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Specific Age-Related Challenges of an ALL Diagnosis

Meredith Barnhart, LCSW-R

April 4, 2019
Sledgehammer crushing cancer cell

Acute lymphoblastic leukemia (ALL) is a fast-moving malignancy of the blood and bone marrow. Although ALL affects both adults and children, it does so very differently.

Regardless of a patient’s age, a diagnosis of ALL can be sudden and unexpected. Because patients with ALL often have non-specific symptoms, diagnoses can come as a shock to them and their families, and patients often need to begin treatment quickly.

There are currently more than 78,000 people in the U.S. living with ALL, and approximately 6,000 new cases are diagnosed each year. While leukemia is generally a disease that affects older adults more often than children, ALL is an exception. The majority of new ALL cases each year—approximately 4,800—afflict patients ages 20 and younger.

Although ALL is the most common blood cancer in children and adolescents, the history of treating children with ALL has been a remarkable success story. Today, the average five-year survival rate for children with ALL younger than age 15 is approximately 92 percent.

While ALL can be more aggressive in children than in adults, children have fewer chromosomal abnormalities than adults do. Subsequently, adults generally do not fare as well as children after treatment, and they are at higher risk of relapse. The five-year survival rate for adults with ALL ages 20 and older is 35 percent.

An ALL diagnosis brings different considerations depending on patient age. For example, older adults may have additional medical conditions that can affect their treatment decisions. For working adults, an ALL diagnosis may mean having to stop working to receive treatment, which can have a big effect on family finances and insurance coverage if the patient is the primary policy holder.

Newly diagnosed adults of childbearing age should be told of the possible effect of treatment on reproductive organs. Education about options for fertility preservation is particularly significant for this age group. Younger adults (ages 20-39) can also face significant decisions regarding treatment types. Many of these patients fall into a grey area in which a determination needs to be made about whether they should undergo a pediatric or adult treatment protocol.

Young adults also can have unique lifestyle considerations when evaluating their treatment options. They may have recently moved out of their parents’ home, they may be in college, or they must be just launching their careers. Many such patients must rely on their parents for support during treatment, which can prove stressful.

Regardless of patient age, a cancer diagnosis affects entire families. Caregivers should be made aware of all help available to them. The Leukemia & Lymphoma Society (LLS) offers a comprehensive array of services and resources to patients with ALL and their families. Our Information Specialists are trained healthcare professionals who work directly with patients and their loved one to help them understand their diagnosis and treatment options and access needed resources. We also offer an array of financial support services, help with navigating clinical trials, and the services of nutrition consultants. 

The LLS Information Resource Center can be contacted by phone at 800-955-4572 or via www.lls.org/IRC.


Guest blogger Meredith Barnhart, LCSW-R, is director of the Information Resource Center for The Leukemia & Lymphoma Society (LLS).  

Learn about the ACCC education project on Multidisciplinary Acute Lymphocytic Leukemia Care and access project resources here, including a webinar series and a publication providing an environmental scan of current multidisciplinary ALL care delivery and identifies potential process/quality improvement  opportunities for providers. 



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