Myelodysplastic Syndromes - MDS: Follow-Up Care

Approved by the Cancer.Net Editorial Board, 12/2017

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 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. 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 “scan-xiety.” 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. ASCO offers forms to help keep track of the treatment you received and develop a survivorship care plan.

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 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.