Myelodysplastic Syndromes (MDS) Diagnosis: Questions to Ask

This page is for people being tested for, or newly told they have, myelodysplastic syndromes. It explains the tests and lists questions to ask.

Myelodysplastic syndromes, or MDS, happen when immature blood cells in your bone marrow do not mature into healthy blood cells. That leaves you with fewer working red cells, white cells, or platelets. This can cause infections, anemia, or bleeding problems. It depends on which cell type is affected most.

Doctors confirm MDS with blood tests and a bone marrow biopsy. In the biopsy, a long, hollow needle goes into the hipbone or breastbone to reach the marrow. This lets the team examine the cells inside closely.

Ask the clinician to write the complete diagnosis, including subtype, stage, or risk group when those terms apply. Then ask which result established it.

A complete blood count measures your red cells, white cells, and platelets. A blood smear looks at the shape of your cells and their iron content. Cytogenetic tests and FISH look for chromosome changes in the cells. Flow cytometry checks cell features and markers. Your team may also check your vitamin B12 and folate levels. NCI lists these checks as part of the workup. If your levels are low, ask whether that changes your diagnosis.

• What tissue or blood finding confirms this diagnosis?
• What did the bone marrow biopsy show about cell development and chromosome changes?
• Were FISH or flow cytometry tests done, and what did they find?
• Would review by a pathologist who regularly sees MDS be useful?

MDS can affect red cells, white cells, platelets, or more than one type at once. Different combinations behave very differently. Ask what percentage of "blast" cells showed up in your bone marrow. Blasts are immature cells that have not developed properly. That percentage is one of the main things doctors use to judge how the disease will likely behave. Ask whether any chromosome changes were found. Ask whether your MDS developed on its own, or after previous cancer treatment. NCI lists that history among the factors that guide treatment.

Ask what the team knows about the extent of disease and what remains uncertain. A stage, grade, or risk group should be explained in words, not only as a number or abbreviation.

Ask which symptoms should prompt an urgent call. Shortness of breath, unusual weakness, pale skin, easy bruising, and unexpected bleeding can all come from low blood counts. Some of these need attention right away. Do not wait for your next scheduled visit. Call 911 for severe shortness of breath or bleeding that will not stop.

Ask where the pathology slides, bone marrow results, and genetic test results are stored, and how to request them. Ask whether the current center can send them directly to another center. A second opinion does not require rejecting the first team. A second opinion from a center that regularly sees it can confirm the plan, or catch a detail worth discussing.

Before the visit ends, write down the next test, appointment, responsible person, and expected timing. Ask how results will arrive, and who will explain them if they show up in a portal first.

The most useful outcome is a short sentence: "This is what we know, this is what we are waiting for, and this is the decision that comes next."

• National Cancer Institute — Myelodysplastic Syndromes Treatment (PDQ)