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What to do and expect immediately after diagnosis

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Published on March 3, 2016

Dr. Alan Burnett from Cardiff University, Cardiff, UK provides practical advice on what you can do once a diagnosis of acute myeloid leukemia (AML) has been confirmed.
Recorded at the American Society of Hematology (ASH) Annual Meeting 2015, in Orlando, FL.

This programme has been supported by Pfizer, through an unrestricted educational grant to the Patient Empowerment Foundation

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Transcript | Advice on what to do and expect immediately after a diagnosis of acute myeloid leukaemia (AML)

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That's how you’ll get care that's most appropriate for you.

I don’t think patients should be bashful about asking for information from the doctor or the nurse.  I mean, it’s quite common for patients to feel they’re taking up the doctor’s time.  This is nonsense, they deserve the doctor’s time, and they should have somebody with them when they are having their first discussion, they should potentially have that person take a few notes.  This will raise questions when they get home, and they should make an arrangement that they can come back to the nurse or even the doctor in subsequent interview to clarify issues.  And, you know, they’ve got to kind of understand, I think, what the treatment involves, how long they’ll be in hospital, whether their hair will fall out, whether they’re allowed to use makeup, you know, how will they feel, what happens if they get sick during the treatment, what can go wrong, and probably what are my chances of getting benefit from this, Doc, this sort of thing.

I think that looking at it from the medical side it’s actually quite difficult to be, to know how frank to be with patients.  You must never mislead patients, but we get our information as an average chance of something, yes or no, or benefit or no benefit.  And no patient is an average; they are a range, and sometimes you feel, talking to a patient, very well-motivated, this patient could do quite well.  So, you know, on our side of the fence you don’t want to overestimate the probability, but sometimes you have a nice feeling.  And also, as a doctor you say, you know, in a month’s time we’ll know how your treatment is going, we’ll have another chat about the options for what we do at that point.

So there are stages about it, and it’s surprising to me over the years how the biggest anxiety for patients is the uncertainty during the diagnostic days.  Once there’s a treatment plan in place and they’ve had the discussion, it’s amazing how patients settle down and, you know, get on with it.  And I’ve found over the years that the nurses in the caring team are very important to talk to, and more than willing to talk to a patient any time over the phone or anything like that.  So I think it’s generally speaking they are very well-supported patients.

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