Facts & Resources

Confirming Your Myelodysplastic Syndrome Diagnosis

To check your myelodysplastic syndrome (MDS) diagnosis and find out the subtype, your physician will do a complete physical exam and ask about your health history and any symptoms.

You may also need to have more blood testss, a bone marrow aspiration and biopsy (where a small sample is taken and looked at with a microscope) or a cytogenetic analysis (tests for gene abnormalities).

Scoring MDS

For cancer, physicians usually use a system called staging to find out how early or advanced it is. MDS uses a different system to find out how early or advanced it is. Your score helps your physician predict which treatments are most likely to control your disease or put it into remission.

Physicians use the International Prognostic Scoring System-Revised (IPSS-R) or the Molecular International Prognostic Scoring System (IPSS-M) to score a patient with MDS. A patient's score is based on these things:

The percentage of blasts (immature cells) in the bone marrow
The type of chromosomal abnormalities in the cancer cells
The level of red blood cells (measured as hemoglobin) in the blood
The level of platelets in the blood
The level of neutrophils (a type of white blood cell) in the blood
If any mutations (changes) are found in cancer cells

Based on this information, patients are put into risk groups. These risk groups are only estimates for groups of people. Your risk group is meant to give you and your physician an idea of what might happen for you based on what usually happens for people whose MDS is similar to yours. Your score doesn't predict the exact outlook for you as an individual.

IPSS-R

Very low
Low
Intermediate
High
Very high

IPSS-M

Very low
Low
Moderate low
Moderate high
High
Very high

Tests

To decide on the treatment plan for you and your specific case of MDS, your physician will probably recommend:

Blood tests — to check how many cells of each type are in your blood (complete blood count), how the cells look (peripheral blood smear) and if they have certain abnormalities (blood chemistry).
Bone marrow aspiration and biopsy — using a needle to take small samples of your bone marrow. A pathologist looks at the samples using a microscope to look for and count abnormal cells. This gives us a firm diagnosis.
Cytogenetic analysis — tests of your marrow to look for chromosome abnormalities that help predict how your disease will progress and which types of treatment might be most effective.
Molecular testing — used to find mutations (changes) in the DNA of cancer cells. Some mutations are linked with a better or a worse outcome. Physicians use these test results to help plan your treatment.

Types of Treatment for MDS

Our MDS specialists work closely with you, your family and each other to get you back to health. At Fred Hutch, we provide all standard therapies for MDS and offer you access to the latest innovations through clinical trials.

Treatment for MDS

Learn About Subtypes

Fred Hutch physicians who specialize in MDS have a deep knowledge of MDS subtypes. They know which therapies to use and when to use them.

MDS With Genetic Abnormalties

MDS with low blasts and isolated 5q deletion (MDS-5q): Part of chromosome 5 is missing. Usually, this means you don’t have enough red blood cells in your blood. You have a low percentage of blasts (immature cells) in your marrow and blood.
MDS with low blasts and SF3B1 mutation (MDS-SF3B1): You have a low percentage of blasts (immature cells) in your marrow and blood and a mutation on the SF3B1 gene.
MDS with biallelic TP53 inactivation (MDS-biTP53): This type of MDS has an inactive TP53 protein.

MDS, Morphologically Defined

This involves look at the form and structure of the cells.

MDS with low blasts (MDS-LB): With this type of MDS, there are an unusually low number of blasts (immature cells) in the bone marrow and blood stream.
MDS, hypoplastic (MDS-h): In this form, there are less cells than normal in the bone marrow.
MDS with increased blasts (MDS-IB): In MDS-IB, the number of blasts (immature cells) is higher in the bone marrow and blood. There is also a low number of at least one type of blood cell.
MDS, unclassifiable (MDS-U): A subtype of MDS that includes patients whose blood and bone marrow test results do not fit any other type of MDS.
Chronic myelomonocytic leukemia (CMML): CMML is a type of myelodysplastic/myeloproliferative disease where too many myelomonocytes (a type of white blood cell) are in the bone marrow, crowding out normal blood cells.

Fred Hutch has researched and treated MDS for decades.

Learn More

Resources

There are many resources online for learning about your disease. Health educators at the Fred Hutch Patient and Family Resource Center have compiled a list of trusted sources to help you get started.

Whether you are newly diagnosed, going through treatment or know someone with cancer, our staff are available to tailor personalized resources and answer questions about support options in the community.

Cancer Research Organizations

Our list of online resources provides accurate health information from reliable and reputable sources, like the National Cancer Institute (NCI), the American Society of Clinical Oncology (ASCO) and the National Comprehensive Cancer Network (NCCN).

American Cancer Society

American Cancer Society (ACS): Overview of Myelodysplastic Syndromes

If you have myelodysplastic syndrome or are a caregiver for someone who does, knowing what to expect can be helpful. Here you can find out all about myelodysplastic syndrome in adults, including risk factors, symptoms and how they are found and treated.