Mayra Lee, RN, is an outpatient clinic nurse at Moffitt Cancer Center. More about the expert.
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During an initial visit, patients often forget to ask about how the treatment for their AML cancer is going to impact the quality of their life and all of the things that they do on a daily basis and being impacted by such a treatment. Treatments are, often times, discussed about we’re going to do X chemo or Y chemo, seven plus three, three plus seven, five days on Dacogen, whatever it may be. But the patients don’t often grasp the amount of quality of life that will be taken from their lives.
Other things that impact the quality of their life is a financial burden that the treatments bring about, having caretakers around them. We often see patients that don’t have a lot of family members or don’t have family here in the state that they’re residing in and they don’t have a lot of support. So, these are all things that are going to be impacted by the treatments for AML. And a lot of times, patients don’t ask that question very clearly about what is the realistic expectations of my life during the treatment phase.
Patients can best prepare for an office visit by asking questions, writing down the questions, before they come to the office and having it prepared.
And I think it’s very important for patients to write those questions down before they come to their treatment. It’s also very important to bring a note pad and a pen and write down things that are being said during your visit, whether it be the first time you hear this or a second or third opinion is very important to write down treatments. It’s important to write down things that you might not have picked up on the first visit when you were first diagnosed like chromosomes and different treatments and different tests that are going to be ordered. It’ very difficult to retain all of that information in one sitting. So, it’s important to bring a note pad and bring a friend to write those things down with you.
It’s very important to bring a family member or a friend to your appointments because that person – you can bounce back ideas and you can bounce back information.
You’re not there alone and it makes you feel like you’re not carrying the burden of now distributing this information to your friends and your family who are, obviously, very worried about you, your prognosis, your diagnosis, what did the doctor say. And you have someone else to say oh, they said this or the doctor said that. And you will not remember everything that was said in one sitting. So, bringing your friend or family member helps put all of that information together and helps recall everything that was said in that visit.