By Kari Bohlke, ScD
A diagnosis of cancer can raise a long list of questions: What’s my prognosis? What are my treatment options? Should I get a second opinion? Where should I receive treatment? How will I feel during treatment? By seeking answers to your questions—and by understanding some of the factors that influence treatment decisions—you can work with your healthcare team to choose a treatment plan that is right for you.
As you go through this process, keep in mind that each person with cancer is different. Some people want very detailed information about their diagnosis and treatment options, and others do not. The extent to which people want to play an active role in treatment selection also varies. There is no single right approach, so communicate openly with your healthcare team about your needs and preferences.
Understanding the Diagnosis
As research has advanced, it has become apparent that cancers show tremendous variability in how they grow and respond to certain treatments. Even a single type of cancer—such as breast cancer—can vary dramatically from one woman to the next in ways that affect treatment decisions. By talking with your doctor about the characteristics of a particular cancer, you may develop a better understanding of why certain drugs or procedures are recommended. The stage of the cancer is important for many cancer types, and tests may also be available to assess factors such as hormone receptor status, patterns of gene expression, or the presence of certain gene mutations.
Stage and Grade
The stage of the cancer captures information about the size and the extent of spread of the cancer.1 For many types of cancer, stage is assessed using a TNM staging system. This assesses the size of the primary tumor (T) and the extent to which it invades nearby tissues; the spread of cancer to the lymph nodes (N); and metastasis (M) of the cancer to distant sites in the body. Stage may range from 0 to IV, with a higher stage indicating larger or more extensive cancer. Cancers that have a different staging system or a different way of being described include many of the hematologic (blood) cancers and cancers of the brain and the spinal cord. Your doctor can help you understand the important features of a particular cancer. Stage can guide treatment decisions in many ways: it may help the doctor decide whether the cancer can be surgically removed, for example, and whether whole-body therapies such as chemotherapy are necessary.
The grade of the cancer may also be important to assess. Grade refers to how abnormal the cancer cells look under a microscope. Different types of cancer can have different grading systems, but in each case high-grade cancers have cells that appear very abnormal (very different from normal cells). High-grade tumors may be more aggressive than low-grade tumors and may therefore require different treatments.2
Patterns of Gene Expression
For certain types of cancer, patterns of gene activity within the tumor provide information about how the cancer is likely to behave. The Oncotype DX® breast, prostate, and colon cancer tests, for example, assess the activity of several genes in a sample of tumor tissue and provide information about the likelihood of cancer recurrence or cancer aggressiveness.3,4,5 Cancers that have a higher likelihood of recurring (coming back) may require more-aggressive treatment than cancers with a low likelihood of recurring.
Gene Mutations
Certain gene mutations also affect cancer behavior, and a large and growing number of targeted therapies have been proven effective against cancers that contain these mutations. Many advanced melanomas, for example, contain mutations in the BRAF gene and can be treated with drugs known as BRAF or MEK inhibitors.6,7,8 Similarly, advanced non–small cell lung cancers that contain abnormalities in the ALK gene tend to respond well to a drug that targets this gene abnormality.9 In some cases the presence of a certain gene mutation within a cancer may provide information about which treatments will not be effective. Certain targeted therapies for colorectal cancer, for example, are not recommended if the cancer contains a mutation in the KRAS gene.10
Other Features of the Cancer
Many other features of the cancer may also be important. In the case of breast cancer, for example, cancers are typically tested for their hormone receptor and HER2 status. The results of these tests provide information about whether the cancer is likely to respond to hormonal therapies such as tamoxifen and the aromatase inhibitors and to HER2-targeted therapies such as Herceptin® (trastuzumab).
Choosing a Treatment Team
As you consider where to receive cancer care, it can be helpful to start by talking with trusted healthcare providers in your area. Your primary care provider or a local oncologist, for example, may be able to refer you to an expert who specializes in the type of cancer you have. Or if you have already received some type of cancer care—such as surgery—the physician who provided that care will often be able to advise you about sources of any subsequent care you may need.
Seeking a physician who specializes in the type of cancer you have—and who treats large numbers of patients with that type of cancer—may help you receive the best possible care. This may be particularly important if you have a very rare type of cancer or if you require complex or high-risk treatments, such as stem cell transplantation. Depending on where you live, finding a physician who specializes in a specific type of cancer may require you to travel to a large cancer center. Once your treatment plan is developed, however, it may be possible to receive much of your care closer to home, with only periodic travel to see the specialist.
Choosing a team that makes you feel comfortable can also ease the process of cancer treatment. Cancer care providers differ in their communication styles and general approaches to health and healthcare, and you may wish to consider these characteristics in addition to the team’s other qualifications. Some patients appreciate a blunt, businesslike approach to medical care; others prefer a more nurturing environment.
Understanding Treatment Options
Depending on where and how they act, cancer treatments are either local (intended to treat cancer in a single area of the body) or systemic (whole-body). Surgery and radiation are local therapies, and many of the drugs used to treat cancer are systemic. Depending on your situation, you may receive only local treatment, only systemic treatment, or a combination of these approaches.
As you and your doctor develop a treatment plan, consider the types of information that you would like to have. You may have questions about your prognosis after treatment, the duration of treatment, where treatment will be delivered, short- and long-term side effects of treatment, and how side effects are managed. Some cancer treatments may reduce or eliminate your ability to have children; and if you have not yet completed your family, you may wish to talk with your doctor about options for fertility preservation.
Answers to these questions can be helpful even if there is only a single standard approach to the particular type of cancer you have; and they become even more important if you have more than one treatment option. For example, one type of treatment may produce a somewhat lower risk of cancer recurrence than another, but this treatment may also have a higher risk of serious side effects. Once you have this information, you can decide what matters the most to you.
It may also be important to consider the goals of treatment. For early-stage cancers, the goal is often to cure (completely eliminate) the cancer. Goals for later-stage cancers will depend on the specific characteristics of the cancer: some may be treated with the goal of eliminating the cancer, but this is not always possible. Other goals of treatment may be to slow the cancer growth or to alleviate symptoms and maximize quality of life. Discussing treatment goals with your physician may help you decide what treatments and what side effects you are willing to tolerate. During this discussion keep in mind that the decision to have any treatment is up to you.
Enlisting Support
Bringing along a friend or family member to your appointments can be very helpful. If you assemble a list of questions for your healthcare team prior to an appointment, your support person can ensure that the questions are asked and answered and can help you keep track of any new information your healthcare team provides. Family members or close friends may also be able to help you explore and manage the financial and insurance implications of a cancer diagnosis.
Seeking a Second Opinion
Another step that many cancer patients take when selecting a doctor or treatment plan is to get a second opinion from another expert in the field. Second opinions are a common practice in any area of medicine that is complex and that has multiple treatment options. Getting a second opinion allows you to become more informed about the cancer and your treatment options and can also provide reassurance. If two experts in the treatment of the type of cancer you have agree on a treatment plan, it may help you feel more comfortable with your treatment choice. And if the experts disagree, it opens the door for additional discussion and a deeper understanding of the available options. You can then choose the treatment plan that you are most comfortable with and receive the care from the doctor who offered it.
Considering Clinical Trials
A clinical trial is a research study designed to evaluate potential new treatment options. Clinical trials test the safety and the efficacy of new or modified cancer drugs, new drug doses, unique approaches to surgery or radiation therapy, and varied combinations of treatments. In the United States, all new cancer treatment products must proceed through an orderly clinical trials evaluation process to ensure that they have an acceptable level of safety and demonstrate benefit to helping patients with a specific cancer before they become commercially available to other patients.
Clinical trials are available for most types and stages of cancer and can be particularly important for cancers that have poor outcomes with current standard therapies. A good source of information about ongoing clinical trials is the National Cancer Institute (cancer.gov/clinicaltrials). The potential benefits of participating in a clinical trial include close monitoring, the potential for early access to a promising treatment, and the knowledge that you are contributing to the advancement of cancer care. On the downside, it is possible that the new treatment will not prove to be as effective as hoped or will be found to have unexpected side effects. If you are considering participating in a clinical trial, your treatment team may be able to help you weigh the risks and the benefits.
Deciding What Else Matters to You
Cancer can be an overwhelming diagnosis, but it doesn’t define you as a person. Talking with your healthcare team about the other important aspects of your life—whether it is your work schedule, your responsibilities at home, or your recreational pursuits—may help you plan how to integrate cancer treatment and cancer survivorship with the rest of your life. During this process, take the time you need to make the decisions that are right for you. In some cases it may be important to begin treatment immediately, but in other cases it will be less urgent. Talk with your treatment team about how much time you have to consider your options. _
References
1. Cancer Staging. National Cancer Institute website. Available at: http://www.cancer.gov/cancertopics/factsheet/detection/staging. Accessed October 2, 2013.
2. Tumor Grade. National Cancer Institute website. Available at: http://www.cancer.gov/cancertopics/factsheet/detection/tumor-grade. Accessed October 2, 2013.
3. Cooperberg M, Simko J, Falzarano S, et al. Development and validation of the biopsy-based genomic prostate score (GPS) as a predictor of high grade or extracapsular prostate cancer to improve patient selection for active surveillance. Paper presented at: 2013 Annual Meeting of the American Urological Association. May 4–8, 2010; San Diego, CA. Abstract 2131.
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