Disease at a Glance

Summary
Anaplastic large cell lymphoma (ALCL) is a rare type of Non-Hodgkins lymphoma. Lymphoma is a cancer of the lymph system, part of our immune system. Non-Hodgkins lymphoma involves abnormal growth of white blood cells, either T cells or B cells. Anaplastic large cell lymphoma is an aggressive cancer that usually involves the T-cells. Cancer cells in ALCL can be identified by their appearance under the microscope and by the presence of a tumor marker called CD30 or Ki-1. There are two types of ALCL, a type that affects mainly the skin (cutaneous ALCL) and a type that affects other body organs (systmic ALCL). Systemic ALCL also has two types, ALK-positive (anaplastic lymphoma kinase) and ALK-negative. ALK-positive ALCL occurs more often in children and young adults. ALK-negative ALCL tends to occur in older adults. The symptoms of cutaneous ALCL include red skin lesions that break open and do not heal. Sometimes cutaneous ALCL is also found in the lymph nodes. The symptoms of systemic ALCL include fever, night sweats, and weight loss (B symptoms). The cancer can be found in the bone, soft tissue, spleen, liver and skin. The cause of ALCL is unknown. One type of ALK-negative ALCL has been associated with breast implants. ALCL is diagnosed by a biopsy of the tumor or abnormal skin and examination of the tumor cells under a microscope. Additional testing including PET scans, CT scans, MRI and a bone marrow biopsy can tell doctors if the cancer has spread to other organs.[15060
Estimated Number of People with this Disease
In the U.S. there may be between

3,000 to 30,000

What Information Does GARD Have For This Disease?

Many rare diseases have limited information. Currently GARD is able to provide the following information for this disease:

*Data may be currently unavailable to GARD at this time.
When do symptoms of this disease begin?
The most common ages for symptoms of a disease to begin is called age of onset. Age of onset can vary for different diseases and may be used by a doctor to determine the diagnosis. For some diseases, symptoms may begin in a single age range or several age ranges. For other diseases, symptoms may begin any time during a person's life.
Prenatal Selected
Before Birth
Newborn Selected
Birth-4 weeks
Infant Selected
1-23 months
Child Selected
2-11 years
Adolescent Selected
12-18 years
Adult Selected
19-65 years
Older Adult Selected
65+ years
The common ages for symptoms to begin in this disease are shown above by the colored icon(s).

Symptoms

This section is currently in development. We recommend speaking with a doctor to learn more about this disease. 

Causes

This section is currently in development. 

Next Steps

Talking with the Medical Team

Good communication between the patient, family, and medical team can lead to an accurate diagnosis. In addition, health care decisions can be made together which improves the patient’s well-being and quality of life.

Describing Symptoms

Describe details about the symptoms. Because there may be many different causes for a single symptom, it is best not to make a conclusion about the diagnosis. The detailed descriptions help the medical provider determine the correct diagnosis.

To help describe a symptom:

  • Use a smartphone or a notebook to record each symptom before the appointment
  • Describe each symptom by answering the following questions:
    • When did the symptom start?
    • How often does it happen?
    • Does anything make it better or worse?
  • Tell the medical team whether any symptoms affect daily activities

Preparing for the First Visit

Working with a medical team to find a diagnosis can be a long process that will require more than one appointment. Make better health decisions by being prepared for the first visit with each member of the medical team.

    Make informed decisions about health care: 
    • Prepare a list of questions and concerns before the appointment
    • List the most important questions first, not all questions may be answered in the first visit
    • Ask questions about symptoms, possible diagnoses, tests, and treatment options
    For future appointments:
    • Discuss what was not addressed at the last visit
    • Discuss changes in the quality of life for the patient, family, and caregivers
    • Discuss health goals and other issues in the patient’s and family’s life that may affect the health care decisions
    Take notes during the appointments to help remember what was discussed.

    Last Updated: Nov. 8, 2021