What to Expect After a Leukemia Diagnosis

Medically Reviewed By William C. Lloyd III, MD, FACS
Female doctor examining her patient
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After getting a diagnosis of leukemia, you may very well feel a range of emotions and have a lot of questions. You will probably need help and support, not only from your doctor, but from loved ones as well. However, creating a treatment plan, putting together a support team, and learning more about leukemia will help you feel more confident. Here are some things to think about and steps you may want to take.

Everyone reacts to learning they have cancer. You may feel afraid, confused, sad or even completely shocked. Your feelings may change from day to day. It's normal to have a lot of questions. You may want to know details about your type of leukemia, your prognosis, and possible treatments. Answers are available from a lot of places. Before you head to the internet, talk with your doctor and care team about the best sources of information to help you learn about the specific type of your leukemia and treatment side effects. Find out about support groups in your area for yourself and your family.

Your Treatment Plan 

You and your care team will develop a detailed plan for treating your leukemia. It may include chemotherapy, radiation, immunotherapy, or other types of treatments. Everyone's treatment plan is different. 

Discuss the pros and cons of each treatment with your doctor. Also, ask your doctor about the goals of your treatment. Will it cure your cancer or simply stop it from progressing so quickly? How long will your treatment last? You may also want to ask about clinical trials. Participating in a clinical trial might offer you the best type of treatment for the type and stage of your leukemia. 

Your Overall Health and Well-Being

Depending on the type and stage of leukemia, you may already be experiencing symptoms, such as fatigue. After a leukemia diagnosis, your doctor and support team should prepare you for side effects from your treatment. Ask your doctor what to expect with the specific treatment you will be receiving. Possibilities include nausea, hair loss, skin rashes, digestive problems, and fatigue. You may be more at risk for infection, too. You will need to take extra care to avoid germs, such as hand washing and people who are sick with a cold, flu, or other infection. 

You may want to know what you can do to stay physically and mentally well during your treatment. If you are not tolerating side effects well, ask your doctor and care team what you can do to ease your discomfort. Make getting rest a priority. And, don't push yourself too hard. Eat a nutritious diet and exercise, if your doctor says it's OK. 

Organizing It All 

Your life just got more complicated. A leukemia diagnosis means you'll have to juggle doctor's appointments, treatment visits, time off work (or school), insurance, and medical bills. And you probably won't be feeling that well. Start with these steps to get things in place:

  • Talk with your insurance company about what to expect in terms of coverage and treatment costs.

  • You'll need help managing everything, so consider asking a loved one to help you with the paperwork and bills.

  • Get help taking care of household and family duties. A close friend may be willing to manage these duties among a group of other friends and family members.

  • Find someone who can go to doctor's appointments with you. That way, you can learn about your new diagnosis and treatment options together.

  • Talk with your boss about how to handle missed work. You may be able to work from a home office on days when you aren’t feeling your best.

  • Look for a smartphone app that can help you manage everything—like the Cancer.Net mobile app from the American Society of Clinical Oncology.

Everyone's experience after a leukemia diagnosis is different. Still, prepare as much as you can to make your journey as smooth as possible.

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  1. When the Doctor Says "Cancer." American Society of Clinical Oncology. http://www.cancer.net/navigating-cancer-care/diagnosing-cancer/when-doctor-says-cancer
  2. After Diagnosis: A Guide for Patients and Families. American Cancer Society. http://www.cancer.org/acs/groups/cid/documents/webcontent/002813-pdf.pdf
  3. Cancer Diagnosis? Advice for Dealing with What Comes Next. Mayo Clinic. http://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-diagnosis/art-20046527?pg=1 
  4. Side Effects. Leukemia and Lymphoma Society. https://www.lls.org/leukemia/acute-myeloid-leukemia/treatment/side-effects 
  5. Finances and Insurance Coverage. Leukemia and Lymphoma Society. https://www.lls.org/managing-your-cancer/finances-and-insurance-coverage
Medical Reviewer: William C. Lloyd III, MD, FACS
Last Review Date: 2020 Aug 6
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