We hear a lot about the need to advocate for ourselves as we move through cancer treatment. Clearly, you care more about your own situation than anyone else, and it is important to speak up for your needs and ask all your questions. This comes up in all kinds of ways. For example, it is important to know the best way to reach your doctor (phone, email, what time of day?) and when to anticipate a response. It is important to have a plan to hear test results. It is important to express how much information you do or do not want to have.
This is a nice companion piece to yesterday's entry re your healthcare team. Again, from ASCO's CancerNet, this is about self-advocacy:
Self-Advocacy: Participating in Your Cancer Care
Last Updated: April 12, 2010
Being a self-advocate involves taking an active role in your cancer care. It can be a positive experience, often giving 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, from diagnosis to follow-up care after treatment. The following suggestions may help get you started:
Ask questions of your doctor and other members of your health care team. For some ideas, read about types of questions that might be helpful.
Learn more about your type of cancer from reliable websites, such as Cancer.Net and the National Cancer Institute or from your doctor. 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, consult your doctor.
Make connections with other people living with cancer, and learn from those who have had similar experiences. Some patient information organizations have programs that pair survivors with people who have been recently diagnosed with cancer. Some examples include the American Cancer Society's Reach to Recovery program and the Pancreatic Cancer Action Network's PALS (Patient and Liaison Services) Survivor and Caregiver Network. Learn more about finding a support buddy.
Consider seeking a second opinion about your diagnosis or treatment plan, which may help you feel more confident about your choice.
Don't be afraid to ask for help managing nonmedical issues, such as the cost of cancer care, health insurance, transportation, and childcare. Learn more about how to address psychosocial issues.
Tips on talking with the doctor
Talking with your doctor about cancer may seem challenging. Some people experience "information overload" in such conversations and are unable to comprehend everything they hear, while others feel that asking many questions seems disrespectful. However, it is important to find ways to effectively communicate your needs, ask questions to understand your options and learn the doctor's opinion, and express your preferences.
Keep a record of your symptoms to help you remember the details you want to discuss with your doctor during your appointment.
Before your next appointment, prepare a list of questions for your doctor. Find a list of suggested questions.
During your appointment, take notes, tape record important 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. For example, some patients like to know everything about their disease, including statistics and chances for survival, while others prefer to hear the least amount of information necessary to make good decisions about their treatment plan.
Don't be afraid to ask questions. Doctors want to ensure that you fully understand the information they provide 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.
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. In addition, call your insurance company to find out whether the new doctor is part of your plan's network and how much extra it would cost to see the doctor if he or she is not in-network. Learn more about choosing a doctor and finding a treatment facility.