What Is Successful Survivorship?

March 17, 2010

Dear blog-reader,

This is going to be a slightly different blog. Instead of an update on recent research or thoughts on how to deal with a specific issue in survivorship, I am going to beg you, for just a few moments, to think about survivorship. If you are interested in survivorship, you probably come to survivorship as either (1) a survivor or (2) a loved one of a survivor or (3) some sort of health care professional. First, let me say, I realize that the common use of the term “cancer survivor” is to refer to those individuals whom have been diagnosed with cancer. I implore you; let us be uncommon. Let us acknowledge that the loved ones of those who have received a diagnosis are also survivors. So if we acknowledge that, our estimated number of cancer survivors in the US jumps from 12 million survivors to who-knows-how-many. My guess is that we could conservatively estimate that each diagnosis strongly affects the diagnosed person and maybe 2 other people on average. So now we have around 40 million cancer survivors living in the U.S. That number is growing, and let’s be honest, I estimated conservatively, so we can admit the

Now let’s look at our population of survivors. It is very difficult to characterize survivors; there is no such thing as a common survivor profile or a typical survivor. Sure, we can divide survivors into people who have received a diagnosis and not, by type of cancer, by stage of cancer, by age at diagnosis, by family situation, by economic background, by race, by access to care, by physical condition before diagnosis, by types and combinations of treatments, etc etc etc. I’m hoping you get my point here. The survivor population is not only huge but also diverse. In fact, this is the point I want us all to consider – the diversity in survivorship – and what it means for survivors.

To explain what I mean, let me remind you a bit about myself. I’m not a survivor; I’m not even a survivor by my expanded definition. I do work in health care, and I am dedicated to helping survivors. My friends will tell you this: I am always thinking. I am always trying to come up with a new idea to help survivors, and for years I have been chasing a silver bullet, yet for years, I’ve known the silver bullet doesn’t exist. It doesn’t exist because the survivor community is so diverse, and I know that, but it doesn’t make me want it less. I have to remind myself to separate my deeply personal drive from my professional work. What do I mean? Well, simply, working towards anything like a silver bullet is futile. The members of the survivor population are too different from one another, and the short-term and long-term poor outcomes I am working to prevent are too varied and dependent on too many intricate factors. Frankly, survivors deserve more of me. And if you are a survivor searching for your own silver bullet, you deserve more of yourself!

So why am I telling you this? I’m hoping you will agree. If you are a survivor, I am hoping you will realize how unique and specialized your needs are. I’m hoping you will stop searching for the solution that seemed to work for everybody else and start working on the solutions (notice the plurality) that will work for you. I think we all need to stop looking for one solution. We need to stop trying to put survivorship in a box. I know it is easier to understand and handle things when they come in a neat and tidy package. Survivorship isn’t neat and tidy. Survivorship is tangled, like your iPod earphones, and it is immensely complicated.

I was speaking to a friend of mine this weekend. She is only familiar with survivorship through her friendship with me, but she was kindly listening to me puzzle myself about how to predict a successful survivorship experience. She asked me a question that is still ringing in my ears. She didn’t mean it to be poignant; in fact, it was an innocent question; she was simply trying to understand my goals. She asked, “Wait, just so I understand, what is successful survivorship?” I fumbled through about 50 or 60 words until I arrived at, “It is different for each and every survivor.”

She responded, in an absolute and frank voice, “Well then it seems like each survivor needs his or her own plan. It doesn’t sound like one single thing will work for all survivors.” I agree! And I think it starts with defining successful survivorship. What does successful survivorship mean to you?