What’s the prognosis for MDS?
Myelodysplastic syndrome (MDS) is a condition that affects the production of blood cells in your bone marrow. MDS is sometimes referred to as “pre-leukemia.” That’s because about one-third of people with MDS will eventually develop acute myeloid leukemia (AML).
In MDS, the body produces too many immature bone marrow cells, also known as blasts. These abnormal blasts crowd out the healthy, mature cells that your body needs. In some cases, this can be cured by a stem cell transplant. But that can be a risky procedure, and it can’t be performed on everyone. Other treatments are designed to prevent or delay the development of AML.
Read on to learn more about MDS and factors that affect your outlook.
MDS life expectancy
Life expectancy with MDS can range from months to years, depending on what type of MDS you have, how likely it is that the MDS will become leukemia, and other risk factors you may have.
Your doctor may use a scoring system to determine the overall prognosis. This is one way to estimate life expectancy with MDS. These systems consider different factors about your condition and provide you with a score that tells you the risk of the MDS becoming leukemia. The score also gives your doctor an idea of your overall outlook.
These scores can also be linked to average survival rates. However, everyone’s situation is unique. Survival rates can’t be used to accurately predict what will happen for any one person in the future, but they can be used to help you and your doctor figure out how best to approach your treatment.
There are several scoring systems, including the International Prognostic Scoring System (IPSS) and the WHO Prognostic Scoring System (WPSS).
International Prognostic Scoring System (IPSS)
The IPSS is one method doctors use to assess MDS. The scoring helps to determine treatment and provide an overview of life expectancy.
The IPSS gives a score based on three different factors:
- What percentage of immature white blood cells (also known as blast cells) in your bone marrow are leukemic, or abnormal.
- How many chromosomal changes are in your bone marrow cells.
- How many low blood cell counts there are.
The lower the percentage of abnormal blast cells, the lower the score. Having negative chromosomal changes in the marrow cells adds to your score, as does the presence of any low blood cell counts.
The scores for each factor are added together to find your total score. Each score can be given a risk rating, from low risk to high risk. The risk rating indicates how likely it is that the MDS will become leukemia.
The MDS Foundation provides a calculator that you can fill in with the information needed to find your score.
The following median survival statistics for MDS, based on the IPSS risk groups, were published in 1997. They do not include people who received intensive chemotherapy.
|Risk level||Median survival rates|
“Median survival rates” refers to the average number of years that people in each risk group survive after being diagnosed with MDS. Some people may live longer than this average, or not as long as the average.
It’s also important to note that the available information about these survival rates is several years out of date. There have been many advances in treatment since these figures were compiled.
WHO Prognostic Scoring System (WPSS)
Another way to gauge life expectancy with MDS is with the WHO Prognostic Scoring System (WPSS). It’s based on factors, including:
- What type of MDS you have.
- What, if any, chromosomal abnormalities there are.
- How many blood transfusions you need.
Depending on your score in this system, your level of MDS may be rated anywhere from very low to very high. This rating can also be associated with survival rates:
|Risk level||Median survival rates|
|Very low||12 years|
|Very high||9 months|
These figures are based on diagnoses recorded between 1982 and 2004. This was also before some of today’s treatments were available.
There’s more to a prognosis than survival statistics. Most people with MDS don’t develop AML. Here is the potential risk of developing leukemia within five years for each risk category:
|Risk level||Percentage of people who develop AML|
Your individual outlook will depend on:
- your age
- overall health
- type of MDS
- the treatments available to you
- how well you respond to particular treatments
Your doctor will evaluate all the facts to provide you with an overall picture of what to expect.
Coping and support
MDS is a serious disease that requires careful monitoring. Find a healthcare team experienced in treating MDS. Ask about all your treatment options, as well as the pros and cons of each. Your doctor can also provide information on clinical trials.
The following organizations can provide more information and point you toward support services:
- AA-MDS International Foundation: stories of hope, support networks, and patient helpline: 1-800-747-2820
- CancerCare: free, professional support services, including education, counseling, financial assistance information, and support groups. To speak with an oncology social worker, call 1-800-813-HOPE (4673)
- MDS Foundation: information about support groups for patients, caregivers, and family members
Ask your doctor for referrals to local support services.
When you have MDS, the low white blood cell count puts you at high risk of infection. It’s important to keep yourself safe. Here are a few tips to lower that risk: