What Survival Statistics Mean

I used to write a column for Lymphoma News Today a few years ago. You can still find it there, under "columns." It's the one with "hope" in the title.

And even though I haven't written for them for a while, people still read them and I still get comments on them. I know this because the system at that website for dealing with comments is to have author approval. So whenever someone writes a comment on my column, I get an email asking me if I want to approve the comment (otherwise, it won't get seen by anyone), and if I want to respond. It's a good way to make sure there isn't any spam or other useless comments on the site. And it means that even though I haven't written for them in more than two years, I still have access to the site.

Without question, the column that keeps getting the most readers, and the most comments, is the one called "We Need to Talk about Survival Statistics." Someone left a comment for me this weekend, which made me think about it some more. Two things I noticed when I looked at it again -- it was published almost three years ago (on October 5, 2018), and it has 71 reviews, with 4.7 out of 5 stars. (My column, "I Find Hope in Cancer-Themed Humor" has 0 stars. It's dangerous for a writer to read reviews. I'm not even going to link to that one. Find it on your own.)

I'm really pleased with the column because I think it gives what is probably the most important message I try to get out -- learning as much about your cancer as possible is a way to become empowered. I'm not going to tell anyone how to be a cancer patient. We all need to deal with this in the way that makes most sense to us, and I know people (especially some with Follicular Lymphoma) who would rather just not think about it all. 

And that's fine. But I also know that the thoughts are going to creep in anyway, whether we want them to or not, and I think it's better to have good answers to nagging questions.

So when we ask things like "How much time do I have?" or "What does it mean if I read that the survival rate is 8 to 10 years?" I know where my mind went when I was diagnosed and I read that. I think it's important for people to have an answer.

I think it's worth reading the column again. For those of you who are new to this, it will help explain what "Overall Survival Rate" means. And for those of you have been dealing with FL for a while, it's worth being reminded about.

And for what it's worth, the survival rate for FL is close to 20 years -- double what it was when I was first diagnosed in 2008. That's good news for everyone, but it also doesn't mean that we're not all individuals, and statistics tell a story about large groups, not single people. 

I like to remind everyone about that every few years. So this is your reminder. Enjoy the column.