Mayra Lee, a Registered Nurse, explains the positive benefits of educating yourself about AML and outlines key steps for learning more about your disease.
Mayra Lee, RN, is an outpatient clinic nurse at Moffitt Cancer Center. More about the expert.
So, the benefit of becoming informed about your disease when you’re diagnosed with AML would be that you are empowered. You will be empowered to – so much control is lost when you hear the word cancer. So much of your life changes in a matter of days or weeks from the time you’re told you have AML. Becoming informed about the treatments, about your disease, about what it is, about what the next step is empowers you to have control of the disease again when so much of your life is going to be out of control. It makes you be the driver in the disease along with your medical team. The medical team will steer you in which direction we think we should go but you will, ultimately, be the one making the decision with your team. You will not feel like the decision was made by your doctor. The decision is made together as it should be. The patient, the family, and the physicians and the team of medical people that take care of you.
It will not be something that your doctor does alone or that you’re doing alone because this is a very long journey, a very tedious journey. And the more you know about it also the less scared and the less stressed out you are about the diagnosis itself.
Patients can take key steps such as to become informed about their disease such as I think the first step would be to pick up those informational books or educational books that you will see out in the lobby in most physicians’ offices about AML, what is AML. That is step No. 1. Asking the nurses and the doctors do you have any information on my diagnosis, is there a reputable website that you recommend. There is a lot out there on the internet but a lot is not reputable and a lot is just hearsay.
And a lot of it is patients sharing in their own stories, which are all good formats but in the very beginning, you want to go to reputable websites. You want to hear it from NCCN or any one of those websites that have really good information about what the disease really is. And then, you can navigate whichever way you want, if you want to join those forums. And then, you’re better informed and you’re better educated as to what to expect.