Statistics don't matter

I had to share this. It came up in my support group last week, and I've been re-reading it and contemplating it. It's another one of those "hopeful" things.

It's one of many responses to a woman named Tina who was just diagnosed with follicular NHL. She had done some reading, and had found statistics about survival rates and the "incurable" nature of fNHL. The horrible twist in all of it: she has already been treated successfully for Hodgkin's Lymphoma. Totally cured. Then two years later, she found a swollen node and was diagnosed with follicular NHL. The doctor told her she probably had both types all along, and the treatment for the Hodgkins wiped out the Hodgkins, but only temporarily halted the follicular (they use different courses of chemotherapy).

So Tina wrote to the group asking those of us with fNHL how we dealt with it's being "incurable," with the depressing statistics, and the prospect that we'll live with this disease for a long time -- maybe forever -- either by having it, fighting it, or worrying about when it's coming back. Not a happy thing to think about and respond to, but I thought the response below was great. It gave Tina and the rest of us a lot to think about. It was written by a guy named Tony, who is a freelance writer and fNHL patient. (He has a great web site and blog called "The Lymphoma Files", if you have time to read someone else's.)

Here's what Tony has to say about depressing fNHL statistics:

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Hi, Tina - There are lots of reasons to be encouraged and look at your situation a bit differently. First, overall survival statistics have been improving. Historically, the Overall Survival (OS) has been about 10 years, but in the recent era (essentially, since treatment with Rituxin), figures have been improving for the first time. Now, we see OS of 15 years or more--Stanford released a report last year saying OS in their modern era is now 18.2 years.

I know. Right now you're saying, "I'm only in my 20s...even 18 years doesn't seem like a long time." But here's where you need to consider all the factors put together. Follicular lymphoma is a disease that typically affects older people; in fact, the median age at diagnosis is (depending on which figures you cite) somewhere between 60 and 67. Let's call it 65.

Now, let's keep two things in mind: 1) "Median" doesn't mean "average." It means half of the data fall above that number, and half fall below. So, half the people diagnosed with follicular lymphoma are age 65 and over, while half are age 64 or younger. 2) "Overall Survival" means just that: it does NOT refer to mortality due to the lymphoma. It refers to mortality related to anything: accidents, heart attack, stroke, and so on.

Why is this important? Well, consider the fact that half the population diagnosed is age 65 or older. Also consider the average life expectancy for an adult in the United States is now roughly 76 years or so. So, the 65-year-old diagnosed with fNHL has a median survival of something like 10 to 15 years. But guess what? The average 65-year-old who is perfectly healthy and disease-free is also likely to have a similar median survival.

Now, consider the fact that we're talking about overall survival, again with half the population in question above age 65. Naturally, this is going to skew the statistics; remember, Overall Survival includes people who die of any cause. And once again, median is NOT the same thing as average. When we're looking at 50% surviving less than 10 years (for example), and 50% surviving more than 10 years, that "more than 10 years" can--and does--include people who have survived 20 years, 30 years and more. Someone could survive 50 years after fNHL diagnosis, and they would still be reflected on this scale simply as a "10+ year" survivor. Make sense?

So, you're young. That's the #1 thing that's going to affect your overall survival.Now, there's the question of a cure. As recently as eight years ago or so, there really was no debate about this: pretty much everyone would have told you Stage III or IV fNHL was incurable. But now, there's an actual debate. Some respected oncologists are saying fNHL is curable in a certain subset of patients with treatments such as R-CHOP, Radioimmunotherapy, and the like. We don't have a full set of data yet (partly because data for fNHL has to be collected over several years--an improvement in survival can't be seen for more than a decade), so the jury's still out. We've debated the potential for a cure on this board before, but that's not what I think you should take away from what I'm saying. The simple fact that the debate exists right now is cause for hope. It shows progress, and that's future progress that will benefit your case.

Finally, even in the era before our modern treatments, you'll notice, by looking at the statistics, a flattening of the curve and a beginning of a long "tail" at about 15 years, and continuing out. That means some people were making it that long before Rituxin and modern improvements...even though they had an "incurable" disease. "Incurable" doesn't mean no one will survive, and looking at the statistics shows you that. The curves drop quickly in the first 10 years, but if you make it 10 years, you have a good chance of hitting 20 years, and if you make it 20 years, you have a good chance of going on long after that, running the natural course of your life. You can probably guess the kind of people who end up in that part of the long tail: twentysomethings who are active and love dressage, among other things.

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Read it again if you need to.What Tony gets at is how easy it is to misinterpret statistics, and how meaningless it is to even consider what treatments might be like in a few years, given how quickly things change in that area, and how important it is to stay hopeful.

When someone new joins the support group, the first things we tell them are (1) don't read or believe statistics you read on the web, and (2) remember that everything we know today about treatments will change tomorrow -- for the better.

No one has ever told me I have X amount of time to live, and I'm not asking for information. It would mean nothing, medically or personally. I don't plan on going anywhere anytime soon, so why bother?