Making Informed Decisions about Your Healthcare as an AML Survivor
Each year in the United States, over 20,000 people are diagnosed with acute myeloid leukemia, a cancer of the blood and bone marrow. AML is a type of blood cancer that occurs when the bone marrow makes abnormal types of white blood cells, red blood cells, or platelets.
Bone marrow is the spongy tissue inside bones where blood cells are made. It produces blast cells that normally mature into fully functional cells and are released into the bloodstream, along with other mature blood cells. These include white blood cells that fight infection, red blood cells that carry oxygen, and platelets that help with blood clotting. In cases of AML, these blast cells do not mature, and their numbers increase in the marrow and often in the bloodstream. Along with the increase in blast cells, people with AML also have a reduced number of white blood cells, red blood cells, and platelets.
Symptoms of AML typically develop suddenly and without warning. They can include fatigue, fever, loss of appetite, pale skin, recurrent infections, and bleeding problems. There is currently no screening test for early detection of AML.
The best way to make decisions about your healthcare is to learn about your AML diagnosis and get to know the members of your healthcare team.
AML is a cancer most often seen in older people, although about 20 percent of cases occur in people under the age of 45. In the vast majority of cases, susceptibility to AML does not run in families.
Treatment options for AML depend on several factors, including the type of AML you have, the results of lab tests, and your overall health. Once AML is diagnosed, you and your doctor will discuss the approach that is right for you based on your individual circumstances. No matter what treatment approach is chosen, it is essential that people being treated for AML receive attentive supportive care.
As you manage your AML, it’s important to remember that you are a consumer of healthcare. The best way to make decisions about your healthcare is to learn about your AML diagnosis and get to know the members of your healthcare team, including doctors, nurse practitioners, physician assistants, nurses, dietitians, social workers, and patient navigators.
Here are some tips for improving communication with your healthcare team:
- Start a healthcare journal. Having a healthcare journal or notebook will allow you to keep all your health information in one place. You may want to write down the names and contact information of the members of your healthcare team, as well as any questions for your doctor.
- Prepare a list of questions. Before your next medical appointment, write down your questions and concerns. Because your doctor may have limited time, ask your most important questions first and be as specific as possible.
- Bring someone with you to your appointments. Even if you have a journal and a prepared list of questions or concerns, it’s always helpful to have support when you go to your appointments. Your support person may also think of questions to ask your doctor or remember details about your symptoms or treatment that you may have forgotten.
- Write down your doctor’s answers. Taking notes will help you remember your doctor’s responses, advice, and instructions. If you have a mobile device, ask if you can use it to take notes or record the discussion, which will help you review the information later.
Receiving a diagnosis of AML can be very difficult, and adjusting to the necessary changes in your life can be challenging. Make sure you have a solid support system, and don’t be afraid to reach out for help when you need it.
CancerCare offers free face-to-face, telephone, and online support groups led by professional oncology social workers. To learn more, call (800) 813-4673 or visit CancerCare.org.
Reprinted with permission from CancerCare.org.
This article was published in Coping® with Cancer magazine, May/June 2020.