3 Steps to Take After Getting a Leukemia Diagnosis

It’s natural to feel overwhelmed, so here’s what to do.

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The moments, days, and even weeks following a leukemia diagnosis can be difficult and overwhelming. One of the most common feelings is a sense of powerlessness or lack of control. This is understandable, and it can be painful. One of the best ways to remedy that emotion is to take action and become an active participant in your cancer treatment.

Remember, you are a member of your cancer treatment team. Patients who actively engage in their cancer treatment often report feeling more in control, less anxious, and more optimistic.

“It is very important for the patients to be knowledgeable and be informed about all of the different treatment options that are available for blood cancers today … as well as the benefits and side effects,” says Sangmin Lee, MD, hematologist-oncologist at Weill Cornell Medicine and NewYork-Presbyterian.

1. Organize your medical records.

After you’ve processed your diagnosis—and your emotions related to them—your first step should be to get organized.

“Organizing medical records is very important, especially if you are seeking a second opinion,” says Dr. Lee. Consider creating a binder with your medical history and information from your diagnosis, such as the original pathology report, biopsy reports, and imaging slides.

Going forward, collect records of your treatments as they happen, such as what therapies and the dates they occurred.

2. Find the right doctor. 

Look for experts who have experience in treating leukemia, encourage questions, and treats you with respect as an individual. Look for treatment facilities with knowledgeable support staff, support services, good ratings, financial assistance, and access to specialists.

“Some of the leukemias are not as common, so it’s very important for patients to seek doctors who have experience in treating your type of leukemia,” says Dr. Lee.

If you think it would increase your confidence, don't be afraid to seek a second opinion from another doctor.

3. Be an active member of the care team. 

Your doctor should go through all the treatment options for blood cancer with you, along with the benefits and side effects of each. You and your doctor should choose the right course of treatment as a team. (Here are questions to ask your doctor about your blood cancer treatment options.)

Part of being an active member in your cancer care also means taking care of yourself, and you don't have to do this alone. Your treatment facility may offer valuable services that can improve your quality of life and financial stability during leukemia treatment. Check out dietitians, therapists, support groups, financial assistance programs, and palliative care options early on to prevent stress from building up.

It’s okay to feel stressed even if you’re doing all the above tips and more. Here are self-care tips to cope with blood cancer.