What is the outlook and life expectancy of MDS?

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Treatment for MDS depends on several factors, including the type of MDS, the individual’s age, and other health conditions they may have.

Those with a low risk of MDS developing into cancer may not need treatment initially. However, a doctor will carefully monitor their blood counts to ensure the condition does not progress to MDS cancer.

If someone needs treatment, doctors may consider a stem cell transplant (SCT) as a potential cure for MDS. However, many older adults are not eligible for STC due to potentially life threatening side effects.

Other treatments aim to bring the number of blood cells and the balance of different cells back to a normal level while also managing symptoms. If an individual has treatment, they may have periods of intensive treatment with rest periods in between.

Treatments may include:

• Supportive treatment: Options include blood transfusions, drugs to remove excess iron from the blood, growth factor drugs, and antibiotics.
• Growth factors: These hormone-like substances help the bone marrow to make blood cells.
• Chemotherapy: This can prevent progression in people with a higher risk of developing acute myeloid leukemia (AML).
• Stem cell transplant: A surgeon removes cancer-producing stem cells and reinfuses new stem cells through a catheter in a blood vessel. These cells then travel to the bone marrow to make new blood cells.

An individual may experience severe side effects from cancer treatment. If a treatment is not improving blood cell counts, a person may choose to stop active treatment and focus on supportive care.

MDS is a chronic disease, and people will require adequate health insurance to cover the expense. Sometimes, this may add to the emotional difficulties that MDS can present.

Progression to leukemia

Leukemia can develop in MDS. Leukemia is a cancer of the blood-forming tissues. About one-third of people with MDS develop AML, which is cancer of the bone marrow. For this reason, doctors sometimes refer to MDS as preleukemia.

People with more advanced MDS have a much higher risk of AML.

Currently, no lifestyle changes or dietary supplements can reduce the risk of MDS becoming AML. However, taking steps such as quitting or avoiding smoking (if applicable), maintaining a moderate weight, and exercising may help a person feel better.

Doctors typically stage cancer based on how far it has grown and spread. They can use this staging to help them plan treatment and determine an individual’s outlook.

However, as MDS affects bone marrow, doctors do not base an individual’s outlook on tumor size or whether it has spread. Instead, they use a scoring system called the Revised International Prognostic Scoring System (IPSS-R).

The IPSS-R groups people with MDS into five categories based on risk:

• very low
• low
• intermediate
• high
• very high

This system takes into account the following five factors:

• the percentage of early forms of blood cells in the bone marrow called blasts
• the type and number of abnormal chromosome changes in the cells
• the level of hemoglobin in the blood, which indicates levels of red blood cells
• the level of platelets in the blood
• the level of white blood cells called neutrophils in the blood

There are various subtypes of MDS. The type an individual has is a critical factor in a doctor’s decision about treatment and outlook. Doctors calculate life expectancy for individuals with MDS based on their IPSS-R category from very low to very high.

• very low: 8.8 years
• low: 5.3 years
• intermediate: 3 years
• high: 1.6 years
• very high: 0.8 years

However, experts base this categorization system on people who received a diagnosis many years previously. This means they had no access to modern treatments that may have improved their life expectancy.

The World Health Organization (WHO) uses the WHO Prognostic Scoring System (WPSS), which derives from three factors:

• the WHO classification of MDS
• any abnormalities in the chromosomes
• whether a person needs a blood transfusion

The WHO based these rates on people who received a diagnosis between 1982 and 2004. These survival rates also take into account the risk of progression to AML.

• very low: 12 years with a 3% risk of AML
• low: 5.5 years with a 14% risk of AML
• intermediate: 4 years with a 33% risk of AML
• high: 2 years with a 54% risk of AML
• very high: 9 months with an 84% risk of AML

Some people may prefer not to know the survival rates for their cancer and can make this choice when they receive the diagnosis.

There are different subtypes of MDS. The subtype a person has affects the outlook and course of treatment. A doctor identifies the subtype by testing a person’s blood and bone marrow.

The basis for these types are:

• how many early forms of red blood cells, white blood cells, or platelets in the bone marrow look abnormal under the microscope (doctors call this dysplasia)
• whether there are any low blood cell counts
• the proportion of early red blood cells that contain a ring of iron deposit around the nucleus (doctors call these ring sideroblasts)
• the portion of early forms of blood cells in the bone marrow or blood
• certain gene changes in the bone marrow cells

The types of MDS are as follows:

• Myelodysplastic syndrome with multilineage dysplasia (MDS-MLD): Dysplasia is in at least 10% of early cells of two or three cell types in the bone marrow. The individual has low counts of at least one type of blood cell. However, there is a normal blast count.
• Myelodysplastic syndrome with single lineage dysplasia (MDS-SLD): At least 10% of early cells of one cell type have dysplasia. The individual has low numbers of one or two blood cell types, with an average number of blasts. People can live a long time with this form of MDS, even with no treatment.
• Myelodysplastic syndrome with ring sideroblasts (MDS-RS): A large proportion of early red blood cells are ring sideroblasts, at least 15%. Doctors further subdivide this type depending on dysplasia into:
  • MDS-RS with single lineage dysplasia (MDS-RS-SLD): dysplasia in one cell type
  • MDS-RS with multilineage dysplasia (MDS-RS-MLD): dysplasia in various cell types
• MDS with excess blasts (MDS-EB): An increased number of blasts in the bone marrow, blood, or both with low numbers of one type of blood cell or more. An individual may have severe dysplasia in the bone marrow. Doctors further divide this diagnosis into two types based on blasts:
  • MDS-EB1: 5–9% of the cells in the bone marrow are blasts or 2–4% of the cells in the blood
  • MDS-EB2: 10–19% of the cells in the bone marrow are blasts or 5–19% of the cells in the blood
• Myelodysplastic syndrome with isolated del(5q): This is a low red blood cell count and a specific genetic abnormality, or DNA, mutation. It has a good outlook.
• Myelodysplastic syndrome, unclassified (MDS-U): This is an uncommon type with a low count of one type of blood cell that does not fit the criteria for other forms. It has an unclear outlook because it is rare.

In general, the exact causes of MDS are unclear.

Some factors increasperson’son’s risk for MDS, although these do not necessarily mean a person develops the disease. Some people develop MDS without having any of the risk factors.

Cancer treatment

Chemotherapy is the most important risk factor for MDS.

When the condition develops after a person has chemotherapy, doctors call it secondary MDS. Radiation therapy further increases a person’s risk for MDS.

According to the MDS Foundation, those who have had chemotherapy or radiation therapy for potentially curable cancers have a higher risk of developing MDS up to 10 years after treatment.

Genetic syndromes

While a person cannot inherit MDS, people with certain genetic syndromes appear to have an increased risk for MDS. According to the ACS, these include:

• Fanconi anemia
• Shwachman-Diamond syndrome
• Diamond Blackfan anemia
• familial platelet disorder
• severe congenital neutropenia
• dyskeratosis congenita

Environmental exposure

Exposure to radiation and certain chemicals has links to MDS. The chemical benzene can trigger MDS. Some employees may be at risk of exposure to this chemical due to their occupations.

Other risk factors include:

• smoking
• age
• sex

According to the ACS, more males develop MDS than females. Also, most people with MDS receive a diagnosis at 60 years of age or older. Very few people under 40 years of age develop MDS.

Sometimes, a person with MDS may develop feelings of depression and anxiety. There are options to help people living with MDS cope with their condition, including:

• family and friends
• religious or social groups
• MDS support groups
• professional counselors and psychotherapists

The MDS Foundation provides support for those living with MDS. There are support groups across the United States and internationally.

Additionally, the Aplastic Anemia and MDS International Foundation provides virtual and local support groups to help connect people who are adapting to life with bone marrow conditions.

MDS is a severe, chronic syndrome. The recovery rate varies as it often progresses to AML, a form of leukemia.

An individual’s outlook depends on the treatment and the progression of MDS. A stem cell transplant provides the highest chance of curing the condition.

Some therapies have severe side effects. People may choose to stop treatment and focus on maintaining their quality of life with supportive care.

A robust support network and comprehensive medical attention can help a person cope with this chronic condition.