Rethinking the Language of Cancer Diagnosis

Steffi Mac //

Recently, I was introduced to a young doctor who had survived cancer and who is now working on Covid-19 duty. I wanted to interview her in order to present her narrative in my online initiative for cancer survivors, The Marrow Story. I was also trying to understand the health care system of my city (Ahmedabad, India), its challenges and triumphs. I was curious to find out how this doctor was managing, given her health history and resultant compromised immunity. She explained what they’d been doing as front line workers: the hope and despair of it all. I could see that she’d come a long way post-cancer, and her eagerness to serve others during these trying times fascinated me. “What cancer did you have?” she asked. “Leukemia,” I said, “I had to have a bone marrow transplant.” “Oh, I am a nobody before you. I had the good cancer,” she giggled.

I froze. Here is a doctor who had cancer, who is now serving the community in a role that puts her at particular risk, but who happily believes that her cancer was ‘good’; that somehow her narrative doesn’t stand a chance before mine, that her struggles with chemotherapy and radiation are not ‘as bad’ as mine have been (presumably) and that the cancer I had casts a formidable shadow over hers. Curious, I asked where had she picked up such a phrase and how did she come to embrace this characterization of her diagnosis? She said, “I panicked when I was diagnosed and the doctor said it. He was trying to lend some hope.”

The “sunny phrase” (Briggs) is often used by doctors and health professions staff to provide some consolation to a patient who has been diagnosed with a life-threatening disease such as cancer. Through this article, I try to evaluate the use of such phrases that gain circulation in the medical community, the impact they have on the patients/survivors, and their contribution to a larger discourse about the taboo and stigma associated with cancer.

Breaking bad news is one of the challenges that physicians face every day. “Historically, medical education has placed more value on technical proficiency than communication skills” (Monden et al.); “this leaves physicians unprepared for the communication complexity and emotional intensity of breaking bad news” (Vandekieft). While one long-term consequence of this inadequate preparation might be doctors emotionally disengaging from their patients (Franz and Murphy), there exists another possibility — that of young doctors picking up phrases from their highly experienced colleagues who are ostensibly better at breaking bad news.

The phrase “good cancer” seems to be the result of such an exchange of notes in the medical community. “Derided by some survivors and embraced by others, the phrase “good cancer” surged in use as cure rates rose for some malignancies, pushing the upbeat description into the fervent world of cancer language” (Briggs). The phrase is usually used for cancers that have a higher recovery rate (e.g. breast, thyroid, Hodgkin lymphoma, testicular). Yet while this phrase is meant to afford patients emotional solace, very few patients find it comforting, and most see it as an assault on their condition (cf. Briggs).

The following example is representative of the way many patients feel: Lia, a Hodgkin Lymphoma (Stage IV) survivor, published a post on Instagram about the phrase, deeming it “demoralizing, belittling and contradicting.” Her post garnered resounding reactions from survivors and current patients, who replied that the attempt to provide solace through the “sunny phrase” has gone as far as “it is the best cancer to shop for” — a clearly offensive formulation.

While protocols for breaking bad news (e.g. SPIKES1) have been introduced to help clinicians, “language is involved but is not the primary focus of attention” (Franz and Murphy). One can memorize the steps, but a lack of training in the language of comfort barely helps the cause.

The phrase “good cancer” is also destructive because it implies there is a “bad cancer” — and this polarizing of conditions leads to negative health outcomes for those who experience a “bad cancer.” Lung cancer, for example, is considered to be a particularly stigmatized disease. The tag isn’t connected only to higher mortality rates. Research conducted by Dr. Jamie Ostroff, a clinical psychologist with Memorial Sloan Kettering, states that “half the patients with lung cancer have had an interaction with a health care provider – not necessarily a doctor – that they perceive to be stigmatizing” (Grisham). Ostroff notes that many patients diagnosed with lung cancer feel guilty and uneasy because it is directly linked with smoking, in spite of the fact that many have never smoked or quit decades ago. 

Other research supports this polarized framing of lung cancer. In an article published in BMJ, a patient recounts how all lung cancer patients are stigmatized because of smoking — regardless of the actual etiology of their disease. After a surgery, where half his lung was removed, the patient went to see an oncologist for further treatment. On inquiring what may have caused the cancer, the oncologist laughed, “That’s obvious, through smoking.” The patient’s wife informed the doctor that they had been together since the age of 14 and he never smoked. In spite of that, he was classed as a smoker in his medical records and was asked “Are you still smoking?” by other health care providers during treatment.

The “bad” then is not just the cancer, but the person and the (presumed) habit. Nor does the stigma stop here. Lung cancer patients and survivors have gone on record to share how “neighbours and relatives stopped speaking with them” because the disease came from a “dirty habit” (Grisham). The way health-care communities and caregivers react to a disease define how civil society is going to perceive the disease too.

Corporate industry, in particular, has a distinct ranking of cancers. Elizabeth Simpson narrates the plight of those who work to raise funds for patients with lung cancer. In spite of the fact that other cancers have a lower mortality rate, these so-called “good cancers” walk away with the largest portion of the funding pie, because the patient is “not responsible for the disease” (Simpson). Lung cancer, by contrast, makes unending presumptions about the patient’s lifestyle and habits. Thus, while mortality rates are a contributing factor to the fate of the funds, the “good” and the “bad” descriptions that practitioners have (perhaps inadvertently) attached to the various forms of cancer have tragic influence on the research and development of therapies.

Even with the best of intentions, what physicians who use phrases such as “good cancer” don’t realize is that for the patient sitting on the other side of the table, receiving the diagnosis, cancer is always going to be experienced as bad, regardless of the expected mortality rate of their particular condition. The irony in language is while it defeats the lived experiences of some through such phrases, one must turn to it to make the change. One possibility could be to rephrase “good” and “bad” as “curable” and “treatable”. A cancer may not be precisely curable (the term refers clinically to non-remission after five years), but it can still be treated, affording a patient a reasonable quality of life. “Curable” and “treatable” can lend the patient the same hope as “good cancer,” but crucially, without downplaying the pain a patient is going to go through — because chemotherapy and radiation, among other treatments, are still going to hurt. Embedded in language is the healthcare professional’s understanding of pain, sensitivity, comfort and care that every patient about to embark on a difficult treatment looks for (and usually finds). Clinical language has the power to provide solace while still maintaining the dignity of each lived experience, well beyond the simplistic binaries of good and bad.


Dr. Steffi Mac (Ph.D) is a leukemia/BMT survivor, Tedx speaker, author (That Girl in the Black Hat)  and lecturer. She is the founder of The Marrow Story, a platform that publishes narratives by cancer survivors and promotes bone marrow registration. 


Footnotes

1 SPIKES is a six-point protocol to help physicians break the bad news to cancer patients. It is developed by Baile WF, Buckman R, Lenzi R, Glober G, Beale EA and Kudelka AP.


Works Cited

Bill, Briggs. “Good cancer? Views vary on a sunny phrase.” fredhutch.org. Fred   Hutch News Service. https://bit.ly/2VniLAP

Chapple, A, et al. “Stigma, Shame, and Blame Experienced by Patients with Lung Cancer: Qualitative Study.” BMJ, 2004, pp. 1-5. BMJ, doi: 10.1136/bmj.38111.639734.7C.

Franz, Berkeley, and John W. Murphy. “Reconsidering the Role of Language in    Medicine.” Philosophy, Ethics, and Humanities in Medicine, vol. 13, no. 5, 2018, pp. 1-7.

Grisham, Julie. “Understanding the Stigma of Lung Cancer.” Memorial Sloan Kettering Cancer Centre. MSKCC.org. https://bit.ly/2Ag7YkU

Monden, Kimberely R, et al. “Delivering Bad News to Patients.” Baylor University Medical Journal Proceedings, vol. 29, no. 1, 2016, pp. 101-102. https://bit.ly/38aERM5

Simpson, Elizabeth. “Breast Cancer Gets More Attention – but is that Fair?”pilotonline.com. The Virginian-Pilot. https://bit.ly/3eHM88T

Vandekieft, Gregg K. “Breaking Bad News.” Am Fam Physician, vol. 64, no. 12, 2001, pp. 1975-79. https://bit.ly/2Vqtk6y


Cover Image Credit: Rafael Lopez

One Comment Add yours

  1. Francis Christy says:

    Indeed good article to have a new dimension in relationship between doctor and patient.

    sometime medical professionals use those terms to make layman understand about the recovery rate or chances of survival … Or to may be to tell the patient that ” you are lucky/ little blessed to have this category ( good – as per your article ) !
    And the patient ‘s dilemma is to understand –
    How can someone be lucky to have cancer ???

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s