ASH: Young Folks Like Me

Another update from ASH. It's one that I've been waiting for for almost 4 years.

The title is, "The Importance of Age in Prognosis of Follicular Lymphoma: Clinical Features and Life Expectancy of Patients Younger Than 40 Years." It's the first thing I've ever seen that looks specifically at younger Follicular NHL patients, and separates them out from statistics for the overall fNHL population. I think what they have to say is extremely encouraging.

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In general, I am not a fan of statistics about cancer, especially my cancer.  The times I have been most depressed as a cancer patient have come because I have looked at cancer statistics that have given me bad news. That's wrong -- I'm not a statistic, and no other cancer patient is either. But when you live with so much uncertainty, you can't help but turn to the certainty that seems to come from statistics. It's just a bad place to go, though.

In the months after I was diagnosed, everything I read about fNHL said that the median Overall Survival was 8-10 years. For someone diagnosed at 40, this is not good to read. It dragged me down for months after I was diagnosed, until someone in the support group broke it down for me:

First, the 8-10 year statistic is outdated. It's more like 15 years; the 10 year statistic is from a study that took place before Rituxan existed. Second, Overall Survival (OS) measured deaths by any cause, not from cancer. So car accidents and heart attacks fit in there, too. Third, "median survival" means half of the people lived less than 10 years, but half lived more than 10 years: anywhere from 10 years to 40, 50, 60 years, and maybe beyond. Finally and most importantly, fNHL is typically diagnosed in people in their 60's. So a 15 year survival rate for a 65 year old man isn't that far off from the life expectancy for a non-cancer patient at 65 (which is about 17 years).

All of that put my mind at ease.


Still, I wanted some information about younger patients. I can accept that most fNHL patients are over 60. But I had no sense of how fNHL affected young folks like me.

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And now I do. This study looked at just over 1000 European fNHL patients, tracking them over 25 years. About 15% of them (153) were 40 or younger. (They broke the rest into two categories: ages 41-59, and 60 over.)

They found some pretty interesting differences between younger and older patients. Compared to older patients, younger patients are more likely to have bone marrow involvement (not an issue for me), more likely to have more than 4 node regions affected (much like me), less likely to watch and wait (unlike me), and less likley to receive Rituxan (not like me).

Buit it's survival statistics that were what really caught my eye.

The overall survival for patients over 60 was 6 years.
For those between 41 and 59, it was 16 years.
Anf for those 40 and younger, a whopping 24 years.

Now think about that: someone diagnosed at 40 sees the statistics on Wikipedia and thinks, I have 8 to 10 years. Now? 24 years -- I'll be an old man if that holds up.

That's huge. Not because the statistics mean anything for an individual. No one knows how long they'll have. But psychologically, how much easier is to fight that battle, knowing that the odds of growing old are that much better?

Major, major implications.

One more thing: the study found that, regardless of age, the incidence for transformation to a more aggressive type of lymphoma (every fNHLer's worst nightmare) was just 18%. I've seen it put at anywhere from 30% to 50% of patients transforming at some point. This would seem to put it at the lower end.

So, yeah, I know, I'm looking at statistics only when they give me good news, and I ignore them when they give bad news. And a study of 153 patients 40 and under is a pretty tiny number, especially when an even smaller number was probably right at 40, like me. But that's OK. In the war against the emotions, which for a Follicular patient is just as big a war as the physical one, this is an atom bomb.

Dropped in our favor.