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Newly Diagnosed With Leukemia: Your Guide

Posted on November 19, 2021
Medically reviewed by
Todd Gersten, M.D.
Article written by
Nyaka Mwanza

Any type of cancer diagnosis is a scary and stressful life event. Learning that you have leukemia often comes with high anxiety and other emotions, but knowing what to expect in terms of treatment options, outlook, and how to communicate effectively with your health care team can help make coming to terms with your recent diagnosis easier.

What Is Leukemia?

Leukemia is a type of blood cancer. It begins in the bone marrow with abnormal blood stem cells. Also called hematopoietic cells, these are the starter cells that typically develop into red blood cells, white blood cells, and platelets. Leukemia disrupts normal cell development and results in the overproduction of abnormal white blood cells. These leukemia cells prevent proper functioning of the blood and immune system and cause symptoms of leukemia such as swollen lymph nodes, weight loss, and anemia.

Leukemia is the most common type of cancer in children younger than 15 years and the most common blood cancer in people older than 55 in the United States.

Learn more about leukemia.

Types of Leukemia

There are several different types and subtypes of leukemia. Leukemia is typed based on how fast it progresses and by the type of white blood cells it affects. The four main types of leukemia are:

Learn more about the different types of leukemia.

How Is Leukemia Treated?

Treatment for leukemia depends on several factors, including a person’s type of leukemia as well as their age and overall health.

Your cancer team will develop a treatment plan targeted to your specific needs. Standard treatments for leukemia may include some or all of the following:

  • Chemotherapy
  • Immunotherapy
  • Radiation therapy
  • Stem cell transplant (bone marrow transplant)
  • Targeted therapy

Other potential treatments or combinations of treatments are available and under investigation in clinical trials.

Acute leukemia treatment may sometimes be given in three phases — induction, consolidation, and maintenance — that may last weeks, months, or years. Induction therapy is an intense initial treatment meant to eliminate the leukemia cells in the body. After induction therapy, you may undergo consolidation, a treatment that lasts for several months and aims to kill any remaining leukemia cells that weren’t killed in the first phase, so that you enter remission. Maintenance therapy lasts for a couple of years after remission and is designed to prevent relapse.

Learn more about treatments for leukemia.

Shared Decision-Making Can Help

Shared decision-making is increasingly important in today’s world of cancer treatment.

Shared decision-making describes a way of making decisions about cancer treatment and health that centers the person being treated for leukemia. The process involves two-way communication and sharing of information between you and your doctors. Together, you and your cancer treatment team discuss the available treatment options, the pros and cons of available treatments, and your overarching wishes.

Advocating for yourself is key to the shared decision-making process. Stay engaged and become as informed as possible throughout your cancer treatment. Ask questions at your appointments with your cancer care team. Learn about your condition from your health care team and reputable sources such as the American Cancer Society and the Leukemia & Lymphoma Society. You may also look into seeking a second opinion.

Why Is Shared Decision-Making Important?

When you fully understand your options and feel your concerns and preferences have been taken into account, you are likely to feel more comfortable and satisfied with the treatment plan. Shared decision-making can give you a greater sense of control in a challenging situation and build trust between you and your doctors. Most importantly, shared decision-making can often lead to better treatment outcomes.

Planning and Organization Can Reduce Stress

A leukemia diagnosis can be overwhelming. There is plenty of information to process and many decisions to make. Getting organized and putting a plan down on paper can help make you feel less overwhelmed and make cancer treatment more manageable. In general, organization reduces stress and improves sleep, both of which can boost overall health and well-being.

With your diagnosis, you can expect to encounter financial, legal, and medical paperwork, including:

  • Treatment plans
  • Medical bills
  • Lab results
  • Insurance paperwork (home, health, life, or others)
  • Power of attorney
  • A living will or advance directive
  • A will
  • Other financial paperwork

Find an organizational system that works for you. Whether you use an accordion file for paperwork, a cloud drive with scanned documents, or both, a system can help you sort, group, and find documents easily. Don’t be afraid to ask for help planning and organizing, and make sure your spouse, partner, attorney, or other trusted person is aware of the location of all important information.

End-of-Life Planning

Although many types of leukemia are treatable, there may be times when it is appropriate to consider end-of-life planning. Many variables factor into individual outcomes, and it’s important to examine different possibilities. A good place to begin having conversations about your outlook and planning needs is with your doctor. Even doctors have a difficult time having these conversations with the people they treat, so let your health care team know when you’re ready to discuss terminal cancer plans or end-of-life issues.

Conversations about living wills, funeral plans, end-of-life care, hospice, and other details can be difficult, but it’s good to have plans in place even if you don’t expect to need them. Making as many decisions ahead of time as possible will make treatment and any potential end-of-life care easier for everyone involved, including family and caretakers. It can help to make your loved ones aware of your wishes and plans early on. The National Hospice and Palliative Care Organization is a valuable resource when it comes time to start thinking about end-of-life planning.

Emotional Health Is as Important as Physical Health

Anxiety, stress, hopelessness — all of these are normal emotional responses to being diagnosed with leukemia. Staying on top of mental health issues like depression is important for maintaining your overall well-being, however. You may be more likely to suffer more severe symptoms of both depression and leukemia if depression is left untreated. On the other hand, evidence suggests that addressing depression can improve leukemia prognosis and treatment outcomes.

Strategies for Improving Emotional Health

Acknowledging difficult emotions as real and normal and then addressing and managing those feelings can help improve your mental health and quality of life.

Participate in Therapy

Therapy is a recommended treatment for depression, alongside medication. Some oncology care centers have on-site therapy services for the people they treat. If your care center does not have this option, talk to your team for a referral to appropriate mental health care providers.

Maintain Social Connections

It’s tempting to close yourself off during times of intense stress. Resist that urge. Maintaining social connections is an important part of managing any serious illness. It’s normal to feel like no one will understand, and some of your relationships may change, but most people in your life will want to be there for you in whatever ways they can. Let your friends and family know what’s going on so they can support you.

Journal

Journaling can help you manage the emotional response to a leukemia diagnosis. Putting your feelings into words can help you cope with depression and other difficult thoughts and emotions. Journaling can also help you stay organized, assess your priorities, and keep track of physical and emotional symptoms.

Try journaling for a few minutes each day. Make it easy and enjoyable to do, with pens you love or a cozy nook for your laptop.

Find a Support Group

Having conversations with people who are going through or have gone through the same things you are can ease the burden of a stressful experience. Although support groups are traditionally in-person experiences, online options are more widely available in the era of COVID-19. The Leukemia & Lymphoma Society and the American Cancer Society offer information about support groups for leukemia. You can also find a community of peer-to-peer support on MyLeukemiaTeam.

Talk With Others Who Understand

MyLeukemiaTeam is the social network for people with leukemia. On MyLeukemiaTeam, more than 9,000 members come together to ask questions, give advice, and share their stories with others who understand life with leukemia.

If you have something you want to share, comment below with your thoughts, or start a conversation on MyLeukemiaTeam.

All updates must be accompanied by text or a picture.
Todd Gersten, M.D. is a hematologist-oncologist at the Florida Cancer Specialists & Research Institute in Wellington, Florida. Review provided by VeriMed Healthcare Network. Learn more about him here.
Nyaka Mwanza has worked with large global health nonprofits focused on improving health outcomes for women and children. Learn more about her here.

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