Myelodysplastic syndromes (MDS), a rare category of bone marrow disorders that may develop into acute myeloid leukemia, are categorized into risk groups ranging from very low to very high risk. However, this language can be misleading to patients. Low risk (LR) does not equate to low impact or lack of urgency. In this episode, CANCER BUZZ speaks with Amy DeZern, MD, MHS, from Sidney Kimmel Comprehensive Cancer Center, and Christin Blair DeStefano, MD, FACP, from Walter Reed National Military Medical Center, about the importance of aligning language and terminology regarding LR-MDS across academic and community settings. These experts candidly discuss their own collaboration and the importance of early conversations with patients to align expectations on goals, disease trajectory, and treatment sequencing. Guests: Amy DeZern, MD, MHS Hematologist/Oncologist Director, Bone Marrow Failure and MDS Program Sidney Kimmel Comprehensive Cancer Center Baltimore, MD Christin Blair DeStefano, MD, FACP Hematologist/Oncologist Walter Reed National Military Medical Center Bethesda, MD "I really try and individualize [language] to a patient and their family, because I worry that sometimes the terminology 'lower risk' may not correctly convey the impact the disease is going to have on an individual human's life." — Amy DeZern, MD, MHS "Frequent reassessment—questioning our patients about quality of life and if we're meeting the goals they have—should be something that's readily reassessed, especially in the lower risk space, every 2 to 3 months, just to make sure we don't put anybody on autopilot." — Amy De Zern, MD, MHS "There's been such an explosion in understanding the molecular landscape of MDS and slicing and dicing it into different diseases that fall under the MDS umbrella. It has sometimes created a little bit of confusion." — Christin Blair DeStefano, MD, FACP Resources: ACCC Hematologic Malignancies Resources Blood Cancer Awareness Month: Tackling Communication Challenges Addressing Frequency of Care to Improve Quality of Life in Patients with Low-Risk MDS Defining and Managing Erythropoietin Stimulating Agents (ESAs) Failure in Patients with Low-Risk MDS
