It's possible you'll uncover a treatment your doctor hasn't mentioned, especially if you engage in online support groups with patients who have a similar diagnosis to yours. You may wonder why your doctor didn't tell you about a treatment that seems so promising, and you may want to know how to broach the subject with your doctor.
There may be several reasons why your doctor may not tell you about every treatment option that could help you. Some are fair and reflect good medical practice. Others pertain to the scope of your doctor's awareness or service. In those cases, the best thing we patients can do is discuss them with our doctors.
If you have heard about a generic drug, or a similar drug made by a different manufacturer that will be less expensive for you and that is listed in the same class of drugs, ask your doctor about it. It's even possible there is a non-drug approach to your treatment that should be discussed.
For example, a drug called Bexxar (similarly Zevalin) treats certain forms of non-Hodgkin's lymphoma. But it is a radioactive drug, and can only be administered by a facility (usually an academic medical center) that has government permission to do so. Since most oncologists do not have that capability, and since some patients may not have easy access to a center that provides the service, it may not be mentioned as a treatment.
Another example is the surgeon who has performed a certain type of surgery for many years, is comfortable with it and knows it works. New technologies may have become available which require tools and training he or she doesn't have access to, or that the surgeon doesn't feel has been tested well enough yet. In that case, the possibility may not be raised for the patient.
What You Can Do
If you find or hear about a treatment option your doctor hasn't mentioned, then there are three things you can do:
- Say nothing, and go along with the treatment your doctor has recommended. An empowered patient will rarely default to this choice. If you don't ask questions, you'll never have the confidence that the right recommendation for you was made. As empowered patients we ask questions, we discuss options, then we make choices. When we are finished, we have as much confidence as possible in the choices we have made in partnership with our doctors.
- Learn as much as you can, and talk to your doctor about the not-yet-mentioned treatment option. This should not be confrontational. Simply ask, "Doctor, what do you know about _____?" Or, "I found information about ____ and would like to talk about whether it's a possibility for my treatment."
Your doctor will then explain why it would or would not be a good option for you. From there, you'll have to determine whether those reasons make sense to you.
- Seek out a Shared Decision-Making professional or advocate. Sometimes this person will be a physician who practices in the specialty that relates to your diagnosis, and sometimes it will not. The shared decision-making process will weigh your values against your options and help you figure out what's right for you.
- See another doctor for a second or third opinion if you don't feel satisfied with your doctor's response. See if the treatment is mentioned, and if not, raise the question. From there, based on that conversation, decide which doctor you have the most confidence in.
Learn why "following the money" is the answer to more doctors' appointments mysteries:
- Why do I wait so long to see the doctor during an appointment?
- Why does my doctor always seem to be in such a hurry?
- Why won't my doctor spend more time explaining things to me?
- Why can't I find a doctor who will help me coordinate my care?
- Why does my doctor send me for so many tests?
- Why don't some doctors accept my insurance?
- What is a concierge practice or boutique medicine?