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Diagnosed With Myelodysplastic Syndrome (MDS)? Expert Advice

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What do you need to know if you’ve been diagnosed with myelodysplastic syndrome (MDS)? Dr. Singh shares three key steps patients should take early in their care, explains how a second opinion can impact treatment decisions, and discusses the importance of molecular testing in personalized care. 

Dr. Abhay Singh is a physician specializing in acute and chronic leukemias at Cleveland Clinic and serves as Assistant Professor of Medicine at the Lerner College of Medicine of Case Western Reserve University. Learn more about Dr. Singh.

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Transcript

Jamie Forward:

Dr. Singh, what are three key pieces of advice that you would have for a patient who’s just been diagnosed with myelodysplastic syndrome?  

Dr. Abhay Singh:

Myelodysplastic syndrome is diagnosed after doing a bone marrow procedure where the pathologist looks under the microscope, if the cells are looking normal or abnormal. So, as you can imagine, there’s a lot of subjectivity involved. It’s based on the pathologist who might be reviewing the case. And sometimes the dysplasia or dysplastic cells or the abnormal cells under the microscope, they can be at a very tricky percentage where you can or cannot call it MDS. There was actually a study done a year or two ago where they showed that there can be a lot of discrepancy in the diagnosis of MDS when they compare between different pathologists. 

So, one thing that I always encourage is that always have that doubt in your mind that is this truly MDS, yes or no, and then having another pathologist to look at is helpful. On the same token, because it is a rare disorder, having a second opinion is also an important thing because there can be not only prognostic implications or treatment implications, but there could be diagnostic implications as well to finding the right diagnosis that fits the best to guide the treatment in that possible way.  

And the third is, I think, it’s becoming more so mainstream and common now, but always have a molecular test done, which is the next-generation sequencing panel because it’s such a strong assay that can give us lots of information in terms of designing treatment, in terms of prognostic implications, and as we discuss therapeutic implications as well.  

Jamie Forward:

Why is seeing an MDS specialist so important? 

Dr. Abhay Singh:

I think going to a specialized center gives an opportunity to be evaluated for a clinical trial. And although we have good standard of care treatments available, but in our specialized centers, there’s always an effort to increase or improve outcomes based on that standard of care. So, we’re always looking for newer treatment options, adding on to that standard of care option, or looking for any mutation-specific clinical studies that are available at specialized centers.  

And another thing is because it is a rare disorder, when you come to a center that’s specialized for MDS, there is a lot of expertise because of just by the sheer volume of cases that we end up seeing. So, I think there’s a lot of volume, there’s a lot of discussion, there’s multidisciplinary care involved, there’s tumor boards that happen every other week or every month where cases are discussed. So, I think there are several advantages to having that second opinion or getting your care at a specialized center focused on myelodysplastic syndromes.  

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