Tuesday, November 5, 2013

Non-Hodgkin's Lymphoma (Mostly) Explained

Patients Against Lymphoma (the organization behind Lymphomation.com) posted this video to their Facebook feed today.

It's from MedCram, which creates videos aimed at Medical students (the narrator of the video refers to exams a lot -- not sure I like med students watching videos to "cram".....).

This is part 1 of a two part series; it focuses on NHL, mostly laying out the different types, with part 2 focusing on Hodgkin's.

It's a good introduction to NHL,  aimed at future medical professionals. But a few things bothered me.

First off, I'm not crazy about the division of NHL in low-grade, intermediate-grade, and high-grade lymphomas. Calling them "grades," first of all, is confusing, since each type of NHL has its own grading. My understanding is that the NHL community has been moving away from these terms, preferring "indolent" and "aggressive." I can see where three categories is better than two -- DLBCL and Burkitt's are very different lymphomas, and probably shouldn't be lumped together under "aggressive." A guide from the Leukemia and Lymphoma Society just cuts out "intermediate" completely, and calls them "'indolent' or 'low grade'," and "'aggressive' or 'high grade'."

My point is, this is potentially confusing to patients. If this is intended for future medical doctors, it would be nice to have some consistency in terminology. Makes it easier for everyone to understand.

Another, similar issue: Follicular Large Cell Lymphoma is listed as an Intermediate Grade Lymphoma. Honestly, I've never heard this term before. And, in fact, the World Health Organization classification from 2011 (its most recent) does not recognize this as a separate type of NHL. As far as I can tell, the narrator is using this term to describe transformed Follicular Lymphoma, but he never uses that term (or discusses transformation at all, which seems like it should be kind of a big deal).

Again, maybe we should have different names for the different ways Follicular Lymphoma presents itself. But for now, we don't. It just creates confusion. Maybe this is why we have problems communicating with our doctors sometimes?

Which brings me to the part that bothers me most. It's a throw-away comment the narrator makes, so quick you might miss it if you aren't listening carefully. He describes the two types of B cell lymphomas as being from follicles (like Follicular Lymphoma) or as diffuse (like DLBCL). Follicle lymphomas a "good"; diffuse are "not good." He uses this term again to describes "less proliferative" (good) and "more proliferative" (bad) types of NHL. Low-grade/indolent = good.

I have a problem with this. I've heard lots of patients who are told, sometimes by doctors and sometimes by patients, that they got "the good kind of lymphoma." What makes it good? This is entirely a matter of perspective. Aggressive lymphomas are not "the good kind," since they need to be treated immediately, unlike some indolent lymphomas. On the other hand, most aggressive lymphomas are, under some circumstances, curable, unlike most indolent lymphomas. I'd say that makes aggressive lymphomas "good." I'd say there's nothing good about knowing that, even when Rituxan or Bendamustine  has knocked back my Follicular Lymphoma, it's probably coming back at some point. Not good.

I refer you to the very funny (if you like cancer humor) subplot from Curb Your Enthusiasm when Larry tries to figure out if Hodgkin's or Non-Hodgkin's is "the good kind." When a sitcom explains this better than a medical exam preparer, I think we have a problem.

All of that said, I think the video did do a good job of explaining some basic stuff about NHL -- cleaved cells, maturity of cells, etc. But there are some details that matter, especially when those details affect the way a doctor communicates with a patient about her disease.

The really big lesson is, if you're in medical school, and you have exams coming up, and you have to cram for an exam on lymphoma, and a video is your only option, then please, please find a video made by a lymphoma expert, not someone described as "Board certified in Internal Medicine, Pulmonary, Critical Care, and Sleep Medicine."  You owe us, your future patients, at least that much.


Anonymous said...

Follicular Large Cell was the name (more or less) of follicular grade 3 before the current classification system changed the name to Follicular grade 3 in the late 90's...

There are some differences between follicular grade 3 and follicular large cell in terms of classification, making it difficult to draw clear comparisons between earlier literature on follicular large cell and current grade 3 literature ...

So, if you go to PUB med and put in Follicular Large cell lymphoma, a number of studies will come up There is at least on paper since that looked at the overlap between dx's of follic large cell and current grade 3 classification

If you are interested in the early history of the entity follicular Large cell.. there is an excellent 1993 paper by Dan Longo called What's the Deal with Follicular Lymphoma http://jco.ascopubs.org/content/11/2/202.full.pdf

Lymphomaniac said...

Thank you for the information on where to find more information on Follicular Large Cell. You're right -- the Longo paper was excellent (how could a paper that starts with a quote from Proust be anything but?). I started looking through some of the other stuff on FLCL and Grade 3 FL -- I'll get to more of it when I have time. I'm normally fascinated by the politics of something like the change in classification that took out FLCL and brought in the current grading system. I'm still kind of fascinated, but maybe less so with this because it's a little closer to home, and I feel like we may have lost something in the change, especially at a time when we are recognizing more and more fine differences in genetic properties of the cancers we lump together with a common name. I would guess we'll end up with a new classification system at some point, based on that.

But I still feel like the use of a dated term in an educational video for medical students is a problem, particularly as it relates to communication with patients. I want my doctor to speak the same language as me. And I recognize that these exams are probably pre-specialization, and that the future hematologists viewing that video will get more current as they move on. But I also know that the tone that gets set early tends to stick around....

Anyway, thanks again for the links. I'll keep reading.

Anonymous said...

Agree that current terminology should be used

I was diagnosed with follicular large cell, just before the change in classification and have tried to make sense of how earlier research on that compares with the newer grade 3 stuff... so, when the systems change, it makes it tough to compare earlier research

The Longo paper was the one that helped me the most when I was diagnosed.. glad you also liked it

rollerboy_1979 said...

Please read my new book chronicling my late wife's battle with non-Hodgkins lymphoma.