Receiving a myelodysplastic syndromes (MDS) diagnosis isn’t easy, and talking with your family about it can feel overwhelming. Here’s what you need to know to answer some of the most common questions.

Myelodysplastic syndromes (MDS) represent a group of blood cancers caused by issues with the bone marrow. In MDS, bone marrow produces atypical (dysplastic) red blood cells, white blood cells, or platelets. These cells often die sooner than they should or aren’t fully functional.

As a cancer diagnosis, MDS can feel overwhelming, and talking with your family about what to expect isn’t always easy.

To help ensure you have the answers to some of the most common family questions on MDS, Healthline talked with Dr. Mikkael Sekeres. Dr. Sekeres is the Committee on Communications Chair at the American Society of Hematology and Professor of Medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center, University of Miami Miller School of Medicine.

Health experts characterize MDS as cancers of the cells in the bone marrow.

The bone marrow is the bodily area that makes the cells in our bloodstream, such as:

  • red blood cells, which provide oxygen to our tissues
  • white blood cells, which form our immune system
  • platelets, which help stop bleeding

With MDS, the cells in our bone marrow acquire mutations that compromise their ability to function and prevent them from making these cells.

As with other cancers, MDS can occur in less or more aggressive forms. When MDS is less aggressive, blood counts are not nearly as compromised, and many people still experience a good quality of life.

However, when MDS is more aggressive, blood counts are more severely compromised, and people may require blood or platelet transfusions or be more susceptible to infections.

Once a person has MDS that requires blood or platelet transfusions or is in a more aggressive form, treatment should be initiated.

More aggressive MDS is quite similar to acute myeloid leukemia (AML) and almost always requires therapy. However, AML involves having a high blast percentage. Blasts are immature immune cells that arise from the bone marrow. We all have blasts because we need immature immune cells to eventually create a mature immune system to fight infections.

A typical percentage of blasts is generally less than 5%. Once they reach between 5% and 19%, a person is diagnosed with MDS or a different bone marrow disorder. However, once the blasts reach 20%, health experts define someone as having acute leukemia. As with aggressive MDS, AML requires therapy most of the time.

MDS can progress from less aggressive forms to more aggressive forms. This occurs when the MDS cells develop more mutations, and the blast percentage in the bone marrow increases. Sometimes, MDS does not progress.

Other times, MDS can progress from less aggressive to more aggressive forms, or to AML. This can occur over months or even over years.

People who have anemia associated with a diagnosis of MDS often have less energy. It’s typical for a person with anemia to be unable to exercise to their fullest or even climb stairs or go on a short walk without having to stop to catch their breath.

To set expectations with friends and family members, a person with anemia associated with MDS may want to remind people that their gas tank is simply not full, and that they are going to need more breaks from their usual activities because of their anemia.

As MDS progresses, or with more aggressive forms of MDS, people often require frequent transfusions of blood or platelets. They also have to attend several doctors’ appointments regularly, sometimes even as frequently as every week or two.

When receiving blood or platelet transfusions or treatment, medications are often given before the transfusion or the treatment to help prevent reactions to the infusion or to prevent nausea from the treatment. These medications can make a person sleepy, and it is always a good idea for another individual to accompany someone with MDS to these appointments to provide a safe ride home.

It isn’t easy to receive a myelodysplastic syndromes (MDS) diagnosis while also figuring out how to discuss it with your family. But learning the facts about these cancers and their presentations can help you confidently navigate loved ones’ questions.

It’s OK to set boundaries. A cancer diagnosis can be deeply personal, and you never have to share more details than you’re comfortable with.

The nonprofit advocacy organization, MDS Foundation, also has a wealth of resources to help you on your journey.

Mikkael A. Sekeres, MD, MS, is an expert from the American Society of Hematology and the Chief of the Division of Hematology and Professor of Medicine at the Sylvester Comprehensive Cancer Center, University of Miami in Florida. He is the author of the books “When Blood Breaks Down: Life Lessons from Leukemia” and “Drugs and the FDA: Safety, Efficacy, and the Public’s Trust.”