Age, Stage, and Status in Predicting FL Survival

I want to share some research that was presented at the International Society for Pharmacoeconomics and Outcomes Research conference a couple of weeks ago. The research itself is interesting, but more importantly, it presents a chance to remind you about how to read statistics about cancer.

The presentation was called "Real-world Treatment Patterns and Survival Among Follicular Lymphoma Patients: A SEER-Medicare Analysis." Click here to see a copy of the poster that was presented. It looks at the kinds of treatments given to a large group of FL patients over 17 years, and also looks at survival statistics for the group.

The research uses data from a large database called SEER, or "Surveillance, Epidemiology, and End Results Program." This is basically a huge collection of medical records that keep track of the diagnosis, treatments, and outcomes of thousands of Follicular Lymphoma patients. This research looked at a particular group of patients -- those who were on Medicare (a U.S. government health insurance program for people at least 65 years old), and were diagnosed with Follicular Lymphoma between 2000 and 2017.

Two things are very important to keep in mind here.

First, these are patients on Medicare, so they are at least 65 years old. The median age for FL patients at diagnosis is somewhere in the 60s, so this group is basically the older half of the FL population. When you're looking at survival statistics, that's incredibly important. Survival statistics for younger patients will be higher -- generally, younger patients can handle more aggressive treatments, which usually result in longer times between treatments and better survival. And younger patients have a longer Overall Survival (that is, death by any cause) in general. So these statistics are for older FL patients, NOT for all FL patients.

Second, this research is describing patients who were diagnosed between 2000 and 2017. Now, 2017 is pretty recent, but even 6 years ago is a long time ago, in terms of treatments (think about the treatments that have been approved in the last 6 years -- they include bi-specifics and CAR-T, among others). So patients who were diagnosed 23 years ago had far, far fewer options than today. And those options were less targeted, so the long-term side effects of the patients in this study were likely much worse than we'd be dealing with today. That's going to have a big impact on survival statistics.

I'm telling you this (or reminding you about this) because I know from hard experience that looking at survival statistics can trigger some bad emotions. So I think it's important that you read statistics very carefully and not let the numbers overwhelm you.

Now, on to the research itself.

The researchers looked at the records of over 14,000 FL patients (a huge number). Because they were on Medicare, they were at least 65 years, with a median age of 76. Remember, in statistics, the median in the "middle number" of the group, so half of the patients in the study were between 65 and 76, and half were 76 or older. Again, the median is very important when looking at survival statistics. More on that below.

The researchers first looked at which treatments the patients received. For their first treatment, 60% of patients in the study received immunochemotherapy -- either Rituxan or Obinutuzumab plus chemotherapy (so something like R-CHOP or R-Bendamustine). Another 31% received just Rituxan or Obinituzumab, and 8.5% received chemo without the R or O. When it came to a second therapy (after the first one stopped working), only about 44% had immunochemotherapy. And about 42% had it for a third treatment.

Not surprisingly, there were NO patients who had CAR-T or an inhibitor for a first treatment. Fewer than 1% had one for a second treatment, and fewer than 2% had one for a third treatment. I say "not surprisingly" because this research goes back pretty far, looking at patients who were diagnosed before those newer treatments were available.

I will remind you again that age and year of diagnosis are so very important when reading these statistics. There just weren't the same options available 20 years ago. That's the main limitation of studies like this that look backwards.

Now, as far as survival goes, the researchers say that patients who received a first treatment had a median Overall Survival of 81.9 months. That is, they lived almost 7 years after their treatment. For patients who had a second treatment, the median OS was 49.6 months, or a little over 4 years. For patients who received a third treatment, the median OS was 35 months, or almost 3 years.

Looking at the age of patients, the median OS for patients diagnosed between 65 and 70 years old was 145.4 months, or about 12 years. For those 71 to 75 years old, the median OS was 110 months (about 9 years). For 76 to 80 years old, it was 81 months (almost 7 years). And for 81 and older, the median OS was 40.5 months, or about 3.5 years.

Here's where it's very important to pay close attention to how you read the statistics. 

First of all, remember what "median" means. It's the "middle number," so half of the people in the group will have a higher number for an Overall Survival and half will have a lower number.

Second, remember that these are statistics. They do not predict what will happen to any individual patient. The 65 year old patients in this study diagnosed with FL will, statistically, live for 12 years. But that means half will live less than 12 years, and half will live for more than that -- perhaps way more than that. Also, remember that OS doesn't measure death by cancer, but by ALL causes. So that group of 65 year olds will include someone who lived to be 100 years old AND someone who died from a hang-gliding accident the day after they turned 65. 

So this study is very interesting, but it as some real limitations. One of the biggest ones (and this is acknowledged by the researchers) is that these statistics don't include FL patients who were diagnosed before they turned 65. That's going to be about half of us, and I'm one of them. So for those of us in that group, don't pay attention to any of those survival statistics. They just don't apply to us.

As for those of you who were diagnosed after age 65, if you're worried about the survival statistics, remember what I said -- they don't say anything about your own individual situation.

But even looking at the median numbers, I think there is actually some very good news.

If we look at these age groups, and do some basic math, we get some interesting results. Accoridng to this study, an FL patient diagnosed at 70 has a median OS of 12 years. Statistically, they are likely to live until 82. A 75 year old patient has a median OS of 9 years, living statistically until 84. An 81 year old, statistically, lives until 84 as well.

So what is the life expectancy in the U.S. these days? About 76 years.

In other words, the median Overall Survival of the patients in this study is HIGHER than the life expectancy in the United States.

Now, life expectancy and survival statistics more complicated than what I am suggesting, and the complications aren't worth getting into. But to me, that just highlights even more the idea that it's just not worth worrying about statistics like these.

The most important lesson in all of this is that patients with Follicular Lymphoma can live long, happy lives, despite what statistics seem to say. It's better to not even pay attention to survival numbers. In the end, they don't really tell you much about your own life.

And let me be clear -- there's more to this study than I am talking about here. A lot more. Fr example, patients with comorbidities -- other serious health problems besides cancer -- have a lower Overall Survival.  So do patients who need multiple treatments. And so do patients with grade 3 disease. This study confirms those things, and those findings make sense. More aggressive cancers, and more health issues, cause more serious problems.

But when I read a study like this, that looks back at patients from 20+ years ago, I can't help but think about something I was told by Dr. C, the lymphoma specialist I saw when I was first diagnosed. He said, "Anything you read on the internet is already out of date."

In other words, there are many new treatments in development that haven't had their trial results published yet. And newer treatments like bi-specifics and CAR-Ts are extending Overall Survival so much that it can't even be measured yet -- so few patients in some studies have died that they can't come up with a median. And newer treatments are also giving us a better Quality of Life. I appreciate Dr. C's words every day.

And I think about something that another FL patients told me years ago. Their doctor said, "If we can keep a Follicular Lymphoma patient alive for 5 years, we can keep them alive for 50 years." Burn that one into your brain. We have options. We have hope -- and good reasons for that hope.

As always, thanks for reading.

I'm still unavailable for a few more days. I'll be back soon -- hopefully with some good news from ASCO.