Eight Ways to Improve MPN Doctor Communication

To ensure that you have a chance to ask your doctor all of your MPN questions, make a list before every doctor appointment that includes all of the information you want to know.

Ideally, you’ll create two copies: One for you and one for the doctor, advised MPN patient advocate Laura DeRose during the program, “An Empowered Patient’s Guide to Creating a Medical Team.” That way, if they can’t answer your questions at the visit, they can research the rest and get back to you.

If side effects of the disease are becoming increasingly problematic and are significantly impacting your daily life, ask for specific solutions. For instance, if your doctor has told you in the past that the solution for fatigue is to rest more – and that isn’t possible with your lifestyle and commitments – you might consider asking for a referral to a complementary therapy provider who can help.

Your MPN specialist may use a wide range of unfamiliar terms during medical visits. This can make some people frustrated, since patients are seeking answers and want to be able to understand what the doctor’s saying.

If your oncologist uses medical jargon to describe your condition or treatment options, stop them and say, “Okay, that’s nice. Stop. This time, in English,” said Dr. Susan LeClair during the program, “Understanding Your MPN Lab Results.”

Your doctor is one source for information about MPNs, but it’s likely that you’ve done independent research about your treatment options and symptoms. It’s important to do so carefully and validate what you find with your care team. As cancer information proliferates, so does potentially inaccurate information.

Many MPN patients research treatment options and feel disappointed if the doctor doesn’t mention them, but if you know of a treatment you’re interested in, ask about it. “There's a tremendous pipeline of new therapies” in development for MPNs, said Ruben Mesa, MD, during the program, “What Are the Phases of MPN Progression?”

In some cases, you may think the doctor is rushing you and not getting to all of your questions and concerns, but that just could be because their schedule doesn’t allow for adequate time. When you make your appointments, be clear with the scheduling team that you need a certain amount of time. This will allow you to have a long enough conversation with the doctor to meet all your needs.

One reason some patients don’t feel a strong connection with their doctor is because they feel like their oncologist is holding back. If you want brutal honesty, come out and ask. Even if they don’t have answers, that’s important to know too.

“The first thing I do is to have a discussion and I say, ‘Look, I don't have the power or the knowledge to predict your individual outcome,’” said Bart Scott, MD, during the program, “What Are MPNs? Diagnosis and Prognosis.”

You don’t have to wait for appointments to improve communication with your doctor. For instance, if you see blood test results that concern you in your portal, call the oncologist and ask for information. If they aren’t available, ask for a return call. Good communication means your relationship is open-ended using all forms of communication, and this spans beyond in-person appointments.