We Need to Talk About Survival Statistics

We Need to Talk About Survival Statistics

“How much time do I have?”

When we’re diagnosed, that’s one of the first questions we ask. We want a number.

But in my 10-plus years as a follicular lymphoma (FL) survivor, the things that have made me sad have always involved numbers. It seems as if turning something into a number makes it more real, more concrete, and more definite.

Survival rates are like that.

When I was diagnosed, I read that the survival rate for follicular lymphoma was eight to 10 years. As a 40-year-old man with three young kids, that was not a happy thing to read.

My reaction was the same as many others’ after diagnosis: “That’s me. I’ll be dead in 10 years.”

But that’s not at all what it means.

I think it’s worth taking a closer look at survival statistics. If they take away hope, then let’s try to bring a little hope back.

First, you should know that survival statistics measure median overall survival.

Now, look carefully at the words.

“Median” is a term from statistics. It means the exact middle.

Picture this: Take 999 cancer patients and line them up in order of how long they survived. The median for that group would be patient number 500.

If the median (number 500) is 10 years, that means half the people on that list will survive less than 10 years.

But it also means half will live longer than 10 years. And there’s no limit to how long that could go. It could be 10 years and a day. Or it could be 50 years.

Now, let’s look at “overall survival.” That term measures how long someone has lived. But that “overall” is important. It doesn’t measure how many people died from cancer, but how many people died. That could have been from cancer, or from a heart attack, or from being hit by a bus.

When you start to look carefully at those words, that number seems less definite.

Every cancer is different, but I’ll use follicular lymphoma as an example.

That eight-to-10-year figure that I read in 2008 has increased. It’s actually closer to 20 years now, according to this article reporting on research from Stanford University.

But let’s be conservative and say the median overall survival for follicular lymphoma is 15 years. In general, people are more likely to be diagnosed with FL when they are in their 60s — let’s say 65. So, if someone is diagnosed at 65 with FL and the median overall survival is 15 years, then statistically, half will live past 80. Want to guess what the life expectancy for a 65-year-old male in the U.S. is? It’s 80.

There – I just added 30 years to my life.

Seem too good to be true?

OK – I’ll give you that. There’s no guarantee that I’ll live that long. But statistics about a large group don’t tell me anything about the individuals in that group.

So, it works the other way, too. I shouldn’t look at a statistic and think it’s definitely bad news, either.

My advice? Ignore the numbers, especially if they make you sad.

Focus instead on living each day.

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Note: Lymphoma News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lymphoma News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lymphoma.

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Bob McEachern is a Follicular Lymphoma patient and advocate. He was diagnosed with Follicular Lymphoma, a slow-growing but incurable blood cancer, in 2008. Since then, he has used his blog, Lympho Bob, to bring information and hope to other FL patients. A writing teacher and married father of three, he enjoys gardening, music, and travel.

2 comments

  1. Maris Stella says:

    When I was first diagnosed with a rare form of non-Hodgkins Lymphoma, I was pretty upset about dying after living a healthy lifestyle. One day I went to my priest, telling him how mad I was at God, my husband, at the world. My priest said the last person he knew with this rare form of lymphoma lived 18 yrs. after diagnosis. I told him 18 yrs. wasn’t enough! He asked me (I was 64 yrs. old) how many more years do you want? I looked at him & said I want 20 yrs. We both looked at each other & laughed.

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