Myelodysplastic syndromes, or MDS, are a group of disorders in which a person’s bone marrow does not produce enough functioning blood cells.

MDS is a type of cancer. MDS damages some of the blood-forming cells in the bone marrow, leading to low counts of one or more types of blood cells.

The outlook for MDS varies, depending on factors including:

  • the type of MDS
  • age at the time of diagnosis
  • progression of cancer
  • success of the treatment

The American Cancer Society (ACS) says that the exact number of MDS diagnoses each year is not clear. Some people estimate around 10,000 diagnoses each year. However, others believe there are more.

In this article, we discuss the outlook for people with MDS and consider how a doctor assesses their health.

A silhouette of people on a benchShare on Pinterest
Peter Garrard Beck/Getty Images

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

Those with a low risk of MDS becoming cancer may not need treatment at first. However, doctors carefully monitor their blood counts moving forward to make sure the condition does not progress to MDS cancer.

If someone needs treatment, doctors usually consider a stem cell transplant (SCT) the only way to potentially cure MDS. However, many older adults are not eligible 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 normal while also managing symptoms. If an individual has treatment, they may have periods of intensive treatment with time between to rest.

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 who have a higher risk of developing acute myeloid leukemia (AML).
  • Bone marrow transplant: A surgeon implants donor stem cells into the bone marrow to replace the abnormal cells.

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

Because MDS is a chronic disease, people require adequate health insurance to cover the costs because treating a chronic condition is expensive. Mounting costs 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.

At present, there are no lifestyle changes or dietary supplements that can reduce the risk of MDS becoming AML. However, taking steps, such as quitting or avoiding smoking, maintaining a moderate weight, and engaging in exercise 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, because MDS affects the bone marrow, doctors do not base an individual’s outlook on tumor size or if it has spread. Instead, they use a scoring system that considers other factors called the revised International Prognostic Scoring System (IPSS-R) risk groups.

The revised International Prognostic Scoring System (IPSS-R) groups people with MDS into five categories that it bases on risk:

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

This system takes into account the following five factors:

  • percentage of early forms of blood cells in the bone marrow, called blasts
  • type and number of abnormal chromosome changes in the cells
  • level of hemoglobin in the blood, which indicates levels of red blood cells
  • level of platelets in the blood
  • 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-Risk 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 ago. This means that they had no access to modern treatments that may have improved their survival chances.

The World Health Organization (WHO) also has a prognostic scoring system called WPSS. This 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 1982–2004. 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 not wish to know the survival rates for their cancer and can choose not to when they receive the diagnosis.

There are different subtypes of MDS. The subtype that a person has affects the outlook and course of treatment. A doctor identifies the subtype by testing someone’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)
  • if 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 2 or 3 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, and there is 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 that has 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 not clear.

Some factors increase a person’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 itself, 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 occupations put employees at regular exposure to this toxin.

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.

Q:

Can MDS turn into a blood cancer that is not AML?

Anonymous

A:

MDS can turn into acute lymphoblastic leukemia (ALL), but this is extremely rare.

Yamini Ranchod, PhD, MSAnswers represent the opinions of our medical experts. All content is strictly informational and should not be considered medical advice.

If a condition is tough for doctors to treat, a person 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 failure.

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 progression of MDS and treatment success. A stem cell transplant provides the highest chance of curing the condition. Because of the severe side-effects of some therapies, people may choose to stop treatment and focus instead on preserving their quality of life with supportive care.

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