Taking Charge of Your Care

Approved by the Lineagotica Editorial Board, 04/2018

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 treatment. To get started as a self-advocate, consider these steps:

  • Ask your health care team questions.

  • Learn more about the type of cancer you have from your health care team or online. Reliable websites can provide:

    • Educational material

    • Programs and services

    • Support for people with cancer and their families

    As always, discuss any information you find on the Internet with your health care team.

  • Ask about and take advantage of other services offered at your doctor's office, hospital, or clinic, including:

    • Counseling

    • Patient navigation services

    • Support groups

    • Nutritional counseling and fitness or movement classes. Talk with your doctor before you begin an exercise program.

  • Connect with other people living with cancer and those who have had similar experiences. Some organizations have support buddy programs that pair cancer survivors with people who have been recently diagnosed.

  • Feel confident about your choices. Consider seeking a second opinion about your diagnosis or treatment plan.

  • Do not be afraid to ask for help managing nonmedical issues. These may include:

    • Cost of cancer care and health insurance

    • Transportation

    • Childcare

Tips on talking with your health care team

Talking with your health care team about cancer may seem challenging. Some people feel that they are receiving too much information at once and are unable to understand everything they hear. Others feel that asking too many questions may seem disrespectful. But it is important to find the best way to ask for what you need and express your preferences and concerns. Try using these strategies:

  • Keep a record to help you remember what you want to discuss with your doctor during your appointment.

  • Prepare a list of questions for your doctor before your next appointment.

  • During your appointment, take notes or record conversations. Or bring a friend or family member to help you take notes and keep track of the details. These methods will allow you to more accurately review the information after the appointment.

  • Tell your doctor up front 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.

  • Do not be afraid to speak up if the information you receive does not make sense. Your health care team wants to make sure that you fully understand the information they provide.

  • Make sure you know the next steps in your care before leaving the doctor's office.

  • Ask if there is any written information you can take home. This can be helpful for you to remember what you discussed in your appointment or to share with friends and family.

Finding additional help

Sometimes, you may still have concerns after taking these steps. In such cases:

  • Talk with a third party. This may include the head nurse or your family doctor. They may be willing to discuss the matter with your cancer health care team or offer helpful suggestions.

  • If you are having a problem with a doctor or another member of your health care team while in the hospital, 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. Ask for references from friends, family members, and other people with the same type of cancer. And call your insurance company to find out whether the new doctor is part of your plan’s network. Also, make sure to ask how much extra it would cost to see the doctor if he or she is not in your health care network. Learn more about choosing a doctor and finding a treatment center.

Related Resources

Being a Cancer Advocate

Medical Forms

More Information

National Coalition for Cancer Survivorship: Cancer Survival Toolbox

Patient Advocate Foundation