NHL in the (Flawed) News

I'm going to do something I don't usually do -- in fact, I don't think I've ever done it in the blog.

I'm going to mention someone who died from lymphoma.

The reason I usually avoid writing about it isn't because I fear it, or it upsets me, or I'm trying to avoid it. But Lympho Bob has always been about providing information -- whether it's about me personally, or about lymphoma and its treatments more generally -- and by providing information, providing hope. Writing about people who have died just doesn't usually provide hope.

Sunday, a young actor named Andy Whitfield died. He was 39, and had a very aggressive NHL, Peripheral T-cell Lymphoma.

I don't want to dwell on Whitfield dying. Information and hope, right?

Sparked by Whitfield, ABC News put out a story called "Non-Hodgkin's Lymphoma Kills Nearly 20,000 Each Year." What should have been an opportunity for information -- especially during Lymphoma Awareness Month -- turned into a mess of misinformation. Information should give hope. This story doesn't.

It contains statements like this: "The Lymphoma Research Foundation estimates that 332,000 Americans are currently living with this type of cancer  that kills quickly –  only 63 percent live  five years after diagnosis, according to the Lymphoma Research Foundation."

Bull.

The problem is, NHL is not one disease. It's at least 30 different diseases, maybe even over 60, by some counts. To say of NHL "this type of cancer that kills quickly" is just plain wrong. Some types of NHL, unfortunately, are very aggressive, and can outrun attempts to treat them. But that's some types, certainly not all. A large number are indolent, slow-growing, my own included.

As for the 63% five-year survival: that's exactly the kind of statistic -- misleading -- that would throw me into a panic. The percentage means nothing when disucssing NHL as a whole. And, as I've written before, it doesn't mean much even when discussing a particular sub-type, because so much depands on the context. For instance, the age when a patient is diagnosed,  or the fact that lymphomas often come about when someone has another disease. Or, maybe most importantly, that the 63% statistic is for Overall Survival Rate: it measures how many people die after diagnosis, not how many people die from lymphoma. It includes heart attacks, bus accidents, and every other cause of death.

The article states, further on, "While non-Hodgkin’s lymphoma can strike at any age, lymphomas as a whole are the most common childhood cancers, whose symptoms include chills, fever, weight loss and enlarged lymph nodes."

First of all, not all NHL types are symptomatic. Those listed symptoms are very common, but they don't tell the whole story. Some people have no symptoms; others have those symptoms, but they don't have lymphoma.

Second, the discussion of childhood cancer seems to want to lump hodgkins and non-hodgkins together (which could bring us up to about 70 different diseases), to create "lymphomas as a whole." Even then, the article gets it wrong: leukemias, not lymphomas, are the most common childhood cancers.

This horrible article concludes with a discussion of treatments:
"Right now, NHL patients have three treatment options: chemotherapy, radiation, therapy that targets specific cancer cells while leaving normal cells unharmed, but new treatments are in the pipeline. One new therapy consists of giving patients a high dose of chemotherapy, along with stem cells that can potentially replace the cells destroyed by the cancer treatment. Another experimental therapy uses the body’s immune system to fight the cancer."


Radiation is not common for NHL; as a systemic cancer (one in which the cancer cells travel through the body, rtahre than staying in one place as a solid tumor), traditional radiation won't work. And stem-cell transplants are far from "new." The earliest versions of them took mplace in the 1950's.

The more I read the article, the more it makes me angry. During a time like Lymphoma Awareness Month, this is exactly the kind of crappy research job that does the exact opposite of what we want to happen. And when something good (a chance to educate) might come from something bad (like Andy Whitfield's death), this is what we get?

Shame on you, ABC News. You blew this one, bad. At best, what should give people information could end up taking away their hope. At worst, by relating this to Andy Whitfield, you sullied his memory.