You can be a self-advocate by taking an active role in your cancer care. This can be a positive experience that gives some people a sense of control in a time of uncertainty. Self-advocacy does not have to be time-consuming or difficult. It can be as easy as asking more questions at a doctor's appointment. It also does not mean that you alone are responsible for your cancer care. In fact, it commonly involves seeking additional support from others.
Being a self-advocate
Self-advocacy is an ongoing process that begins at the time of a cancer diagnosis and continues through follow-up care after
You can choose to take a more active role in your own cancer care. This is called being a self advocate. This can be a positive experience that gives some people a sense of control in a time of uncertainty. Self advocacy helps you gather information that can guide important decisions about your health before, during, and after cancer treatment.
This does not have to be time-consuming or difficult. It can be as easy as asking more questions at a doctor's appointment. It does not mean that you alone are responsible for your cancer care. In fact, being an advocate for yourself commonly involves seeking additional support from others.
How can I advocate for myself during cancer?
Self advocacy is an ongoing process. It begins at the time of cancer diagnosis and continues through follow-up care and after treatment. Ways you start advocating for yourself can include the following choices:
Ask your health care team more questions and let them know how you're feeling.
Learn more about the type of cancer you have.
Look at reliable websites that provide education, programs and services, and support for people with cancer and their families.
Discuss the information you find online with your health care team.
Consider getting a second opinion about your treatment plan.
Your hospital or doctor's office may offer services specifically for people with cancer and their families, to help solve problems or specific challenges you experience. Ask your doctor or others in your health care team about these services. These services include:
Patient navigation services
Fitness or movement classes. Talk with your health care team before you begin an exercise program.
Complementary therapies, such as meditation, guided imagery, massage, and stress reduction
Self advocacy can also include connecting with other people living with cancer, including those who have had similar experiences as you. It can be helpful to talk to people who have had the same kind of cancer. Some organizations have "support buddy" programs that pair cancer survivors with people who have been recently diagnosed.
A cancer diagnosis often affects different aspects of a person's life. Do not be afraid to ask for help managing non-medical issues, like the costs of cancer care, health insurance, transportation, and childcare. Talking with an oncology social worker can be helpful.
How to talk with your health care team
Talking with your health care team about cancer might seem intimidating or challenging. Some people feel that they are receiving too much information at once. Understanding cancer care can feel like learning a new language. You might not be able to understand everything your health care team is talking about. Others feel that asking too many questions may seem disrespectful. However, your health care team wants you to feel comfortable and understand your care and treatment.
It is important to find an effective way to ask for what you need and express your preferences and concerns. This means building a relationship with your health care team. Try using these strategies before, during, and at the end of your medical appointments.
Before your appointment. Write down a list of topics that you want to discuss with your doctor so you don't forget anything while you're at your appointment. You can use a piece of paper or use the note-taking app on your phone. Cancer.Net also offers a free app that allows you to keep a list of your questions for different health care providers. Before your appointment, rank your list by order of importance so you can ask your most pressing questions first.
During your appointment. Take notes or record the conversation using the voice memo app on your phone. Many patients choose to bring a friend or family member to help take notes and keep track of medical details.
Tell your doctor how much information you want. Some people like to know everything about the cancer, including statistics and chances for recovery. Others prefer to hear just enough information to help them make decisions about their treatment plan. And, your preferences can change over time. Do not be afraid to speak up if you do not understand something.
At the end of your appointment. Make sure you know the specific next steps in your care before leaving the office. Ask if there is any written information you can take home to remember your discussion or share with your caregivers.
How to find more support
Sometimes, you may want or need extra support to help navigate your cancer care and treatment. Here are some suggestions for how to find additional help:
Talk with your family doctor or primary care physician. They might be able to help explain your care, offer helpful suggestions, or talk with your cancer care team.
If you are in the hospital and have a problem with one your health care providers, speak with a social worker or a hospital patient service representative.
If your doctor's communication style does not match yours or you want a different approach for your care, consider finding a new doctor or health care team.
Improving Communication Between Oncologists and People With Cancer
Questions to Ask Your Health Care Team
National Coalition for Cancer Survivorship: Cancer Survival Toolbox
Patient Advocate Foundation