Tuesday, June 24, 2014

afraid of melanoma stats

HELLO! Show of hands for all who can identify, or who could identify at one time...maybe when your melanoma diagnosis was still fairly new.

That term led someone to this blog and I hope they found what they were looking for. This topic needs to be addressed for those who have received this diagnosis. Yes, the stat for a melanoma diagnosis is on the rise, worldwide. Yes, the stat for dying from melanoma is, likewise, rising. This is one of the few cancers that can say that. This post isn't about the stats as they apply to a possible melanoma diagnosis. This post is for those who have received that diagnosis and a dose of stats to go along with it...or who consult the Internet Statistician (which is a really, really baaaaaad idea!)

We all get them. Some of us get more than others, depending on the doctor. When we are diagnosed and given our stage, we are told our chances of recurrence. Some people are told their chances of dying. No matter what course of treatment we decide on, we may be given stats for it working or not. Those stats can be thrown out the window if and when our stage changes...which it can only go up from where it began. We can look online and find stats for our ethnicity, gender, age, country, and we can zero in from there and get stats for our state or region. Stats for our hair color and food preferences. Stats for how many sunburns we've had or if we've used a tanning bed. You name it and there are stats for it as it's related to melanoma. We can get overwhelmed and drown in a sea of figures. We can get downright scared to death!

First: stats change and many of the ones you'll find are outdated. Particularly those surrounding your chance of recurrence and the chances of dying, at your stage, in a given time-frame. Those are going down, somewhat. Many of the available stats came out before the treatments we have now...some FDA approved and others that are in trial but showing tremendous promise for many. That all illusive cure, or cures as it will probably take more than one to "cure" all melahomies since melanoma is such an individualistic cancer, WILL happen and we're getting closer all the time.

Second: yes, all the stats you will see reflect real people with real stories. BUT, remember, there are two sides to every stat! For some reason, we are usually given the stat that reflects our chances of recurrence or of dying...and not the stat that reflects our chances of NOT having a recurrence at the stage we currently are, or our chances of NOT dying within a particular time-frame.

For example. When I was diagnosed stage 3b in July 2008, I was given this stat by my melanoma specialist surgical oncologist at Duke: I had a 30-35% chance that melanoma would return in either my brain or lungs within ten years. Note: my melanoma mole was removed from my upper left arm, hence the brain or lungs as the places a recurrence was likely to occur.

A THIRTY to THIRTY-FIVE percent chance?! Oh my! Did I quake in my shoes? Yes, indeed I did! Did my heart know fear and my ears burn at those words? Yes, indeed that happened! Did I look for melanoma behind every rock and mole? Oh yeah.

But you know what? I dawned on me that if I had a 30-35 % chance of recurrence within 10 years, then that ALSO meant that I had a 65-70% chance that it would NOT recur within ten years! Why, oh why, had the doctor not told me THAT?! Real people with real stories make up THAT stat, too! MOST people at stage 3b do well with their melanoma and when we really take THAT kind of look at the stats...most people of ANY stage do well with their melanoma. Even people with stage 4 melanoma are doing better and better all the time...many are. And I am not diminishing the battle of those who are in the fight of their lives for their lives...or of those who are entering into Hospice having exhausted all the options we now have and nothing worked for them. There are people who were diagnosed 3b when I was, who did not do well with their melanoma, and have run their race through Heaven's Gates of Praise. We are still in a place, in melaland, where not everything works for everybody, unfortunately. Remember, real people make up both sides of all stats. We're praying and working to change those numbers so the number of those who do well, at any stage, continues to go up until everyone does well and there are cures.

Have a healthy regard for the stats. Know your stats. But know both sides of your stat and have HOPE!

I'm almost six years now into that ten year stat I was given in 2008. I haven't had any recurrence and since I've passed that five year milestone, I don't live in constant fear and dread anymore. Oh, I know the score. I know it CAN happen. But that doesn't mean that it WILL happen.

So. What am I doing? I'm living my life the way I want to. Quietly and simply. I enjoy my family and adore the two cutest grandchildren God has put on the planet and He put them in my life! I'm active in my church...better be since I'm the pastor! I live the small town life in a truly small town and wouldn't have it any other way. I'm active in the online melanoma community and do my best to give hope and comfort, both as needed. But I'll also give a swift kick in the cyberpants when it's warranted. I blog. I participate in an Aim at Melanoma walk each year. In the past, I've gone to Charlotte, NC. This year I went to Chesapeake, VA.

Stats are a part of life. They are out there in abundance whether you have melanoma or not. Be smart when you encounter them. They are numbers. They are not YOU. You reside inside every stat, somewhere, that's true enough. I'm somewhere in stats about cheesecake and coffee. Tofu and cauliflower (neither of which I like or eat, but there are stats about them, so I'm on one side or the other of each stat that exists). You get my point. Stats are part of our culture and coming up with them keeps people employed.

They represent real people with real stories. They're there. Acknowledge them. Know the ones that you need to know. And lay them aside.

Here's a stat that holds for everyone: You get ONE life. You get ONE death and you WILL die at some point. All of that is 100% accurate. Don't let outdated stats prevent you from living your God-given life. Be smart, be proactive. Take care of yourself. If a recurrence happens, it happens and NOT because of a statistic! Deal with it when and if it happens. I haven't lived six years waiting for the other shoe to drop. Chances are in my favor that it won't happen.

Will my stat change if I make another four years without a recurrence? Sure it will. And I'll live being on one side or the other and I'll still know the score. I'm far from ignorant about melanoma.

But no number is going to rule my life. It's just not. I refuse to give a number that kind of power. I choose to give THAT power to God.

charis