Cancer Words

I’ve written quite a bit about the power of words. Words are potent, sometimes in magical. Words do not only express our lived experience, they also give it shape, name it, describe it. One aspect of philosophy of language deals with the interaction and mutual influence of words and thought. Fields as diverse as linguistics, clinical psychology and economics address this idea in different ways.

But everyone agrees that words are important, powerful. That is why, like many other people, I care about what labels I attribute to myself and others. I have written quite a bit about that. You might want to look at The Problem with Surviving and Have I Survived Yet, for example.

So it was very interesting to find a link to “After Cancer: Debate About Terminology Beyond Treatment” in today’s Medscape Nurses newsletter. This is part of a discussion that began with “Cancer Survivorship: Why Labels Matter” (J Clin Oncol2013;31:409-411) by Canadian social scientists Kirsten Bell and Svetlana Ristovski-Slijepcevic.

Bell and Ristovski-Slijepcevic clearly attribute importance to the terms we use. The Medscape article quotes them: “Words not only describe, but construct, the phenomena under question,” they wrote, explaining that the term “someone who has had cancer” may ignore “the ongoing presence of cancer in the lives of many” who have had the disease.”

The discussion is continued by Paolo Tralongo and his colleagues, who suggest a range of terms, but attribute the importance of terminology to the way a term helps or hinders a patient in coping with the disease. They suggest a range of terms–patients with…

  • acute cancer (for people in treatment)
  • cured cancer (for people “who have long been disease-free and have reached a time when their mortality risk does not exceed that of their age and gender peers”)
  • chronic cancer (for people with advanced cancer that alternates remissions and relapses)
  • chronic cancer, active phase

I strongly encourage interested people to follow the link above to the Medscape article. There you will also find links to the original articles and letters in the Journal of Clinical Oncology. 

The word “survivor” annoys me for a number of reasons that I’ve described elsewhere. The main reason it annoys me at the moment is that I haven’t survived it yet; I still have cancer in my body. The term “chronic cancer” intrigues me. My stage IV disease is advanced, but not yet terminal (i.e. I am not expected to die in the next several weeks or months). Perhaps “chronic” is the best way to refer to it.

“Chronic cancer” has the advantage of being clear, specific and easily understood. It is very low on drama, even less dramatic than “living with cancer”, which has been my preferred term to date. I’m not sure yet, but I think I like it.

(As terminology. The disease itself is one of the worst things that has ever happened to me.)

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22 Responses

  1. I’ve never understood when or how to use the term “survivor”. I’ve been under the impression that “Terminal” means predictive, incurable. I refer to my state as stage IV, terminal… so that I don’t have to keep explaining that I will not beat it. I have trouble embracing the term “chronic”… Thank you for the link and your good thoughts…

    • Knot Telling says:

      I try to avoid “terminal”, even though metastatic breast cancer is incurable and will result in death unless something else gets me first.

      As I said, I’m not sure about “chronic” either, but it beats hell out of “terminal” in my book.

  2. I am glad to read that there is some work to come up with a sensible and meaningful way to delineate among these different states of breast cancer.

  3. Shelli G. says:

    Survivor- a term you can use the day you die of something other than cancer. I, too, have trouble with the term “chronic”. It diminishes the fact that this disease is terminal, and while that makes some people feel better about it, I fear it will diminish the way the disease is seen, particularly by disability agencies.

    • Knot Telling says:

      That’s a good point, Shelli. Not living in the US, that is an aspect I hadn’t considered.

      I agree that “chronic” isn’t perfect. I think it’s the last remaining tatters of my own denial that is keeping me from “terminal”. That, and the fact that I’m not actively dying right now today.

  4. Maxine D says:

    Yes, words are very powerful, and it is good to see some thought and discussion about terms for use of those who have experienced/are experiencing cancer in what ever form or stage.
    Blessings and prayers

  5. Kayleigh says:

    This was so thought provoking and well written!

    I have trouble w/the term survivor too, tho I use it sometimes for ease. Somewhere I read about people using the term “cancer veteran” instead and I like that — it encompasses everyone who has had cancer regardless of stage or prognosis, I think.

    I was stage IIb, so I am not metastatic…but they thought for a several months that I was. During that time the term “chronic” would have been consoling to me, and I think most accurate. Tho I can totally understand what the other commentor said about using the word terminal…my emotional preference would have been chronic.

    Yes, you are so right, words DO have power…and I think as much as we want/need universal labels to increase understanding sometimes we have to choose/create our own specific to our individual needs. There should be more consciousness about all this, as you wrote so well. Thank you for that.

  6. bethgainer says:

    Excellent, insightful post. I, too, have problems with words in the cancer realm, especially survivor. I don’t know what to call myself; “thriver” has been one, but now I just say “self-advocate,” which is what I am. Wonderful post!

    • Knot Telling says:

      Thank you for the kind words, Beth.

      I’m not thriving, just sort of hanging on, so “thriver” doesn’t appeal to me, but I can see how it would to many people.

      I wish I was a “self-advocate”. I don’t have the energy.

  7. Sarah Bucket says:

    Thanks for the post: always a struggle with the terminology and, like you, I want the right word. Still don’t think we’re there, especially with breast cancer, which doesn’t have an obvious “cured” stage (mets appearing 10,15, 20 years after original manifestation in some cases).

    Chronic doesn’t do it for me either. The only chronic response I have (Stage IV breast cancer with bone marrow mets) is treatment rather than disease induced. Perhaps remitting, relapsing rather like MS terminology needs to to be included. The vocabulary needs to acknowledge the terminal nature of some diagnoses without in any way belittling them.

    As with metastatic research, we’re not there yet.


  8. eak13 says:

    I don’t know what the right words are either I don’t call myself a survivor because I was living before diagnosis. I don’t say battling no war here… I simply say I am dealing with cancer . It works for me instead of trying to find metaphors that I can’t relate to.

    • Knot Telling says:

      Hello, eak and welcome to Telling Knots.

      I don’t say “battling” either because I choose not to expend my energy on violence. I say “living with” cancer. It’s much like sharing space with a difficult roommate.

  9. nancyspoint says:

    I’ve written a lot about words too. Words we choose and labels we sometimes mindlessly slap on matter a lot and not just in Cancer Land. The trouble is sometimes there just isn’t a good word that fits. I don’t like survivor all that much either, but I do use it. Thanks for the link. I’ll be heading there now.

  10. Ann says:

    It’s pretty ridiculous that there aren’t clearer words to describe the various stages of living with cancer. I finished with active treatment for stage III, so by those terms that puts me somewhere in between cured and chronic, but I don’t know which and I don’t know when I’ll know. I haven’t yet found a way to answer questions about my status. Everyone seems to think there’s a definitive test doctors can do to tell if I’m cured. Your piece made me realize there really aren’t appropriate words to use to answer the questions. I don’t know whether to evade the question, give a simple yet inaccurate answer, or give a little mini cancer lesson.

  1. 2 June, 2013

    […] I totally get that (see my post last year on the topic – Reframing Cancer Survivorship).  Knot Telling  contacted me last week to let me know about her latest post on the terminology of cancer (I […]

  2. 2 June, 2013

    […] published a post about ways of referring to people with cancer at different phases of the disease (Cancer Words), mostly based on an article and a letter in the Journal of Clinical Oncology. (The link will take […]

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