NHL is not a disease
There are over 80 subtypes of lymphomas, with different diagnostic evaluation, different treatment protocols and different outcomes.
Lymphoma subtypes are often categorized into three major groups:
- Chronic Lymphocytic Leukemia (CLL)
- Hodgkin Lymphoma (HL)
- Non-Hodgkin Lymphoma (NHL)
When first diagnosed, many patients are simply told they have Non-Hodgkin Lymphoma (NHL). But NHL isn’t a disease. It’s a series of more than 80 subtypes.
The term NHL does not tell the patient anything useful about the disease they have, it only tells them they do not have Hodgkin lymphoma. The more than 80 subtypes included under the NHL category behave differently, have different outcomes and different treatments. Patients need to know their specific diagnosis.
Sometimes, lymphomas can also be grouped as either aggressive or indolent (slow-growing lymphomas) or T-cell lymphomas and B-cell lymphomas. While these categories at least give patients a bit of helpful information about their cancer, they still don’t provide enough information for a patient to understand their diagnosis and how it will be treated.
It is very important to have a lymphoma specialist (haematologist or dermatologist depending on the subtype) diagnose the correct subtype of lymphoma. This ensures patients receive the right treatment at the right time for the right subtype and can find the right information and support.
What can we do?
The goal is to eliminate the category of NHL from the way lymphomas are listed, so the global community will adopt lymphoma subtype identification and tracking. This will ensure:
Are you a patient or caregiver?
The Lymphoma Coalition believes patients need to know their subtype so they can receive the best treatment. However, numerous patient organisations around the world have reported that patients aren’t told their subtype by their healthcare professional. Instead, they’re told they have NHL or lymphoma in general.
1. Ask your healthcare provider to specify which subtype you have.
2. Share this website with your healthcare team and explain the importance of distinguishing between the 80-plus different subtypes of lymphoma.
The more awareness we create together, the more patients will be informed and active in their care.
Are you a healthcare professional or a patient advocate?
1. Stop using the term NHL. NHL sounds like an important term to patients but what we want them to focus on is their specific diagnosis. Make sure the emphasis is on their subtype and not a term that adds nothing of importance to understanding the diseases. If you want to refer to a broader perspective use the term lymphomas.
2. Talk to your colleagues about their role in making sure patients with lymphoma know their subtype.