Not yet a cancer survivor

What does the expression “cancer survivor” mean to you? Different people mean different things when they use the term, and I’m still pondering which if any of them describes me.

The broadest definition, from the National Cancer Institute: “The term cancer survivor includes anyone who has been diagnosed with cancer, from the time of diagnosis through the rest of his or her life.”

I reject that out of hand. It’s so ridiculously broad as to be meaningless. A diagnosis doesn’t make you a survivor; treatment hasn’t even begun. And no one can say for certain that you will survive. I suppose the thought might be that you had cancer for some time before it was diagnosed, so you’ve survived from the time you contracted the disease to the time it was discovered. But if you’ve just been diagnosed, you still have cancer. How can you be said to have survived it?

Before the founding of NCCS, the common definition of “cancer survivor” was clinical: “someone who had been free of any sign of the disease for five years.”

The National Coalition for Cancer Survivorship explains its thinking: “In 1986, the founders of NCCS saw a need for language that truly told the story of life after a cancer diagnosis. At the time, there were a growing number of people living beyond their cancer diagnosis and treatment. Many of them were experiencing an array of health issues related to their treatment, as well as late and long-term effects. They also faced psychological, financial, emotional, spiritual, and social challenges. The phrase ‘cancer survivorship’ was created to describe this broad experience on the cancer continuum — living with, through, and beyond a cancer diagnosis.”

I’m well aware of the challenges and the continuum of diagnosis, treatment, and beyond. But I don’t like the term “cancer survivorship.” It sounds more like a label for those who lived on after the cancer patient died. When I first saw it, that’s what I assumed it meant.

I appreciate the effort to find common language, to be inclusive and supportive of everyone touched in any way by cancer. But I’ve yet to see a good descriptive term.

Before the founding of NCCS, the common definition of “cancer survivor” was clinical: “someone who had been free of any sign of the disease for five years.” Maybe I’m just old fashioned and out of touch, or maybe I’ve been too close to the medical community for too long. But the clinical definition strikes me as the most concise and accurate. My cancer was diagnosed, the tumor was removed, the affected areas were poisoned with chemo and radiation. The latest scans showed no remaining cancer. But I don’t yet think of myself as a cancer survivor. There could still be individual undetectable cancer cells waiting to emerge in the future. And I’ll always worry about positive HER2 cells that weren’t blasted with a year of Herceptin infusions. Obviously I’ve survived the initial diagnosis and treatments, but there’s no way anyone can say for sure that the cancer is gone forever and that I am without question a “cancer survivor.”

Perhaps coming closest to my current thinking is Mary McCabe, head of a new cancer survivorship program at Memorial Sloan-Kettering Cancer Center, New York, who says her program defines survivor as a “particular period in a cancer patient’s life, which is post treatment, separate from diagnosis and treatment and from end-of-life care.” That sounds about right. You’re a survivor between the time you’ve finished all your treatment and the time you begin end-of-life care.

Five years from now, when I’ve finished my daily regimen of Aromasin, if there is still no sign of cancer, I might feel like a cancer survivor. I might even do so before then. But for now I think of myself only as a cancer treatment survivor. And even that is premature since some treatment is ongoing and some side effects may linger or not even appear for months or years.

It’s an interesting subject to contemplate while I sit around assessing my current status. I don’t feel any need for a label and find it a bit curious that so many people have worked so hard to create them. I suppose that’s just what bureaucracies, organizations, and institutions do. Define themselves and their constituencies. Create and then serve an audience. And if that somehow helps someone get through their experience with cancer, it’s a good thing.

But just as I don’t buy the highly commercial “pinking of America” for breast cancer awareness, I don’t buy the “cancer survivor” thing.

At least not yet.

 

_____________
See also:
What’s in a Name: Who Is a Cancer Survivor? (Journal of the National Cancer Institute)

 

 

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9 thoughts on “Not yet a cancer survivor

  1. disperser Friday, January 22, 2016 / 2:49 pm MDT

    The five years mark is the metric I was aware of. Didn’t know they had modified it.

    • PiedType Friday, January 22, 2016 / 3:45 pm MDT

      Yep, five years is what I’ve always heard. And it’s a nice solid mark, not subject to wishy washy interpretation.

  2. Jim Wheeler Friday, January 22, 2016 / 3:28 pm MDT

    Labels are problematic and “cancer survivor” is a good example of that. Labeling is a subset of generalizing, isn’t it?

    I suppose I am a cancer survivor. I’ve been diagnosed and treated (radiation) for prostate cancer and here I am, still alive after 8 years. I’ve also had minor surgeries for basal-cell and squamous-cell carcinomas. But none of that compares to the scare you’ve had.

    Cancer, I’ve read, is a multitude of diseases all of which have in common uncontrolled cell division. Some are slow and some kill quickly. Some are readily detectable and hardly not detectable until it’s too late. In any case, everybody will die of something and I suspect that the rise of cancer is likely linked to increased longevity. Cells have a finite capacity for division and the immune system weakens over time.

    The five-year metric is useful for statistical analysis, kind of like a standard deviation. But one needs to understand that such numbers are the result of many variables like ease of detection and treatment as well as lifestyle and genetics.

    But labels? They are untrustworthy. Theist, atheist, agnostic, devout, veteran, non-veteran, hero, coward, rich, poor, middle-class. They’re all pretty squishy.

    • PiedType Friday, January 22, 2016 / 3:55 pm MDT

      Eight years makes you a survivor in my book. I like to think I’ll still be around 8 years hence. That’s the plan, anyway. I don’t think my experience has been any scarier than yours, but I think we can agree cancer is just scary, period. Your understanding of it is exactly like mine — which is why I tend to chuckle when anyone talks about finding “a cure for cancer.” I don’t believe for a second there’s going to be a single cure for cancer’s many, many forms.

      Hope you’re enjoying an easy, quick recovery from your latest surgery.

  3. philosophermouseofthehedge Friday, January 22, 2016 / 3:29 pm MDT

    I like the way you inserted “treatment” between cancer and survivor. Treatments bring on their own issues.
    After 5 years you almost feel its safe to breath again..but the shadow is always there.
    For those who refused to tell people they had /were being treated for cancer ( and with some types it’s not real apparent if you aren’t looking) because people look at you differently, those people certainly aren’t going to call themselves survivors either. More comfortable saying back to normal – more of less normal anyway.
    The during 10 year after treatment thoughts and journey will also be a worthy topic.
    Cheers for you . Welcome back to normal-ish from that slight detour.

    • PiedType Friday, January 22, 2016 / 4:06 pm MDT

      Yep, I’m a treatment survivor. Well, working on it, anyway. Getting the tumor cut out was the easy part. Getting through the chemo and the radiation, that was something else again.

      I’ve begun to realize in the last few weeks that I have become normal-ish again and it’s kinda weird. Not quite sure what to do with it. Not that I ever do much of anything in mid-January.

      • philosophermouseofthehedge Friday, January 22, 2016 / 4:55 pm MDT

        See. Normal (which is probably overrated as no one really knows what it is)
        Any new gaming? Wish I had the patience and skill for those. Supposed to be good brain training.

  4. zenzalei Saturday, January 23, 2016 / 1:08 am MDT

    All of this resonates with me. My guess is I would probably feel much as you do.

"You don’t have to say everything to say something." ~Beth Moore

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