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If you’ve just found out you have myelodysplastic syndrome (MDS), you’ll surely have lots of questions. You may never have heard of MDS before or known anyone who had it. You may feel a wide range of powerful emotions. You’ll have a lot to learn and decisions to make about what to do next, both about the MDS and for yourself. Here’s what to expect after your diagnosis.

What Is My Outlook With MDS?

Most cancers are given a stage based on how far the cancer has spread from the place where it started. But MDS is different. It’s a disease of your bone marrow. Your doctor will look at other things to see how serious your MDS is and what you should do next. These things include how many of various types of blood cells or chromosomal abnormalities they see. 

Based on these, you’ll get a score. Your MDS score will tell you and your doctor your risk, or how likely the cancer is to grow and how well it may respond to treatment. This can range from very low to very high or somewhere in between. Ask your doctor how high your risk is, how they know, and what it means about what happens next. 

More questions to ask:

  • Do I need more testing?
  • What type of MDS do I have?
  • How serious is it?
  • Is there anything I can do to improve my outlook?
  • What happens next?

Do I Need Treatment Now?

This is a good question to ask. That’s because your treatment will depend on many things, including:

  • Your MDS type
  • Your MDS score or risk
  • Your age
  • Your health
  • Other factors

You may or may not need to start treatment right away. Your doctor may suggest watching the MDS closely without treating it. 

What Will My Treatment Involve?

If it’s decided you do need treatment, the next question is what sort. The main treatments for MDS include:

  • Chemotherapy
  • Immune treatments
  • Growth factors
  • Supportive therapy
  • Stem cell transplant

Ask your doctor: 

  • What are my treatment options?
  • If I have choices, what are the pros and cons of each?
  • What are the side effects?
  • How long will treatment last?
  • What is the goal of treatment?
  • What if it doesn’t work?

What Happens After Treatment Starts?

Ask your doctor what to expect from treatment. You may have a series of treatments with breaks along the way. If issues come up, you may have to stop for a time. 

You’ll see your doctor along the way to help you understand what you can expect. Make sure your doctor knows about any symptoms or side effects you’re having. 

Ask them what tests you’ll need to find out the status of your MDS and what it means for you. While you can’t control the MDS, there’s still a lot you can do to help you manage the symptoms and feel better about what’s next.

How Can I Manage My Emotions Better?

People live with their MDS in many ways. What works for you may be different from what’s best for someone else. It often helps to talk to other people who’ve been there. Ask if there’s a support group in your area or online. To get a sense of control over your treatment and life with MDS, you can try to: 

  • Learn all you can about MDS and what you can expect.
  • Tell people you trust how you’re feeling.
  • Start a journal or express your feelings through music or art.
  • Do things you enjoy, like spending time with friends, watching a movie, taking a walk, or reading a book.
  • Stay active, or get active if you aren’t already (and your doctor gives the OK), with walking, yoga, swimming, or another activity that appeals to you.
  • Stay focused on things that you can control and do your best to let go of the rest.
  • Let your doctors know how you’re doing, not just in terms of the MDS but also in terms of your mental health.

What About the Fatigue?

Most people with MDS will have ongoing fatigue. Make sure your doctor knows how you’re feeling so they can offer ideas to help. Try these tips:

  • Track your fatigue and plan your day around it as best you can.
  • Set priorities so you can take care of the things that are most important to you.
  • Let other people take care of less important details.
  • Get good rest at night and talk to your doctor if you’re having trouble sleeping.
  • Get moderate exercise if your doctor says it’s OK and you feel up to it – it can boost energy and lift your mood. 
  • Make sure you’re managing any other health conditions as best you can.
  • Eat a balanced diet with regular small meals. 
  • Stay away from alcohol.

What Else Can I Do to Manage My MDS?

You may have lots of concerns about how MDS will affect your life, your work, your family, and more. Don’t hesitate to ask your care team where to go for the help and resources you’ll need. Look for online resources to help you find support for your concerns. For help and advice, you can:

  • Join a support group.
  • Get one-on-one counseling from a trained professional, such as a therapist or counselor.
  • Look into assistance programs that may help with any financial concerns. 
  • Learn your rights on the job, get to know your company’s policies, and think through what kinds of support or time off you may need. 

How Do I Talk to My Kids About My MDS?

You may be tempted to protect your kids and keep your diagnosis a secret from them. But they’re more likely to be anxious if they don’t know what’s going on. To help them deal with the situation too:

  • Explain to them in a way they can understand what cancer is and what kind you have. 
  • Let them know how your illness and treatment will affect them day to day. 
  • Let them see how you manage your condition, including the emotional ups and downs. 
  • Answer their questions as accurately and honestly as you can. 

Your child may show signs of struggling with the situation. Depending on their age, these could include: 

  • Acting out 
  • Going back to younger behaviors, such as thumb sucking or separation anxiety 
  • Poor performance in school 

If you see signs like these and they go on for a while, you may need to seek professional help. Your child’s pediatrician or school counselor may have tips for how to help them adjust, or be able to point you to a social worker or family counselor who can help.

Show Sources

(Photo Credit: iStock/Getty Images)

SOURCES:

American Cancer Society: “After Diagnosis: A guide for patients and families,” “Myelodysplastic Syndrome Prognostic Scores,” “If you Have Myelodysplastic Syndrome,” “Psychosocial Support Options for People with Cancer.”

The Aplastic Anemia and MDS International Foundation: “Fatigue.”

The MDS Foundation: “Guide to Assistance Programs in the United States.”

Leukemia & Lymphoma Society: “Tips for Talking with Your Employer and Your Workplace Rights.”

MD Anderson Cancer Center: “How to talk to your kids about cancer.”