Numbers, Uncertainty, and Follicular Lymphoma

A couple of days ago, I posted a piece on Tony Iommi, lead guitarist for the band Black Sabbath, and current Follicular Lymphoma patient. I linked to a story about Iommi, in which he says, among other things, "I look at life differently now. I could be here another 10 years or just one year – I don’t know."


A few hours after I posted the piece, a reader named Rodrigo from Brazil posted a comment about the Iommi interview.  He said he felt sad reading that quote; he had some "old, terrible feelings" that came back.

So let me start by saying, Rodrigo, I'm sorry that something I wrote made you feel sad. I know it was Tony Iommi, and not me, who said that, but I linked to it. I did pull out the quote from Iommi about his nervously checking himself every day. I tried to put a positive spin on it, but it wasn't enough.

I don't ever want to make any of my readers sad. So again, Rodrigo, I apologize.

I've been mulling over Rodrigo's comment for a couple of days. And it brought some back "old, terrible feelings" of my own.

I think it's time to talk about numbers.

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I've said it a few times here: any time I've gotten really upset about being a Follicular Lymphoma patient, any time I've had those "terrible feelings," it has been because of numbers. I've told the story of going to see a lymphoma specialist a few days after I was diagnosed, and grabbing a brochure about FL from a rack, and seeing the 5 year survival rates. It sent me into a two-week depression, where I cried every half hour or so. That was the first time.

And for a while, I'd see numbers like that and think the worst. The survival rate is 75%, I would read. What if I'm one of the 25%?

 I think maybe it's that kind of number (10 years!) that affected Rodrigo so much.

Numbers are scary because they seem so certain. There's something objective and sure and specific about a number that makes it definite and hard to argue against. I remember a relative reading the Wikipedia page on Follicular Lymphoma a few days after I was diagnosed, and writing to my wife, "That number worries me: 8-10 year median survival." Yeah -- it scared me, too. Thanks for bringing it up.

The number is scary because it is concrete. It gives us something to hold on to when so much else is uncertain. And not in a good way.

But here's the deal:

Numbers don't really mean much, of all kinds of reasons.

Take, for example, that 8-10 year median overall survival statistic from Wikipedia. For a long time, that was the survival statistic that people quoted. At this point, it's based on some very old data (as an anonymous commenter pointed out in responding to and supporting Rodrigo -- thank you for the comment, by the way). The 8-10 years was based on survival statistics from patients who were diagnosed before Rituxan even existed. Just that one treatment, Rituxan, has changed the way we think about survival in Follicular Lymphoma.

And then there's the "median" issue. If you know statistics, you know that "median" is the exact middle point of a group. In other words, half of the people in a group are below that number, and half are about. So half of FL patients will survive less than 10 years, but half will survive more than 10. It could be 11. Or 15. Or 50.

So let's look at that half that survives less than 10 years, because that sounds scary. But it shouldn't be.

First of, let's remember that for many patients, FL is diagnosed at age 65 and above. That's far more typical than the young age that Rodrigo and I were diagnosed at. Again, it could be 65, or 70, or 75. Let's consider a 75 year old man diagnosed with FL. 8-10 years isn't such a bad thing for him, is it? That puts him at roughly the life expectancy for a male in the United States. So, really, FL hasn't affected him, statistically, at all.

And let's consider what "survival" means. The 8-10 year statistic measures "Overall Survival." That means it measures death from anything -- cancer, sure, but also heart attacks, snake bites, getting hit by trains, and any other possible cause. It doesn't measure only death from Follicular Lymphoma or something related to it.

So 8-10 years sure as heck doesn't mean that someone diagnosed with FL will die in 8-10 years.

No go back and read all of that again, but substitute "18-20 years," because that's probably closer to the Overall Survival these days, given the treatments we have available. (Again, thank you Anonymous commenter.)

And now throw that away, because it doesn't even consider the treatments that are in the pipeline, or that haven't even been thought up yet that might be available in a few years, thanks to accelerated approvals.

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It sounds like Rodrigo pulled himself out of his funk pretty quickly, and I'm happy for that.

And I totally understand why numbers can put us in a funk in the first place.

But I hope everyone remembers to take a step back when those old feelings start to creep up on them, and remember that numbers don't tell the whole story, and that as certain as they might seem, numbers really do a lousy job of telling the past, let alone telling the future.

Thanks again for reading.