What is the prognosis of MDS?

Prognosis means the expected outcome of MDS or how it will behave in the future. When deciding your treatment, your doctor may discuss many aspects of the disease with you. For example:

  • the International Prognostic Scoring System (IPSS) or a revised version (R-IPSS)
  • your risk group
  • your age
  • how the disease is affecting you
  • your general fitness

The International Prognostic Scoring System (IPSS)

Doctors have created a scoring system to help them understand how MDS is likely to behave over time. It is called the International Prognostic Scoring System. Together, the classification systems and the scoring system help your doctor know:

  • How serious or severe your MDS is
  • How likely you will develop AML or not
  • How long you are likely to live
  • What you can expect from MDS over time
  • Which treatments are best for now, and when they should be changed.

The IPSS is based on three factors: the amount of blasts in your bone marrow, the number of cell types that are low in your blood, and the chromosome changes. Each factor gets a score. Together, the scores tell which risk groups you fall into. You can be put into one of four risk groups – two lower risk and two higher risk.

  • Low risk MDS: These are the IPSS groups of Low or Intermediate-1.
  • High risk MDS: These are the IPSS groups of Intermediate-2 or High.

Do ask your doctor and nurse to explain the system if you find it difficult to understand. It can be confusing as there are many aspects to it. You can also call the National Cancer Helpline on 1800 200 700 for advice.

Understanding the scoring system

Using the IPSS, you are given a score between 0 and 3. Scores of less than 1.5 are considered lower risk. Here are some of the definitions used.

1. Percentage of blasts in bone marrow

Blasts refer to the youngest or most immature white blood cells. In normal bone marrow, about 5 of every 100 white cells are blasts.

2. Cytogenetics

This deals with the genes in the bone marrow cells. Karyotype refers to the number and appearance of the chromosomes.

  • Good: This means normal chromosomes, deletion of Y chromosome (-Y), del(5q), del(20q).
  • Poor: This means complex (more than 3 chromosomal abnormalities), chromosome 7 abnormalities.
  • Intermediate: This includes all other abnormalities.

3. Cytopenias

Cytopenias refer to the types of low blood counts. The haemoglobin in red blood cells is measured as well as the most common type of white blood cells called neutrophils.

  • Haemoglobin – less than 10g/dl
  • Neutrophils – less than 1.8 x 109/l
  • Platelets – less than 100 x 109/l

IPSS table

Score 0 0.5 1 1.5 2
Marrow Blast (%) Less than 5 5-10 11-20 21-30
Karyotype Good Intermediate Poor
Cytopenias 0-1 2-3

The individual scores are added together to give the IPSS score. The scores for the risk groups are as follows:

Risk Group Score
Low 0
Intermediate-1 0.5 to 1.0
Intermediate-2 1.5 to 2.0
High greater than 2.5

Again, do ask your doctor and nurse to explain these scores. You can also call the National Cancer Helpline on 1800 200 700 or visit a Daffodil Centre.

In Summary:

  • The cause of MDS is unknown. Certain factors like age, smoking, exposure to radiation, chemicals or previous chemotherapy drugs can increase your risk of getting it. Rarely, some inherited disorders may lead to MDS.
  • Some symptoms of MDS are feeling tired, shortness of breath, infections or bruising.
  • MDS is diagnosed by a physical exam, blood tests and bone marrow tests.
  • There are different types of MDS. These include high risk and low risk groups.
  • The expected outcome or prognosis for different types of MDS differs.
  • The International Prognostic Scoring System is used to predict how MDS will behave over time.
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