduction to Cancer Treatment
Overview of Cancer Treatments
Choice of cancer treatment is influenced by several factors, including the specific characteristics of your cancer; your overall condition; and whether the goal of treatment is to cure your cancer, keep your cancer from spreading, or to relieve the symptoms caused by cancer. Depending on these factors, you may receive one or more of the following:
- Radiation therapy
- Hormonal therapy
- Targeted therapy
- Biological therapy
One or more treatment modalities may be used to provide you with the most effective treatment. Increasingly, it is common to use several treatment modalities together (concurrently) or in sequence with the goal of preventing recurrence. This is referred to as multi-modality treatment of the cancer.
Surgery is used to diagnose cancer, determine its stage, and to treat cancer. One common type of surgery that may be used to help with diagnosing cancer is a biopsy. A biopsy involves taking a tissue sample from the suspected cancer for examination by a specialist in a laboratory. A biopsy is often performed in the physician’s office or in an outpatient surgery center. A positive biopsy indicates the presence of cancer; a negative biopsy may indicate that no cancer is present in the sample.
When surgery is used for treatment, the cancer and some tissue adjacent to the cancer are typically removed. In addition to providing local treatment of the cancer, information gained during surgery is useful in predicting the likelihood of cancer recurrence and whether other treatment modalities will be necessary.
Learn more about surgery.
Chemotherapy is any treatment involving the use of drugs to kill cancer cells. Cancer chemotherapy may consist of single drugs or combinations of drugs, and can be administered through a vein, injected into a body cavity, or delivered orally in the form of a pill. Chemotherapy is different from surgery or radiation therapy in that the cancer-fighting drugs circulate in the blood to parts of the body where the cancer may have spread and can kill or eliminate cancers cells at sites great distances from the original cancer. As a result, chemotherapy is considered a systemic treatment.
More than half of all people diagnosed with cancer receive chemotherapy. For millions of people who have cancers that respond well to chemotherapy, this approach helps treat their cancer effectively, enabling them to enjoy full, productive lives. Furthermore, many side effects once associated with chemotherapy are now easily prevented or controlled, allowing many people to work, travel, and participate in many of their other normal activities while receiving chemotherapy.
Learn more about chemotherapy treatment and the management of side effects.
Radiation therapy, or radiotherapy, uses high-energy rays to damage or kill cancer cells by preventing them from growing and dividing. Similar to surgery, radiation therapy is a local treatment used to eliminate or eradicate visible tumors. Radiation therapy is not typically useful in eradicating cancer cells that have already spread to other parts of the body. Radiation therapy may be externally or internally delivered. External radiation delivers high-energy rays directly to the tumor site from a machine outside the body. Internal radiation, or brachytherapy, involves the implantation of a small amount of radioactive material in or near the cancer. Radiation may be used to cure or control cancer, or to ease some of the symptoms caused by cancer. Sometimes radiation is used with other types of cancer treatment, such as chemotherapy and surgery, and sometimes it is used alone.
For more information, go to Radiation Therapy.
Hormones are naturally occurring substances in the body that stimulate the growth of hormone sensitive tissues, such as the breast or prostate gland. When cancer arises in breast or prostate tissue, its growth and spread may be caused by the body’s own hormones. Therefore, drugs that block hormone production or change the way hormones work, and/or removal of organs that secrete hormones, such as the ovaries or testicles, are ways of fighting cancer. Hormone therapy, similar to chemotherapy, is a systemic treatment in that it may affect cancer cells throughout the body.
A targeted therapy is one that is designed to treat only the cancer cells and minimize damage to normal, healthy cells. Cancer treatments that “target” cancer cells may offer the advantage of reduced treatment-related side effects and improved outcomes.
Conventional cancer treatments, such as chemotherapy and radiation therapy, cannot distinguish between cancer cells and healthy cells. Consequently, healthy cells are commonly damaged in the process of treating the cancer, which results in side effects. Chemotherapy damages rapidly dividing cells, a hallmark trait of cancer cells. In the process, healthy cells that are also rapidly dividing, such as blood cells and the cells lining the mouth and GI tract are also damaged. Radiation therapy kills some healthy cells that are in the path of the radiation or near the cancer being treated. Newer radiation therapy techniques can reduce, but not eliminate this damage. Treatment-related damage to healthy cells leads to complications of treatment, or side effects. These side effects may be severe, reducing a patient’s quality of life, compromising their ability to receive their full, prescribed treatment, and sometimes, limiting their chance for an optimal outcome from treatment.
Biological therapy is referred to by many terms, including immunologic therapy, immunotherapy, or biotherapy. Biological therapy is a type of treatment that uses the body’s immune system to facilitate the killing of cancer cells. Types of biological therapy include interferon, interleukin, monoclonal antibodies, colony stimulating factors (cytokines), and vaccines.
Personalized Cancer Care
There is no longer a “one-size-fits-all” approach to cancer treatment. Even among patients with the same type of cancer, the behavior of the cancer and its response to treatment can vary widely. By exploring the reasons for this variation, researchers have begun to pave the way for more personalized cancer treatment. It is becoming increasingly clear that specific characteristics of cancer cells and cancer patients can have a profound impact on prognosis and treatment outcome. Although factoring these characteristics into treatment decisions makes cancer care more complex, it also offers the promise of improved outcomes.
The idea of matching a particular treatment to a particular patient is not a new one. It has long been recognized, for example, that hormonal therapy for breast cancer is most likely to be effective when the breast cancer contains receptors for estrogen and/or progesterone. Testing for these receptors is part of the standard clinical work-up of breast cancer. What is new, however, is the pace at which researchers are identifying new tumor markers, new tests, and new and more targeted drugs that individualize cancer treatment. Tests now exist that can assess the likelihood of cancer recurrence, the likelihood of response to particular drugs, and the presence of specific cancer targets that can be attacked by new anti-cancer drugs that directly target individual cancer cells.
To learn more about personalized cancer care for two common types of cancer, visit Types of Cancer
Optimizing Your Treatment
By proactively understanding and managing aspects of your treatment, you can help ensure the best possible outcome from treatment and maintain some degree of control in your life. Things you can do to optimize treatment of cancer are:
- Get informed
- Stay organized
- Discuss the effectiveness of treatment
- Work with your physician to select the best treatment for you
Don’t forget that fighting cancer is not a challenge you should face alone. It is a team effort that involves family, friends, and your healthcare team. Don’t overlook the strength that can come from having your support network by your side. In order to ensure optimal treatment, consider the following:
Get informed: A new diagnosis of cancer can be a shock, making you feel out of control and overwhelmed. Getting informed can help alleviate these feelings. Seek out many resources to investigate your treatment options for your type and stage of cancer. Resources should include your healthcare team, second opinions, books, the internet, and other patients with your disease. As you learn, identify the specific questions that only your doctor can answer.
Most importantly, work toward understanding your diagnosis and stage of disease, goals of therapy, treatment plan, benefits of treatment, and possible side effects. Following a diagnosis of cancer, the most important step is to accurately define the stage of your disease. Staging is a system that describes how far the cancer has spread. (Keep in mind that some cancers, such as leukemia, may not be staged.) Each stage of cancer may be treated differently. In order for you to begin evaluating and discussing treatment options with your healthcare team, you need to find out from your doctor the correct stage of your cancer.
Stay organized: Develop a system for keeping all the information that you gather organized, such as laboratory and test results, admissions and consultation information, and additional instructions. Keep a folder or three-ring binder with all your information in one location.
Discussing the effectiveness of treatment: It is important that you and your caregivers are able to evaluate treatment options and to understand how cancer treatments are compared so that you can work with your healthcare team to make informed treatment choices. Understanding the goals of a specific therapy, as well as the risk and benefits it poses, will help you decide which treatment is most appropriate for your situation. Patients typically receive cancer treatment in order to cure the cancer, prolong the duration of their life or alleviate symptoms caused by the cancer and improve their quality of life. These potential benefits of treatment must be balanced against the risks of treatment. Some risks posed by various cancer treatments may include time away from family and friends, uncomfortable side effects of therapy and/or long-term complications or death.
The most common term used to describe the effectiveness of cancer treatment is remission. Remission means that the cancer has disappeared and can no longer be measured using existing technology. Oncologists use the terms partial and complete remission to describe partial or complete disappearance of cancer after treatment. A cancer cannot be cured if a remission is not obtained; however, a remission does not always ensure that a cancer is cured. The best ways to evaluate the benefits of treatment are to examine the duration of remission, survival, and disease-free survival (cure). Since it often takes many years to determine whether a new treatment is better than a previous treatment, remission rates may be useful for comparing therapies when patients have not been evaluated long enough to know whether the chance of cure or survival is improved.
Treatment of cancer is associated with risks. It is important that you evaluate the risks and benefits of treatment within the context of the overall goal of receiving cancer therapy.
Cancer treatment may be inconvenient, prolonged, or unavailable close to home. These are important considerations when evaluating treatment options, but not typically mentioned in medical journals reporting the results and benefits of new treatments.
Select your optimal treatment: Cancer treatment varies depending upon your type of cancer, stage of cancer, and overall condition. Additionally, treatment options may vary depending on whether or not the goal of treatment is to cure the cancer, keep the cancer from spreading, or to relieve the symptoms caused by cancer. You and your physician will consider all of these factors as you work on selecting your optimal treatment.
Questions to Ask Your Doctor about Cancer Treatment
Being educated and informed will help you make the best decisions about your cancer treatment. Get all the information you can as early as possible concerning your evaluation, treatment, and possible side effects. The sooner you know about side effects and possible treatments, the more likely you are to protect yourself against them, or manage them more effectively.
Your doctor and nurse are your best sources of information, but you must remember to ask questions. There is no such thing as a dumb question. Don’t be afraid to ask anything that is on your mind. To make the most of your opportunities to learn from your health care providers, read as much as you can and make a list of questions before each appointment. Also, ask family, friends, and your support team to help you remember the questions. These approaches will help you talk more effectively with your doctor or nurse. Finally, you or your caregiver should consider taking notes during your visit to ensure you remember what you learned.
The following are some questions, grouped by topic, which you may wish to ask your nurse or physician:
- Do you typically treat patients with my diagnosis?
- What stage is my cancer?
- Is there anything unique about my cancer that makes my prognosis better or worse?
- Should I get a second opinion?
- What is the goal of treatment?
- To cure my cancer or stop it from growing?
- What are my treatment options?
- How can each treatment option help me achieve my goal of therapy?
- What risks or potential side effects are associated with each treatment?
- What research studies (“clinical trials”) are available?
- Are there any clinical trials that are right for me?
- How long will I receive treatment, how often, and where?
- How will it be given?
- How will I know if the treatment is working?
- How might a disruption in my chemotherapy dose or timing affect my results?
- How and when will I be able to tell whether the treatment is working?
- What are the names of all the drugs I will be taking?
- Can I talk with another of your patients who has received this treatment?
- Are there any resources or Web sites you recommend for more information?
- What types of lab tests will I need?
- Will I need x-rays and scans?
- Can you explain the results of my complete blood count (CBC)?
- Are there tests for the genetic make-up of my cancer?
- Will I benefit from having my cancer evaluated for its genetic make-up?
- How frequently will I get the tests?
Side Effects of Treatment
- What possible side effects should I prepare for?
- When might they start?
- Will they get better or worse as my treatment goes along?
- How can I prepare for them or lessen their impact?
- Are there treatments that can help relieve the side effects? What are they? Do you usually recommend or prescribe them?
- Which risks are most serious?
- Will I require blood transfusions? Why?
- How can I best monitor myself for complications related to either my disease or my treatment?
Protecting Against Infection
- Will my type of chemotherapy put me at risk for a low white blood cell count and infection?
- Can I help protect myself against infection right from the start of chemotherapy, instead of waiting until problems develop?
- Am I at special risk for infection?
- What are the signs of infection?
- How serious is an infection?
- How long will I be at risk for infection?
- What should I do if I have a fever?
- How are infections treated?
- How will my cancer treatment affect my usual activities?
- Will I be able to work?
- Will I need to stay in the hospital?
- Will I need someone to help me at home?
- Will I need help taking care of my kids?
- Are there any activities I should avoid during my chemotherapy?
What to Expect After Treatment
- What happens after I complete my treatment?
- How can I best continue to monitor myself for complications related to either my disease or my treatment?
- What kind of lab tests will I need?
- How frequently should I get those lab tests?
- What types of x-rays and scans will I need?
- How often do I need to come in for checkups?
- When will you know if I am cured?
- What happens if my disease comes back?
A Word about Clinical Trials
When you or a loved one are diagnosed with cancer, it is important to know all of the treatment options available in order to make the best decision about your cancer treatment. This may include clinical trials, which are research studies designed to evaluate new cancer treatment options. Clinical trials test the safety and effectiveness of treatments, many of which are only available through participating in a clinical trial. Trials evaluate new anti-cancer drugs, unique approaches to surgery and radiation therapy, and new combinations of treatments. In the United States, the Food and Drug Administration (FDA) oversees the conduct of clinical trials.
What does the FDA do?
The FDA is a government agency that is responsible for making certain that the food we eat and the drugs we take are safe. The FDA does not make drugs or directly test drugs to determine if they are safe and effective. The FDA’s role is to oversee the research conducted by pharmaceutical companies, university research centers, and physicians to make certain that federal regulations governing research are being followed.
The FDA requires that the drug company’s plan must be reviewed by community research review board (IRB), and that patients participating in the clinical trial are informed about the trial and consent to participate. Once the drug company has completed its clinical trials, the data are tabulated and submitted to the FDA in an application known as a New Drug Application (NDA). The FDA evaluates the outcomes reported in the NDA and determines whether the new drug will be approved and made available to patients in the United States. In order to be approved, the drug must be safe and effective.
Can I get a drug before it is approved by the FDA?
Until a drug receives FDA approval, it cannot be sold and the drug company may only provide it to patients through clinical trials. Furthermore, each clinical trial has specific criteria that patients must meet to be included. Occasionally, a cancer patient who is not eligible for a clinical trial may receive a promising unapproved drug, if the patient’s doctor, the drug company, and FDA each agree. The FDA’s primary interest is helping to ensure that the drug company’s research will not subject cancer patients in the clinical trial to undue risks. The FDA drug review process guarantees that the risks and benefits of a cancer drug have been carefully considered before it is approved and helps to ensure the public that marketed drugs are safe and effective.
How can I learn more about a drug that has been approved?
The FDA requires that all drugs have an information document for healthcare providers and consumers called a “package insert.” This document is a summary of the essential scientific information needed for the safe and effective use of the drug. You can ask your doctor for this information. Also, most package inserts are available on the internet. A package insert typically includes the following information:
- Chemical structure
- Information about how the body absorbs, distributes, metabolizes, and excretes the drug
- Results from some clinical trials
- What specific circumstances the drug is used for
- Dosing and administration schedules
- Side effects
It is important to understand that once it has been determined that a drug is safe and it is approved by the FDA, physicians often use the drug for the treatment of medical conditions other than the specific condition that the FDA has approved it for.
Are all clinical trials the same?
Development of new anticancer drugs and treatment strategies occurs in four phases. Each phase is designed to determine specific information about the potential new treatment such as its risks, safety, and effectiveness compared to standard therapy. The hope is that the new therapy will be an improvement over the previous standard therapy.
Phase I Trials: This phase is probably the most important step in the development of a new drug or therapy. Phase I therapy may produce anti-cancer effects and a small number of patients may benefit, however, the primary goals of this phase are to determine safety issues, which include:
- The maximum tolerated dose of the treatment,
- The manner in which the drug works in the body,
- The toxic side effects related to different doses, and
- Whether toxic side effects are reversible.
Phase I trials usually involve a small number of patients for whom other standard therapies have failed or no known alternative therapy is available. Upon completion of phase I trials, the information that has been gathered is used to begin phase II trials.
Phase II Trials: Phase II trials are designed to determine the effectiveness of the treatment in a specific patient population at the dose and schedules determined in phase I. These trials usually require a slightly higher number of patients than phase I trials. In general, all of the patients participating in a phase II trial will receive the treatment that is being investigated. Drugs or therapies that are shown to be active in phase II trials may become standard treatment or be further evaluated for effectiveness in phase III trials.
Phase III Trials: Phase III trials compare a new drug or therapy with a standard therapy in a randomized and controlled manner in order to determine proof of effectiveness. Phase III trials require a large number of patients to measure the statistical validity of the results because patient age, sex, race, and other unknown factors could affect the results. To obtain an adequate number of patients, several physicians (investigators) from different institutions typically participate in phase III clinical trials.
Phase IV Trials: Once the drug or treatment is approved and becomes part of standard therapy, the manufacturer of the drug may elect to initiate phase IV trials. This phase includes continued evaluation of the treatment effectiveness and monitoring of side effects as well as implementing studies to evaluate usefulness in different types of cancers.
There is currently no single source of all clinical trials. The following are clinical trial resources that patients may wish to visit:
The Importance of a Second Opinion
A second opinion is an important part of becoming educated about your cancer and your treatment options. The more you can learn about your diagnosis and your treatment options, the better chance you have of receiving the most appropriate treatment. Cancers are now more treatable than they once were, but there are also many more treatment options and more complicated procedures. Getting a second opinion will help you understand these options and help you make an informed decision about which is best for you. Second opinions will not offend competent physicians. Second opinions will, however, provide reassurance to you and your family and ultimately allow you to receive the most appropriate therapy.
What is a Second Opinion?
A second opinion is a review of the cancer diagnosis and the treatment recommendations of the physician who is treating the cancer by another, independent physician. Either the patient or the primary physician can initiate the process of getting a second opinion. Usually, patients obtain a second opinion after being referred to a second physician or to a special team of experts in a cancer center, called a multidisciplinary team. This doctor or team of doctors will review the following:
- Pathology report (how the cancer looks under the microscope),
- The extent of cancer
- The physical condition of the patient
- The proposed treatment
The doctor(s) then communicate their opinion regarding treatment to both the patient and the primary physician.
Second opinions are more likely to be comprehensive, or inclusive of every possible perspective, when performed in a cancer center with a multidisciplinary team, which usually includes surgeons, oncologists, radiation therapists, and sub-specialist oncologists.
Why Do I Need a Second Opinion?
A second opinion is part of the education process that is critical for cancer patients. The treatment of cancer has evolved tremendously in the recent past. As a result, many cancers are now more treatable than they once were, especially if the appropriate initial treatment is selected. In order to receive appropriate treatment, patients must understand the type of cancer they have and the treatment options that are available. However, there are also many more options for treatment and these options are more complicated than in the past. For these reasons and others, it is advantageous to seek more than one opinion about how your cancer can be treated. Also, a second opinion provides the opportunity to get information from someone other than the physician who will be directing treatment, which is usually the main source of information for most patients. Second opinions are a common practice in any area of medicine that is complex and that has multiple treatment options available.
Is Getting a Second Opinion Considered “Bad Etiquette”?
Patients, relatives and friends need to keep in mind that second opinions are a normal part of cancer management and they should not be concerned about hurting the feelings of the primary physician. If you decide to obtain an independent second opinion, it is important to communicate with the primary physician not only to obtain needed information for review, but also to keep the treating physician informed. Most physicians welcome the opportunity to have another consultant review and approve their care decisions, or perhaps suggest another treatment that may be better. There are instances when a patient may disagree with their physician and will need to change physicians, but this is not the main purpose of a second opinion. Most of the time, you simply need to make sure you are getting the best advice.
Who Pays for a Second Opinion?
One of the problems with second opinions is that insurers may not cover the expense. However, many insurance and health care companies do pay for such opinions and acknowledge the importance of second opinions. In some situations, insurers will even insist on a second opinion. This is often the case when the primary physician advises an expensive treatment.
The best protection for cancer patients who are Health Maintenance Organization (HMO) members is to seek a second opinion even if she or he has to pay for it. HMOs usually try to diagnose and treat patients within their system because the more money the HMO spends on second opinions and treatment outside the HMO, the less money there is available for operation costs and profits. This may cause a conflict of interest between the patient and the HMO, especially if very expensive treatment is only available outside the HMO system. HMO members may also be discouraged from trying expensive treatments that have only a small chance of success, even if that chance is real. For these reasons, it is a good idea for HMO members to get a second opinion and make sure they are informed about clinical trials or other promising new treatments. Most reputable HMOs can, however, deliver state of the art treatment for most cancers. If you are considering undergoing a specialized treatment, such as cancer surgery, within your HMO, it is important to inquire about the number of such procedures performed each year by the HMO and the results.
Who Should Get a Second Opinion?
Although the specific situations in which a second opinion is most useful have not been defined, there are clearly situations where a second opinion would be helpful and most patients would benefit. These may include:
- A poorly understood or communicated diagnosis
- An initial diagnosis by a non-cancer specialist
- A diagnosis by a cancer sub-specialist
- Apparent lack of treatment options
- A treatment plan that involves a clinical trial
- Rare cancers
- A treatment plant that involves surgery as primary treatment
- A diagnosis that has been made at a small or rural hospital
- A treatment plan that involves aggressive treatment
- A treatment plan that involves specialized treatment
Poorly understood diagnosis: Patients who feel that they may not fully understand the diagnosis and their treatment options should consider a second opinion. Another physician may communicate in a way that the patient can better understand, or simply hearing the diagnosis a second time may help the patient overcome any denial they may have.
Initial diagnosis by a non-cancer specialist: Patients who have been diagnosed by a non-cancer specialist benefit from a second opinion. In the United States, doctors other than oncologists often diagnose and treat patients with cancer. Cancers are diagnosed and treated by family doctors, internists, pediatricians, gynecologists, urologists, ear-nose-and-throat doctors and other non-cancer specialists. In most instances, appropriate therapy is administered. However, patients not treated by specialists in cancer treatment should consider seeking a second opinion. In some situations, physicians will not refer patients for a second opinion because they may lose control and revenue from treatment, they may be threatened by having their patient believe some other doctor is more knowledgeable, or often they are just too busy to consult other physicians. The patients of these types of physicians are probably the most in need of a second opinion.
Diagnosis by a cancer sub-specialist: Many types of cancers are treated by several different types of cancer specialists. For example, prostate cancer may be treated by urologists who are surgeons, radiation oncologists, and/or medical oncologists who use drug treatment. Each specialist may think that their treatment is the best treatment for the patient. An example of this is in the localized prostate cancer, where:
- Surgeons almost invariably advise surgery (radical prostatectomy)
- Radiation oncologists invariably advise some form of radiation therapy.
For this reason, a patient with cancers that are treated by sub-specialists may want to consult an oncologist (general cancer doctor) or multidisciplinary team to obtain a thorough understanding of treatment options. Seeking a second opinion from a different type of specialist can be informative but it can also, unavoidably, create confusion about treatment options. The best way to resolve this confusion is to gather and use all of the available information to making an informed decision.
Apparent lack of treatment options: A second opinion can be useful in some patients who are told that there is no appropriate treatment for their cancer and that there is no hope of survival or relief of symptoms from the cancer. Such patients have nothing to lose by seeking a second opinion. In this situation, patients should seek out physicians and institutions that specialize in treating their type of cancer and perform clinical trials. Often, this is accomplished by finding out who is performing clinical trials of novel treatments for the type of cancer in question. Here again, information available on the Internet can help locate such physicians and institutions.
A treatment plan that involves a clinical trial: When participation in a clinical trial is recommended by the treating physician, a second opinion should probably be obtained to make sure this is the appropriate treatment. There are many types of clinical trials, some of which may benefit a patient with a specific cancer and some of which may not. Doctors participate in cancer research by enrolling their patients in clinical trials; however, they often have trouble finding patients to participate. Unconsciously, such doctors may suggest a trial that may not represent the best treatment for a particular patient.
While a clinical trial may be your best treatment option, you should consider all possible clinical trials before selecting the one your treating physician recommends. Two sources of ongoing information regarding clinical trials include comprehensive, easy-to-use listing services provided by the National Cancer Institute (cancer.gov) and CancerConnect.com.
Rare cancers: When dealing with a rare cancer, it is usually best to seek a second opinion, unless the diagnosis is made at a center that specializes in the treatment of this cancer. If a local expert is available, treatment should probably be switched to that doctor. If the expert is far away, which is likely, the home physician can usually coordinate treatment by phone or e-mail. Even if your cancer isn’t rare, you may benefit from finding someone with a special interest in your specific type of cancer. For instance, kidney cancer is not really rare, but it’s not common either. Usually patients with kidney cancer are treated on clinical trials carried out in one of several large institutions. This is because the clinical trial may require specialized treatment and there are not enough patients with kidney cancer at one institution to make the research meaningful.
Surgery as primary treatment: If there is any doubt about the operability or inoperability of a cancer, a second opinion is in order. In this situation, patients are urged to seek second opinions in institutions where large numbers of patients are treated. For instance, esophageal cancer may be considered inoperable in a hospital that performs one such procedure a month, but may be considered operable in an institution that performs several per day. Just as important can be the determination that a cancer deemed operable is in fact inoperable and surgery would be harmful.
Small hospitals and rural practices: Patients who live in a rural area and get treatment at a small hospital probably should get a second opinion from a larger medical center before treatment is initiated. Although smaller hospitals typically deliver excellent treatment, it is prudent to ensure that the recommended treatment is appropriate and can be safely administered. Small and rural hospitals may not see a large volume of cancer patients, and while they are usually fully capable of delivering treatment, it is best to seek a second opinion to help determine what the appropriate treatment is. Sometimes, the recommended treatment will determine whether a patient should receive their treatment locally or travel to a larger medical center. For example, most small hospitals can effectively deliver chemotherapy; whereas patients requiring a complicated procedure, such as a stem cell transplant, may need to travel to a larger institution that treats a higher volume of patients.
Aggressive treatment: Most of the cancers that can be cured with chemotherapy (acute leukemias, some lymphomas, testicular cancers) require intensive treatment, such as high doses of chemotherapy or radiation therapy, and a second opinion is useful for ensuring that the proper intensity will be used to achieve a cure, and not just a temporary remission. Occasionally, oncologists treat patients with curable cancer with lower doses of chemotherapy in order to decrease side effects. This practice can seriously compromise the chance for cure. Also, intensive treatment requires rigid adherence to prescribed doses of drugs to ensure that optimal treatment is delivered, careful monitoring for complications, and aggressive supportive care to manage side effects. In many instances, intensive treatment can be administered locally, but such patients are usually best treated in centers that use state of the art protocols (clinical trials) and treat large numbers of patients. If you are considering an aggressive treatment, you should determine how many patients are treated per year at your local treatment center and what the results are. Ask your treating physicians for their own results and not results from patients treated in other institutions.
Specialized treatment: Not all medical centers offer the specialized treatments that may offer the best results for some patients. In these cases, a second opinion may be in order. For example, bone marrow or blood stem cell transplants may offer the best chance for cure or control of the cancer for patients with blood and lymphoid cancers such as leukemia, lymphoma, and multiple myeloma and other cancers such as breast, ovarian, and testicular.
Specialized treatment may also be required for liver cancer. Recent clinical trials have suggested that sophisticated treatment techniques such as intra-arterial chemotherapy, chemo-embolization, radiofrequency ablation, radioactive isotopes, and conformal radiation therapy can be of major benefit for the treatment of liver cancers. However, not all centers have the capability of delivering this type of treatment. Patients with liver cancer and other cancers that can be treated by specialized methods require second opinions at specialized institutions.
The Role of Caregivers
Caregivers are individuals who provide care to chronically ill or disabled family members or friends. Helping someone go through a cancer diagnosis, treatment and recovery requires understanding, encouragement, patience, and energy. Caregivers become part advocate, nurse, organizer, and financial analyst in addition to maintaining their other responsibilities. Caring for someone with a life-threatening disease can be emotionally and physically draining. Fortunately, the role of caregivers is being recognized and many resources are now available to support caregivers.
Click here for more information on caregiving.
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