Newly diagnosed with AML: Your next steps
Fact-checked by Acute myeloid leukemia (AML) is a blood cancer marked by the out-of-control growth of immature blood cells known as blast cells, or simply, blasts. These dysfunctional cells can quickly crowd out the healthy blood cells in your bone marrow (the spongy tissue inside your bones that makes new blood cells), causing serious symptoms.
If you or a loved one has been newly diagnosed with AML, you may be feeling shocked, scared, or overwhelmed. Understanding what to expect in the first days after an AML diagnosis can help you prepare for meeting with your doctors and beginning treatments.
Confirming the diagnosis and stabilizing urgent problems
AML can progress very quickly, with symptoms emerging within a few days or weeks after disease development.
AML blast cells divide very rapidly. Having so many dysfunctional cells makes it difficult for your bone marrow to produce healthy blood cells, which can lead to serious medical problems. Having an abnormally high number of rapidly dividing blast cells in your blood can block blood flow, strain your kidneys, and cause other complications. Depending on your blood counts and symptoms, your doctor may recommend immediate treatment to reduce the number of cells in your blood to a safer level.
AML can be caused by many different genetic mutations. Your doctor may recommend blood tests and a bone marrow biopsy (a procedure where a doctor takes a small amount of marrow, usually from your hip) to confirm your diagnosis, find out how many blast cells you have, and test them for mutations. Each genetic mutation causes the cancer cells to behave slightly differently and respond to different treatments, so knowing your AML genetic test results is crucial for your doctor to recommend a targeted treatment strategy.
Meeting the hematology and leukemia care team
If your primary care doctor suspects you have AML, they are likely to refer you to a hematology and leukemia care team for specialized care. Your AML care team will discuss your AML diagnosis, test results, treatment options, AML treatment timeline, and likely prognosis with you. Meeting your care team for the first time may feel overwhelming.
It’s OK to ask questions to make sure you understand everything. You may want to bring a support person, such as a family member or close friend, to your appointments to help you stay organized, take notes, and advocate for you, especially if you don’t feel well. Your care team may also have resources available to help you understand your diagnosis and treatments.
Waiting for test results
It may take a few days to a week or longer before you get your test results back. In the meantime, your care team may recommend immediate treatment to help stabilize you and reduce the number of cells in your blood. Depending on your symptoms and needs, you may need to go to the hospital for treatment shortly after getting your diagnosis.
AML treatments can be very hard on your body, so while you’re preparing for leukemia treatment, your doctor may also run tests to make sure you’ll be able to tolerate them. These might include:
- a physical exam
- blood tests to evaluate your organ function
- chest X-rays
- heart function tests
- testing for infections such as hepatitis and HIV
AML treatments can affect fertility, so your doctor may discuss fertility preservation options if that is a concern for you.
Understanding the goals of AML treatment
Researchers and doctors continue to work on improving AML treatments. However, AML often cannot be fully cured, and many people eventually relapse. Modern AML treatments focus on maintaining remission for as long as possible. If your treatments are no longer keeping you in remission, your doctor may recommend focusing on disease control or palliative care. Each person’s AML treatment journey is unique, so talk to your doctor about your specific prognosis, options, and expectations.
Why treatment may begin before every result is available
AML is an aggressive cancer and can be fatal if it’s not treated right away. Therefore, your doctor may recommend starting AML induction treatment (the powerful medications used to kill blast cells and get AML under control) as soon as your diagnosis is confirmed, even if some of your test results haven’t come back yet.
Supportive care before and during treatment
AML treatments can be hard on your body. Your leukemia care team may want to monitor you closely during treatment for signs of serious complications. They may also recommend supportive care strategies such as:
- taking medications to treat an infection or reduce the likelihood of getting an infection
- getting periodic blood transfusions during treatment
- taking anti-nausea medication or other medications to reduce chemotherapy side effects
In addition, you may be referred to a dietitian for nutritional support and a mental health professional to help maintain your emotional well-being during treatment.
Medicines, supplements, and health information to bring
Your AML care team may have questions about your medical history and current health status. Before your first meeting, consider making a list of any medications you take, including nutritional supplements, and writing down any important medical history to share with your doctors.
Getting a second opinion
Although AML treatment decisions need to be made relatively quickly, getting a second opinion can still be helpful. AML treatment options are rapidly advancing. If you’d like a second opinion, consider talking with a specialist at a major medical center who might be more aware of ongoing clinical trials and specialized options for AML care.
Questions to ask at the first treatment appointment
Questions to ask after AML diagnosis during your first medical appointment might include the following:
- What type of AML do I have, and what risk level is my disease?
- What treatment options do I have?
- What is my overall prognosis?
- What side effects should I expect?
- Will I need to stay in the hospital during my treatments?
- What kind of precautions should I take during treatment?
- What symptoms need emergency medical attention?
What to expect during the first weeks with AML
Many patients find the first few weeks or months after an acute myeloid leukemia diagnosis very frightening and overwhelming. You may not feel well and need to start treatment right away. Some patients also say it takes time to understand all of the new information they receive from oncologists.
If you have questions about what happens after AML diagnosis, consider reaching out to your care team or seeking support through patient support staff or support groups at your medical center, if you have access to them. Patient organizations, such as Blood Cancer United, can also provide resources and support.
Rare Cancer News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
