Sunday, January 11, 2015

Numbers, Uncertainty, and Follicular Lymphoma

A couple of days ago, I posted a piece on Tony Iommi, lead guitarist for the band Black Sabbath, and current Follicular Lymphoma patient. I linked to a story about Iommi, in which he says, among other things, "I look at life differently now. I could be here another 10 years or just one year – I don’t know."

A few hours after I posted the piece, a reader named Rodrigo from Brazil posted a comment about the Iommi interview.  He said he felt sad reading that quote; he had some "old, terrible feelings" that came back.

So let me start by saying, Rodrigo, I'm sorry that something I wrote made you feel sad. I know it was Tony Iommi, and not me, who said that, but I linked to it. I did pull out the quote from Iommi about his nervously checking himself every day. I tried to put a positive spin on it, but it wasn't enough.

I don't ever want to make any of my readers sad. So again, Rodrigo, I apologize.

I've been mulling over Rodrigo's comment for a couple of days. And it brought some back "old, terrible feelings" of my own.

I think it's time to talk about numbers.


I've said it a few times here: any time I've gotten really upset about being a Follicular Lymphoma patient, any time I've had those "terrible feelings," it has been because of numbers. I've told the story of going to see a lymphoma specialist a few days after I was diagnosed, and grabbing a brochure about FL from a rack, and seeing the 5 year survival rates. It sent me into a two-week depression, where I cried every half hour or so. That was the first time.

And for a while, I'd see numbers like that and think the worst. The survival rate is 75%, I would read. What if I'm one of the 25%?

 I think maybe it's that kind of number (10 years!) that affected Rodrigo so much.

Numbers are scary because they seem so certain. There's something objective and sure and specific about a number that makes it definite and hard to argue against. I remember a relative reading the Wikipedia page on Follicular Lymphoma a few days after I was diagnosed, and writing to my wife, "That number worries me: 8-10 year median survival." Yeah -- it scared me, too. Thanks for bringing it up.

The number is scary because it is concrete. It gives us something to hold on to when so much else is uncertain. And not in a good way.

But here's the deal:

Numbers don't really mean much, of all kinds of reasons.

Take, for example, that 8-10 year median overall survival statistic from Wikipedia. For a long time, that was the survival statistic that people quoted. At this point, it's based on some very old data (as an anonymous commenter pointed out in responding to and supporting Rodrigo -- thank you for the comment, by the way). The 8-10 years was based on survival statistics from patients who were diagnosed before Rituxan even existed. Just that one treatment, Rituxan, has changed the way we think about survival in Follicular Lymphoma.

And then there's the "median" issue. If you know statistics, you know that "median" is the exact middle point of a group. In other words, half of the people in a group are below that number, and half are about. So half of FL patients will survive less than 10 years, but half will survive more than 10. It could be 11. Or 15. Or 50.

So let's look at that half that survives less than 10 years, because that sounds scary. But it shouldn't be.

First of, let's remember that for many patients, FL is diagnosed at age 65 and above. That's far more typical than the young age that Rodrigo and I were diagnosed at. Again, it could be 65, or 70, or 75. Let's consider a 75 year old man diagnosed with FL. 8-10 years isn't such a bad thing for him, is it? That puts him at roughly the life expectancy for a male in the United States. So, really, FL hasn't affected him, statistically, at all.

And let's consider what "survival" means. The 8-10 year statistic measures "Overall Survival." That means it measures death from anything -- cancer, sure, but also heart attacks, snake bites, getting hit by trains, and any other possible cause. It doesn't measure only death from Follicular Lymphoma or something related to it.

So 8-10 years sure as heck doesn't mean that someone diagnosed with FL will die in 8-10 years.

No go back and read all of that again, but substitute "18-20 years," because that's probably closer to the Overall Survival these days, given the treatments we have available. (Again, thank you Anonymous commenter.)

And now throw that away, because it doesn't even consider the treatments that are in the pipeline, or that haven't even been thought up yet that might be available in a few years, thanks to accelerated approvals.


It sounds like Rodrigo pulled himself out of his funk pretty quickly, and I'm happy for that.

And I totally understand why numbers can put us in a funk in the first place.

But I hope everyone remembers to take a step back when those old feelings start to creep up on them, and remember that numbers don't tell the whole story, and that as certain as they might seem, numbers really do a lousy job of telling the past, let alone telling the future.

Thanks again for reading.


Anonymous said...

That sounds so much better. Good to avoid negative patients like Tony. Stanford had a concrete median of 18.4 years and this was for patients diagnosed before Rituxin back in the late 80s and early 90s. 25 years ago. A quarter of a century ago. And half the patients survived beyond that and many are still here today. So no doubt the era after that when Rituxin was used as an initital treatment will be higher. 20 years is likely a conservative estimate. And there is no telling what the median will be for this era in 2015. Again, so many are elderly, it is hard for the median to go much higher than 25. As you say, half the patients are 65+. For someone 65 to live 25 year to 90 is way above average with or w/o FL. This is chronic. It is to the point where OS probably should not even be forecast. It is like getting 20 free pinball games. While playing, you are going to win some more by luck AND by getting better at it. After it is said and done you will play 30+ games or until your Dad calls you home for supper.

Anonymous said...

Well said Bob, I am sure many newly diagnosed patients who stumble upon your blog will have a moment of tears reading this. Not because they are sad, but because they will see perspective. Again, thanks for your good work.


Popplepot said...

Hi Bob let me as a fellow follicular 44 year old patient congratulate you for the courage to speak so openly about the dreadful days I.e the crying and sense of hopelessness , I am just crawling out of that stage and beginning to think about getting back on my feet. I think we are all at different stages yet it is important to discuss difficult perspectives and indeed it is possible Tony is at a difficult stage in his journey. With time the truth is as we know there is plenty to be hopeful about and credit to you for this excellent blog. Please do not feel upset about posting an article in which you have no power over the views expressed were Tonys not yours. Keep up the fantastic work and praise be to god for people like you . Thank you Bob best health and wishes Chris from Belfast.

Anonymous said...

Hi Bob...a loved one asked me send her links about follicular lymphoma so that she can understand what I was diagnosed with. I sent her the links with a very long email to be careful about reading the numbers and that very long email was pretty much what you had provided in your blog above. Thanks for sharing that information with everyone. The internet can be a very scary place when you don't understand the context/perspective in which the information is provided and you have provided that context and perspective in your blog above. It will help a lot of people! Thank you for your efforts - it is truly appreciated and is a guiding light in what can be very uncertain times for people.

Lymphomaniac said...

Thank you, all four of you, for your comments. I like the pinball comparison a lot. We do have a lot of free games ahead of us.

And Chris from Belfast -- you are right, we are all at different stages, and we are all different people. Some of us are just more naturally pessimistic, and others more optimistic. For me, it all got easier with time. And it helps to avoid the negative things, whether they are numbers, or people, or anything else. I'm glad to hear you are crawling out of that stage. Let us know if there is some way we can help.


Rodrigo Carvalho said...

Dear Bob.
After reading your excellent review, in your recent post, I decided to make a brief account of my thoughts based on what Toni Iommi said.
It took me some time to write this review because, as I said before, my English is not the best and I have to translate it from Portuguese to English and then rewrite in a way that makes sense to you.

First, I want to tell you, Bob, that I never joined your blog and leaves it sad! Never!
I had read Toni interview before reading your post, in another source (
I only used your blog to vent about what Toni said in the interview. You have no reason to apologize for what Toni said. Therefore, do not think that I was sad because I have met the interview content through your blog.
You, Bob (along with Rituxan and new drugs), is the great revolution in overcoming the LF!
Oh if I only knew your blog at the time of my diagnosis!
Let me tell you about my story.

I live in Brasilia, capital of Brazil, and was diagnosed at age 38 with LF. In fact, in March 2012, after having a medical check-up routine, I found a lymphoma a week before going on holiday (for Key West, FL, by the way).
I remember that during the waiting period of the biopsy, I went to the dr. Google (this lousy doctor), and "studied hard" about the disease and I have chosen the FL as lymphoma “not-to have” (my choice was due to the numbers that you, Bob, spoke earlier).

After two weeks of deep depressed, I went to the doctor (Lymphoma Rock Star, as you always call!), in São Paulo, and I realized that things were not as bad as they seem…
All of us, FL patients, have similar stories, the same pain, the identical bitter taste in the mouth and butterflies in our stomachs. Our sleepless nights were longer and aching than others.
These facts make us (readers and you, Bob) accomplices. The success and happiness of all transmitted to the others, and for those reasons, I see each other like true friends. Brothers bound by the overcome and hope.
I can say without fear of being corny, the LF changed my life for the better. It was through the disease that I radically changed my view of life, becoming a happier person, less anxious and more intense in my feelings. After LF, and because of it, I decided to have a child (now a 10 months boy named Arthur!!).
Through the LF I have met wonderful people like you, Bob, and all the readers. I also forgive silly problems that previously had so much importance in my life.
You, Bob, talk a lot about Lymphoma Rock Star but I want you to know that you´re one. There are no doctors who give us the good news about treatments and medicines, nor our family and friends who have also suffered and, today, celebrating the evolution of medicine with us. As much they love us, I repeat, none of them deeply know the pain and anguish that we have spent.
You, Bob, are the more important Lymphoma Rock Star!!
Finally, my mother, who discovered your blog at the time I fled from google, sends a big hug. She is a big fan of you and introduced your blog to me. She talks about you like she knew you for years!!!. Well, she does!
You, Bob, along with Rituxan and new drugs, is the great revolution in overcoming the LF!
Your Brazilian and profound admirer friend


Ps: sorry about my english.

Lymphomaniac said...

Thanks for telling your story, and for the nice compliments. And please give your mother a hug for me. Too bad I can't do it in person.
My wife and I sometimes read comments from everyone, and wish that we could meet you all. Then you would really see some hugging. Some day I'm going to throw a big party and invite all of you readers, just to see who shows up. That would fun. Maybe for my 10th diagnosiversary....

Rodrigo Carvalho said...

Great idea! I can make "caipirinha", a typical drink from