Taking Charge of Your Care

Approved by the Cancer.Net Editorial Board, 08/2015

Being a self-advocate involves taking an active role in your cancer care. It can be a positive experience that helps give some people a sense of control in a time of uncertainty. Self-advocacy doesn't have to be time-consuming or difficult. It can be as simple as asking more questions at a doctor's appointment.

Furthermore, being a self-advocate doesn't mean that you alone are responsible for your cancer care. In fact, it commonly involves seeking additional support from others, including friends, family members, and health care professionals.

Being a self-advocate

Self-advocacy is an ongoing process that begins at diagnosis and continues through follow-up care after treatment. To get started as a self-advocate, you may want to:

  • Ask your doctor and other members of your health care team questions.

  • Learn more about your type of cancer from your doctor or reliable websites. 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 doctor or nurse.

  • Ask about and take advantage of other services offered at your doctor's office, hospital, or clinic. There are many different resources are available. Some may include:

    • Counseling

    • Patient navigation services

    • Support groups

    • Nutritional counseling and fitness or movement classes. Before you begin an exercise program, talk with your doctor.

  • Make connections with other people living with cancer, and learn from those who have had similar experiences. Some patient organizations have programs that pair survivors with people who have been recently diagnosed with cancer. Learn more about finding a support buddy.

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

  • Don't be afraid to ask for help managing nonmedical issues, such as:

    • Cost of cancer care and health insurance

    • Transportation and childcare

Tips on talking with the doctor

Talking with your doctor about cancer may seem challenging. Some people experience "information overload" in these conversations and are unable to comprehend everything they hear. Others feel that asking too many questions may seem disrespectful. However, it is important to find the best way to ask for what you need and express your preferences and concerns. Some effective strategies include:

  • 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. For some ideas, read about types of questions you may want to ask your doctor.

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

  • Tell your doctor up front how much information you want. Some patients like to know everything about their disease, including statistics and chances for recovery. Others prefer to hear the least amount of information necessary to informed decisions about their treatment plan.

  • Don't be afraid to speak up if the information you receive doesn’t make sense. Doctors want to ensure you fully understand the information they provide to you.

  • Make sure you know the next step of 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, even after taking these steps, you may still have concerns. In such cases:

  • Talk with a third party, such as the head nurse or your family doctor. They may be willing to discuss the matter with the doctor 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. Additionally, 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 healthcare network. Learn more about choosing a doctor and finding a treatment facility.

More Information

Managing Your Care

Additional Resources

C-Change: Cancer Patient Navigation

National Coalition for Cancer Survivorship: The Cancer Survival Toolbox

The Patient Advocate Foundation