Cancer Treatment Guidelines: Your GoodRx Guide

A cancer diagnosis can come with a lot of new information at once. You may hear your care team talk about “treatment guidelines” when explaining your options. But what does that actually mean?

When it comes to getting treatment for cancer, understanding treatment guidelines can make it easier to take part in decisions and prepare questions for your cancer care team. Here’s what you need to know.

What are cancer treatment guidelines?

Cancer treatment guidelines (also referred to as clinical practice guidelines) are evidence-based recommendations that help clinicians decide which tests and treatments to consider. They’re based on research and expert reviews.

Guidelines may provide the answers to questions such as which treatments to consider first, when to perform certain tests, and what to do if the cancer returns or stops responding to treatment. They may also include recommendations for managing treatment side effects and supportive care options. And they may indicate whether joining a clinical trial is an option.

Keep in mind that guidelines are recommendations, not strict rules. They give your care team a starting point for making treatment decisions. But your cancer treatment plan should be personalized to you.

Who creates cancer treatment guidelines? [How they’re created]

Several medical organizations create cancer treatment guidelines. One of the most widely used sources in the U.S. is the National Comprehensive Cancer Network (NCCN). The NCCN develops treatment guidelines for most types of cancer. It also provides recommendations for cancer screening, prevention, and supportive care.

NCCN guidelines are created by more than 60 panels of experts from its 30-plus member cancer centers. These panels may include medical oncologists, surgeons, and other cancer specialists. Researchers and patient advocates (such as social workers or care coordinators) may also participate in the process.

These panels review clinical research and other available evidence to decide which tests and treatments to recommend. They also consider how strong the evidence is and how well experts agree on individual recommendations. NCCN updates its guidelines regularly as new research, treatments, and information become available.

The NCCN also publishes free guidelines for patients. These patient resources are made possible through the work of the NCCN Foundation. They’re based on the same information as the clinical guidelines but explain the recommendations in language that's easier to understand.

How do clinicians use guidelines to choose a cancer treatment?

Your care team can use cancer treatment guidelines as a road map for your care. Your care team will gather information about your specific cancer and overall health. Then, they’ll review the guidelines to see what treatment options are recommended based on that information.

Several factors may affect what treatments are recommended. These include your cancer type and what stage it is. Whether or not your cancer has certain biomarkers can also make a difference. So can your age, whether you’ve been previously treated for cancer, and any other medical conditions you have.

Sometimes, there are several guideline-recommended treatments to choose from. In this case, you and your care team may discuss the benefits and risks of each option. Before choosing a treatment, you’ll want to consider the short- and long-term side effects, as well as how long you’ll receive it. Your personal goals and preferences can play a role in the final decision.

Why cancer treatment guidelines differ by cancer type and stage

Cancer isn't one disease. There are many different types of cancer. And they don't all respond to treatment in the same way. That's why there are specific treatment guidelines for different types of cancer and clinical situations.

The cancer's stage is another important factor. The stage describes the extent of the cancer, including the size of the tumor and whether the cancer has spread. Knowing the stage of your cancer helps your care team plan treatment.

For example, treatment for an early stage cancer that hasn't spread may focus on removing or destroying the cancer in one area of the body. Treatment for cancer that has spread to other areas may rely more heavily on medications that travel throughout the body.

Even for cancers of the same type and stage, guidelines may recommend different treatments, depending on other features. This is one reason it's difficult to compare your treatment plan directly with someone else's.

How do biomarkers and genetic testing affect treatment recommendations?

Two people can have the same type of cancer but have important differences in their cancer cells. Biomarker testing can help find some of these differences.

Biomarkers include genes, proteins, and other substances that provide information about the cancer cells. Some biomarkers can help predict whether a particular targeted therapy or immunotherapy is likely to work.

For example, a cancer may have a specific gene change that’s targeted by a particular medication. If your cancer has that change, the targeted medication may become a recommended treatment option. Some clinical trials also use biomarkers to determine who can participate.

Biomarker testing isn't the same as testing for inherited cancer risk. Tumor biomarker testing usually looks for changes in the cancer itself. Genetic testing helps determine if you were born with gene changes that may increase the risk of certain cancers. Both types of testing may be useful in determining treatment options in some situations, but not all.

Not everyone needs the same biomarker tests. Your cancer care team can tell you which tests are recommended for your cancer type and how the results could change your treatment options.

Do you always have to follow cancer treatment guidelines?

No, you and your healthcare team do not always have to follow cancer treatment guidelines. Guidelines are designed to guide clinical decisions. But your care team still needs to consider what’s best for you as an individual.

There are several reasons your care team may recommend something different from what the guidelines suggest. Your overall health, other medical conditions, or previous treatments may make a particular treatment option a poor fit. Your preferences and treatment goals also play an important role in your care decisions.

If you're unsure why your treatment plan differs from what you've read in a guideline, reach out to your care team. Your oncologist should be able to explain the reasoning behind their recommendations.

How often do cancer treatment guidelines change?

Treatment recommendations can change whenever new information becomes available. This may include a new medication approval, results of a large clinical trial, or new information about biomarkers and how to use existing treatments.

Cancer research moves quickly. So guideline organizations regularly review new research to determine whether their recommendations need to be updated. It’s common for guidelines to have several updates within a year. The NCCN Panels, for example, review and update guidelines after every new FDA-approved treatment or change in indication of an already approved treatment. The organization also offers email subscriptions for clinicians who want to be alerted of new or updated guidelines.

Changes to guidelines may be especially important if you've been receiving cancer treatment for a long time. A new treatment may become a better option for you. Your cancer care team can tell you whether new or updated guidelines may affect your treatment plan.

Where can you find trustworthy cancer treatment guidelines?

Cancer guidelines are written for healthcare professionals. This means they can be difficult to understand without a medical background. Fortunately, there are patient-friendly resources available.

The NCCN publishes free guidelines for patients, which explain many of the organization’s clinical recommendations in language that’s easy to understand. The American Society of Clinical Oncology (ASCO) also offers some patient-friendly resources. And the National Cancer Institute (NCI) is another reliable source for information about cancer types, treatment options, and clinical trials.

If you find a treatment guideline for your cancer that you want to discuss, bring it to your next appointment. Your care team can explain whether the information is current and how it applies to you.

Questions to ask your cancer care team about treatment guidelines

Cancer guidelines can help you start a conversation with your care team. Some questions to consider asking are:

• What are the recommended treatment options for me?

• What are the pros and cons of each option?

• Which option do you recommend, and why?

• How does your recommendation compare with current treatment guidelines for this cancer? If it’s different, why?

• Could biomarker or genetic testing change my treatment options?

• Is a clinical trial appropriate or available?

• How long do I have to decide about treatment?

• Is there a social worker, patient navigator, or someone else who can help me make this decision?

Don't hesitate to ask your care team to repeat information or explain it in simpler terms. Understanding your options can help you make informed treatment decisions that fit your medical needs and personal goals.

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Written by:

Stacia Woodcock, PharmD

Stacia Woodcock, PharmD, is a pharmacy editor for GoodRx. She earned her Doctor of Pharmacy degree from the University of Kentucky and is licensed in New York and Massachusetts.

Reviewed by:

Alyssa Billingsley, PharmD

Alyssa Billingsley, PharmD, is the director of pharmacy content for GoodRx. She has over a decade of experience as a pharmacist and has worked in clinical, academic, and administrative roles.

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