An AML diagnosis can bring uncertainty and difficult decisions. Dr. Anand Patel, an AML specialist, shares the essential questions every patient and care partner should ask after diagnosis, particularly addressing risk classification, treatment options, clinical trials, side effects, and the potential for cure. Learn how these conversations can help you better understand your care plan to make informed decisions with your healthcare team.
Dr. Anand A. Patel is the Medical Director of the Inpatient Leukemia Service at the University of Chicago Medical Center. Learn more about Dr. Patel.
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Transcript
Katherine Banwell:
Are there questions that patients should ask about their diagnosis?
Dr. Anand Patel:
In my mind, when I meet a patient for the first time, the things that I want to make sure I review with the patient, and oftentimes, these will encompass many of the questions that come up, is, “What is my diagnosis? What are these symptoms or complications that I can expect with this diagnosis? What is my risk stratification?” So, not just what my diagnosis is, but do I fall in a favorable or a less favorable risk category? I think it’s always important to talk about what would things look like if, for one reason or another, this was not treated at all.
I think it’s always important to have that perspective of, “What would happen if someone chose to not receive treatment for their AML?” And then, I pause there and see what additional questions may come up before we move into treatment, and what that may look like.
So, from a treatment perspective, I think the important things for patients to consider is, “What are the standard approaches for my AML? What is the expected rate of success or remission for my AML? Are there clinical trials that are available to me that would be considered? What would be the potential benefits and drawbacks to participating in a clinical trial, versus the standard treatment? And ultimately, what would be the expected side effects of the treatment itself?” Where treatment needs to be delivered.
So, whether it can be delivered at a center closer to home, versus at a maybe further away center with more expertise in AML. “Does the treatment need to be delivered in the hospital, or can it be given in the clinic? And then, is there a route to cure for my disease?” So, will that route to cure involve chemotherapy alone? Would something like a stem cell transplant be considered? Or are there features that let us know, even from the beginning, that unfortunately, there may not be a way to cure this disease, but rather, our goal is to try and maintain control for some amount of time?
Katherine Banwell:
Do all hospitals provide mutation testing for AML? And if not, how can patients insist on additional testing?
Dr. Anand Patel:
So, there’s been a lot of work to go into underscore the absolute need to do molecular testing or genetic testing. Not just at diagnosis, but at these various time points we’ve discussed. So, at time of remission, and also if the disease were to come back or to persist. This has been incorporated into all major guidelines for AML. So, an example is, I am part of the National Comprehensive Cancer Network AML guidelines, the NCCN guidelines. And in an effort to make sure that this testing is not only being offered, but done, we’ve incorporated that testing into the guidelines.
And this has been done in various other kind of AML authoritative recommendations. I say, as a patient, you should feel empowered to specifically ask, when you are undergoing that bone marrow biopsy, “Will this be sent for molecular testing? Could you tell me the name of the panel that is being sent?”
Because the amount of genes that are looked at can actually vary widely depending on the panel that is sent. And if the answer is “No,” or “I don’t know,” I think patients should feel incredibly empowered to push for it, because it is the standard of care.
Molecular testing influences so much of our decision-making around AML. If you don’t have molecular testing, it’s a little bit like driving with an outdated map. You kind of sort of know where you’re going, but you certainly would love to have the GPS on top of that.