Understanding Your Lymphoma Diagnosis: Making Sense of Over 100 Different Types

Lymphoma is a cancer that affects lymphocytes, a type of white blood cell that helps protect the body from infection. While lymphoma is the most common type of blood cancer in adults and the third most common type of cancer overall in children, it is considered rare and highly complex. One of the defining characteristics of lymphoma is its unique heterogeneity. In fact, there are more than 100 different subtypes of lymphoma, and the list continues to grow.

Each type of lymphoma has a different biology, prognosis, clinical course, and therefore different treatment and monitoring strategies. What is true for one type of lymphoma, may be completely different for another type, making it crucial for patients to fully understand their specific lymphoma diagnosis.

Categorizing Lymphoma

The only way to be sure of a diagnosis of lymphoma is for a doctor to conduct diagnostic tests, most commonly an excisional biopsy.  A pathologist will examine a portion of this biopsy sample under a microscope to see if it contains any lymphoma cells and, if possible, to identify the specific type of lymphoma. From there a lymphoma pathologist can help classify your lymphoma and portions of biopsy samples will be used for other tests to confirm the diagnosis and to more exactly identify the specific subtype of lymphoma. There are three major categories of lymphoma:

• Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma (CLL/SLL): CLL/SLL are the same disease (and a type of lymphoma) with slightly different manifestations. Where the cancerous cells gather determines whether it is called CLL or SLL. Leukemic cells develop because of a change that takes place in the cell’s DNA.
• Hodgkin Lymphoma (HL): There are five types of HL, a form of lymphoma that involves the Reed-Sternberg cells.
• Non-Hodgkin Lymphoma (NHL): There are more than 90 types of NHL, some of which are more common than others. Any lymphoma that is not CLL/SLL or that does not involve Reed-Sternberg cells is classified as a non-Hodgkin lymphoma.

Each category is further subdivided into numerous types that differ in the type of cell they originated from (B, T, or NK cells), the way they develop and spread, and the way they are treated. Unlike other cancers, lymphoma therapy and prognosis (how well the patient will do) are determined by the lymphoma type, the presence of certain markers in lymphoma cells, and other factors like age and other medical issues, more than by the stage of the disease (how advanced the disease is).

Understanding Your Subtype

Understanding your diagnosis and specific lymphoma subtype is crucial to receiving the very best care and ultimately achieving the best outcomes. Each subtype has different prognoses, courses of treatment, outcomes, and research. Knowing your exact subtype allows your healthcare team to tailor treatment plans to your unique needs, improving outcomes and minimizing unnecessary side effects. Additionally, understanding your subtype empowers you as a patient, enabling you to make informed decisions, seek the right support, and access resources that are most relevant to your situation. This personalized approach is essential for navigating the complexities of lymphoma and optimizing your path to recovery.

If a patient doesn’t know what type of lymphoma they have, they should first start with their hematologist or other treating physician to clarify the working diagnosis. Patients can also request to see the pathologist’s report on their tissue describing the testing that was done and the conclusions. In an emerging trend, some patients have requested to directly meet with the pathologist who made the diagnosis.

Armed with the information about a specific subtype, patients can then access the Lymphoma Research Foundation’s disease-specific resources, and be empowered to advocate for your health.

---