What You Don’t Know About Lymphoma and Why It Will Surprise You
Thought to be one disease, non-Hodgkin lymphoma is made up of more than 65 subtypes. Lymphoma Coalition CEO Karen Van Rassel explains the importance of knowing your subtype.
Non-Hodgkin lymphoma, often thought of as one disease, is made up of more than 65 subtypes. More than one million people around the world live with lymphomas, a group of blood cancers that develop in the lymphatic system, and a thousand more are diagnosed every day.
We spoke with the Lymphoma Coalition’s CEO Karen Van Rassel about why knowing your subtype is the next step to equalizing care around the world and the burden that a lymphoma diagnosis places on patients and their loved ones.
For those who don't know a lot about lymphoma, what do you want them to know?
The most important thing to know is that lymphoma is hard to diagnose. People need to know the lymphoma signs and symptoms, get to their doctor immediately and ask to be checked for it. Patients around the world are often diagnosed late or misdiagnosed and then treated for the misdiagnosis.
Once they are diagnosed, they have to understand that there are more than 65 subtypes of lymphoma. It’s not enough to know you are diagnosed with non-Hodgkin lymphoma (NHL), it’s important to know which subtype of NHL you have. When a patient is diagnosed, it’s a very traumatic time and they may not hear past “you have lymphoma” or “you have cancer”.
Doctors will tell you that they have told the patient (the subtype), but our global survey indicates that although they have been told, they really didn’t understand what they were told.
An additional hurdle we’re running into with some subtypes is to get the proper diagnosis of cell origin. For some of the lymphoma subtypes, it’s not enough to know the subtype, but to determine a cell of origin to determine the proper treatment.
How does the World Lymphoma Coalition help with subtype education?
The major focus of Lymphoma Awareness Day this year was the global Know Your Subtype campaign. Our members around the world participated to encourage patients, caregivers, the health care community and general public to get specific on lymphoma subtypes.
How do you support patients around the world who have different needs and resources?
When the Lymphoma Coalition first formed, we wanted a level playing field of information for any patient, anywhere in the world no matter where they lived. We’d discuss with different member organizations and would find out they thought they had all the therapies available but actually didn’t.
From this discussion, we created a database by country and subtype of which therapies and clinical trials are available and ones that are not so they can advocate as needed.
This helps us see what’s needed in each country and helps us to support patients. That database is available on the website, I encourage you to check it out.
How can people get involved?
I’d first encourage them to connect with their local patient organizations, which are the groups that make up our membership. There are so many ways to support the local organizations and connect with the patients.
Our website provides a list of all of those organizations alphabetically by country, along with many other resources to help those around the world who have be diagnosed with lymphoma.
I would also encourage others to find a way to pass along the word about knowing the signs and symptoms of lymphoma. You could save a life.
The Lymphoma Coalition serves as a global source for lymphoma facts and statistics, improves awareness and understanding of lymphomas and helps to build and support new and existing lymphoma groups. The Lymphoma Coalition is convening a global summit on November 30 in San Diego, California, U.S.A., to bring members together to share best practices, work on advocacy issues and identify needs around specific subtypes of lymphoma.
At AbbVie, we partner with patient groups to produce positive external change in those areas where the impact we achieve by working together is greater than if either party work alone.
- Painless swelling in a lymph node
- Chills/temperature swings
- Recurrent fevers and excessive sweating at night
- Unintentional weight loss
- Loss of appetite
- Persistent tiredness and lack of energy
- Breathlessness and coughing
- Persistent itch all over the body without an apparent cause or rash
- General fatigue
- Enlarged tonsils
1. Lymphoma Coalition. Signs and Symptoms, Common Signs and Symptoms. Accessed Oct. 24, 2016. Available: http://www.lymphomacoalition.org/2012-10-16-15-49-43/signs-and-symptoms
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