The Power of Words: Oncologists, Attitudes, Statistics, Hope

When I was originally diagnosed with incurable cancer 27 years ago, it was my primary care doc who—before HIPAA privacy was a thing in the U.S.—told my father that I, a newly married twenty-eight year old at that time, had six months to live.

Six. Months. To. Live.

Not five, not fifteen. Six. Brilliant mind; how did he know?  He could have said six months until death; the statement ends up meaning the same thing.

Back then, it was common for physicians, especially treating oncologists, to assign a number or range on how long a patient had left on the planet.  In diagnosing an advanced or otherwise life-limiting, so-called terminal disease, they also became the deciders of life expectancy.

Back in 2012, Sweden’s esteemed Karolinska Institutet published a paper that looked at a large amount of data, across a number of institutions comprising 500,000 newly diagnosed cancer patients.

The study revealed a suicide rate twelve times higher for this group than the population at large. These lives were taken soon after diagnosis, not during the emotional and physical process of treatment or progressive disease itself.

The Power of Words

Nowadays, most oncologists steer clear of predicting life expectancy. They realize the potential harmful emotional impact, and how such statements affect quality of life.

Moreover, most oncologists responsibly use language like ‘no evidence of disease’ and ‘remission’, as opposed to ‘cure’.  Not long ago, a survivor would reach a milestone, say five years in remission, and would be congratulated on being ‘cured’.  In my view, ‘cure’ is not a helpful word, as I have written about here.

Delivering News Based on Survivor Needs

It is a responsibility of oncologists—to the extent patients are interested (not all are)—to discuss statistics, and to prepare patients and families for what might transpire.

There are statistics and clinical experiences that an oncologist should share on an as-appropriate basis.  I will go out on a limb to guess that the vast majority of folks reading this post are not the passive type; rather, followers here fall into the more forward-leaning, get-me-all-the-data-you-got side of self-empowerment.

A Specific Dilemma

Last week I received a letter from Shona in New Zealand. She has metastatic disease, and has granted permission to use her first name. Her oncologist consistently tells her she is ‘doing well at the moment, but her current drug regimen is destined to stop working at any time’. Her physician has informed her that there is nothing she can do on her own to improve her prognosis or overall situation.

Shona has been focused on a clean diet, regular exercise, stress reduction techniques, and a number of additional and sensible activities that have become part of her ‘new normal’ lifestyle. Whether this ultimately extends her survival, or otherwise positively impacts her underlying cancer, we will never know for certain.

That these things she has incorporated into her life give her a sense of control, hope, and have dramatically improved her quality of life, are measurable by, and for, her alone. She plans on being an exceptional responder—a radical remission.  Who can responsibly deny her this thinking?

Balancing Statistics with Hope

There is a difference between providing false hope for someone who should be—just in case—getting their affairs in order, as opposed to supporting patients and survivors in a way that goes beyond statistics for their particular disease.

Oncologists are not gods. They have no true way of predicting life expectancy. We are all unique. And words do matter.

Statements designed to allow people to ‘tie up loose ends’ and ‘say goodbyes’ can be profoundly powerful in the category of unhelpful. A  distraught patient on the receiving end of unnecessarily negative dark predictions and attitudes from an all-knowing messenger—some grim reaper disguised as an oncologist—can be more life-threatening than the diagnosis. The Karolinska Institutet study bears this out.

Life is a Terminal Condition

You may have six or six-hundred more months to live.  None of us know for certain because, while life is a blessing, a miracle, and a gift, it is also a terminal condition. None of us makes it out alive. This is a certainty.

We must live in the present and feed our body and spirit in ways that support health creation, in service of disease prevention, disease management and, overall, to ensure our quality of life. No self-proclaimed prognosticator of human longevity (under the most challenging circumstances) should be able to steal this profoundly personal and inalienable right.

Shona is Different—You are Different

I have no idea what course Shona’s disease may take. What I do know about her is that she will continue doing the things she knows will improve her overall health, and bring quality to her life.

Shona is strong.  She refuses to get hung up on statistics, or unnecessarily negative and unhelpful input from her oncologist.  She is hopeful, but certainly not naïve about the challenges still ahead.

What she is absolutely clear on is that, though words are powerful, she will select those words, phrases, and statements which influence her lead role in her personal journey. Like each of us, Shona is an n of 1.

Join my private Facebook Group Anticancer Thrivers—a community forum for achieving your best life while living with cancer.

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