Misdiagnoses still prevalent in lymphomas – results from Global Patient Survey

Misdiagnosis, incorrect medication and treatment, and time to correct diagnosis, are serious issues that still plague the healthcare community when dealing with patients who exhibit lymphoma symptoms.

Added to that, the causes and risk factors are still unknown.

The Lymphoma Coalition, a worldwide network of lymphoma groups, conducted a Global Patient Survey to assess key factors that affect the lymphoma patient’s journey. The survey, conducted every two years, helps to determine the change in the lymphoma landscape. The lack of understanding and awareness of the signs and symptoms of lymphomas is a factor that has been at the forefront of the issues surrounding this type of cancer for years.

The results of the 17-country, 1606-participant survey were more alarming than anticipated. Misdiagnosis by first-line medical professionals was high with only 19% of respondents having been given a correct diagnosis of lymphoma with their initial symptoms. The most common incorrect diagnosis was a skin disorder, followed by a cold/viral infection, a glandular issue or no diagnosis at all.

Of those misdiagnosed, 41% were prescribed medication for their symptoms.

Time to correct diagnosis ranged from two weeks (21%) to 47% by the four-month mark, and 33% didn’t receive a correct diagnosis until after four plus months from the initial doctor visit.

Making the diagnosis delay worse is the lack of awareness of lymphatic cancers in the general public. Despite having symptoms, 57% of patients visited their doctors within less than six months of first experiencing symptoms, but 26% took between six months and two years with 11% taking more than two years.

“Increasing education and awareness of lymphoma is critical when dealing with a complicated cancer like lymphoma,” says Dr. Laurie Sehn, chair, BC Cancer Agency Lymphoma Tumor Group, Clinical Associate Professor, University of British Columbia, Canada and Chair of the Medical Advisory Board for the Lymphoma Coalition. “People must understand that any ongoing symptom may not be normal and they need to be persistent with their concerns when speaking to their doctor.”

“I just thought I had a cold that would not go away,” says 45-year-old Guy Bouget, Président, France Lymphome Espoir. “I had no idea what lymphoma was and I certainly didn’t think I had cancer. I just kept going back to my family doctor until she finally sent me to a specialist when she found a lump in my underarm. That’s when we first heard of lymphoma and I knew that I was dealing with something a lot worse than a cold.”

Lymphoma, a complicated cancer of the lymphatic system, made up of 45+ different types, can easily be mistaken for the cold or flu. Symptoms can include drenching night seats, persistent unexplained fever, swollen glands, persistent coughing, breathlessness, persistent itching, rash, fatigue, dizziness, headaches and weight loss.

In the meantime, lymphoma cancers are still on the rise. The causes are still unknown and therefore there is no prevention or screening strategy. Awareness of the signs and symptoms must remain a priority for early detection of these cancers.

World Lymphoma Awareness Day (WLAD)

On the heels of the startling results from the 2012 Global Patient Survey on Lymphoma, the goal of the day is to raise awareness of cancers of the lymphatic system and especially symptom recognition and early diagnosis. First initiated in 2004 by the Lymphoma Coalition, the global campaign continues to provide a platform for doctors, nurses, patient support organizations, patients and their families to share vital knowledge about lymphoma, its signs and symptoms, and how it affects the lives of millions of people around the world.

Why have WLAD?

Lymphomas do not have a known cause and is very complex as there are over 45 subtypes. Over one million people worldwide live with lymphoma and nearly 1,000 people are diagnosed with the disease every day, but there continues to be very little awareness of the signs and symptoms of lymphoma.

Increasing awareness of lymphoma will allow people around the world to better recognize its signs and symptoms, leading to earlier diagnosis and more timely treatment.

Greater awareness will also empower patients and their families to demand specialist treatment and care from qualified lymphoma physicians as well as gain access to the most up-to-date information, support and treatment.

WLAD also provides a platform for individual countries to address local issues, such as access to the most effective treatments.

Click on the pdf below to download the complete press kit.

icon LC WLAD 2012 Press Kit (263.48 kB)


Karen Van Rassel

Executive Director

Coalition Lymphoma Coalition


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Sandra Grilo Tenaglia

Communications Specialist

Lymphoma Coalition


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