When you work for a professional cancer organization, people have a tendency to raise your expert status. As a result, I often find myself researching and answering medical questions for friends and family. So much so that I usually joke that while I might not be a doctor, “I play one on TV.”
Earlier this week I was approached by a family member about whether she should have a specific breast imaging test. Since I’m not a medical professional, and therefore shouldn’t dispense medical advice, I won’t go into details. However, it did get me thinking—there are probably a lot of people who have unfamiliar tests or procedures recommended to them who don’t have a friendly medical writer with stacks of ASCO resources neatly filed away in their brains to turn to. But that doesn’t mean you can’t find this information for yourself. It’s all out there; you just need to know where to look and what to ask.
So, consider this your crash course in medical information gathering—Informed Decision Making 101, if you will. In my experience, it really all comes down to this:
Do some background research. Use reputable websites to find out more information about the test or procedure, such as: How will it be performed? Does it use radiation? If so, how much? What information will it tell the doctor? If you are comfortable reading and understanding published studies, you may want to go a step further and search PubMed or other sources to find out how the test or procedure has been used in clinical trials and whether it has provided relevant, useful results. Patients and caregivers can get free access to medical research articles published in the Journal of Clinical Oncology through patientACCESS. Interpreting study results is not always easy, so always talk with a member of your health care team about the information you’ve found before you act on it.
Look at guidelines. ASCO publishes clinical practice guidelines that recommend specific tests, procedures, and treatments based on a thorough review of the research and an assessment of the benefits and risks of the possible care options. Sometimes it may be difficult to figure out how guidelines relate to your care, so you may want to use ASCO Care and Treatment Recommendations for Patients, which are easy-to-read summaries that offer a patient-oriented view of ASCO’s clinical practice guidelines.
Make a list of questions. Take all of the information you have gathered and make a list of questions you would like to ask your doctor. Take all of the information you have gathered and make a list of questions you would like to ask your doctor. It’s a good idea to write them down and take them with you to your appointment. You may want to ask things like:
- Why are you recommending this test or procedure?
- Is there another test or procedure that could provide the same information?
- What will the results tell you about my health?
- Will my insurance cover this test or procedure? How much will I have to pay out of pocket?
- What are the potential risks and benefits of this test/procedure?
Talk with your doctor. Your best resource is always your doctor because he or she knows your specific situation and can explain potentially complicated medical information. Continue asking questions until you feel you have all of the answers you need, and don’t be afraid to ask your doctor to repeat things or explain unfamiliar words or phrases. Also, don’t feel pressured to make a decision on the spot unless the situation is urgent. Take the time you need to process the information you have received so you feel comfortable with your decision.
Take someone with you. If you are worried or anxious about talking with your doctor, ask a friend or family member to go to the appointment with you. He or she will not only provide you with support, but can also listen to and help remember what was discussed.
Consider getting a second opinion. Depending on your situation, you might feel like talking with another doctor. This is called a second opinion. Different doctors may have different experiences and recommendations, and hearing another opinion sometimes helps you make a more informed decision.
Discuss your situation with people you trust. Although any decision about your health care is ultimately up to you, some people find it helpful to talk through their thoughts and concerns with people they trust, such as a family member, friend, member of the clergy, spiritual advisor, counselor, or therapist. Talking with someone you trust not only can help you organize your thoughts before you talk with your doctor, but also can help you solidify your decision.
At the end of the day, being an informed patient is really all about communication. By asking questions and being open with your doctor about your concerns, you can feel more confident in your decisions and more in control of your health.