Cancer Self-Advocacy

Being an advocate involves speaking for and supporting a cause, idea, or policy. In the cancer community, being a cancer advocate means that you support a cause, idea, or policy regarding cancer, which may include working to change laws and policies that affect people living with cancer. On a more personal level, for someone with cancer, being a self-advocate involves taking an active role in your cancer care. This article is first in a two-part series about cancer advocacy. The second article, Being a Cancer Advocate, describes how someone may become a cancer advocate on a more national or global level.

Becoming a self-advocate

Self-advocacy can be a positive experience and often gives a person a sense of control in a time of uncertainty. 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 are responsible for your cancer care alone. Many people involve friends and family members to help find and sort all of the information necessary to make decisions regarding care and treatment.

Self-advocacy is an ongoing process, beginning with diagnosis and continuing to follow-up care after treatment. The following suggestions may help get you started:

Ask questions of your doctor and nurse. To learn more about what types of questions might be helpful, read Questions to Ask Your Doctor for some ideas.
Learn more about your type of cancer from reliable websites, such as Cancer.Net, the National Cancer Institute (NCI), and the American Cancer Society (ACS). Or, ask your doctor for information specific to your type of cancer. Cancer.Net also lists patient information resources, which provide educational material for people with cancer and their families. Discuss this information with your doctor or nurse.
Ask about and take advantage of other services offered at your doctor's office, hospital, or clinic, such as counseling, support groups, nutritional counseling, and fitness or movement classes. Before you begin an exercise program, please consult your doctor.
Include social workers and nurses as part of the health-care team. They often have suggestions for people living with cancer and their families based on years of professional experience.
Learn from other people living with cancer and make connections with others who have had similar experiences. Some patient information organizations have "pairing programs" where survivors are paired with people who have been recently diagnosed. Some examples of "pairing programs" are ACS's Reach to Recovery program and Pancreatic Cancer Action Network's (PanCAN) PALS (Patient and Liaison Services) Extending a Helping Hand.
Consider seeking a second opinion about your diagnosis or treatment plan, which may help you feel more confident about your choice. More information can be found in Seeking a Second Opinion.
Don't be afraid to ask for help with nonmedical issues, such as transportation, finances, insurance, and childcare.

Tips on talking to the doctor

Some people may find it difficult to talk about cancer, even with their doctor. According to CancerCare, a nonprofit organization that provides free services to people with cancer, people often suffer from "information overload" when talking to their doctor and are unable to comprehend everything they are hearing. Other people feel that asking many questions seems disrespectful. In any case, it is important to find a way to communicate your needs to your doctor so the best possible plan for your health can be made.

The following suggestions may help you communicate with your doctor. More information can be found in the article, Helpful Hints for Doctor Visits.

Keep notes or a journal of your symptoms to help you remember the details you want to discuss with your doctor during your appointment.
Prior to your next appointment, prepare a list of questions for your doctor. This way, you have a list you can refer to during the appointment.
Take notes, tape record important conversations, or bring a friend or family along to the appointment. 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. For example, some patients like to know everything about their disease, such as statistics and chances for survival, and others prefer to hear the least amount of information necessary to make good decisions about their treatment regimen.
Don't be afraid to ask questions when you don't understand something. Doctors want to know how best to explain information to you.
Make sure you understand the next step of your care before leaving the doctor's office. Ask if there is written information that you can take home.

Options are available

Sometimes, even after doing everything you can to ensure the best care, you may still have concerns about your doctor or health-care team. The following suggestions may help:

Talk to a third party, such as the head nurse or your family doctor, about the problem. 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 medical staff member while in the hospital, speak to a social worker or a hospital patient service representative.
Sometimes you may find that your doctor's communication style does not match yours, or that you want a different approach for your care. At this point, you may wish to consider finding a new doctor or medical 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 and how much extra is would cost to see the doctor if he or she is not in the plan.

More Information
Cancer.Net's Advocacy and Policy Center

Additional resources

Cancer Patient Navigation

National Coalition for Cancer Survivorship (NCCS): Learn About Cancer Advocacy

NCCS: The Cancer Survival Toolbox

LIVESTRONG from the Lance Armstrong Foundation

The Patient Advocate Foundation

Last Updated: December 13, 2007