If you have myelodysplastic syndromes (MDS) and are feeling healthy, your doctor will likely take a “watch and wait” approach. You may feel anxiety and fear toward this approach, but there are ways to cope.

Myelodysplastic syndromes (MDS) are a group of blood cancers.

Normally, blood stem cells grow into mature red blood cells, white blood cells, and platelets. In MDS, blood stem cells stay immature, die sooner, and do not work like healthy red and white blood cells and platelets. They can also crowd out any healthy cells.

There are different types of MDS, depending on what part of the blood is affected. About 30% of people with MDS progress to another type of cancer called acute myeloid leukemia (AML). In some people, MDS progresses quickly, and in others, MDS can be stable for many years.

Treatment for MDS can improve levels of red and white blood cells and platelets, reduce symptoms, and slow the progression. Many people with MDS don’t need to start treatment right away.

Until then, the plan is a “watch and wait” or “active monitoring” approach. This can bring up all sorts of feelings for people with the condition, which can be tough to cope with.

“Watch and wait” is a common way of managing MDS. If you’re feeling well and your blood levels are stable, you won’t start on any treatments right away.

As part of a “watch and wait” approach, you’ll have regular blood work. This allows your healthcare team to monitor your levels of white and red blood cells and platelets. You’ll also follow up regularly with your healthcare team to discuss any changes in your health or symptoms.

If symptoms of MDS begin to interfere with your quality of life or your blood levels become too low, it might be time to start treatment.

If your symptoms and blood levels improve after treatment, you may return to a “watch and wait” approach.

For many types of cancer, starting treatment as soon as possible is best, but MDS is different. Many people with MDS don’t need treatment right away. For some people, MDS can progress very slowly.

If blood cell levels and platelets are stable and you’re feeling healthy, there’s no need to start treatment. A “watch and wait” approach is best. Treatments tend to be less effective over time and can have potential side effects, so it’s best to delay starting treatment until absolutely necessary.

Remember that a “watch and wait” approach is not the same as doing nothing. During this period of time, a healthcare team will still be closely monitoring your health status.

Jennine Stewart is a registered psychotherapist who works in a private practice in Ontario, Canada. Her patients often have a range of concerns, including health-related anxiety.

“Individuals experiencing a chronic health condition can face many challenges,” Stewart explained. “Due to the persistent nature of conditions such as MDS, and the uncertainty of the future, many people experience anxiety, depression, high levels of stress, or grief.”

The unknown of the “watch and wait” approach can be hard to live with and can feel overwhelming. Stewart often sees this.

“People may find it hard to have an identity outside of being someone with cancer,” she said. “Individuals may find it difficult to relax or experience joy.”

If you’re diagnosed with MDS and are told that you won’t be starting treatment right away, you might feel like you’re in limbo. This can leave people feeling unsure and scared.

Some people may feel relief about not needing treatment right away. Others feel deep discomfort about not taking action. There is no right or wrong way to feel. All of your feelings are valid.

“Individuals may feel a lack of control. The ‘doing’ in medical monitoring involves waiting, compared to being in active treatment,” said Stewart.

“I think a ‘watch and wait’ approach can be difficult as it points to uncertainty. It also makes you more future-focused, which robs you of the present moment,” she explained. “It can be hard to experience our lives day-to-day when our minds are waiting for something in the future.”

Fear and anxiety are common in people with MDS. Many people notice more anxiety before doing further bloodwork or attending a follow-up appointment.

“Anxiety thrives off of the unknowns,” Stewart reminded us. Living with cancer and using a “watch and wait” approach is full of unknowns.

Stewart shares the following ideas for how to manage difficult feelings during active monitoring with MDS.

Get support

Make sure you find a space that feels safe for you and all your very valid feelings. “It is important that your feelings are not dismissed,” said Stewart.

“Find support that will allow you to express your feelings of fear and uncertainty. Connecting with others can help you cope and feel less isolated when you’re struggling.”

Build awareness

Spend time tuning into your thoughts and feelings.

“Notice when your anxious thoughts occur,” suggested Stewart. “This can be helpful to allow you more choice in how to respond, rather than just reacting to the feeling. When there is awareness, you have more opportunity for change.”

Try mindfulness

Mindfulness is when you pay attention to the present moment on purpose and without any judgment. The goal is to simply notice your thoughts and feelings without the need to respond.

“When we are consumed by fear and anxiety, our mind is in the future. Building a mindfulness practice and exploring small ways to find joy, peace, or calm in the present moment can be helpful,” suggested Stewart.

Practice self-compassion

Self-compassion is a way to show yourself kindness, especially when you’re not feeling great about your life.

“It is important that we treat ourselves with kindness, especially when we are suffering,” said Stewart. “Practicing self-compassion can help to reduce anxiety.”

She offered the following ideas to get started: “Speak kindly to yourself, offer yourself support, or ask yourself what you need right now.”

It may feel strange at first. Consider how you would support a loved one who is struggling and try to treat yourself that way.

Focus on what is within your control

This can take some practice since the brain is wired to warn us about potential dangers.

“Shifting the focus to what is within our control can be helpful,” explained Stewart. “When we focus on what is uncertain, we feel out of control.”

Some things that you may be able to control include having a sleep routine, setting a realistic daily schedule for yourself, eating on time, staying hydrated, or doing some kind of daily movement if that feels right for you.

Grounding exercises

Stewart often recommends grounding exercises to cope with anxiety. These are strategies to keep yourself present in the moment.

Anxiety can flare when your thoughts are focused on all the unknown what-ifs of the future. Grounding techniques can help your nervous system settle and remind you that, in this moment, you are OK.

Here are some grounding exercises that she encourages people to try:

As a mental health professional, Stewart is a big believer in seeking help when you need it.

“A trained mental health professional can discuss different therapeutic approaches, such as cognitive behavioral therapy (CBT) to help you manage fear and uncertainty,” she said.

“No one is meant to struggle alone,” she noted. “Find your community, where you feel seen, heard, and understood.”

Along with seeking professional help, consider:

  • joining a support group for people with MDS, or a similar condition, either in person or virtually
  • finding a community of like-minded individuals, such as a volunteer or religious organization
  • staying connected with close family members and friends

Healthcare professionals often advise a “watch and wait” approach to manage MDS. You and your healthcare team will actively make decisions about how and when to start treatment. This will be based on your bloodwork and your quality of life.

There’s no benefit to starting treatment earlier than you need to.

Treatments can come with potential risks and side effects. For some people, it feels okay to delay treatment and keep living their lives. For others, it can be a major source of stress.

The unknowns of having MDS and using a “watch and wait” approach can bring up lots of feelings, including fear and anxiety. All of your feelings are valid.

Your healthcare team can support you through this process. Make sure they know how you’re feeling, both physically and emotionally. Don’t be afraid to ask for extra mental health support when you need it.