Newly Diagnosed With Polycythemia Vera?

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My name is Ron. I'm a polycythemia patient. I was originally diagnosed at the age of 38 and have been living with the disease for over 25 years. I'm here to help you with your first appointment with your hematologist oncologist because I'm sure that you have so many questions that you want to ask and have answers to. [MUSIC PLAYING]

As you go to your doctor's appointment, it is great for you to have all of your medical records with you and also to write down all the questions that you may have for the doctor. You probably have many questions that you need to ask. So start with the simple things first. What is this disease? What is it doing to me? And I'm sure that you have questions regarding, what is my life expectancy?

I would suggest and recommend that you write those answers down so that you can refer to them postappointment. There is a lot of information that you need to absorb and understand. And then that may generate some follow-up questions that you can reach out to your doctor to have answered for you.

It's always good to bring your caretaker along or your significant other so they can hear the information as well. And they can help you post-appointment as well with that. So they are part of your health care team as well.

You need to establish a comfort level with your health care provider. And one of the ways that you can do that is ask him about his practice and how many polycythemia patients that he has in his practice so that you understand his depth of patients.

When you're speaking to the doctor, it's important, especially for the first time, to share just about everything so he has a complete picture of where you are as a patient right now. That will help drive his or her decisions on how that they may treat you.

It's a good practice for you to tell the doctor about all your symptoms. Because as a newly diagnosed patient, you don't know whether it's really related to polycythemia, or it's related to other conditions that you may have. Let him hear that information or her. And have that honest communication with the doctor.

In speaking with your doctor, depending on your diagnose and where you are as a patient today, talk to the doctor about the treatment options and how they may change in the future. When you're in your appointment with your doctor and talking about treatments, there may be financial considerations that you have to consider here. So ask the doctor directly, is this treatment covered by insurance? Is there other costs that I need to be aware of?

When speaking with your doctor and if they are using terms that you don't understand, ask for an explanation of that as this is relatively new to you. That's very, very common so do not feel overwhelmed with that. Ask the questions. They're there to educate you as much as they are to treat you.

Being diagnosed with polycythemia and getting the cancer diagnosis is really overwhelming for you. Speak to your doctor about if you need additional mental health care as well. We all go through this as humans. And see what resources are available to you.

When you get to the end of your appointment, go through your list to make sure you haven't missed any of your questions that you have. Ask for any clarification that you may have at that particular time. And understand what your next steps and treatment is.

In your first appointment with your hematologist, remember that you are a new patient, and they haven't seen you in the past. Again, have those discussions of your entire history and past history and how you came to see them at this point. [MUSIC PLAYING]