April 12, 2013 — In the Gray Area

From time to time, I take advantage of educational conference-call opportunities that are made available by some of the leading cancer research and patient-support organizations. This afternoon, I listened to one that featured Dr. Owen O’Connor of Columbia University and Dr. Bruce Cheson of Georgetown University, both of them lymphoma specialists.

I’ve heard Dr. Cheson numerous times in the past (that's him to the left). Dr. O’Connor was a new name to me (see below for his photo).

The program was sponsored by CancerCare.org.

Often, my chief take-away after listening to such programs is to feel reassured that I’m pretty much on top of the subject of recent advances in lymphoma treatments. That, in itself, is encouraging.

Today, though, I actually heard a few things I hadn’t heard before. Or, if I did hear them before, they didn’t register with me.

The first has to do with the vexed question of what sub-type of NHL I actually have. My initial diagnosis was for small B-cell lymphoma, which is usually understood to be an indolent form of the disease (as is the relatively common follicular lymphoma). My second-opinion from a pathologist at Memorial Sloan-Kettering in New York, however, identified a significant number of large cells (more dangerous, but also more susceptible to curative treatment), which set me out on the chemotherapy journey on which I embarked in early 2006. The new diagnosis at the time was “diffuse mixed large and small B-cell.”

As a result, when I attend lymphoma educational conferences where they ask participants with B-cell NHL to break out into workshop groups, some follicular and others large B-cell, I never quite know where to go.

Today I heard Dr. O’Connor speak of the fact that, when it comes to diagnosis, there is often a significant gray area between high-grade (somewhat more aggressive) follicular lymphoma and diffuse large B-cell. He also said there are well-documented examples of “histologic transformation of follicular lymphoma,” which means that a patient’s disease actually changes fro one form to another.

I’m not saying that happened to me, necessarily. It’s just that it highlights how the pathology reports that doctors often present to patients with such certainty are sometimes as much an art as a science.  Dr. O’Connor pointed out that, in the case of some patients, if you were to present the same pathology report to ten different pathologists, as many as three or four of them may differ from the others with respect to grading of the disease.

That would put me squarely in the gray area, it would seem. It also means I’m likely always to have difficulty deciding which workshop group to join.

Generally, the news continues to be encouraging. Both doctors emphasized that, in the world of B-cell lymphoma, there are a great many treatments to choose from in the event of relapse. Here’s hoping I’ll never need them, but in case I do someday, it’s good to know there’s a choice.

They also made me feel like the R-CHOP treatment — harsh as it was — was, indeed, the most appropriate choice for me at the time. One of the callers in the question-and-answer session was wondering whether it’s best for a newly-diagnosed follicular lymphoma patient to start off with Rituxan only, rather than more traditional chemo agents. Dr. Cheson was quite clear that, the younger the patient is, the more important it is — all things being equal — to start with the harsher treatment first. Not only are the benefits likely to be longer-lasting with traditional chemo, but older patients are more likely to have difficulty tolerating it. So, it’s better to use it while you can, as a primary rather than a refractory treatment, while you’re relatively young.

I’ve often wondered, as well — especially as I speak to other patients whose disease is quiescent and who are pursuing long-term maintenance Rituxan treatments — whether watchful waiting continues to be the best course of action. Dr. Cheson put my mind at ease in that regard, by repeating news of some research studies I’ve already heard about. Specifically, these studies have found that, while maintenance Rituxan treatments may cause longer remissions, when everything is said and done, the overall survival rates of those who have had these monthly IV drips is no better than those who have not.

Anyway, it was a productive and reassuring hour to spend — even considering the ambiguity that goes along with living in the gray area. Thanks to the good folks at CancerCare for putting on such a useful program!