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.

***

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.

6 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.

  2. robbie Palm says:

    Back in 1999 at the age of 40, I was also being tested for lymphoma ( I have never had any B symptoms to this day) and finally, after months of tests in 2000, they found same cancer you have + I had 3 kids all at home. I felt the same. In 2002 after my tx with CVP + Rituxin they told me I would need tx every 2 yrs and mean survival would be 5-7yrs. I had 3 kids at home and was pretty depressed. Well, you are right not to look at stats. I got my Rituxin ( approved in 98) plus CVP and I have never needed any more tx since 2002. I got partial remission in 2002. I have not received any other chemo or rituxin since 2002. IN fact, they quit giving me CT’s in 2011 due to my bloodwork doing well. This year they decided after 7 yrs, I needed a CT. I have never had any B symptoms and found my lymphoma during a routine procedure back in 1999.
    My CT came back with lymphoma in the same area but no progression. Just there doing nothing. Yep, you are so right. You can’t look at the stats. Each person is an individual. It will be 19 yrs next year, I was dx. I try to always tell people to not panic and think that they will e the one that survives the longest!
    I’ve lived long enough to see Rituxin make 20 yrs more the norm than 10!!!!

  3. Annon says:

    Stats apply to groups with what they call a confidence internal. Usually that is one of 95% meaning 95% will fall within the range given, 5% will not. 2.5% will “do worse” and 2.5% will do better. The problem is that we don’t know how that group statistic will apply to an individual. You don’t know where on that range you will land or if you will fall outside of that range.

    I do think that people need to think about the reality of this disease though and not just show it aside. You do need to make plans for a very real future where you probably will die before you otherwise would have (unless they finally find a cure for everyone rather than the occasional stage 1 and perhaps the occasional stem cell transplant – with some one else’s cells). In my family people routinely live into their 90’s and 100’s – on both sides of the family. Twenty more years won’t get me close to that, even if I was – to use the example – 65. The emotional trauma of dealing with this means we have to come to terms with the fact that we likely will die before we would have and we have to learn with this without having that wrecking our life.

    It drives me nuts when people say – well you could be hit by a car tomorrow – as if that is the same as knowing that your lifespan is, in reality, shortened by a cancer with no cure. Well duh we could, but usually the person who spouts that crap doesn’t have a cancer that will kill them if they live long enough. We know, with 99.999% certainty that if we don’t get hit by a car, die of a heart attack, die of something else or due to old age, etc. we will die of this. It’s a ticking time bomb.

    Knowing the reality of the median, average, range of overall survival, I find is helpful (upsetting at times, but helpful). It helps me understand the reality of this disease and what it well could mean for my future. I need to plan for that – best case, worst case, likely case (as do we all but it is different if you have an incurable cancer hanging over your head because the odds are weighted in favor of dying “early”).

    I have a special needs young adult. Knowing I will likely not live to 95 or103 (I have had this since 1997 so 21 years so far), I need to make a different kind of plan for her than if I likely would have the “usual and normal lifespan” for nearly all of my grandparents, their siblings, aunts and uncles, parents, etc. I will NOT likely be alive when she is 45 or 50. Were I to live the usual lifespan in my extended family I would be (and for a lot longer).

    Also testimonials don’t give useful information. It just puts us somewhere on the survival curve for this disease. I didn’t relapse at or before 2 years of treatment nor have I transformed so I am not in the higher odds of shorter survival and thus not in the likely “early death” group. I have lived longer than the median, but that does not mean you, personally will, just that some of us will. The “odds” are less than 50% you will live as long as I have (only because I am well past the median). Of course you won’t know that until “after the fact”. That is the problem with statistics of groups when you apply them to individuals. And individual doesn’t know where on the curve they are. It is encouraging in one sense to know of people who have “beaten the odds”, but it doesn’t tell us anything about ourselves (unfortunately).

    And so we need to learn how to live with the uncertainty, plan for a future that is likely to be shorter than we otherwise would, and not let that fact take over our lives. Much harder at first when people tend to grasp at any life raft that floats by and panics when one doesn’t, when it is night time and we are treading water rather than in that metaphorical life raft… Easier much of the time later on as you learn to adjust to this and not let it rule your life. Of course relapses, having someone you know die of this, etc. triggers those fears again…

    I think the key is anchoring your expectations in reality – which means knowing and understanding the stats – and then make appropriate “what if” plans. Then figuring out how to live without having those stats rule your life in a way that, in effect, puts you in a mental sinking raft. Not easy at first but most people find it gets better over time. It is kind of like grief in that at first the period of intense grief are long and close together. Over time the periods of time become shorter and further apart, but when you still experience that grief, as you will occasionally, it is nearly as intense. You can live well between those periods of grief. That is what I think we should strive for.

  4. I agree that we need to be realistic. It’s hard to keep that balance. On the one hand, we can’t read too much into statistics, to the point where we become overwhelmed with the negative. On the other hand, we can’t assume that that everything is going to be just fine. When I was first diagnosed, I went to a specialist for a second opinion, and he told me straight out that the disease would shorten my life span. It triggered the worst depression of my life. But he also told me something else: anything you read on the internet is already out of date. So while a statistic might tell me what median survival statistics are today (or, more realistically, what they were 3 or 5 years ago when the study was conducted), it doesn’t tell me anything about the future. Median survival was 8-10 years when I was diagnosed; it’s closer to 20 now. That’s because we have better treatments than we did back then. And 10 years from now, survival might be even better.
    I think we agree that none of us can ever predict the future. We also agree that we need to be prepared for whatever comes with an unpredictable disease. We all need to decide how we live our lives day to day. I choose hope. I don’t think I could get out of bed if I didn’t.
    21 years is inspirational. I wish you at the very least another 21.
    Bob

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