Over 1 million people worldwide have lymphoma, yet this complicated cancer is not on doctor’s radar.

Despite being the one of the fastest growing and fifth largest cancers globally with more than 1 million people currently diagnosed, lymphoma is not on the mind’s of doctors.

Patient stories gathered worldwide from people of every age show that late and mis-diagnosis is still a major issue and one of the barriers to early treatment and potential cure.

These stories echo the data collected by the Lymphoma Coalition during the Global Patient Survey in 2012, the results of which showed that 81% of the over 1600 respondents from 17 countries were given incorrect diagnoses with their initial symptoms.

The question is why?

“Statistics and patient stories tell us that the medical community may not be considering lymphoma as a possible reason for their prolonged symptoms,” said Karen Van Rassel, Executive Director of the Lymphoma Coalition. “It’s a complex cancer that mimics many conditions, and lymphoma is just not on the radar of the first-line medical community.”

Symptoms that can mimic a cold, flu, menopause or even allergies results in quick and often incorrect diagnosis – and at times even prescribed medication for the suspected illness.

Access to life-saving care and months of potential treatment are being lost because of late and mis-diagnosis. Along with this people’s lives are being turned upside down because the incorrectly-diagnosed, persistent and aggressive symptoms do not go away.

“Everyone thought I was trying to get attention. For many months I was too tired to work, I had night sweats, itchy skin and even a lump near my groin, but my doctor told me repeatedly that it was nothing to worry about,” revealed one patient, who is currently living with Non-Hodgkin’s lymphoma. “I took all kinds of medication for my symptoms, but of course nothing helped. My family tried to sympathize, but to them I looked fine, I just complained a lot. After many months everyone got tired of listening to me. It wasn’t until I brought up the possibility of lymphoma that my doctor looked into it and sent me to a specialist.” 

Adding to the problem is the fact that there are no pre-screening programs in place to test for lymphoma. And with causes and risk factors still being researched, diagnosing lymphoma can be as complicated as the cancer itself.

“Education is key. Educating the public and the medical community on the signs and symptoms of lymphoma is the only way to ensure that patients are asking the right questions and pointing out specific concerns. Being examined by a lymphoma specialist and receiving the correct diagnosis is critical,” added Ms. Van Rassel. 

Patient stories from around the world are currently published on the Lymphoma Coalition website (www.lymphomacoalition.org). Visitors to the website can test their knowledge of lymphoma signs and symptoms by taking the Know Your Nodes quiz.  

Causes and risk factors of lymphoma

Although the exact risk factors and causes of lymphomas are not known to date, there is a body of researchers working on it. The InterLymph Consortium, formally known as The International Lymphoma Epidemiology (InterLymph) Consortium, is an open scientific forum for research in non-Hodgkin lymphomas and Hodgkin lymphomas.

The Consortium continues to make seminal advances in the understanding of the environmental, genetic, lifestyle, infectious and immunological risk factors for lymphoma. Five new InterLymph pooled analyses were published in international peer-reviewed scientific journals since December, including several focused on genetic risk factors.

One fascinating discovery, in the pooled analysis self reported history of infections and non-Hodgkin lymphomas risk study, led by Nicolaus Becker of the German Cancer Research Centre, is that infectious mononucleosis (mono) was associated with a 20% increased risk of non-Hodgkin lymphomas whereas those reporting measles or whooping cough was associated with an approximate 15% reduction in risk.

World Lymphoma Awareness Day 2013 (WLAD)

Initiated by the Lymphoma Coalition in 2004, the goal of the day is to raise awareness of cancers of the lymphatic system and especially symptom recognition and early diagnosis. 

 

Global Database

Information by country, region and/or subtype on treatments, clinical trials and incidence/mortality rates.

Resource Library

Over 2,000 pieces of information on lymphoma diagnosis, treatment, research, support and lifestyle.

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The information on this website is for general use only. Please consult your physician if you think you may have lymphoma or
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Our website does not host any form of advertisement. Last updated: 03/27/18. Copyright © 2018 Lymphoma Coalition. All rights reserved.