When we first learned about my husband's cancer, I knew I needed to ask lots of questions and investigate every option, but I didn't really know what to ask or how to investigate. Doing a search on the internet for cancer treatments wasn't very helpful. There's just too much information out there, and it's very difficult to discern what's helpful and what is, to use a polite term, bunk. I found that the best approach was to get as much information from my husband's clinicians as possible. The best way to do that was to prepare lots of questions before appointments.
You will find that there are two kinds of appointments with doctors. Some appointments are routine—what I like to call maintenance appointments. These are a regular part of the course of treatment. In a typical maintenance appointment, the physician checks in with the patient and finds out how he or she is doing. Mainly, the doctor is looking to verify that everything is going as expected with treatment.
The other kind of appointment is when you are getting important news and recommendations. I like to call these informational appointments. You will have several appointments like this soon after the diagnosis, and then whenever the patient receives test results (perhaps every few months).
It's a good idea to prepare for any appointment with a doctor, even simple maintenance visits. Your time with a physician is almost always limited, and often feels rushed. It's easy to forget to mention things or ask questions. Before a maintenance appointment, spend a few minutes while you're in the waiting room or exam room reviewing your notes from your last few appointments. Think about what symptoms have been present in the last few days. Ask yourself what is different and new. Write it down so you don't forget to bring it up with the doctor. It is always better to provide your doctor with too much detail rather than not enough. I was amazed at how sometimes my husband would mention a minor pain or change in something that he thought was insignificant, and the physician would respond by getting wide-eyed and ordering more tests or changing a prescription.
For an informational appointment, spend some time preparing your questions a few days beforehand. Consider the possible test results or recommendations, and what concerns you about those possibilities. Make a complete list of your concerns, from minor inconveniences to big, scary consequences. While I don't generally think it's a good idea to dwell on worst-case scenarios or negative possibilities, it can be helpful to consider your worst fears prior to an informational visit, so you can make sure you address them all with the physician. Strange as it might sound, your worst fears make a good place to start brainstorming for your list of questions.
After you have created your list of questions, spend some time reviewing that list. Talk with your family and friends about your concerns—and their concerns. Ask them to help you create questions for the doctor. They will likely have a different point of view or have ideas that might not have occurred to you.
When a doctor makes a recommendation for treatment, ask for numbers. Often a doctor will advocate a course of treatment because "studies have shown it is more effective." Ask the doctor the name of the study and how much more effective the study showed the treatment to be. Sometimes the statistical difference in success rates between two treatment plans is very small. Ask the doctor why the treatment options he hasn't recommended are not as good. Ask what side effects the patient can expect during, immediately after, and years after the treatment.
Finally, always ask your doctor: "What are the questions I haven't asked?"