Myelodysplastic Syndromes - MDS

ON THIS PAGE: You will find out more about the factors that increase the chance of developing myelodysplastic syndromes (MDS). Use the menu to see other pages.

What are the risk factors for MDS?

A risk factor is anything that increases a person’s chance of developing a disease. Although risk factors often influence the development of MDS, most do not directly cause MDS. Some people with several risk factors never develop MDS, while others with no known risk factors do. Knowing your risk factors and talking about them with your doctor may help you make more informed lifestyle and health care choices.

The following factors may raise a person’s risk of developing MDS:

Age. MDS occurs most often in people older than 60 and is less common in younger people. MDS is rare in children.

Sex. Men develop MDS more often than women.

Exposure to environmental/occupational hazards. Long-term exposure to benzene, tobacco smoke, insecticides, and other toxins may increase the risk of developing MDS.

Previous chemotherapy or radiation treatment. Approximately 20% of people who develop MDS previously received chemotherapy or radiation therapy. This type of MDS is called secondary MDS (see Subtypes and Classification ).

Genetics. Most often, MDS is not inherited, or passed from parent to child within a family. However, some genetic changes may increase a person’s risk of developing MDS or other similar disorders, such as AML. This increased risk is called a germline predisposition.

Many of these genetic changes are linked with the inherited genetic conditions listed below, with the specific genes involved, when known. Research continues to identify other likely genetic factors.

• Myeloid neoplasms with germline predisposition without a pre-existing platelet disorder or organ dysfunction

  • Germline CEBPA Pathogenic (P)/Likely Pathogenic (LP) variant (CEBPA-associated familial AML)

  • Germline DDX41 P/LP variant

  • Germline TP53 P/LP variant ( Li-Fraumeni syndrome )

• Myeloid neoplasms with germline predisposition and pre-existing platelet disorder

  • Germline RUNX1 P/LP variant (familial platelet disorder with associated myeloid malignancy, FPD-MM)

  • Germline ANKRD26 P/LP variant (Thrombocytopenia 2)

  • Germline ETV6 P/LP variant (Thrombocytopenia 5)

• Myeloid neoplasms with germline predisposition and potential organ dysfunction

  • Germline GATA2 P/LP variant (GATA2-deficiency)

  • Bone marrow failure syndromes

    • Severe congenital neutropenia (SCN)

    • Shwachman-Diamond syndrome (SDS)

    • Fanconi anemia (FA)

  • Telomere biology disorders

  • RASopathies ( Neurofibromatosis Type 1 , CBL syndrome, Noonan syndrome, or Noonan syndrome-like disorders)

  • Down syndrome

  • Germline SAMD9 P/LP variant (MIRAGE Syndrome)

  • Germline SAMD9 P/LP variant (SAMDL-related Ataxia Pancytopenia Syndrome)

  • Biallelic germline BLM P/LP variant (Bloom syndrome)

You should let your doctor know if other people in your family have been diagnosed with any type of cancer, especially myeloid diseases.

The next section in this guide is Symptoms and Signs . It explains what changes or medical problems MDS can cause. Use the menu to choose a different section to read in this guide.

ON THIS PAGE: You will find a list of common tests, procedures, and scans that doctors use to find the cause of a medical problem. Use the menu to see other pages.

Doctors use many tests to find, or diagnose, cancer. They also do tests to learn the extent of the disease. Doctors may also do tests to learn which treatments could work best.

For most types of cancer, a biopsy is the only sure way for the doctor to know if an area of the body has cancer. In a biopsy, the doctor takes a small sample of tissue for testing in a laboratory. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis.

How are myelodysplastic syndromes (MDS) diagnosed?

There are different tests used for diagnosing MDS. Not all tests listed below will be used for every person. Your doctor may consider these factors when choosing a diagnostic test:

• The type of cancer suspected

• Your signs and symptoms

• Your age and general health

• The results of earlier medical tests

In addition to a physical examination, the following tests may be used to diagnose MDS:

• Blood tests. A complete blood count , or CBC, measures the numbers of red blood cells, white blood cells, and platelets. Blood tests may also be done to rule out other conditions that can cause symptoms similar to MDS, such as low levels of vitamin B120, iron folate, copper, and thyroid problems.

• Peripheral (circulating) blood smears. A drop of blood is placed on a glass microscope slide, smeared into a thin film, and placed under a microscope for examination. The percentages of the different types of cells are counted. Also, the appearance of cells under the microscope, called cell morphology, is looked at to find out if or how the cells are different from healthy cells.

• Bone marrow aspiration and biopsy. These 2 procedures are done to examine the bone marrow. Bone marrow has both a solid and liquid part. A bone marrow aspiration removes a sample of the fluid with a needle. A bone marrow biopsy is the removal of a small amount of solid tissue using a hollow needle. These procedures are often done at the same time and may be called a bone marrow examination.

  A pathologist then analyzes the sample(s) to determine the percentage of red blood cells, white blood cells, platelets, and blasts. A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease. A common site for the bone marrow aspiration and biopsy is the pelvic bone, which is located in the lower back by the hip. Doctors generally give a type of medication called anesthesia beforehand to numb the area. Anesthesia is medication that blocks the awareness of pain. Stronger types of anesthesia can also be used to lessen the pain. The appearance of the bone marrow tissue, along with blood cell counts and chromosomal analysis (see below), is needed to confirm a diagnosis of MDS.

• Molecular testing. Your doctor may recommend running laboratory tests on a bone marrow sample to identify mutations in specific genes, abnormal proteins, and other factors unique to MDS. Results of these tests can help better classify the MDS, understand if the MDS is familial (also known as germline predisposition), determine your treatment options , and/or find out how treatment is working.

• Cytogenetic (chromosomal) analysis. Looking at the chromosomes of the cells in the blood and bone marrow shows specific abnormalities that help doctors tell the difference between MDS and other blood disorders. About 50% of people with MDS have 1 or more chromosomal abnormalities in their cancer cells, regardless of the subtype . Primary MDS often has a single chromosomal abnormality. Secondary MDS that occurs after prior exposure to chemotherapy or radiation often has many or complex chromosomal changes. The most common abnormalities affect chromosomes 5, 7, 8, 11, 12, 17, and 20.

• Immunophenotyping. Immunophenotyping is the examination of antigens, a specific type of protein, on the surface of the MDS cells. Immunophenotyping can help identify the type of MDS. This test is most often done with a flow cytometer.

• Genetic profiling using Next Generation Sequencing (NGS) of DNA. Most MDS cells have mutations in one or more genes that control the growth of cancer cells as well as resistance to treatment. The abnormal gene products that come from these mutations can sometimes be targeted with very specific drugs.

After diagnostic tests are done, your doctor will review all of the results with you. If the diagnosis is MDS, these results also help the doctor describe the disease and determine the subtype and classification.

The next section in this guide is Subtypes and Classification . It explains the system doctors use to describe MDS. Use the menu to choose a different section to read in this guide.

ON THIS PAGE: You will learn about the different types of treatments doctors use for people with myelodysplastic syndrome (MDS). Use the menu to see other pages.

This section explains the types of treatments, also known as therapies, that are the standard of care for MDS. “Standard of care” means the best treatments known. Information in this section is based on medical standards of care for MDS in the United States. Treatment options can vary from one place to another.

When making treatment plan decisions, you are encouraged to discuss with your doctor whether clinical trials offer additional options to consider. A clinical trial is a research study that tests a new approach to treatment. Doctors learn through clinical trials whether a new treatment is safe, effective, and possibly better than the standard treatment. Clinical trials can test a new drug, a new combination of standard treatments, or new doses of standard drugs or other treatments. Clinical trials are an option for all stages of cancer. Your doctor can help you consider all your treatment options. To learn more about clinical trials, see the About Clinical Trials and Latest Research sections.

How MDS is treated

For MDS, different types of doctors who specialize in cancer, called oncologists, and blood disorders, called hematologists, often work together to create a patient’s overall treatment plan that combines different types of treatments. This is called a multidisciplinary team . Your health care team may include other health care professionals, such as physician assistants, nurse practitioners, nurses, social workers, pharmacists, counselors, dietitians, physical therapists, occupational therapists, and others. Learn more about the clinicians who provide cancer care .

Treatment options and recommendations depend on several factors, including the subtype and risk score of MDS , the risk of developing AML , possible side effects, and your preferences, age, and overall health. The goal of treatment may differ based on these factors. For lower-risk disease, the goal to bring blood counts back to healthy levels. For higher-risk disease, the goals of treatment are to prevent or slow the disease from developing into AML and control the disease in the bone marrow. As explained in the Subtypes and Classification section, a patient’s risk score and MDS subtype help doctors determine when treatment should begin. It is important to note that the treatments may not be equally effective for every patient.

Take time to learn about all of your treatment options and be sure to ask questions about things that are unclear. Talk with your doctor about the goals of each treatment and what you can expect while receiving the treatment. These types of conversations are called "shared decision-making." Shared decision-making is when you and your doctors work together to choose treatments that fit the goals of your care. Shared decision-making is important for MDS because there are different treatment options. Learn more about making treatment decisions .

READ MORE BELOW

• Growth factors

• Transfusions

• Chemotherapy

• Immunotherapy

• Bone marrow transplant/stem cell transplant

• Physical, emotional, social, and financial effects of MDS

• If MDS worsens

• Remission and the chance of recurrence

• If treatment does not work

Some people with MDS who do not have any symptoms may only need close monitoring, including measuring blood counts regularly.

Growth factors

Some people with low-risk MDS are treated with hematopoietic growth factors. Many of the symptoms of MDS are caused by a lack of blood cells. Growth factors are a natural substance made by the body that help the bone marrow make red blood cells, white blood cells, and platelets. Growth factors can be made in a pharmaceutical lab. They may be injected beneath the skin or given as oral medications. Examples of growth factors include:

Red blood cell growth factors

• Epoetin (available as a generic drug)

• Darbepoetin (Aranesp)

• Luspatercept (Reblozyl)

White blood cell growth factors, also known as granulocyte colony stimulating factors or G-CSF

• Filgrastim (available as a generic drug)

• Peg-filgrastim (Neulasta)

Platelet growth factors, also known as TPO-mimetics

• Eltrombopag (Promacta)

• Romiplostim (Nplate)

Return to top

Blood transfusions

Red blood cell transfusions and platelet transfusions can help relieve the symptoms caused by anemia and thrombocytopenia. Almost everyone with MDS has anemia and common symptoms include fatigue, shortness of breath, and headache. Thrombocytopenia , which is when there are too few platelets in the blood, is also common for people with MDS. Thrombocytopenia can increase a person's risk of bleeding. Most people with MDS will need blood transfusions at some point.

During a blood transfusion, donated blood or blood components are given through a tube that is inserted directly into a vein with a needle. Blood or blood components flow through the tube and into the vein. Blood transfusions are done in an outpatient setting, meaning they are done at the doctor's office or clinic. They may take from 1 to 3 hours to complete.

Return to top

Therapies using medication

The treatment plan for MDS may include medications to destroy unhealthy cells. Medication may be given through the bloodstream to reach those cells throughout the body. When a drug is given this way, it is called systemic therapy.

This treatment is generally prescribed by a medical oncologist, a doctor who specializes in treating cancer with medication, or a hematologist, a doctor who specializes in treating blood disorders.

Medications are often given through an intravenous (IV) tube placed into a vein using a needle or as a pill or capsule that is swallowed (orally). If you are given oral medications to take at home, be sure to ask your health care team about how to safely store and handle them.

The types of medications used for MDS include:

• Chemotherapy

• Immunotherapy

Each of these types of therapies is discussed below in more detail. A person may receive a single type of medication at a time, or a combination of medications given at the same time. Medication can also be given as part of a treatment plan that includes other types of therapies.

The medications used to treat MDS are continually being evaluated. Talking with your doctor is often the best way to learn about the medications prescribed for you, their purpose, and their potential side effects or interactions with other medications.

It is also important to let your doctor know if you are taking any other prescription or over-the-counter medications or supplements. Herbs, supplements, and other drugs can interact with cancer medications, causing unwanted side effects or reduced effectiveness. Unless a vitamin deficiency exists, there is very little evidence that supplemental vitamins are helpful in MDS. Learn more about your prescriptions by using searchable drug databases .

Return to top

Chemotherapy

Chemotherapy is the use of drugs to destroy unhealthy cells, usually by ending those cells’ ability to grow and divide.

A chemotherapy regimen, or schedule, usually consists of a specific number of cycles given over a set period of time. A patient may receive 1 drug at a time or a combination of different drugs given at the same time. Which drug is given often based on information about the MDS subtype and classification .

Common drugs for MDS include:

Hypomethylating drugs

• Azacitidine (Vidaza)

• Decitabine (Dacogen)

• Decitabine and cedazuridine (Inqovi)

Both azacitidine and decitabine are approved by the U.S. Food and Drug Administration (FDA) to treat all types of MDS. However, these drugs are used most often for patients with higher IPSS-R scores. Both can be given in the doctor’s office or clinic. Cedazuridine is an oral medication. Patients often need more than 1 round of treatment, given monthly, before it starts improving their health.

Conventional chemotherapy drugs for more intensive treatment

• Cytarabine (Cytosar-U)

• Daunorubicin (Cerubidine)

• Idarubicin (Idamycin)

People with high-risk subtypes of MDS who have an increased risk of developing AML may benefit from conventional chemotherapy. Overall, about 30% to 40% of patients may benefit from chemotherapy for MDS. Your doctor will consider factors such as your age and health before making any recommendations for conventional chemotherapy.

Immunomodulatory drugs (IMiD)

• Lenalidomide (Revlimid)

Lenalidomide is taken by mouth, or orally. It is very effective when given to patients with low-risk MDS and chromosome 5q abnormalities. Therefore, it is very important for doctors to find out whether a patient has this chromosomal change through testing.

In general, the side effects of drug therapy depend on the individual and the dose used, but they can include fatigue, risk of infection, nausea and vomiting, hair loss, loss of appetite, and diarrhea. These side effects usually go away after treatment is finished.

Learn more about the basics of chemotherapy .

Return to top

Immunotherapy

Immunotherapy uses the body's natural defenses to fight cancer by improving your immune system's ability to attack cancer cells. Although this is rarely used for MDS, it may be an option for some patients. A type of immunotherapy for MDS is antithymocyte globulin (ATGAM, Thymoglobulin).

Different types of immunotherapy can cause different side effects. Common side effects include skin reactions, flu-like symptoms, diarrhea, and weight changes. Talk with your doctor about possible side effects for the immunotherapy recommended for you. Learn more about the basics of immunotherapy .

Return to top

Bone marrow transplantation/stem cell transplantation

High-dose chemotherapy with bone marrow/stem cell transplantation is the only current treatment that can produce a long-term remission. However, transplantation is a higher-risk treatment and may not be recommended for patients who are older and/or have other medical problems. However, for patients ages 50 to 75, an ALLO transplant may be an option after reduced intensity treatment. Before recommending a transplant, your doctor will talk with you about the risks of this treatment. They will also consider several other factors, such as the subtype of MDS, results of any previous treatment, and your general health.

A bone marrow transplant is a medical procedure in which bone marrow that contains cancer is destroyed and replaced by highly specialized normal, healthy cells. These cells, called hematopoietic stem cells, develop into healthy bone marrow. Hematopoietic stem cells are blood-forming cells found both in the bloodstream and in the bone marrow. This procedure is also called a stem cell transplant or hematopoietic stem cell transplant.

There are 2 types of stem cell transplantation depending on the source of the replacement blood stem cells: allogeneic (ALLO) and autologous (AUTO). ALLO uses donated stem cells from a healthy donor, while AUTO uses the patient’s own stem cells. In both types, the goal is to destroy all of the unhealthy cells in the marrow, blood, and other parts of the body using high doses of chemotherapy and/or radiation therapy and then allow replacement blood stem cells to create healthy bone marrow. An ALLO transplant is usually the type recommended for people with MDS.

Side effects depend on the type of transplant, your general health, and other factors. Learn more about the basics of stem cell and bone marrow transplantation .

Return to top

Physical, emotional, social, and financial effects of MDS

MDS and its treatment often cause side effects, as well as emotional, social, and financial effects. Managing all of these effects is called palliative and supportive care. It is an important part of your care that is included along with treatments intended to slow, stop, or eliminate MDS.

Palliative and supportive care focuses on improving how you feel during treatment by managing symptoms and supporting patients and their families with other, non-medical needs. Any person, regardless of age or subtype and classification of MDS, may receive this type of care. And it often works best when it is started right after a diagnosis. People who receive palliative and supportive care along with treatment for MDS often have less severe symptoms, better quality of life, and report that they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional support, and other therapies. You may also receive palliative treatments such as chemotherapy. Talk with your doctor about the goals of each treatment in the treatment plan.

Some people with MDS who do not have any symptoms may only need close monitoring, including measuring blood counts, to watch for any symptoms. People with low-risk MDS, meaning those with RA and RARS subtypes, usually receive supportive care to control symptoms and improve quality of life, including growth factors and blood transfusions (see above). Antibiotics may also be given to fight infection , a common side effect of low white blood cell counts.

Before treatment begins, talk with your health care team about the goals of each treatment in the recommended treatment plan. You should also talk about the possible side effects of the specific treatment plan and palliative and supportive care options. Many patients also benefit from talking with a social worker and participating in support groups. Ask your doctor about these resources, too.

Care for MDS is often expensive, and navigating health insurance can be difficult. Ask your doctor or another member of your health care team about talking with a financial navigator or counselor who may be able to help with your financial concerns .

During treatment, your health care team may ask you to answer questions about your symptoms and side effects and to describe each problem. Be sure to tell the health care team if you are experiencing a problem. This helps the health care team treat any symptoms and side effects as quickly as possible. It can also help prevent more serious problems in the future.

Learn more about the importance of tracking side effects in another part of this guide. Learn more about palliative and supportive care in a separate section of this website.

Return to top

If MDS worsens

If MDS continues to worsen despite treatment, it is a good idea to talk with doctors who have experience in treating the disease. Doctors can have different opinions about the best standard treatment plan. Clinical trials are also a treatment option. Learn more about getting a second opinion before starting treatment, so you are comfortable with your chosen treatment plan.

Your treatment plan may include a combination of the treatments discussed above. Palliative and supportive care will also be important to help relieve symptoms and side effects.

For most people, worsening MDS is very stressful and difficult. You and your family are encouraged to talk about how you feel with doctors, nurses, social workers, or other members of the health care team. It may also be helpful to talk with other patients, such as through a support group or other peer support program.

Return to top

Remission and the chance of recurrence

A remission is when MDS cannot be detected in the body and there are no symptoms. This may also be called having “no evidence of disease” or NED.

A remission may be temporary or permanent. This uncertainty causes many people to worry that the disease will come back. While many remissions are long-lasting, it is important to talk with your doctor about the possibility of the disease returning. Understanding your risk of recurrence and the treatment options may help you feel more prepared if the disease does return. Learn more about coping with the fear of recurrence .

If MDS does return after the original treatment, it is called recurrent MDS. If this happens, a new cycle of testing will begin to learn as much as possible about the recurrence. After this testing is done, you and your doctor will talk about the treatment options. Sometimes, new genetic mutations have appeared that can be targeted by new medications. Often the treatment plan will include the treatments described above, such as chemotherapy and bone marrow transplantation, but they may be used in a different combination or given at a different pace. Your doctor may suggest clinical trials that are studying new ways to treat this type of recurrent disease. Whichever treatment plan you choose, palliative and supportive care will be important for relieving symptoms and side effects.

People with recurrent MDS often experience emotions such as disbelief or fear. You are encouraged to talk with the health care team about these feelings and ask about support services to help you cope. Learn more about dealing with a recurrence .

Return to top

If treatment does not work

Recovery from MDS is not always possible. If MDS cannot be cured or controlled, the disease may be called advanced or terminal.

This diagnosis is stressful, and for some people, advanced MDS is difficult to discuss. However, it is important to have open and honest conversations with your health care team to express your feelings, preferences, and concerns. The health care team is there to help, and many team members have special skills, experience, and knowledge to support patients and their families. Making sure a person is physically comfortable and free from pain is extremely important.

Planning for your future care and putting your wishes in writing is important, especially at this stage of disease. Then, your health care team and loved ones will know what you want, even if you are unable to make these decisions. Learn more about putting your health care wishes in writing .

People who have advanced disease and who are expected to live less than 6 months may want to consider hospice care. Hospice care is designed to provide the best possible quality of life for people who are near the end of life. You and your family are encouraged to talk with your doctor or a member of your palliative care team about hospice care options, which include hospice care at home, a special hospice center, or other health care locations. Nursing care and special equipment can make staying at home a workable option for many families. Learn more about advanced care planning .

After the death of a loved one, many people need support to help them cope with the loss. Learn more about grief and loss .

Return to top

The next section in this guide is About Clinical Trials . It offers more information about research studies that are focused on finding better ways to care for people with MDS. Use the menu to choose a different section to read in this guide.

ON THIS PAGE: You will read about the scientific research being done now to learn more about myelodysplastic syndromes (MDS) and how to treat them. Use the menu to see other pages.

Doctors are working to learn more about MDS, ways to prevent it, how to best treat it, and how to provide the best care to people diagnosed with this disease. The following areas of research may include new options for patients through clinical trials. Always talk with your doctor about the best diagnostic and treatment options for you.

• New drugs and drug combinations. Researchers are looking at treatments with the following:

  • Azacitidine given by mouth and in combination with other drugs

  • Decitabine in combination with other drugs

  • Lenalidomide in patients who do not have abnormalities of chromosome 5

  • Drugs called histone deacetylase inhibitors

  • Drugs called polo-kinase inhibitors

  • Different approaches to bone marrow/stem cell transplantation

  • Antibodies that activate the immune system, such as antiCD47

    Some of these medications, such as azacitidine, decitabine, and lenalidomide, have already been approved by the FDA for the treatment of MDS and are now being evaluated in different doses and schedules and in combination with other drugs.

• Palliative and supportive care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current MDS treatments to improve patients’ comfort and quality of life. For instance, read about a 2023 study about treating anemia in people with lower-risk MDS.

Looking for More About the Latest Research?

If you would like more information about the latest areas of research in MDS, explore these related items that takes you outside of this guide:

• To find clinical trials specific to your diagnosis, talk with your doctor or search online clinical trial databases . Also, the MDS Foundation designates certain treatment centers as MDS Centers of Excellence , which offer clinical trials and specialized care for people with MDS. (Please note these last two links take you to other, independent websites.)

• Visit the Cancer.Net Blog to review research announced at the 2023 ASCO Annual Meeting about using medication to treat anemia for people with MDS.

• Listen to a podcast with an ASCO expert about recent research in treatment for MDS presented at the ASCO 2020 Virtual Scientific Program.

• Get updates from Cancer.Net delivered right to your inbox. Subscribe to the Inside Cancer.Net email newsletter.

• Visit the website of Conquer Cancer, the ASCO Foundation to find out how to help support cancer research. Please note this link takes you to a different ASCO website.

The next section in this guide is Coping with Treatment . It offers some guidance in how to cope with the physical, emotional, and social changes that MDS and its treatment can bring. Or, use the menu to choose another section to continue reading this guide.

ON THIS PAGE: You will read about your medical care after treatment is completed and why this follow-up care is important. Use the menu to see other pages.

Care for people diagnosed with myelodysplastic syndrome (MDS) does not end when active treatment has finished. Your health care team will continue to check to make sure the disease has not returned, manage any side effects, and monitor your overall health. This is called follow-up care.

Your follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your recovery in the months and years ahead. People treated for MDS need ongoing tests for blood counts and bone marrow function to check if or how the disease changes, how well current treatment is working, and whether additional treatment is needed.

Cancer rehabilitation may be recommended, and this could mean any of a wide range of services, such as physical therapy, occupational therapy, career counseling, pain management, nutritional planning, and/or emotional counseling. The goal of rehabilitation is to help people regain control over many aspects of their lives and remain as independent as possible. Learn more about cancer rehabilitation.

Learn more about the importance of follow-up care .

Watching for recurrence

One goal of follow-up care is to check for a recurrence. During follow-up care, a doctor familiar with your medical history can give you personalized information about your risk of recurrence. Your doctor will ask specific questions about your health. Some people may have blood tests or imaging tests done as part of regular follow-up care, but testing recommendations depend on several factors including the subtype and classification of MDS originally diagnosed and the types of treatment given.

The anticipation before having a follow-up test or waiting for test results can add stress to you or a family member. This is sometimes called “scanxiety.” Learn more about how to cope with this type of stress .

Managing long-term and late side effects

Most people expect to experience side effects when receiving treatment. However, it is often surprising to survivors that some side effects may linger beyond the treatment period. These are called long-term side effects. Other side effects called late effects may develop months or even years afterwards. Long-term and late effects can include both physical and emotional changes.

Talk with your doctor about your risk of developing such side effects based on your individual treatment plan and your overall health. If you had a treatment known to cause specific late effects, you may have certain physical examinations, scans, or blood tests to help find and manage them. People who received a stem cell/bone marrow transplant need follow-up care more often. This includes watching for symptoms and signs of graft-versus-host disease , a possible side effect of an ALLO transplantation (See Types of Treatment ).

Keeping personal health records

You and your doctor should work together to develop a personalized follow-up care plan. Be sure to discuss any concerns you have about your future physical or emotional health. The American Society of Clinical Oncology (ASCO) offers forms to help keep track of the cancer treatment you received and develop a survivorship care plan when treatment is completed.

This is also a good time to decide who will lead your follow-up care. Some survivors continue to see the health care team involved in their care for MDS, while others transition back to the care of their family doctor or another health care professional. This decision depends on several factors, including the treatments received, the possible side effects, health insurance rules, and your personal preferences.

If a doctor who was not directly involved in your care for MDS will lead your follow-up care, be sure to share your treatment summary and survivorship care plan forms with him or her and with all future health care providers. Details about your treatment are very valuable to the health care professionals who will care for you throughout your lifetime.

The next section in this guide is Survivorship . It describes how to cope with challenges in everyday life after a diagnosis of MDS. Use the menu to choose a different section to read in this guide.

ON THIS PAGE: You will find some questions to ask your doctor or other members of the health care team, to help you better understand your diagnosis, treatment plan, and overall care. Use the menu to see other pages.

Talking often with the health care team is important to make informed decisions about your health care. These suggested questions are a starting point to help you learn more about your cancer care and treatment. You are also encouraged to ask additional questions that are important to you. You may want to print this list and bring it to your next appointment, or download Cancer.Net’s free mobile app for a digital list and other interactive tools to manage your care. It may also be helpful to ask a family member or friend to come with you to appointments to help take notes.

Questions to ask after getting a diagnosis

• What subtype of myelodysplastic syndrome (MDS) do I have?

• What risk group am I in? What does this mean?

• Can you explain my pathology report (laboratory test results) to me?

• What is my prognosis?

• How likely is it that my MDS will respond to treatment?

• How do I find a doctor who specializes in the treatment of MDS?

Questions to ask about choosing a treatment and managing side effects

• What are my treatment options?

• What types of research are being done for MDS in clinical trials? Do clinical trials offer additional treatment options for me?

• Do I need to start treatment right away?

• Who will be part of my health care team, and what does each member do?

• Who will be leading my overall treatment?

• What treatment plan do you recommend? Why?

• What is the goal of each treatment? Is it to eliminate the MDS, manage my symptoms, or both?

• How often will I need to be treated, and for how long will I receive treatment?

• Will treatment be given in the hospital, or can it be given at the doctor’s office or clinic?

• Do I need someone to come with me when I get my treatment?

• What are the possible side-effects of this treatment, both in the short term and the long term?

• How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?

• Could this treatment affect my sex life? If so, how and for how long?

• Could this treatment affect my ability to become pregnant or have children? If so, should I talk with a fertility specialist before treatment begins?

• If I’m worried about managing the costs of cancer care, who can help me?

• What follow-up tests will I need, and how often will I need them?

• What support services are available to me? To my family?

• Is there concern about this disease occurring in other members of my family?

• Whom should I call with questions or problems?

• What is the likely cost of treatment and supportive care?

• Will the treatment team coordinate care with my primary care provider?

Questions to ask about having chemotherapy, immunotherapy, or a bone marrow/stem cell transplant

• What type of treatment is recommended?

• What is the goal of this treatment?

• How long will it take to give this treatment?

• What side effects can I expect during treatment?

• How long will it be before I can resume full activity?

• What are the possible long-term or late effects of having this treatment?

• What can be done to prevent or relieve the side effects?

Questions to ask about planning follow-up care

• What is the chance that the cancer will come back? Should I watch for specific signs or symptoms?

• What long-term side effects or late effects are possible based on the treatment I received?

• What follow-up tests will I need, and how often will I need them?

• How do I get a treatment summary and survivorship care plan to keep in my personal records?

• When should I return to my primary care doctor for regular medical care?

• Who will be leading my follow-up care?

• What survivorship support services are available to me? To my family?

The next section in this guide is Additional Resources . It offers some more resources on this website beyond this guide that may be helpful to you. Use the menu to choose a different section to read in this guide.