AML, mental health, and the importance of support

Living with acute myeloid leukemia (AML) can bring a range of emotions which may feel overwhelming. AML is a cancer that affects the blood and bone marrow (the spongy tissue inside your bones that makes blood and immune cells). Because AML is a rapidly growing cancer, a person with AML will want to begin treatment as soon as possible.

At the same time, there are many different factors to consider about treatment—the results of genetic testing on the cancer cells, a person’s age and overall health and other existing health conditions, the different possible approaches to treating AML and the potential risks and benefits of each.

And all of this occurs at a time when a person is coping with the symptoms of cancer—like fatigue and low moods—and the overall distress that may often accompany a cancer diagnosis.

Once treatment begins, there are other challenges to cope with. Cancer treatments will cause some degree of side effects, and can affect how a person feels, their appearance, and many aspects of their daily life.

There is no one best treatment for AML, and everyone’s treatment plan will be a bit different. Mental health is a vital part of the treatment plan for AML, and can help you feel less overwhelmed and more in control.

Talk to your healthcare providers

Because AML is a different experience for everyone, your best source of information will always be your healthcare team. Your healthcare providers will be able to give you the most accurate assessment of your diagnosis. Your healthcare providers are also your most valuable resource when it comes to managing how AML affects your mental and emotional health.

Mental health challenges can have a negative impact on treatment, and your healthcare providers need to know what you are thinking and feeling. This information can help your team provide you with better care. Addressing feelings of being overwhelmed, low moods, stress, and anxiety can help you make decisions about your treatment and meet the demands of treatment.

If you aren’t already, consider working with an oncology social worker. Oncology social workers can be a valuable member of a cancer care team, especially with cancers like AML, which often require a person to quickly understand and act on complex information. An oncology social worker can provide counseling, help you identify what you need from a treatment plan, and help with the practical aspects of treating cancer, like reducing the cost of medications and finding transportation to appointments. If you have questions about oncology social workers and if your insurance covers, ask your healthcare team.

Build your support network

Loved ones can also play an important role when it comes to reducing stress, managing feelings of uncertainty, making treatment decisions, or coping with the other ways that AML can be mentally and emotionally challenging. Talk to family and friends about what you are going through and ask for help when you need it. This type of support is often called “social support.”

Also consider joining a support group, either one that meets in person or connects online. Support groups offer the chance to meet other people who know what it’s like to live with leukemia.

Figuring out how to get started

Knowing you need to talk is one thing. Figuring out what to say is another. A good first step is to just spend some time thinking about your experience. Journaling and writing can help you find a way to describe what you are experiencing. Talking to a trusted friend can also help—sometimes a conversation helps you better understand what you are feeling and how to talk about it.

Here are some questions to think about that might help you get started:

• Do you have questions or concerns about your diagnosis and test results?
• Do you have questions or concerns about your treatment plan?
• Are you experiencing discomfort, treatment side effects, or other symptoms?
• How do you feel about your physical appearance?
• What is the most difficult part of living with AML?
• How often do you feel stressed?
• Are you having trouble sleeping? Do you feel rested after sleep?
• Do you feel anxious, angry, or depressed?
• Are you concerned about the cost of treatment?
• Are you concerned about your fertility?
• What does having AML prevent you from doing?
• Has the diagnosis affected your relationships with friends and family?

Remember that there is no wrong way to feel when living with AML, and it’s okay if you cannot put into words exactly how you feel and why you feel that way.