After a cancer diagnosis, people with cancer and their families have to make a number of decisions about medical treatment. These decisions can be complicated by anxiety, unfamiliar words, statistics, and a sense of urgency. Unless you are facing an emergency, take time to research your options, ask questions, and talk with family and friends.
Decisions about cancer treatment are personal, and you need to feel comfortable about your choices. But many people do not know where or how to start. Here are some simple, important steps you can take as you start the decision-making process.
Understanding your diagnosis
Your treatment plan will depend on the type of cancer you have and its stage at diagnosis. There are four important questions that you should discuss with your health care team:
What type of cancer do I have? This is also called a diagnosis. Understanding the type of cancer and where it started will help your health care team know how to treat it.
Where is the cancer located? This is called cancer staging. Cancer staging is a way to describe where the cancer can be found in the body. The cancer's stage tells you where the cancer is located and its size, if it has grown into nearby tissues and how far, and if it has spread to nearby lymph nodes or other parts of the body and organs. The treatment you receive will depend on the cancer's stage.
What do my diagnosis and stage mean? This question will help you understand your prognosis, which is the predicted course of the cancer. This question will also help you understand treatment goals. For some people, the goals of treatment will be to cure the cancer. For others, it will be to live your life as best as possible for as long as possible. Sometimes you will hear this described as "quality of life."
What are my treatment options? This is the most common question all people with cancer and their caregivers have. Unless your health care team tells you starting treatment is urgent, it is important to take time to understand and digest the information about your cancer type and diagnosis to make decisions about the recommended treatment options.
After understanding the type of cancer, the stage, and treatment goals, you and your health care team can work together to choose a treatment plan. Take time to learn about all of your treatment options and ask any questions that are unclear. Ask your doctor what you can expect from each of the proposed treatments, including things such as how it would make you feel (quality of life) and how much benefit it may provide. Sometimes, the answers to these questions may be uncertain. This is because everyone experiences different side effects and results from treatment. Talk with your health care team about how to manage possible side effects. Ask your oncologist which treatment plan they recommend and how they made that decision. These types of conversations are called shared decision-making.
Understanding the goals of your treatment options
Your doctor may use some treatments to slow, stop, or eliminate the cancer. They will also use palliative and supportive care to manage symptoms and side effects. For example, if a cancer treatment causes nausea, there are several different ways to avoid or reduce nausea, such as a prescription medication.
During your conversation with your doctor about treatment options, it is important to understand the goals of each treatment in your treatment plan. This can help you make the best decision about treatment for you.
Cancer treatments, also called cancer therapies, have two goals: cure cancer or control cancer.
Curative cancer treatments. When therapies are used to eliminate cancer, they are called "curative cancer treatments." A treatment plan that is intended to cure cancer will also include palliative and supportive care to manage symptoms and side effects.
Palliative cancer treatments. Sometimes, a cure for cancer is not possible. This does not mean that the cancer cannot be treated and controlled for a certain period of time. Cancer treatments that are used to control cancer are called "palliative cancer treatments." This is because the treatments help relieve symptoms and side effects for as long as possible. The goal of palliative cancer treatment is to help you live as well as possible for as long as possible.
Take time to understand the medical goals for your treatment, process the information your health care team gives you, and ask questions. Make sure you understand the goals, expected benefits, and possible risks of the recommended treatments. During this conversation, your doctor can tell you if the recommended cancer treatment is curative or palliative.
Deciding what is most important to you
This is also a time for you to decide and share what is most important to you for your treatment. When your doctor knows your priorities, they can help you make informed decisions about your medical treatment and care.
Some people want the most aggressive treatment possible. Others want to experience fewer symptoms and side effects. Your health care team can help you decide what is most important to you. Consider asking yourself these questions:
What am I most worried about when it comes to my care? For example, if you are worried about side effects, your doctor can explain the different treatment options, common side effects, and how they can be managed or prevented. Or, if you are most worried about cost, your health care team can point you to financial resources that can help.
What is most important to me right now?
What are my priorities if my cancer worsens? Learn more about making decisions about advanced cancer care and putting your health care wishes in writing.
It is normal for a patient's goals to change over time during their experience with cancer. If that happens, it is important to let your health care team know.
Understanding the side effects, risks, and benefits of each treatment option
Before you make a decision about your cancer care, it is important to weigh the positives and negatives (or benefits and risks) of each treatment option.
For example, sometimes cancer treatment can cause long-term side effects, or late effects, that might develop months or even years after treatment. This can include sexual or reproductive health concerns. Always discuss possible long-term side effects with your health care team, including the risk of being unable to have children and your options to preserve fertility before treatment begins.
Other risks and benefits that you will need to consider include:
Chance of a cure
Potential short- and long-term side effects
Likelihood that the cancer will come back after treatment
Chances of living longer with or without treatment
Effect on your quality of life and independence
Other factors to consider when making decisions about cancer treatment
You can consider other factors when making decisions about your treatment options, based on what is important to you. These may include:
Getting a second opinion. Most people choose to seek a second or third opinion from another oncologist. Different oncologists may have different experiences with various treatments, including clinical trials, or the specific type of cancer you have. Getting a second or third opinion is common and it can help you feel more confident in the treatment plan and oncologist you choose.
Consulting guidelines or other decision-making tools. The American Society of Clinical Oncology (ASCO) and other organizations publish various clinical practice guidelines and treatment decision-making tools. These tools help doctors and patients understand various treatment options. Talk with your health care team to find out more details about treatment recommendations from medical organizations. On a different ASCO website, you can look up current treatment recommendations by type of cancer from ASCO.
Discussing your decision with people you trust. Some people find it helpful to talk through their thoughts and concerns with people they trust. This may include:
Family and friends
A member of the clergy
A spiritual advisor
An oncology social worker
Another person with cancer
Understanding the role of statistics. Your doctor may mention statistics when describing treatment options. These may include survival rates, disease-free survival rates, and progression-free survival rates. These numbers can be a good way to learn how the treatment options differ. However, it is important to remember that they cannot predict how well treatment will work for you. Each person is different. Your health care team can explain how these statistics relate to your treatment options. Learn more about how to understand the statistics used to evaluate treatment.
Questions to ask the health care team
Consider asking your health care team these questions about the proposed treatment plan:
What type of cancer do I have?
Where is the cancer located?
What does this mean for me?
What are my treatment plan options?
When do I need to make a decision?
What treatment plan do you recommend? Why?
What is the goal of the recommended treatment plan?
What is the goal of each treatment in the plan? Is it to eliminate the cancer, help me feel better, or both?
What are the risks and benefits of the proposed treatment plan?
What are the short-term side effects of this treatment plan?
What are the possible long-term or late effects of having this treatment?
What can be done to prevent or relieve side effects?
Can you recommend another doctor or cancer center where I can get a second opinion?
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Patient Stories about Making Cancer Treatment Decisions
When You and Your Family Differ on Treatment Choices
Cancer Care Decisions for Older Adults
Podcast: When You Have to Make Decisions for a Loved One With Cancer