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 that include:

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

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

In this article, we look at the outlook for people with the condition. We also consider how a doctor reaches a prognosis for those with MDS.

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A number of factors can affect the outlook for people with MDS.

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, a doctor will carefully monitor their blood counts, moving forward, to make sure the condition does not progress.

The purpose of treatment is to bring the number of blood cells and the balance of different cells back to normal while also managing symptoms.

For most people, treatment cannot often cure MDS. Typically, there will be periods of intensive treatment with time to rest 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 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.

Of these options, a bone marrow transplant is the best chance for a person with MDS to cure the condition. However, many older adults are not eligible due to potentially life threatening side effects.

The side effects of cancer treatment can be severe. If a treatment is not improving blood cell counts, a person may choose to stop active treatment and focus instead on supportive care.

MDS is a chronic disease, and so it is vital to make sure some form of insurance is available. Treating a chronic condition can be expensive, and mounting costs may add to the emotional difficulties that MDS can present.

If a condition is tough to treat, it can lead to feelings of depression and anxiety. If these feelings develop during MDS treatment, people can look to possible support networks. These could be:

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

Progression to leukemia

About one-third of people with MDS will 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 healthy body weight, and engaging in exercise may help a person feel better.

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A lot of life expectancy estimates do not take into account modern treatments.

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 how many low blood counts a person has had and the proportion of white cells in their blood. It also accounts for the number of abnormal gene changes in bone marrow cells.

The survival rates for each group come from the average life expectancy after diagnosis for people in that group.

  • Very low: 8.8 years
  • Low: 5.3 years
  • Intermediate: 3 years
  • High: 1.6 years
  • Very high: 0.8 years

It is worth noting that these estimates come from people with a diagnosis in the past. These individuals did not receive more modern treatments that may have improved their survival chances.

The World Health Organization (WHO) also have 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 will affect the outlook and the course of treatment. A doctor identifies the subtype by testing an individual’s blood and bone marrow.

The types are based on:

  • blood cell counts
  • percentage of blasts, or immature blood cells, in the bone marrow
  • risk that MDS will turn into AML

The types of MDS are as follows:

  • Refractory anemia: Low red blood cell count, less than 5% blasts in the bone marrow, and does not usually turn into AML.
  • Refractory anemia with ringed sideroblasts: A low number of red blood cells, more than 15% sideroblasts, or red blood cells that have iron in a ring around the center, and low chance of turning into AML.
  • Refractory cytopenia with multilineage dysplasia: Two of the three types of blood cell counts are low, less than 5% blasts, and can turn into AML.
  • Refractory cytopenia with multilineage dysplasia and ringed sideroblasts: Two of the three types of blood cells counts are low, more than 15% sideroblasts, and can turn into AML.Refractory anemia with excess blasts (types 1 and 2): A small number of any of the three types of blood cells, 5% to 20% blasts in the bone marrow, and approximately 40% turn into AML.
  • Myelodysplastic syndrome, unclassified: 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 prognosis.
  • Myelodysplastic syndrome associated with isolated del(5q) chromosome abnormality: This is a low red blood cell count and a specific genetic code, or DNA, mutation and has a good outlook.

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 will develop 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.

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

Genetic syndromes

While a person cannot inherit MDS itself, people with certain genetic syndromes appear to be more at risk for MDS.

According to the American Cancer Society, these include:

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

Environmental exposure

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Doctors tend to diagnose MDS in people over 60.

Exposure to radiation and certain chemicals has links to MDS. The chemical benzene, which people in some occupations can have regular exposure to, can be a trigger for MDS.

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.

MDS is a severe, chronic syndrome from which very few people successfully recover. It often progresses to AML, which is a form of leukemia.

Depending on which scoring system a doctor uses, life expectancy can change, according to the progression of MDS.

Some people may choose to stop chemotherapy or radiotherapy treatment and focus instead on preserving their quality of life with supportive care.

A robust support network and active lifestyle, where possible, can help a person maintain a good quality of life with this chronic condition.