World Lymphoma Awareness Day (September 15) is over and we are in the waning days of National Blood Cancer Awareness Month (September). People in the United States and across the world have come together to raise awareness and promote education about lymphoma, leukemia, and myeloma.
With nearly 1 million blood cancer survivors in the United States and over one million people worldwide living with the most common form of blood cancer – lymphoma – these under-publicized cancers require considerably more attention, education, and resources devoted to research.
A recent global survey confirms that there is much work to do on the blood cancer awareness and education front. The Lymphoma Coalition (LC), a worldwide network of lymphoma groups, including Chicago Blood Cancer Foundation, conducts a global patient survey every two years to assess key factors that affect the lymphoma patients. The LC reported that the results of the 17 country survey involving more than 1,600 patients were “more alarming than anticipated.” Keep in mind this is a worldwide survey and that state of affairs in the United States is not quite as bad.
Greater public awareness is greatly needed
We have highlighted the problem of lack of awareness and publicity associated with blood cancers in the past. Many blood cancers are diagnosed at later stages and are still capable of being treated and even cured. But that is not true of all blood cancers and early diagnosis and treatment always is important. The global survey underscores the awareness gap. According to the LC, “57% of patients with symptoms of lymphoma 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.” Knowing the symptoms of blood cancer, promptly seeking treatment, and pursuing an accurate diagnosis is important.
Medical professionals need more education
Not only does the general public suffer from lack of awareness about blood cancers, medical professionals often lack requisite knowledge about blood cancer as well. This adversely impacts patients in many ways. According to the LC, “[m]isdiagnosis 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.” Twenty-one percent were correctly diagnosed within two weeks, 47% by the four-month mark, and 33% did not receive a correct diagnosis until more than four months from the initial doctor visit.
As noted in prior columns, lack of education and improper motives have resulted in many patients being deprived treatments that would benefit them such as radioimmunotherapy. It is important that family practitioners, internists, and nurses – as well as oncologists and radiation therapists – are aware of signs and symptoms of blood cancer so that patients are promptly and properly diagnosed, started promptly on appropriate treatment (when warranted), and not subject to the loss of time and opportunity associated with delay and misdiagnosis.
Patients are benefited by doctors and institutions specializing in the particular type of blood cancer affecting them
The pace of research and state of knowledge has increased exponentially. New treatments, clinical trials, findings, and refinements happen on almost a daily basis. The research is not limited to treatments, it includes developments in specific disease identification and differentiation and epidemiology.
Take, for example, the most common subtype of non-Hodgkin lymphoma – diffused large B-cell lymphoma. When I was diagnosed over 14 years ago, there were two or three chemotherapy regiments commonly used. A study had just come out showing that CHOP was as effective, if not more effective, than an alternative regiment that was more toxic. With the benefit of the research, I took what was than the state of the art treatment CHOP. Had I been diagnosed a few years later, I would have been given R-CHOP – CHOP with the monoclonal antibody rituximab.
When I was diagnosed, some patients responded to CHOP and some did not. Doctors did not know why this was or whether I would be a responder or non-responder. Using DNA microarrays, researchers since have been able to determine, at least in part, why some patients responded well to treatment while others did not. It turns out that all DLBCL is not the same. We now know that there is “Germinal centre B-like DLBCL”’ and “activated B-like DLBCL” and now there are different treatment for these two disease sub-sub-types.
This demonstrates that, to be effective, awareness and education cannot be one time, or one day, or one month campaigns. Advocates, survivors, organizations, and family members must be committed to educational and awareness activities on a sustained, continuous, evolving basis. This means well-funded, well-organized, impactful activities.
Activities around the globe
Let’s take a look at some of the activities organizations, advocates, and volunteers putting themselves on the front lines to promote blood cancer awareness and education this month.
Sue Robson and our friends at Lymphoma Foundation Canada released a new video “Lymphoma: Alive Again.” The Myeloma, Lymphoma and Leukaemia Foundation of Barbados held its annual Lymphoma Awareness Educational Outreach. KOKDER and KANKO, the cancer coalition of Turkey, had a nation-wide event that was broadcast by two national TV channels in prime time. The CHOC, Sunflower Fund, Campaigning for Cancer, Faces of Hope Foundation, and KZN Lymphoma Patient group collaborated to raise awareness of lymphoma in South Africa through a variety of activities.
Meanwhile, a patient day was held at the Mainzer Castle in Germany hosted by DLH, LHRM, and Myeloma Euronet. In the United States, several buildings participated in “Light it Red for Lymphoma.” The Colombian Foundation for Leukemia and Lymphoma is hosting a month-long campaign in September to raise awareness of lymphoma. The Leukaemia Foundation of Australia organized multiple educational seminars. Awareness Brigades were on the streets in Buenos Aires. While writing this column, we are listing live on the internet to a wonderful patient event put on by the National CML Society called “Living Well with CML.” It is held today, 9/22, because CML is attibutable to a translocation of chromosomes 9 and 22. These are just some of the events taking place.
Follicular Lymphoma Conference
There is an objective and subjective reason for suggesting that “Follicular Lymphoma: On the Road to Cure” educational seminar put on by Chicago Blood Cancer Foundation and Hope for Lymphoma tops the list of events. The subjective reason is that is the event this Cancer Examiner participated in. However, by any standard the symposium was excellent Dr. Stephanie Gregory, who is in the top one percent of hemotologists/oncologists, chaired the event and was joined by a superstar line-up of world lymphoma experts, including: Dr. Brad Kahl (University of Wisconsin Carbone Cancer Center), Dr. Mathias Rummel (Justus-Liebig University of Gleben, Germany), Dr. Stephen Schuster (University of Pennsylvania), Dr. Christopher Flowers (Emory University School of Medicine, Atlanta, Georgia), as well as Dr. Parameswaran Venugopal, Dr. Henry Fung, and Dr. Sunita Nathan from Rush.
The symposium, though originating in Chicago, had a tremendous reach around the world. The symposium was broadcast live on our “Battling and Beating Cancer Radio Show” on the Blog Talk Radio Network, will air on CAN TV in Chicago, and videos will be posted in the coming weeks at the Chicago Blood Cancer Foundation and Road2Cure websites.
The most compelling component of this symposium was that it was streamed live on the internet and nearly 12,000 participated from all over the world. Not only were people watching and listening, but they relayed questions to the faculty and were actively chatting about on the program with Facebook messages, Tweets, emails, and messaging. It may have been the most widely participated same day lymphoma educational event ever.
Battling And Beating Cancer – The Cancer Survival Book
In commemoration of National Blood Cancer Awareness Month, Xlibris publishing released an updated edition of the book that my wife Charlene and I wrote, called “Battling and Beating Cancer – The Cancer Survival Book.” It is available at www.xlibris.com, www.chicagobloodcancer.org, www.charleneandscott.org, and soon at www.amazon.com and www.barnesandnoble.com. Proceeds, of course, go to cancer research and education.
October will remind blood cancer advocates how much more we can do!
Once again, thanks and congratulations to everyone helping to promote blood cancer awareness and educating people about lymphoma, leukemia, and myeloma. The number of events has increased, but our friends in the breast cancer community will show us how much more we can and must do when they turn the world pink in October.