"The Language of the Journey" and related matters

[Mike]

Terry Kavanaugh in England wrote me as follows:

Hello everyone. I’m involved with some research with Liverpool University, UK and I would be grateful if some of you would consider helping me out with it.

There are two subjects being looked at the first is called the ‘Language of the Journey.’ As you all know a diagnosis of cancer is not only a life-threatening disease but it also brings with it a new language. The language of cancer is made up of many different metaphors and euphemisms. We use powerful combative language to describe it. We talk about cancer victims, about fighting cancer and about how cancer invades the body. Cancer patients look for ways that language is used to include and to exclude them.

We often read in obituaries of ‘A long battle bravely fought,’ or "He lost his battle with cancer." What I want to know is how does/has the language of cancer affect/ed you? What are the words you hate? Do you feel certain words stigmatise you? What about Journey, or survivor, victim or being called brave. Do you mind being called a user a consumer stakeholder, etc. Does cancer define you. Im sure you get my drift.

The other project being looked at is ‘Looking good feeling good.’ (When the effects of cancer are visible.) Which explores the impact of social appearance. Having to wear a wig, or breast prostheses, etc. [In the case of men and PCa this might include the catheter issue, an excessive need for pads, etc.]

You can post your thoughts on this site or email me directly at [e-mail] . I would be grateful for any input you would be willing to make. Keep Well, Terry

[I would suggest that we put all comments for Terry K. on this forum. That way we can all learn from the experience while helping Terry K. too.
Mike]

[Leah]

Mike,

This is long, so feel free to edit it.

I have long been interested in the subject of language and cancer and have written about it on my blog and elsewhere (prostatecancerblog.net). And I have some more things in the pipeline. This is a recent posting of mine on the subject (6/11/08).

The Language Of Cancer

I just came across a question asked by someone in a PC forum: What does “biochemical failure” mean? This made me thing about language and cancer. And how we are affected by the words we use.

It amazes me that doctors still use the word *biochemical failure* to refer to a recurrence of prostate cancer. It’s an ugly term. And it affects how the patient feels about himself. I know that when we got Ted’s positive PSA result post surgery, I was depressed because the word “failure” kept on going round and round in my mind. I don’t like to fail at anything. But we had gotten an “F” in prostate cancer.

“Recurrence” on the other hand, is almost good word. It sounds like an old friend has come back to stay with you. (OK, it’s a stretch.)

And may I ask, what do they call death if recurrence is “biochemical failure”? “Biochemical catastrophe,” maybe? “Biological Armaggedon”?

Seriously, the “language of cancer” is a major issue that I’ve been thinking about a lot and it deserves some serious attention.

For one thing, language affects the way a patient feels about himself. A writer named Susan Sontag, who struggled with cancer for years, wrote a book called “Illness as a metaphor“, which described how cancer has been demonized, in part because of the language associated with it.

We would all be better off we we called cancer a “neoplasm”, because that’s the scientific name for it. “Neoplasm” means a new growth. Doesn’t it make you feel better to think that you have a neoplasm in your body rather than a cancer? Besides, the word “cancer” means has no scientific value. It means “crab”, because some Greek thought it resembled one.

Other diseases have undergone verbal makeovers. “Leprosy” is now “Hansen’s Disease”. And “senility” has become “Alzheimer’s.” I think these changes have helped the sufferers of these diseases maintain some dignity.

And “malignant” has to go. It implies that something evil resides within your body. And for all we know, you could be responsible for it. This is atrocious. There are plenty of worse diseases than cancer, but people still dread it more than anything else. It’s radioactive.

Why? I believe this is partly because all sorts of terrible things have come to be associated with cancer. And this is something that can be changed.

For example, In general parlance, we refer to something evil or noxious as a “cancer” that needs to be excised or uprooted. So of course people think of cancer as an “evil” disease, worse than any other. But this of course is not true. It’s all in the head.

I believe the terms we use to describe cancer makes us feel bad about ourselves when we need not. It becomes a very personal issue. Very unfair. This doesn’t happen with other diseases, except maybe AIDS.

There are a lot of people with prostate cancer who think of their illness as a “beast” to be slain. But his metaphorical relationship doesn’t work for everybody.

My father had a very bad stroke, and nobody called it a “beast” or developed any “personal relationship” with it. It was just something life-threatening that had to be overcome if possible. I don’t think heart disease is taken personally either.

I hope what I’m saying will make people have more compassion for themselves and maybe feel some relief. It’s hard to exist in a perpetual state of war. What really struck me about the language of cancer was reading a long article about how tumors use every trick of evolution to outwit us, “Cancer as an Evolutionary and Ecological Process“, (Lauren, et al., avail. on Medscape). But it also described cancer as a “neoplasm”, not a “beast”, and I saw it for what it is: a pathetic bunch of damaged cells that are just trying to do what we all want to do, our biological imperative, which is to survive and reproduce. Unfortunately, the only thing around for the cancer eat is us.

The article described the relationship between the “host” and the cancer alternatively as “parasitic” and “a mutual association”. Now doesn’t the latter sound better? And we have the last laugh: If the cancer kills us, it kills itself, too. And leaves no fond memories.

Compare our lives with the lives of these cancer cells, which are just mindlessly reproducing, (asexually) while we are having a good time on earth.

I must tell you, and I know a lot of people won’t like it, that after reading the article I referenced, I could no longer view cancer as the “Beast”. It seemed ridiculous to be waging war with a bunch of cells. In reality, the cancer is not evil, it’s neutral, and it has no control at all over it’s life.

For example, in the ordinary course of things, a normal cell may turn itself into either a stem cell or a sperm cell. But it’s not a choice between good and evil, it’s molecular biology. If you want to blame somebody for your cancer, try your ancestors. They probably gave you these mutated genes. Or carcinogens in the environment. The government, maybe, for allowing all that pollution. Or you can vent at the medical professionals, many of whom well deserve it. But this mindless bunch of damaged cells who are just following the rules of evolutionary biology, it’s hard to even consider them evil.

Anyway, since I have read this article, my attitude toward cancer has changed. I no longer regard it as an evil enemy. *And that makes me feel a a lot better.* It’s more like fate has brought the two of us together, for better or for worse. And, although, we have made a lot of progress in destroying our unwanted “companions”, we still have a long way to go before we can rid ourselves of these “guests”. But we must keep at it until we succeed.

[Mike]

Leah: I have no intention of editing this. Hopefully it will provide Terry K. with the beginnings of what he is looking for and stimulate others to conbtribute.

[Leah]

Have to add a few things:

DETEST the word "cancer survivor". Sounds like you're treading water or hanging on by a thread.

"Salvage radiation". Sounds like something out of a junkyard.

As far as creative uses of language. Dr. Jonathan Oppenheimer, a PC pathologist who writes a blog, has proposed a solution to the "overtreatment" problem. Cancer universally invokes dread in people and so they naturally don't want to leave it untended. So Dr. O. suggests using a different, less threatening term for low-grade prostate cancer. I don't remember it offhand ("Tubular" something), but I am going to write about this for the blog today, so stay tuned.

Leah

prostatecancerblog.net

[Steven Hess]

Leah

"Sticks and stones (and cells) may hurt my bones,
But words will never harm me"

Applying political correctness to cancer isn't going to make anybody feel much better.
A long-time friend of mine was fond of an admittedly coarse saying, to wit: "You can't paint a turd" and I think it applies to cancer.

I do find it interesting than when one reads the obits, a cancer death is invariably reported as "after a courageous battle with...." It appears that in other diseases, such as major depression and schizophrenia that have death rates of upwards of 10%, a terminal case
is decidedly less heroic.

[PaulC]

I think Dr Oppenheimer is onto something with the idea of calling low-grade prostate cancer something other than "cancer". After all, there are probably millions of men who are walking around with neoplastic changes that would be graded Gleason-4 or lower if they were ever looked at, but everybody would be reluctant to classify their disease as "cancer", even though that's not a technically incorrect term for it.

[Steven Hess]

Paul
That proposal rings of danger. Sure " Prostate Sniffles" would be less alarming but
those tuning into sites like these know that cancer grades are often upgraded
on pathology and biopsies can easily miss an area of higher grade cancer.

One thing "nice" about a word like "cancer" is that it is a serious word for a condition that typically calls for a serious response. It is, in a word, attention grabbing and it should be.

[Leah]

I agree, and here is an excerpt from what I just hastily posted on my blog: "When Cancer Isn’t Really 'Cancer'”. I wrote an introduction to the topic and then cited Dr. Oppenheimer's opinion piece in its entirety. A must-read. I'm glad Terry Herbert pointed me to it.

Prostatic Tubular Neogenesis– A Letter to Colleagues

The most common significant finding made by contemporary pathologists on prostate biopsies cannot be adequately described by “tumor” (Greek: swelling), “cancer” (from the crab-like extension), or “malignant” (threatening to life or tending to metastasize). I propose the terms “prostatic tubular neogenesis” (creation of new epithelial tubes or acini) and “potentially malignant” to better describe the microscopic findings that we have in the past labeled “adenocarcinoma” “cancer” “tumor” and “malignant.”

Criteria are evolving that allow for the active surveillance of the common microscopic neoplastic findings we identify. As these histological criteria .... and increasingly molecular criteria ...evolve, we will better define which of our findings are potentially life threatening and which are indolent.

I suggest that the terms “cancer,” “adenocarcinoma,” “malignancy,” and “tumor” be avoided by on pathology reports unless there exists clear evidence of Gleason pattern 4, more than two cores are involved, or if total lesion length is more than 3mm. The term “tubular neogenesis” followed by an explanation, can better serve the discussion between physician and patient that must follow. As our understanding evolves, criteria for identifying life-threatening prostatic alterations on needle core biopsies in conjuction with serological or urine-based molecular assays, or new non-invasing imaging techniques will allow the more aggressive terms to be used without fear of inducing unnecessary medical intervention.

. In the meantime, let us see that our diagnoses are placed in context so that we are not accomplices in advising therapies that are worse than the disease. Primum non nocere.
(

[Leah]

My proposals are not politically correct or euphemisms, at least not most of them.

"Neoplasm", for example, is a more scientifically accurate term for cancer. I just saw a clinical trial that was recruiting people with "prostatic neoplasms".

I once posted this piece about language on PPML and it generated a very lively discussion. A friend of mine, Manny R., who taught at Cornell Med School and ran a lab, wrote me about "biochemical failure": "This is a term that has unfortunately escaped the lab". Most patients don't understand the meaning of it anyway. *Tell me what you think it means and we'll put it to the test.*

Then there are many politically correct terms that serve a purpose even if they are grating to the ear, so I'm not a purist on that. As a society, I believe we are better off calling people "mentally ill" rather than insane. People are apt to treat the "mentally ill" better than the "insane" -- the former word carries less baggage.

"Alzheimer's Disease" is a pain in the butt to say but I wonder if it might have resulted in better treatment for the elderly.

Another example: my husband and I don't see anything wrong with calling black people "black", we don't associate it with anything negative. Nevertheless, I use "African American", which is really cumbersome, because I believe over time its use has given more dignity to and lifted up black people. Black folks took the initiative in redefining themselves, in choosing what they wanted to be called, and I think it made a difference.

Finally, a man in a PC group recently complained about the use of "erectile dysfunction" as a euphemism for "impotence". I find ED a more useful term because it covers a broad spectrum of disorders -- and most of the time sexual function is not black or white. Some people are, shall we lay, more impotent than others.

Take care,

Leah

[Steven Hess]

Some people are, shall we lay, more impotent than others.

You win the Freudian slip of the day award . :)

I will buy the "insane" terminology but no one has used that seriously for decades.
Mental illness carries a stigma no matter what you call it. I work in a psychiatric practice and you can paint it any way you wish but it will take more than a friendlier descriptor to alter perceptions. Sarah tells new patients (where appropriate) that their brain is ill to try and help de-stigmatize mental illness. Likewise with AIDS, using any other four letters won't change the perceived "nastiness" of the disease state. Prostate cancer has one thing going for it, it is a disease of adults and overwhelmingly older adults so we should be able to handle the terminology as long as it is clear.

At the risk of serious digression, I was born in Holland, spent two years in a Nazi concentration camp. My twin sister and I were among a handful of children under 15 to survive. I am an American; no adjective or modifier needed or wanted. Our culture of victimization does not serve us well.

[Kathy Meade]

Two quick thoughts.

I hate the word cure for cancer. For a doctor it means no apparent cancer or good probability to be cancer free for 5 or 10 years. For a patient it means my cancer will never come back. If the cancer comes back the patient is often angry and feels as if they have been mislead.

The other phrase I hate is when I hear the patient failed the treatment. Shouldn't it be that the treatment failed the patient?

[Kathy Meade]

Two more.

I do not like to hear patients called consumers. The US government does that under certain situations.

I was an observer of a recent discussion about what to call people who participate in clinical trials. The women did not like the word subject.

[Steven Hess]

Kathy
Absolutely right on. We do Clinical Trials and, as you know, every word of recruiting ads needs to be vetted by an IRB (Independent Review Board). I had to jump on tables, kicking and screaming recently when they insisted we use the word "subject" for "participant"

They finally relented. "Subject" is an awful term. We use "Volunteer" or "Participant" or "Patient"